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Suffering in Silence: Denise Jacobs on Surgical Mesh "an unreasonable and substantial risk of illness or injury"

Denise Jacobs, Injured Mesh Patient

By DENISE JACOBS, CRNA, ARNP

 

SEPTEMBER 9, 2011

Dear Dr. Shuren, Dr Lerner, CDRH members, and Obstetrics and Gynecology Medical Devices Panel,

Thank you for inviting us here today so that we can voice our opinions and experiences about transvaginal mesh (TVM) used in pelvic organ prolapsed (POP) and stress urinary incontinence (SUI) repairs. I have no financial incentives to disclose.

I am speaking as a nurse practitioner and as a patient who was seriously injured by synthetic surgical mesh. I am interested in promoting patient safety and informed consent, which is not possible without premarketing randomized clinical trials (RCT’s). I spoke at the Institute of Medicine (IOM) last year when they met to evaluate the FDA’ s 510(k) clearance process and I want to thank the committee for recognizing that more emphasis should be placed on patient safety. I commend Public Citizen, a consumer advocacy group, for its recent petition to the FDA and HHS requesting a ban on transvaginal mesh for pelvic organ prolapse (POP), backing up their stance with a well-researched and written paper(1). The FDA’s 510(k) clearance process has allowed thousands of people, who may be expendable to industry, but who are not expendable to their families, friends, and communities, to be seriously, and sometimes permanently, harmed.

The 510(k) process has failed American people when it comes to synthetic surgical mesh, especially with the dramatic spread of new ways to use it, one-size fits all “mesh kits” and newer instruments used to place it.

Some mesh proponent surgeons disagree with the FDA’s conclusions regarding the increased warnings for transvaginal mesh used in POP. They opt that the FDA is misleading the public into believing that TVM surgery has more risks than traditional native tissue repair but that is not really the issue(2). The issue is the damage and pain inflicted by the mesh itself. These surgeons even state in their paper that “The risk of mesh erosion is unique to repairs utilizing mesh, and does not exist in traditional non-mesh pelvic surgery”(3). This is exactly the reason I propose that mesh used for SUI should have the same increased warnings as mesh used for POP and that ALL surgical mesh should be reclassified to Class III products. Doctors and surgeons must realize that this is a MEDICAL DEVICE SAFETY ISSUE, not a doctor practice issue. The fact that the Government Accountability Office (GAO), the Institute of Medicine (IOM), and Congress’s Special Senate Committee on Aging have all been compelled to look into the situation is an indication that there are severe problems with it.

One of the reasons for this meeting is to help determine if TVM for SUI should have the same increased warnings placed on it as TVM for POP. My first response is “You must be kidding! Of course, it should!”. The problems and pain from synthetic surgical mesh placed beneath the urethra are no less than those encountered when mesh is placed elsewhere in the pelvis. When a sling is “too tight” or in the urethral wall, it can cause severe urinary symptoms such as retention, horrible urgency and frequency, and painful bladder or urethral spasms, and repeated urinary tract infections (UTI’s).

Some doctors think that snipping the mesh in the middle beneath the urethra will “fix” the problem but then the ends are left free to migrate or fold back on themselves. Women I know who have had their mesh “released” in this way just ended up with other, different problems that resurfaced later on. No studies that I am aware of address the best way to handle this and there doesn’t seem to be much discussion on it in the literature. When mesh erodes into the urethral wall or damages a nearby nerve, “unbearable” is a good word to describe the 24/7 type of pain felt that increases every time that person urinates- the kind of pain that gives one goosebumps and makes one shudder.

“Meshies” are mesh-harmed people who coined the term, “ECP, which stands for “excruciating crotch pain” and describes the “kicked in the crotch by a horse” feeling resulting from a damaged pudendal nerve or mesh that has adhered to the pubic bone. When mesh is through your obturator muscle, a muscle you previously never realized that you had, then you suddenly fall easily, have constant inner thigh and groin pain, difficulty walking, and always seem to be off-balance. And that’s if you are one of the lucky ones who can still walk without a cane. Your inner thighs feel so weak, shaky, and painful that you can only go from sitting to standing with much difficulty and you can have a stabbing “ice pick” type of sensation with each and every step. You can have increased pain with sitting or any increased activity, including sex.

Women with TVM for SUI can also endure repeated surgeries, invasive office procedures, and months or years of pelvic physical therapy, just like women with mesh for POP. All of these horrific problems from SUI mesh! Who is protecting these women? Where are the premarketing trials? I strongly urge that adoption of the same increased warnings that POP TVM received on July 13, 2011, be extended to TVM for SUI.

This meeting is also about whether mesh should be reclassified from a Class II medical device to a Class III device, thus requiring premarketing clinical trials and postmarketing follow-up. My answer to that is that it already should have been classified that way. Class III devices are those that are deemed by the FDA to present “an unreasonable and substantial risk of illness or injury”(4). If surgical mesh, including newer ways of inserting it, using new and different instruments, had already been a Class III device, then adequately designed premarketing clinical trials would have already been done and many innocent people would have been spared physical infirmity, torturous pain, misunderstanding by medical professionals, sexual dysfunction, and emotional distress, including PTSD and clinical depression, related to their unexpected and severe health problems and pain. My opinion is that ALL surgical mesh, whether it be transvaginal, abdominal, for hernia repair, or any other use should be reclassified to Class III and be required to undergo premarketing trials and have post marketing follow-up.

I would like to address vaginal mesh erosion. Eroding mesh is an implanted human torture device that can cause HORRIFIC pain long before it can be visualized or felt during a pelvic exam or seen during a cystoscopy.

Of course, mesh is not well visualized with CT Scan or MRI and the use of ultrasound to visualize it has only been more recently investigated (2010) and written about in the literature(5). Some meshies describe themselves as having been mutilated by mesh or having been raped by it. They describe it as a mesh monster. To every doctor who has ever told their patient that mesh “doesn’t cause pain” I say “Shame on you”! Mesh kits use instruments that literally bore blindly through tissue and everyone does not have the exact same anatomy.

I am here to tell you that if mesh is anchored through a muscle, next to or through a nerve, eroding through pelvic tissue, in the urethral wall, or adhered to the pelvic bone or obturator fossa, it most certainly CAN AND DOES CAUSE PAIN! There can also be pain from the increased local inflammation and resulting swelling. For whatever reason, some doctors seem to treat this part of a female’s anatomy as if it has no feeling or sensation. They talk about removing vaginal mesh or sewing over a skin flap in the office as if one is going in for a teeth cleaning.

They would like you to believe that vaginal mesh erosion is not really that big a deal and it was recently described by a doctor in a news report as “peeking through the tissue”(6), a cute and non-threatening way of describing a complication that many women find physically and emotionally devastating. Just imagine if you had synthetic mesh “peeking” through the skin in your armpit, neck, or face. People would be mortified! Imagine having a screen like mesh eroding through your armpit causing constant irritation, stabbing and grating pains, and muscle spasms every time you tried to lift anything or brush your hair or drive, and constant achy pressure at rest. This is what meshies face every day, only it is in their pelvis and their privates. The disconnect with this concept alone is an example that shows that mesh should be reclassified as a Class III device.

Another area that requires further investigation is the severe foreign body reaction (FBR) that seems to result in systemic activation of the immune system that many mesh harmed people report. It has been said that polypropylene mesh is inert but the experiences of many people suggest otherwise. The activation of immune system then causes many other symptoms such as itchy rashes, boil-like lesions, generalized swelling and fluid retention with frequent complaints of a “pregnant belly look”, high blood pressure, and development or exacerbation of other auto-immune syndromes such as thyroid dysfunction, fibromyalgia, lupus, and diabetes. Blood clots leading to stroke, loss of legs, and death have also been reported. Where are the clinical trials on any systemic reactions to synthetic mesh?

In closing, as an injured patient and nurse advocate for patient safety and informed consent, I strongly believe that transvaginal mesh for SUI should have the same increased warnings as transvaginal mesh for POP. My opinion is that all mesh in the body is a medical device that is capable of causing severe and permanent injury; therefore, all surgical mesh should be classified as Class III devices and be required to undergo adequate clinical trials and postmarketing follow-up.

Thank you for allowing me the opportunity to speak my honest thoughts about this very serious topic that potentially affects so many people in such profound ways. I sincerely hope that more emphasis is placed on patient safety and informed consent than what we have experienced in the past.

Regards,

Denise Jacobs, CRNA, ARNP

REFERENCES

(1) Public Citizen Petition, Consumer Advocacy Group (August 25,2011), 1600

20th Street, Washington D.C., 20009, www.citizen.org

(2), (3) Prolapse Surgeons Network, Time to Rethink: an Evidence-Based

Response from Pelvic Surgeons to the “FDA Safety Communication: Update

on Serious Complications Associated with Transvaginal Placement of Surgical

Mesh for Pelvic Organ Prolapse” (August 5, 2011)

(4) FDA U.S. Food and Drug Administration Guidance Documents (Medical

Devices and Radiation-Emitting Products), Evaluation of Automatic Class III

Designation, Guidance for Industry and CDRH Staff, Section 207 (FDAMA);

Section 513 (f)(2) of the FDCA; 21 USC 360c(f)(2)

(5) Kobashi K, MD (2010) reported to Uro Today. Presented by Staak A, MD,

Baxter C, MD, Lee U, MD, Morrisroe S, MD, Kim J, MD, Rodriguez L, MD,

and Raz S, MD (May 29-June 3, 2010) American Urological Association

(AUA) Annual Meeting Impact of translabial ultrasound on diagnosis and

treatment of mesh related complications- session highlights. San Francisco, CA,

USA

(6) wCAX.com/HealthWatch: Warning about pelvic mesh (July 15, 2011),

Alexis Christoforous @ CBS News, http://www.wcax.com/story/15090619/awarning-

about-pelvic-mesh

6

 

173 Comments

  1. Amy Gezon says:

    Well stated Denise!

  2. CINDY says:

    Denise,

    I had my nerve block after the initial surgery back in sept of this year. The nerve block has not worked, and the Dr told me if it did not …they more than likely we will have to start talking about taking out the mesh…or at least part of it. The left side. It pokes me every time I walk to sit, and can be felt through my groin..( feels like a small mens comb in there)

    I still have severe hip, thigh, groin pain and my legs doesn’t work right since the surgery. It gives out on me frequently, or gets very tired and weak if I walk even less than a block.

    I have now lost my business, have no income at all, and will soon lose my home and my excellent credit rating. All that I had has now dissapeared because of the lies surrounding this product. Shame on the doctors ! Shame on the FDA.

  3. EJH says:

    You go Denise!!! Shame on the FDA, shame on the Dr.’s who minimize this, and shame on the manufacturers for deceiving us!!!

  4. Denise says:

    Dear Cindy, My heart truly goes out to you. Unfortunately, your story is one that I’ve heard over and over again-way too many times. At least your doctor seems to be acknowledging that it is the mesh. Many times women are told, “It’s not the mesh”, when, in fact, it is. Whether he/she knows what to do now remains to be seen. Do you still have insurance? I would ask this doctor how many mesh removals he/she has done. If it’s not something he/she is doing very frequently and is VERY comfortable doing, then I would not allow them to touch me. I know you are in pain but I don’t want you to end up with more problems than you already have. You need to get your medical records from the hospital or surgery center to find out exactly what type of mesh you have. Jane, you may forward my email address to Cindy so maybe I can help her more. Cindy, please contact me.

    Cindy and EJH… You are right… Shame on them. The mesh companies are like the Pied Piper, playing their beautiful music, while the FDA and doctors dance happily along, and the poor, unknowing patients are going over the cliff, one by one…..

    • Cindy says:

      Denise,

      I spoke to my lawyer this morning. He says we will not even have a case against the DR that originally put the sling in unless the dr that is going to take it out will testify that the dr that put it in was Negligent in some way. The doctor from Barnes Hospital said he has seen this many times and has had to take out alot of them.

      My doctor says we have no choice but to start taking out the mesh on left side. Jane, I will contact you asap. Would love to chat about this. will post more as I know what is going on . Not confident about anything at this moment. Cindy

      • Jane Akre says:

        Cindy-
        I completely understand you are in the middle of it – let me know when we can talk – I work with the lawyer to not harm you further, short of sending him/her the story in its entirety. As you can see from the website- many patients feel completely comfortable with Dr. Raz doing their mesh removal. my email is jeakre@gmail.com. Thanks Cindy and the best to you!

    • Nancy Hutchinson says:

      dear Denise—I am 2 1/2 yrs post op of pelvic transvaginal mesh surgery. When I went to my doctor for my one year post-op check up the internal was unbelievable painful–I cried for them to stop. The doctor said that the speculum probably just rub the wrong way-Hmm never in my life did I have a painful exam– they also told me that my tissue was thin and sent me on my way. The pain was so awful that I feared to go back for an internal for another year until I had no choice. I also experienced left groin-hip lower back and left leg pain very shortly after my surgery which has increased over time. I went back to my surgeon once again about 5 months ago — who is a top notch doctor for this procedure and when I told him about my groin pain he told me to just get steroid injections for the pain. I can not have steriods due to a reaction I get. I had called the day before my appt to ask if there was some pain medicine they could give me to enable me to get an internal—they said they don’t usually do that but to come in and talk with the doctor. When I explained to the doctor I can not have an internal due to the excruciating pain he did not offer me any other tests or options for pain control and was rather annoyed with me that I couldn’t take injections and I could have an internal without some kind of pain control he got annoyed and looked externally down there–I asked if things looked ok and he said its as good as it is going to get and walked out of the room—I felt humiliated. I then went to another urologist to check me out-(which I took pain meds before my appt and the pain was still unbearable. this doctor told me that the mesh had shrunk and was causing irritation and my pain. I had 2 bladder ultrasounds done that day and then she told me I needed to have a cystoscopy done to make sure the mesh did not erode into my bladder. I like this female urologist but feel uncomfortable with her doing the surgery because she said she knew my doctor personally who did my mesh surgery and was an excellent surgeon. She said that doctors have no way of telling which patients will have this problem. I don’t doubt that my surgeon who did the original mesh is excellent in his surgery skills but he really wanted nothing to do with me after wards when I came to him with a problem. He not only blew me off but when I got my records from that office there was no mention of me telling them how excruciating my internal was or about my hip/groin pain—all my records said is this patient refused an internal. I trusted this surgeon and thought he would address my post-op problems but he has not. Therefore I can not go back to him again–my trust has been broken. this is so frustrating because he is an excellent surgeon. I had problems from the get go. Could not urinate at all and 5 days later i had to go back to the ER for revision of the urethra sling. I live in the Philidelphia area and would like to know if you are aware of any good doctors in my area or the closest doctor who is excellent in removing mesh. I know it is a great deal harder to remove then it was to place and I don’t want to go to someone who is not very skilled in the removal–I don’t want bigger problems then I already have. Any suggestions of names of doctors will be very much appreciated. Thanks so much and Best wishes Nancy

  5. Carol Brock says:

    Jane Akre

    December 07,2011

    Hi Jane,

    Just found this site – and see I’m not the only person living with this kind of pain following the POP and SUI surgery . I had surgery in 2005 and have suffered ever since. My mistake, I didn’t say anything about the pain until 2008 to my primary doctor and she used the word Dysparenuia (painful intercourse) and I cried. There is help out there, I thought. I was not informed by the doctors that this could develope. On return to the doctor who placed the mesh in me claimed upon re-examination that he could not find anything wrong. I suffer with excruiating pelvic pain on my left side radiating into my lower back spine left side. I’ve had CT scans, a MRI and can’t seem to diagnose anything.I can’t stand or sit for long periods or walk. NO one can help me. I’ve been to three different OB-GyNs with the same thing, we can’t find anything. I feel as if a conspiracy with the doctors in this small town is taking place. They won’t go against each other. The doctor that performed my surgery said, [ “I created a garden salad” ] when he visited my room following the surgery. That was insulting to me. I had four surgeries in all. His humor was not as exciting to me, as it was to him. He said to my husband [” I made her as a 16 year old agin wink-wink” ( winking to my husband) ]. I’m the one living in a total miserable condition. Not only am I miserable, it seems as if the doctors can’t help either. AM I going to live this way for the rest of my life!!!!! I developed Lichen Scherosis following the surgery and had a vagnioplasty this September 2011.

    • Jane Akre says:

      No Carol- you are definitely not alone!! Unfortunately. Folks here can guide you to doctors and are very understanding about what you’re going through. I’m so sorry you’ve been suffering since 2005. As we say “Suffering in Silence” … in this case silence is not good. I know folks will jump in here to help you. No one should go this alone!!

    • beth says:

      I understand oh too well.I had triple prolapse .went to doctor.mentioned mesh.told her no mesh wanted vaginal colon prolapse fix and bladder tied up using my own muscle.the way they used to .when I came out of surgery I was in such intense pain I screamed from the waves of it flowing over me.they let me lay there for almost 3 hrs before they saw tha t tthe pain machine hadn’t been turned on.when the doctor came in she told me she put the mesh in.I told her that wasn’t what we discussed.she said just work with me and see if it helps.I had pain all the time.she saidoh I was just adjusting to it.then told her I lost pieces.dismisses that.these cut the mesh after seeing where I stated I felt like a knife was cutting me.few months later I was coming home and I was hit with such pain as if knives were stabbing me in my groin my bladder my back.my husband had to pull of the road he was so scared.I finally told him get me home just get home.I had pain meds and took them.it finally subsided 12hrs later.I went to her office.told her what happened.she examined me and proceeded to pull on something in me.my mom said my eyes went back into my head as I screamed.the muscle or bladder had stuck to the mesh and she just pulled it loose with anything to help with the pain.I told her then I wanted it all out she refused stated I had to deal with my pain issues. I no longer went to her.I tried find a doctor to take the mesh out here no-one would touch me.husband and I hadn’t had sex for yrs because of this.finally found one who did a partial because the mesh was pushing out.I though she was removing it all from our d discussion.she said she didn’t like doing that as she had to cut me open.to me wit h it in I am a time bomb.my life has been destroyed because of the one who did a wrongful sur ge Ryan.

  6. Amy G says:

    Your physician’s comments are revolting. What a sexist pig. Please look beyond your community I had similar experiences with multiple surgeons saying nothing was wrong.

  7. DJ says:

    Jane, I am here to help anyone who wants/needs to talk to someone/a nurse/me, who has been there, done that. I can answer and explain many things by talking with someone- that would take me too long to try to write out. I can help people understand their specific situations and problems. PLEASE let me know if anyone contacts you and wants to talk to me. I am more than willing to help.

    • Jane Akre says:

      Much appreciated Denise… you not only have personal experience but you are a nurse!!!

      • Kim Gregory says:

        I had a pelvic mesh sling put in about six years ago. I have been dealing with an extreme amount of pelvic pain. When I complained to my dr she said I had scar tissue. My worse pain comes when I sit for any period of time so I stand all the time. I have been avoiding drs for years because of my fear; a dr caused my pain. I finally went for a gyn check up two weeks ago, huge mistake. She told me slings can’t cause pain, and she tugged on the sling arms to show they were still attached. I have been in horrible pain since then! This is worse than the original surgery. I can hardly walk, I can’t spread my legs apart, I am in pain from my chest to my knees. I don’t know what to do, I’m afraid to go back to the dr.

        • Jane Akre says:

          That is unbelievable…. what a horrible human being. I will need her name, privately if you prefer. this person shouldn’t be a doctor.

        • meshfree says:

          This is terrible. And so wrong. She is evil and she has no idea. Your problems are mesh. YOU are not alone. I truly know exactly how you feel. RUN from that doctor.

          whatever you do, Do not have any revisions or clippings, that will make your problems so much worse. Research and Educate yourself.

    • My stomach swollen, my body hard gained weight ,weak all over Trimble,pee comes out little then stops then note ,feel have to go bad go a little ,standing up soak myself ,bed fast three. Monts tired all the time , have c,m,t ,going Monday too see if will take out bladder sling put in two years ago scares ,so week swollen tired stay hot ,nausha no energy so week. Please scared

      • Tonya says:

        My surgery was also in 2011, I could’nt pee. OBGYN was unprofessional anout following up and helping me, so I contacted an Urologist who did another surgery a month later to loosen things. 30 minute surgery that took 2 hours, and he had to call another of his colleugues in to see what the OBGYN had done. I continulously pee through my clothes as soon as I stand up. It’s just overwelming!

    • Judt Strozzi says:

      Denise, I’m going through this pain you talked about. It’s hard to explain it to doctors. For over two years I tried to get help. The doctor that did the surgery blamed it on every thing else, but the surgery. I had acute pain when I woke up from surgery, but the hospital and doctor did nothing. Know the pain is getting worse. It’s hard for me to walk very long. You find out family members don’t understand, and treat you like nothing has happened. You try so hard to keep going each day. I have a big story to tell, but it would take to long to type. It has affected my family life. I went through a second surgery to have the sling removed. All the pain is there, accept for the pulling of the sling. I’m on nerve meds and pain meds. I’m not getting any better. Do you know of any treatment? Judy

    • Bonnie m says:

      Hi my name is Bonnie September 6th 2016 I had a urethral mesh sling put in I have had nothing but problems tonight I ended up in the hospital they did a CT scan and they tell me I have diverticulitis which through studies of the mesh sling I feel that this disease was caused by the mesh sling f anyone knows any doctors that do the full mesh removal close to Decatur Indiana

    • Jill says:

      I saw this was a few years ago . I just had to have mesh repaired first of may my original surgery was in December. I am having severe hip, back and leg pain. Just wondering if anyone else has suffered these complications and what was done for you. Thanks

      • Jane Akre says:

        Jill- Just curious what you were told to convince you to have surgery recently… was it transvaginal or hernia?

  8. Kathy says:

    regarding the auto immune system. Over a year ago I developed Uveitis in my eye that will not go away. I had blood tests that seem normal. I do retain water. The opthmalogist can not explain why I have uveitis or why with treatment it won’t clear. I have lost some eyesight and due to treatment of the uveitis I now have one eye that is permanently dilated. I am hearing more about the mesh and the auto immune system. Uveitis happens because of a problem in the auto immune system. Where can I read more about the mesh implant and the immune system? I have had a pelvic mesh sling for over 10 years. thank you for this much apprecated article.

  9. Blanche Proctor says:

    How does one determine if a mesh implant causes her pain and discomfort? I was sure the mesh implant I had in 2009 with the DaVinci POP surgery was not the cause of my discomfort but I am not sure any longer.

  10. Denise says:

    Blanche, probably the best way would be to have a translabial ultrasound. The only problem with that is that so few doctors are doing it or know how to read it. Dr Raz and his team at UCLA were the first that I know of to develop and consistently use the technique. I’ve heard of one or two others. It is the only test that actually visualizes/can see the mesh. The problem is that most doctors don’t think there is an “issue” unless they can actually see or feel it during a vaginal exam or see erosion of the urethra or bladder wall during a cysto. Until one of those things happens they keep their head in the sand and just keep assuming that everything is a-ok no matter how hard you try to tell them that it is not. Blanche, if you send me an email (you can get my address from Jane A), I’ll send you some things that may help you.

    Kathy, for years doctors themselves have thought that mesh was inert, meaning that it doesn’t cause a systemic “foreign body” reaction. I even asked an allergist/immunologist about it several years ago who said, “but mesh is supposed to be inert”. Wrong! It’s only more recently being written about as a foreign body in humans. Also, Dr Ostergard has an article posted here in MDND that discusses it some.

    • Blanche Proctor says:

      Denise, I was just looking through my medical notes and realized that I had overlooked this. Am I too late?

      I am still dealing with pain but I don’t know what causes it. My situation is complicated by the fact that my doctor put a Medtronics Interstim device in thinking that would solve my problem. It worked for about six months and I tried adjusting it many times before turning it off in March 2010. Have tried again and again to make it work, most recently with help of a Medtronics tech. Now I don’t know what I am dealing with: the same doctor did the pop surgery with the mesh, then installed the device and with the device I can’t get an MRI or try to find out what’s causing the pain. I think I am going to go back to the doctor who did the surgery but I don’t know if he’ll agree that I need to “undo” all that has been done. If the mesh is removed, what is done about POP? I am in a state of paralysis and can’t seem to decide what to do!

      • Martha says:

        Blanche,

        I would love to talk to you, as I, too have had the dr. To implant the Medtronic stimulator into my back for my mesh pain. My isn’t working, either.

        It sounds like we have a lot in common and may be able to help one another.

        Please email me at marthajmartin@yahoo.com

        Martha

    • kathy says:

      I tried to find the article you mentioned how the mesh affects auto immune. How do I find out if the mesh implant I had in 2005, Obtryx from boston Scientific, is affecting my auto immune. I still have uveitis in my eye almost 2 years later. I have minor incontinence that has returned over the years. My other pains, like stiffening and increased bleeding during mestrual cycle, I have always chalked up to pre menopause but at times I begin to wonder. Thx

  11. I wish I had known all I have just read. I had surgery June 19, 2012. I was told it would be a simple easy

    procedure and recovery time maybe two weeks at the most. My other option was they insert a round ring that

    would require taking out and reinserting every six months imagine the cost and aggravation of that for the rest of my life. So I went with simple easy, Huh———– . Do doctor’s make money from pharmaceuticals to sweet

    talk patients with sweet simple and easy procedure? I did talk to people ho had mesh repairs only to later

    learn they were for stomach hernias. I have had a slight cramp to the left6 side of my tailbone muscle since

    surgery. But after after five months I was craving sex .I never forget his scream or my pain. He said the doctor

    inserted a bear trap. Since that night I have been trying to get an appointmet? What quality of life do I have to

    look forward to. Actually feel pregnant, which Im not just constant hit and run cramps and more pain. By now

    you know I’m depressed. I feel lied to and used as a guinea pig test subject. What’s next? Do I have to live like this will I be dragging a catheter or colostomy bag around. I have heard they can’t take it out for rupturing other organs. Are you alive today.

  12. Dawn Briwn says:

    Denise , I feel as though you wrote MY story ! This was right on the money … I am now 3 days post-op.. Feeling amazing having the MESH all gone … I was one big inflammation !!!! Inert ????? Not even close to being inert… My glands and lymph nodes are continuing to shrink daily… My monarc SUI sling had attached itself to my pelvic bones on both sides of my groin … To now know why I was in so much pain is such a relief… All in my head huh Doctors ????? Again, Denise … Thank you for your great writing !

  13. Maria says:

    I had surgery in Aug. of 2012 for a total prolapsed uterus as well as a bladder repair with mesh. I now have a prolapsed cervix and am expiriencing extreme vaginal sores, burning and itching to the vaginal area as well as my rectum. I have gone back to the surgeon and he wants to cut my cervix in half to eliminate the cervix from prolapsing. After reading different articles concerning mesh and it’s problems I now wonder if the sores and feeling as if I am being pricked by pins is all caused by the mesh and not because of the cervix prolapsing. I am skeptable about doing any additional surgery. My tissue, I am told, does not seem to be supportive of any stitching. I was told that eventually my vaginal wall may collapse. How can I find out what is causing this discomfort? I don’t want to go through surgery to only find out that I still have gotten no relief from this.

  14. Denise says:

    Dear Maria, I hope you haven’t had that surgery on your cervix yet! (I forget to check back here every once in a while- need to do it more often). I do think there’s a very strong probability that you are having adverse reaction and symptoms from the mesh, including possibly the chronic infections. I don’t know where you live but you need to get yourself a second opinion with a doctor who is an expert in mesh complications, diagnosis, and removal- preferably someone who does the translabial ultrasound. “Picked by pins” is exactly how many describe mesh injuries, “barbed wire” feeling, etc. Best wishes.

  15. amy b says:

    Denise thank you for sharing. I to am having horrible issues. I had a Gyn do my hysterctomy and a urologist did the sling. I thought I had asked all the right questions before the surgery! I was assured that I would be find because they would use tape not “mesh”. I have been dealing with the spasms since the surgery. I was told that it would get better. It has not. My husband and I don’t have sex…matter of fact I cringe every time I think about it. It is so painful!!! I have started having pain in my rectum, I have an appointment. with the GYN next week and I’m scared he will just blow me off. Recently I have had a doctor request that I have autoimmune testing because of other problems that have been going on. I think all is related, but I’m scared that the Drs will just say that all of this is in my “head”.

    • Michele says:

      Oh my God…Lord help this woman I pray !……I am serious……I have been through much of the same as you. The doctor tells me to go see the Psychiatrist. Nope….I am a mental health RN. and I am not crazy and neither are you. They can’t fix us and they don’t know what else to do. Please, if you have found any new information…contact me.

      Thank you, Michele LaCoste my e mail is horsepatches@yahoo.com

  16. Denise says:

    Dear Amy B, I know you won’t let them convince you that it’s in your head because you KNOW that it isn’t!

  17. Kathy says:

    Tears flowing after reading your letter, Denise. This letter should be sent to each and every doctor that may still be implanting mesh into our vagina. I am going to print it and take it with me to each of my own doctors that still look at me with a blank stare when I describe my mesh pain.

  18. Michele says:

    I too was internally mutilated by vaginal mesh. I’ve had 7 surgeries in five years. This body that is left does not even remotely resemble me. I have been told its all in my head. I have been ignored by every doctor I’ve seen and sometimes wonder if this will kill me. I was married (second marriage) only a year when I had my surgery. My wonderful husband was injured by a sharp object during our first post surgery relation. We do not have sex anymore and it’s been four years. About two years after my surgery I had a hysterectomy where my dr told me my bladder simply fell apart. She said the mesh had adhered to the walls of the bladder causing it to tear apart. Two years in a diaper or in a cath until finally the bladder was repairable. Although I must say, I’m back to where I first started…severe stress incontinence. Oh yeah… Forgot to mention….while wearing a super pubic cath I had a piece of my pubic bone with a screw and some surgical wire come out my vag. Felt like I had something lodged in my vag for several weeks, one day I checked it out and felt this hard thing. I was so afraid to pull on it but got it out and it was a bone with a screw in it and about two inches of wire. My doctor almost fainted. She was not the doctor who put it in so she referred me back to the original dr. Needless to say I lost my health insurance couldn’t work…too sick for too long. The pain in my inner core hurts all the time. I’m sick with joint pain, infections, unable to stand or sit very long. My last doctor told me to go home and take care of my family. Not to put so much emphasis on my illness. I would just love to have been warned before having the mesh put in.

    • Jane Akre says:

      I’m so sorry about this ordeal. Have you checked into a complete removal? Patient advocates can guide you on the best docs who can do complete removals…Many people have found help.. I will pass your name along if you want to people who have been there.

  19. Nicholle says:

    About 5 years ago my mother had the surgery fro Transvaginal Mesh. Ever since her surgery she has complained of pain in her hip area. She brushed it off for a few months and just thoght she might be sore from theposition they put her in when they did the surgery. 5 years later and my mom can barely walk. Since January, she has been sick almost weekly. She did not EVER get sick before. All of the Dr’s she has been to have bandaided the problem with cortizone injection that only last about 1 week. Just yesterday, she called me and had developed a rash over her entire body, ears, eyes and throat. After doing some research I noticed that women have developed AutoImmune Disorders because of this stuff and I am concerned that my mom is on a dowhill path and it’s moving quickly. My issue is that the Dr. that did her surgery is very well known where we live. I want my mom to see someone that is an advocate for the women and not the Doctors. Has anyone experiences similar complications? Does anyone have any direction or advice on finding someone to help my mom?

    • Denise says:

      Nicholle, if I knew more about your mom, what state she’s in, age, insurance, etc, I could possible help lead her to help. If you’d like, please contact Jane Akre, as she knows how to get ahold of me.

      • Eri says:

        Hi Demis

        Please i need to talk with someone lives in Florida can I please contact u ?

        • Denise J. says:

          Dear Eri, I’m sorry but I didn’t see this until now. Jane Akre knows how to get in touch with me- either by cell or email. You may call or email me and I will try to help you if I can. Please don’t hesitate to contact me if you still want to.

  20. Tamara J Bierman says:

    I had a TOT Monarchy sling placed in June of 2010 for SUI. One week post-op I started having daily fevers over 101 degrees. Three weeks post.op I developed petechial rashes on my arms and my face. I also lost 29 pounds, became very anemic, and felt extreme fatigue all the time. I had many lab tests, all normal with exception of an elevated CRP and the anemia. I was seen by multiple specialists in my home town and had many more lab and imaging tests, including a skin biopsy and was given a diagnosis of small vessel leukocytoclastic vasculitis. I was treated by a rheumatologist and put on a drug that is normally used to treat leprosy. After 2 months on this med with no improvement in my symptoms, he sent me to Mayo clinic for a second opinion.

    I was seen by multiple physicians in several different specialties, and new biopsies were taken of my rashes, as well as the slides from my original biopsy being looked at as well. The conclusion by the pathologists at Mayo was that I never showed any signs of vasculitis, I had literally dozens of blood tests, urine tests, trans thoracic echocardiogram, trans esophageal echocardiogram, chest x.ray, EKG, cystoscopy, endoscopy, colonoscopy, 4 CT scans, ultrasound, PET scan with everything coming back with fairly normal results.

    From the very beginning, I had asked every doctor I saw if my body could be having some sort of immune reaction to this foreign substance that was implanted during my surgery. They all said it didn’t seem possible, and that it had never been reported in any of the literature.

    Over the past 18 months, I have developed arthritis in all of my fingers and toes as well as my right hip. I also now have vaginal pain every time we have intercourse. I have been advised by every doctor I have seen not to have this taken out. They still don’t believe the mesh is the cause of any of my problems. I am just as convinced that it IS the cause, but I am afraid to have it out in case that creates even more issues. I am relieved to see that other women HAVE reported immune system issues after mesh implantation, because my longtime PCP told me I should see a psychiatrist, because the only thing wrong with me was Munchausenhausens’ syndrome, and I was just making all of this up. Just hat I needed–someone to make me feel even worse than I already did. Needless to say, he is no longer my physician.

    • Betty says:

      Hi Tamara,

      I’m so sorry you are being treated this way – I KNOW how it feels! I have done many searches on reports from every area of mesh and plastic. A distant family member came down with lupus within one month of breast implants – not the silicone kind. I found an obscure report that said this can happen with mesh and with breast implants. There is a cancer that develops along the plastic in breast implants about 10 years after they are implanted that is extremely agressive. This is not found easily. There is so much $$$ that is used to hide/cover-up these reports. Another relative who works with agencies tied to the FDA and pharmaceuticals told me they are in bed with each other, because they are desireable to employ once they’re employed by the FDA, so the FDA employess don’t want to burn any bridges. She is quite aware of so much corruption first hand. Personally, I recommend complete removal of mesh ASAP. Partial removal only changes the forces that are on the mesh and makes them more prone to cut through something else. Mesh removal is a very serious and painful operation, if you are older and it is only causing inconveniences, leave it alone because the pain from removal is so great and takes so much out of energy resources. Recovery takes a long time. Good Dr.’s are very rare to find these days, so do your research and know as much, if not more, than they do. It is so sad it has come to this. It is better if you can take someone with you to every (humiliating) appointment. It is much harder for them to say some of the cruel things with a witness who can verify your story. Another issue I want to address is hip pain. I have found through a myofascial PT that my hip pain is actually coming from the pelvic floor. It is a referred pain. The pelvic floor is inter-related to all the surrounding muscles, when it becomes weak the other muscles try to pick up the load. The mesh, whether POP or SUI goes through the pelvic floor and if it is removed, many of these muscles are cut. This results in pelvic floor dysfunction. Which causes, so many of the problems associated with mesh. Of course, avid readers of this site know much about these issues. I’m sorry, but the days of going to a physician for an answer to help us get well are limited, especially with mesh. We have to be well informed, whether we want to or not.

  21. Bonita says:

    Hi,

    Gosh, I just don’t know what to think anymore..I had a bladder sling surgery in 2004 and then in 2005 I had transvaginal mesh surgery and for the past several years I have had pain that started with my tail bone which was so bad I could hardly sit even sitting on a doughnut cushion was painful, also any side movements like getting out of the car or stepping to one side produced extremely sharp pain .. I also have lower back pain, extreme pain in the groin and vaginal area and I have repeatedly told my doctor about this and have been told it is probably from my hip..Along with this pain I have a burning sensation in the vaginal area which comes and goes. I am considering going to a surgeon to see if I need to have the mesh removed but I would like to find out if this is the wise thing to do. I would really dread having to go through surgery again and would rather do something that is not so drastic but if surgery is the only route to get relief from pain then that may be my only option.

  22. Tamara J Bierman says:

    I have to say, although I am so sorry to hear so many other women are also having problems, I am glad to know I am not crazy like my former PCP tried to tell me. Although I don’t want to have another surgery, and potentially create more problems, if I continue to develop new problems as time goes on, maybe now is the right time to try and get it out. I am just wondering if anyone knows a good surgeon who has lots of experience removing this type of mesh. I have heard of Dr. mark Walters, and Dr. Kevin Stepp. Has anyone out there had experience with either of these surgeons, or know of anyone else who comes highly recommended. Thanks to anyone who can provide any guidance.

  23. candie tibbs says:

    I feel alone, although I know there must be tons of women experiencing the same thing. I had this procedure in 2010 and have had it cut or trimmed twice. Today I felt sharp stabbing pains so I evaluated myself and I could feel the mesh erosion again. I live in a small town the Dr that done the procedure said I had the vagina of a 18 year old. Yeah right!!!! I am a 35 ye old woman who can’t have sex can hardly walk at times have multiple things that seem to be malfunctioning in my body and no Dr. Seems to know what’s wrong with me. I am lost, alone and in the dark. I need help, please if anyone can talk to me I need advice. Thank you

    • Betty says:

      Candie,

      I’ve been severly injured by the mesh product. I’ve been talking with women all over the country for quite a long time. A new person, I’ll call her teresa, has had a 2nd mesh erosion also. The mesh is her 3rd sling, the first 2 failed and they were not mesh. This makes me wonder about slings period. The old fashioned way lasted several people I know 15 years, including a family member. And not one of them complained of these horrible problems we are seeing. The Dr. told Teresa that he’d take a piece of flesh and cover over the mesh that extruded into the vagina, this will be the 2nd time. She is scared, very scared, and she should be. She’s afraid of removal surgery because she has heard all the horror stories and fears being in worse pain. And I will add that removal is a very hard and painful surgery. Dr.’s diagree on what is best. So from my own experience and from talking to others – I say think about this, if the mesh has eroded and then was clipped or covered, and then it eroded again, what do you think will happen down the road? That it will stabilize? Really? I believe this is FBR (foreign body reaction) and your body is trying to remove it, just as it would a splinter. Except for this is a huge splinter and not so easy for your body to get rid of.. I believe the best way is to have it all removed at once. Not many Dr.’s are willing to do this, because it is a hard surgery, some believe that the scar tissue does trap the mesh, if it is in the obturator fossa, then it is at risk of hitting nerves and blood vessels that go to the legs. As you have probably heard, Dr. Raz in CA is willing to remove it all 100%. It is better if it hasn’t been tampered with previously. If it is eroding into your vagina, it can erode into other areas as well, including the bladder, intestines, arteries, etc. There are no predictions on which way it will go. Since studies vary up to 36% complications, there are some women who do not seem to react to it – at least that we know of. But I do know some that have had surgery 10 years prior who are now having issues. Dr. Raz along with his sonogram tech invented the translabial ultrasound. It is the best way so far, that the mesh can be viewed in the body. I think that Vanderbilt in Nashville, TN is also offering this now. I also have read that some don’t feel it, while others do. My conclusion is, if it hurts, it’s hitting some nerve, or near one. A Dr. told me that they are seeing women get worse with multiple surgeries, that is why I recommend getting it out all at once. I am not a Dr. so I can’t give medical advice-just opinions. Frankly, I don’t trust Dr.’s anymore. Or I should say, very few. I read that Amy Gezon is doing well (she’s got an article on this site) and she went to Miklos and Moore in Atlanta. They are still using mesh. I’m so sorry you’re going through this, I know how painful, upsetting, and frightening it can be. I hope this helps, Hugs

      • kim says:

        Hello Betty, I must say you are very helpful. I feel your strong arm in this, thanks. I’ve heard good thing about Dr. Raz even my attorney has recommended Dr. Raz as well , I must say my attorney has a good heart = He has alot of women that he talks to and I’m sure men and he listen and has pasted on to me that So Far Dr. Raz is the best in the world I do believe he said – don’t quote me on that but I’m about 85 0/0 sure. I myself will drive out to see him I live by the Canadian Boarder up state NY and I don’t fly, well I have flown about 15 times in a four setter . and twice in a big plain and wont do again I will take the 3,333.33 mile journey, also this attorney told me talk to some women that have been to Dr. Raz and see how there doing, so he gave me this web site and I’m trying to find some women or even men.

        • Betty says:

          Hi Kim,

          That is a very long drive, (but plane flights are just pure torture). I recommend you get a foldable stool (it folds flat, less than an 1″ wide when folded) to put your feet on while you’re in the front seat (I hope someone else is driving you!) Buy an inverter, min. 400 watt and check it before you go, to make sure it works – it’s for a heating pad. An inverter plugs into your car cigarette lighter . I think this is one necessary item, and seems to slow spasms if you’re prone to them. Lot’s of pillows, one to sit on and one to lean on the door. Have a traveling bag that has an extra set of clothes, easy to get to. I cannot tell you how many times this came in handy, when my bladder “decided on it’s own” to stop working and just dump. I don’t know your particular issues, so I’m just throwing out what I can think of. Have a bag handy to throw-up in – just in case, Pain can cause nausea and vomiting. Our bodies have been put through the mill and sitting in a car for long hours doesn’t help. I have seen Dr. Raz 4 times at this point. The surgeries are brutal. But I concur with the others – he is the best! He is from Israel and his interning took place there. He removed shrapnel from many people for several years. It struck me – “wow, he was at the right place at the right time for our issues – Thank you God!” I believe this is why he is not afraid to go where other Dr.’s fear to tread. If the shrapnel doesn’t come out, no matter where it is the patient has little chance of living through this. Anyway he is upbeat, positive and fearless. He is honest and will tell you what needs to happen. He is an amazing man. Recently a Dr. told me he could barely see the stitches in my urethra. Which had mesh all through it. He actually splayed it apart, scraped the mesh out and reconstructed it. Such a small piece of our anatomy and he could hardly see the scars! That is just amazing to me. Jane can give you my email if you wish. I can think of more things, but right now I’m battling with pain from the mesh demon. I wish I knew about Dr. Raz before I let any other Dr. touch me or the mesh. Hind site being 20/20. He wasn’t on the list when my issues began. Blessings to you and yours. P.S. Thank you for your kind words. I am very passionate about this issue – as I’m sure we all are. I just wish the Dr.’s themselves would get together and share in much the same way. It is frustrating dealing with a medical system that isolates not only Dr.’s from each other (their own choice – think it’s pride?, even with the net, but also not sharing what has really helped their own patients, what has not worked. I’m tired of hearing “we’re writing the book on you”. Another thing I wish is that we go after this with a holistic approach, not a system approach. We are not cars and the systems affects other systems. Such needless suffering.

  24. Kathy says:

    Candie, You are not alone. Even living in a big city does not help women with mesh. I felt very alone until I found this site. If you read all the stories you will understand that there are so many of us.

    It is a very painful journey that we are now on. You must find strength, educate yourself on the mesh as much as possible, but also take time off from the worry of it all. Mine was implanted in 2007. I too have erosion and this alone is nightmare. I pray we all unite at some point. Only then will doctors understand our pain, now they just make silly comments. I bet they would never say these things if it was their sex life that was ruined.To me, this in itself is a crime. Barbaric.

    Be strong!

  25. Jolene says:

    I know now i am not alone but really this is just not fair i have lost everything good in my life because of this. I went to see a lovely doctor and explained that my husband and i wanted an our baby to join our two families. Naturally i had problems with repeated infections in my uterus. He proposed we put in the mesh because my uterus wasn’t in the proper place tilted to far back and it wasn’t getting enough oxygen from blood flow to remain healthy. This was in i believe September of 2006. I say this because its based on my memory as i have had a huge battle trying to get my medical records which have disappeared. I Have spent the better part of a year trying to get my record to be told just weeks ago the doctors off ice and hospital say after 7 years they don’t keep records. Well i started trying before the 7 years was up and was stalled till that response. I have hired a lawyer but here’s the kicker we cant proceed without proof of the mesh inside me. Mine failed within 6 months and i had moved but saw a doctor from the same clinic. She had to have known what the problem was already because she never physically examined me. She held my file in her hands sat down for a minute and said you have a decision to make all i can do for you is a complete hysterectomy then continues to say besides its not like you need anymore kids you already have enough. So lets say i was devastated and then appalled at what she was saying. She stood up and says as she walks out of the room let me know in the next few days so i can schedule the surgery. I never went back i suffered in silence until this last year when i saw the ads on t.v. and put two and two together. Since this was put in me i have had spikes pointing up thru the skin severe pain, swelling, pregnant belly, problems keeping my blood pressure stable, Fainting spells, Regular dizziness, I already had fybromyaglia which became worse then ever since, Serious problems with anxiety which i never had to this degree before, I have a hard time focusing i went from being able to read about 500 pages in 3 hours to less than 200. For me this is a problem the forgetfulness makes me feel stupid, Depression so bad I had been medicated the stabbing pain comes and goes as i have had to minimize all my movements, Weight gain of almost 80 lbs, Which for a while helped control the amount of pain, The doctors test and say normal i have suffered having my heart catheterized in march of 2012 they had to put it in my groin which was next to the spikes and that caused a new pain which has remained since on my right inner thigh all the way down my leg. Worst of all the hardest thing to get past was the loss of our baby. I have battled finding a doctor who will treat me let alone treat me with respect. I just want this out! I want to play with my kids again! Heck I’d be happy being able to pick up a laundry basket again. I did find a new doctor whose willing to send me for testing but has no experience with this issue and he doesn’t operate. So i need to know what test will see this crap and if there are any doctors in the Green Bay Wisconsin area who can help me. I have already been through the MRI’s and CT scans and decided to start researching for myself to find out those couldn’t see it anyway. I am lucky enough to have my disability medicare and medicaid so at least i have coverage. Please if anyone can help me contact me at my email Thank you for your time and efforts!

  26. Sara B says:

    I was just wondering if anyone or if any of you have heard of someone having a stroke as a result of these mesh slings. My grandmother had one done about a year ago and shortly after she had to have another surgery to replace the first ill made sling. She has never had any serious health issues until recently, when one evening last month changed all of our lives forever. She had had a stroke and it affected her whole left side. She is gaining her strength back and she now has regained movement in her entire left leg. She has some feeling in her arm again and her left eye and mouth are not drooping like they were. If you could only imagine the warmth I felt when I looked at her and we were laughing together and her whole mouth went into a smile, not just half of it as it had been, but I got to see that whole smile again for the first time! Miracles are in the making that’s for sure.

    However, back to the point, my grandmother seems to think whole-heartedly that this sling has something if not everything to do with her stroke. Even though she is making unbelievable progress, I am concerned that if it is this sling and it isn’t removed, she is only a ticking time bomb for this to happen again. I am not sure of the maker of her mesh nor am I sure if it’s SUI or POP and at this point I don’t think it matters as I think they are having just about comparable outcomes. Any advice? References? Articles? Any information anyone has to offer would be greatly appreciated. Thank you in advance!

    Sara

  27. Kathy C says:

    I hate hearing about this problem in so many women. I had the Miniarc sling put in over a year ago. Last month I felt something hard in my vaginal wall so I made an appointment with my OBGYN who tells me that the mesh has eroded into/through the incision made when inserting the mesh. He recommended I return to the surgeon, which I did the following week, only to be humiliated. I understand he is well known in his field, however he made me feel small and uneducated. He said that the mesh isn’t ‘eating me like pac-man….waka waka waka’ using hand motions and all. He couldn’t believe that I would want it removed and gave me no suggestions other than trimming it and sewing skin back over the top. When I asked if it would happen again he says ‘it’s very rare’. I think that if i’m one of the few that this happens to then I already fall into the ‘rare’ catagory. My second opinion surgeon was very well educated and explained to me the options I have and the problem with complete removal. I decided to go with the trimming option, along with a lot of prayer, b/c that to me was taking care of myself, however my surgery scheduled for Sept. 23 has been cancelled due to insurance issues. Maybe this was meant to be b/c today I was diagnosed with fibromyalgia….I have had excrutiating pain in my arms making daily life unbearable. The pain began in my right arm (diagnosed initially as tennis elbow) and I was given two shots of cortisone. My reaction to the cortisone was unbelievable……mounds of blisters in the area the needles were inserted and more pain. The doctor sent me to a surgeon who ended up going in to remove any infection caused by the injections, but instead of infection, a blood clot was found and removed. I must say I have had several cortisone shots, all prior to the mesh being inserted and all with NO problems. Last month my other elbow/arm immediatley became painful to move…..just as the right one had started in December. After reading all of the comments here I am wondering if the mesh didn’t cause the reaction to the cortisone, blood clot, an un-needed surgery and the current pain I am experiencing. I feel like I am the only person interested and if I complain people look at me like I’m making it all up. Someone even asked me if I thought it was all in my head 🙁 Now, rather than just ‘fixing’ the mesh, I’m wondering if I have to take the risk of having it all removed because of FBR. I am frustrated, confused and disappointed in the medical field. I live in central illinois and my options for physicians are limited. What am I to do? Where do I go? Who can I talk to? This is consuming me and affecting every relationship I have. Please help…….I honestly cannot believe this is happening to so many of us.

    • Betty says:

      Kathy, I’m so sorry for your problems. All I can say is – get it out. Others around us, even well intending, can hurt us because they DO NOT UNDERSTAND what we’re going through. We look normal enough. It is not in your head. I know you probably don’t want to hear this but Dr. Raz @ UCLA is the best chance of getting it all out. He now has a 6 mth back-up on surgeries and mesh has taken up 100% of his practice. The answers to the mysterious mesh consequences have not been answered or studied enough yet. There is still much to learn. In the beginning the belief was that it was “innert”. That has been proven to be false – after so much suffering. I believe they have angel flights for those who cannot afford to fly (TVT-NO ?). The Tiverton is $120/night, I do believe they give further reduced rates for those who need the extra help. Unfortunately, Dr. Raz can no longer see you one day and operate the next, it is now required to go for a consult and then re-book for surgery. He does a translabial ultrasound that shows where the mesh is located. He is an agressive surgeon and the surgery is brutal, but well worth it. My heart hurts for every one of us also. Dr.’s who tell you there is nothing wrong with you, are either ignorant, or worse lying. Run from any one that can’t admit he doesn’t know it all. Especially if he blames you. At this point it is hard to believe that any Dr. who deals with OB/GYN or urology patients hasn’t seen a mesh complication. But as my Dr. told me, there is no Dr. in my whole state that knows how to deal with mesh complications. It makes me sick. Amy G has gotten much better and she saw Miklos and Moore in Atlanta – they do still use mesh however (she is highlighted on this site). I think mesh has more of a political spin on it rather than a factual one. It is about the $$$$ and not about “helping women with an embarrasing problem” as they’d like us to believe. The saddest part yet is it is still ongoing, the shapes and names change, but it is the same material – polypropylene. SICK!

      • Betty says:

        Forgot to mention. Do not let anyone cut the mesh! Get it out in one piece if at all possible. The cutting just makes it harder to find and remove. That leads to more surgeries and more issues. Thank God the last surgery was cancelled. Trimming it will not help. I truly believe this!

  28. Louise says:

    My name is Louise and I had a transvaginal sling for urinary incontinence done in 2008 .Soon after, my incontinence was worst.And to make matters worst , I now have stool incontinence,The surgeon told me the stool incontinence is not his domain & that was it.I had urinary infections over the years ,and a lot…I also have groin, leg and hip pain., that is related to the sling,as I was told.A ultrasound showed that my sling was fine but can it show erosion on that test?Do I have to be operated again to remove it or to see the damages of the stool problem infections & erosion?As for intercourse, my husband died a few years ago, so I don’t know, but when I do a pap test it hurts.So I’m pretty sure that intercourse is out of the question.My life is now over and I feel depressed all the time.So, now when I want to go out, I have to make sure that bathrooms are near because of both incontinences or else I stay home.What a Life! I wear pads all the times.I had cancer of the uterus and had everything removed, so I did’nt wear pads anymore but now I do.As for the urinary infections, I’m tired to have to take pills all the time.I’m a 62 yrs.old widow, and what will they recommend, either have that crap out of my body or not…I don’t want to have another surgery again but if I have to get it , so be it. I’m at my wits end.Please help me and all the women out there.Thank you so much, for hearing my story and I hope to hear from you, soon.

    • Jane Akre says:

      Where are you located Louise? I’m not a lawyer or doctor but it sounds like you are pursuing an improved health condition which is the priority. Do you have your records and know what you were implanted with? Knowing where you are might be dictate where you are directed by patient advocates.. please let me know ..thank you! ~ ja

      • Louise says:

        Hello, Jane. I live in Ontario, Canada.I’m a 62 yr.old widow .who has many questions to ask.I ask the Hospital for my medical report about the sling.They told me that I can’t have them unless it’s my family Dr. who asks for them.When I went to my Dr. they send the report, but it’s in French, ( I’m french speaking) and they call it a (“Bandelette Synthetic”) On the report it’s not giving the name of the product, nor where it was made.My family DR. is gonna try to get more info. At first when I heard about this lawsuit, about 3-4 months ago, I did’nt know that it was in Canada, also.So I text an American lawyer and she told me that it does’nt matter if I have an American lawyer or a Canadian lawyer, that this lawsuit is in both countries.Is that true? Some says that if I come from Canada, I should have a Canadian lawyer.Also, I would like to know , do I have to get surgery to see if my bowel or other organs have been affected, because right after the surgery I had bowel incontinence.And, I want to know if I should or should not remove this crap out of my body. I want to thank you for responding to me.It’s very much, appreciated.I hope that they will pay for ruining my life and the lives of so many women out there.

  29. Louise says:

    Hey! Jane. This is Louise.I just read that women have groin, leg, and hip pain that is due to the mesh.I have the same problem, too.In fact. I’m supposed to get surgery for hip replacement but the waiting list is long.For the time being I use a cane and I have pain killers when the pain is excruciating. I’m so depressed I don’t know if I should remove that crap in my body because they say they can’t take all of it out and if I do decide to remove it there will be a lot of surgeries afterward.and if I keep this crap, it might do damages to other organs. What a choice.Help me, please.

    • Carly says:

      Louise, don’t do a hip replacement…..it sounds like you have Pudential Nerve Damage and that is from the Mesh.

      And ALL your mesh can be taken out with the right DR.

      Jane, is that any way you can get this message to Louise….she wrote on 31……just want to make sure

      she know about the Pudential Nerve. Thank you, Carly

      cchesapeake@gmail.com or 410-446-8454 FOR JANE

  30. julie says:

    Had the mesh put in 3 yrs ago during partial hysterectomy. Started to have cramp like spasms a few weeks ago and now just discomfort. I live in NY and am looking for a Dr in northeast area. Any suggestions?

    • Jane Akre says:

      Hi Julie- Three years with no problems could indicate there is something other than mesh going on. Please post a question on Facebook and see the responses you have. Others who have mesh will match their symptoms to you. I generally don’t give referrals other than to post the positive accolades of others who have found relief. I with it was easy to find a sympathetic doctor who is aware of mesh complications. The fact is it is not. They are still largely in the denial stage. I know Hope Pagano lives in the NYC area and may be able to help with a referral. Again, check the Facebook community and see what you find and please stay in touch. Thank you! ja

  31. Drew B says:

    I am so angry over this. Mine was in 2010 and I have been sick ever since. I have now had surgery #3 and still don’t feel good :0(

  32. Teresa says:

    Has anyone traveled to see Dr.Veronikis in St.Louis? I am going for mesh removal and reoccurring prolapse in Feb. If yes, please let me know because I am scared stiff and it would help me finally get some sleep at night.

    Thank you so much.

  33. Thank you for sharing your valuable information.this information very useful for online learners

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  34. sue says:

    I recently had a partial hysterctomy and bladder and rectal repair done by abdominal robotic surgery using mesh. I was told after 5 months with extreme vaginal and rectal pain that it was pulled too tight. The doctor then went in and cut the tail off and removed it from the tailbone. which should now release it some what. there is still mesh on both sides of vaginal walls. 3 weeks out i still cant sit and am in pain. I am going to pelvic floor therapy 2 times a week . Does abdominal versus trans vag have the same problems? My next step would be to have it all removed but what then helps with the prolapses? The new doctor i saw in NYC now will remove this mesh but wants to put it in his way. Not sure what to do.

  35. Annie says:

    This makes me so very sad. I’ve been suffering with this terrible mesh since right after surgery. It started with left side hip and groin pain that eventually went to extreme pelvic pain. I’ve got inner thigh and upper thigh pain. I can feel the mesh poke me its like being stabbed with pins or being stabbed with something sharp it causes me to scream out in pain even if I’m in public. I walk very slow now because I’m hurting all the way down into my foot. I feel it pull in my groin area a lot especially when I get up from sitting. I cannot sit on the left side of my butt without extreme pain. I went to see the surgeon/urologist who places the mesh . He told me he thinks its something else causing my pain after doing a cysto and finding no erosion through the bladder. I leave feeling sick to my stomach thinking he is wrong it has to be the mesh. I’ve had some pelvic pain over the years from endometriosis but nothing compared to this pain. I end up in the hospital for 4 days with some type of infection but they could not tell what it was. I had fever extreme burning and rippling of my skin on my inner thigh and butt. I could feel like something was infected it felt like when a blister pops open it stung me. Horrible pain. I was treated with several Iv antibiotics. I could feel my underneath skin on fire . I left home without a specific answer . I had an MRI which showed perirectal lymph node swelling . No one can tell me the cause. I ended up bleeding and my Gyn felt like I should have an endometrial ablasion. I had that done but still felt that god awful pain . I was referred to a pain specialist. It took me a month to get into him. He started me on vicodin . I hesitated to take vicodin because of it being so addictive. I started the vicodin it worked but not fully. I could still feel the pain. I asked to see a neurologist thinking its some form of nerve damage. I go in and explain my weird symptoms she says a previous MRI shows disk buldging. I’ve never had back pain I told her until after mesh surgery. Most of my pain is on the left side but I do have pain on my right groin area right where I was stitched it a pinch feeling and poke. She tells me she is going to do a nerve test on me. I agree. She did the test and her partner who did the test hooks me up to all these wires and begins the test he looks at me and says don’t you feel that what I’m doing your not reacting. I said no I don’t. He checks his machine and proceeds. I find out later I’ve got some form of nerve problem mainly on the left side which I all ready knew. She associates it with my back. Not I’m thinking. I begin to have weird rashes on my body. She sends me to physical therapy. I attended all therapy sessions but none of it helped me. Even my therapist says you have something else going on. I explain my theory. He calls over his supervisor who agrees after she carefully screens snd questions me . My therapy ended due to my insurance wanting continued therapy notation from my neurologist. So I ask to go back again to see my surgeon. He totally dismissed the problem . He says I can remove the mesh but you don’t want that you will leak all over the place. He begins to tell me a story about a woman that he had removed the mesh from and all her troubles after. I said to him I’m not that woman I’m me and I’m having different trouble then her. I said show me what this mesh looks like and asked how its connected to my body . He spins around nervously and says I can show you what the mesh looks like. He searches his computer and finds nothing the whole time you could see the freaked look on his face . I said I think the mesh is causing me this infection and pain. He doubts it. I knew then at that moment I did not trust him any further. I got up and walked out it was at this time I decided I needed an attorney. I felt defeated. Well my second opinion doctors that I ended up going to truly believe me. I first saw a Gyn/ urologist who did testing and sent me to a urology surgery center within their hospital. The doctor that I saw says I have pelvic floor damage. I have a constant need to bear down as if I need to pee and burning like I have a bladder infection I feel like I need to poop all the time. He says all my tenderness in my vagina is pelvic floor damage. He told me he can remove only part of the mesh and that he cannot remove the arms of my mesh. He told me his partner tried to remove the arms from a lady and she practically died from bleeding. He said he is hesitant to remove the mesh. He is going to start me on pelvic floor therapy because my insurance will require it first. I agreed plus I’m terrified to have the mesh removed if he isn’t confident he can do it. He told me he has two places he refers to but they don’t accept my insurance so he will do a referal and see where they send me for pelvic floor therapy. I am to go back and see him as well. Now I’m just waiting for the referral. I’m praying for a good out come but I know I’m terrified. I tried to get an appointment with Dr. Raz he only accept medicare and private insurance it will cost me $700 for a consult. I can’t pay that. Jane do you have any info on programs that can help me.

    • HE says:

      Hi Annie,

      I am not a Dr. but I have way too much experience with mesh and consequences. The mesh needs to be removed first. In one piece – if at all possible – I cannot emphasize this enough. Miklos and Moore are getting better at this and they have had some success (they are in Atlanta, GA) – if you can’t go to Dr. Raz (#1 surgeon for this issue). Amy Gezon has her story on this site and she is much better after seeing them. Having PT while the mesh is in can cause the pain to get worse – my personal experience and that of others as told to me. Sounds like you also have auto-immune issues from the mesh – many do. See Hope Pagano’s story – also on this site. Dr.’s do not want to admit that polypropylene causes these problems (especially the ones using it) so they will point to any other issue that they can find. This “minimally invasive” product is robbing so many of us and your symptoms are so similar to many others, mine included. I know the feeling of being terrified, but don’t let fear rob you of getting the help you so desperately need. There are so many “opinion pieces” out there on the mesh in the guise of “scientific literature” – look to see if there are financial disclosures to be stated. Many of the so called “studies” were paid for by the companies who are selling these products. The sad thing is they are not being held accountable, so many of us have been hurt and we’re just # ___________ in a file somewhere. Making us seem benign and unimportant. Nothing is further from the truth. I am terribly sorry you and so many, including me have been badly hurt, have lost our lives as we knew them and are being denied by the very people we went to for help in the first place. At that time our problem seemed awful, funny how a new perspective can drastically change that. Inconvenience of leaking when coughing and sneezing is dramatically different than leaking uncontrollably, living in constant pain, undergoing several surgeries, and doing “experimental procedures” to try to get relief. How crazy is this??? It is reality for way too many. While the pharmaceuticals sing their praises for bringing women’s lives back with a gold standard product and saving millions from embarrassing problems that locked them in their houses. What LIES that are told, bought and sold. Hopefully we will live to see justice happen in our generation! Hang in there and keep fighting – we’re fighting for our lives and the lives of so many unnamed yet to come victims.

  36. Linda Springer says:

    Dear Denise,

    I am a mesh implant patient who had the surgery back in 2009. I have had 5 surgeries since that time, and have had almost continual UTIs. My husband will have nothing to do with me anymore about this, because he has “had it”. I don’t blame him, but he tells me that “his life is ruined” because I had this surgery done. I am at my wits end with this, and don’t know where else to turn. My lawyer is telling me to have the mesh removed, but after reading some of the comments, I am terrified to have any further surgery done. The last one that I had, the OB/GYN kept pulling on a stitch until it became apparent that he could not longer snip it because, as he told me “he could see up into my abdomen!”. I had emergency surgery in order to close it. I am about to give up on the whole thing. Our sex life has suffered tremendously, because of the UTIs. I can no long achieve orgasm without outside stimulation as well. I also have no sex drive whatsoever. There is a Dr. here in Jacksonville, FL who removes mesh implants, but again, I am terrified that removal will only make it worse. I am 62 and very active, and I don’t want to wind up not being able to walk or to be in continuous pain for the rest of my life. What do I do now!!!!!!

    • Jane Akre says:

      Linda- I’m not a doctor but partial removal present their own set of problems… when a surgeons attempts a full removal it makes it much more difficult. I’ve not heard of a mesh doc in Jacksonville so would appreciate the info. Our Facebook page has some mesh removal referrals…. stay in touch about your options and please post questions on the FB page…. thee are lots of women who have been where you are now…~ ja

    • Denise Jacobs says:

      Dear Linda, I urge you to get the help you need. If you wish to discuss your situation in more detail, please contact Jane as she knows how to get a hold of me. My heart goes out to you for what you and everyone else in this situation are going through… 🙁

  37. I’ve been in bed low grade fever ,chills ,was told by obgyn had ic ,don’t urinate but four five times a day ,pelvic pain sevear ,said bladder is inflamed, have had several bladder infections cense surgery two years ago ,hand j an j bladder sling, no intercorse hurts ,all over body weakness ,seen bladder specilest b bladder won’t mind four ounces. Past month have to push to empty,if standing soak self , past two years quality of life down to zero,in one room bathroom back down ,bath shower makes me tired ,stomach swollen ,constipation ,stool softeners four kind two times a day ,stomach feels like just has surgery ,bladder DTR said don’t feal slipage of sling its OK ,no I’m not OK depressed cry everyday ,neck hands feet face swollen ,hurt all the time .said don’t know why swollen ,got apt with Dr Francis in Louisville ky July seventh if I live that long ,eyes blurry dizzy ,extream tiredness .two days get ready to o to Dr , Dr Francis is supose to be number one surgeon gynocoligrdt an urogyligest ,feal like I’m dying other symptoms,ice pick stabbing pain in ovary Ares ,awake every hour pelvic locked up scream crying ,family don’t understand ,not sure I do ,in prison watching out window rember ing what life use to be like ,feal alone doctors look at me like I’m crazy feal alone like no one understands or cares ,feal being punished ,so scared ,at any moment no reason or exertion clothes hair soaked ,then feal like I’m going to pass out ,was strong so weak ,tired day after tomrrow pain management giving pain shots in nerves in pelvic ,they hurt so bad ,so much suffering I had surgery to get better ,confused scared feal alone ,no life ,hurts getting up from toliyt ,pelvic pain very sevear, hard roll over in bed ,fourth on more pounds cense last year eat once a day small portions ,tryed fluid pills could fluid be trapped,, just existing in pain ,can’t do anything become bed ridden as they were so slow with making spts so far apart a small text here an there none of which I passed ,can’t hold on no note ,are my symptoms all connected to my bladder sling? Can I be helped or is life as I knew it over for good?they killed my life stole my joy my family ,locked me in one too for a year ,,can’t fix food when I’m hungery ,I feasl so violated an abused suffering is all I know Perce ten every four to six. Hours still feal pain unless knocked out waking up is hell ,please does any body care of can tell my all symp of this only seen few ? E mail me at angelagibson12@ yahoo,com please anyone I beg u help me chat live on face book Angela Gibson Greenville ky live meds age talk any on need friend someone to care help ! If safe will give my address to someone with other contact so don’t put it bublic. Thank you zGod help bless u all in pain from this deadley device implanted in us ,destroyed me stole two years so far how do u psy for that

    • Jane Akre says:

      Angela— I’m sorry you sound like you are in a bad way. Dr. Ostergard, who is a very adept mesh doctor, recommends Dr. Ali Azadi at the University of Louisville as a top notch doc,,, don’t know him myself but Dr. Ostergard is very reputable.. Azadi is 502-409-2732… Let us know what you need.

    • Denise Jacobs says:

      Dear Angela, I’m so sorry that I didn’t see your post until now. My heart goes out to you for all of your suffering. Shame on your doctor for letting you suffer so badly and for so long!! If all of these symptoms started after your mesh was put in then there’s NO DOUBT in my mind that they are related to your mesh implant. I had many of your same symptoms when my mesh was in- literally felt like I was slowly dying… Was also diagnosed with IC and took Elmiron and had bladder instillations (BI’s) (which never helped me or decreased my pain- kept doing them because I was under the impression that they were supposed to “cure” the IC). The ONLY thing that helped was getting the God-forsaken mesh out of my body- and then 3 1/2 long years later, a translabial ultrasound done at UCLA showed that a big chunk of mesh was still in the wall of my urethra (although I had been told that all of the mesh up to the obturator muscles had been removed and came out easily). At this point, I don’t believe that I ever had IC- it was the mesh the whole time! Please don’t give up- there’s help out there- you just have to stay strong enough to fight for the help you so desperately need. I’m so sorry that you are going through this…

      Hopefully, by now you’ve been able to find someone to help you- I see that you left your email address so I will check up on you that way.

  38. Aimee says:

    I need help! Atlanta ga. I had a hysterectomy last year-with mesh. I have constant urinary tract and kidney /bladder infections. I have sore son my urethra. Lower back and hip pain. Iwas told I needed to have the mesh removed by my PCP. I had a consultation with dr hulse. He wants to do a partial removal. After reading this blog I am petrified to have the surgery. Anyone have surgery in the Atl area who can recommend a good surgeon. THANK YOU!

  39. R Marie Mansfield says:

    OMG, I have suffered with tailbone pain for ten years, from 4 months after pelvicmesh…never even considered that that was the cause until now. Ive been to so many doctors, had shots in it, and no one could give me an answer. I have all the symptoms, pelvic pain, numbness, very painful intercourse, bloating, pain in right side. Every where I go I carry a special pillow from Relax The Back Store. Road trips for more than a half hour are excruciating. I turn the seat heater on in my car after sitting all day at work.

    The urologist is long gone. I remember going back to him and saying something is wrong, he said he couldn’t see anything. Where do I go from here?

    • Jane Akre says:

      Hey R- when did you get your implant…. do you know what kind it is? do you have your medical records? You can email me privately if you want to talk to a patient advocate…. janeakre@meshnewsdesk.com

    • Denise Jacobs says:

      Dear R Marie, What you are describing are “classic” symptoms indicative of mesh injury to the neuromuscular tissues. You are also describing classic signs of injury to the pudendal nerve which usually includes much difficulty with sitting. I suggest that you read the article on Jane’s site about “Pudendal and Other Pelvic Nerve Damage in the TVM Patient” to see if you have any other symptoms of damage to these delicate pelvic muscles and nerves. The insertion of TVM is usually done using an instrument that goes through the tissues BLINDLY so that the surgeon cannot see what they might be nicking or going through. Some TVMs are even purposely anchored into the obturator muscle (inner thigh) itself- I find this so hard to believe! How can anyone think that’s a good idea? Currently MRIs and CT Scans do not show mesh. If the doctor does a cystoscopy or a vaginal exam and he/she doesn’t see or feel mesh coming through the urethra, bladder, vagina, or rectum, then he/she likes to believe that everything is hunky-dory… But the mesh can still be pressing nerve on or eroding through tissue with the patient in bad pain, and yet nothing showing up as being wrong.

      Jane knows how to contact me if you’d like to talk. I urge you to find the help you need.

      • Carly says:

        Also a MRN Scan will let you know if you have any damage to your Pudential Nerve……NOT A MRI IT HAS TO BE MRN THIS SCAN CHECKS YOUR PELVIC NERVES…..I HAD THE SCAN AND THAT IS THE WAY MY DR COULD PROVE MY PUDENTIAL NERVE WAS DAMAGE……THAT NERVE CAUSES SOOOOOOOOO MUCH PAIN I FEEL LIKE IT IS A SLOW DEATH. SITTING,STANDING AND WALKING AFTER 20/30 MINS IS SO BAD I’M IN BED. GOOD LUCK.

  40. Denise Jacobs says:

    I haven’t read this letter/speech in a long, long time. Since it had been so long, I decided to reread it and immediately noticed something that I wish to change. I noticed that I used the term, “meshies”, which is what women who were injured by transvaginal mesh (TVM) and who found each other years ago initially called themselves. I want to let everyone know that I no longer use this term, as I feel that mesh injuries are much too serious, and women harmed by TVM deserve too much respect to be called a “cute” term such as “meshies.” I now only use the term, “mesh-injured” to describe those who have been harmed by TVM because that is the appropriate and accurate terminology. Thank you.

  41. Ann Dreher says:

    hello Denise I am 54 had a full hysterectomy robotic and bladder repair with sling. I am on medicaid and have had severe pain. I had the surgery 3 months ago . all tests come out normal but I have groin pain , can’t sit upright and severe stomach and bowel issues. I live in Greenville SC. Do u know of any local drs that will remove the sling totally? I have a xenoform disolveable cowhyde sling. Thank you for your help!

  42. Kristen says:

    Hi Denise, thank you for sharing all of this and responding to everyone. I have a long story and will keep it as short as possible. I don’t know if my situation has to do with the mesh or not but it’s the most likely explanation I have come across. I have had 3 c section 2009, 2011 and 2013. After each one my pelvic pain got worse (understand it so w c section to a certain point) all were healthy pregnancies and I tried for vaginal births but didn’t work. Anyway, the doc said she was implanting a mesh that would help reduce scar tissue… Is this the same type of mesh? Could it be causing all this pain I’m having? It’s slowly gotten worse with each delivery and I was recently pregnant with our 4th child and at 14 weeks I started spotting everyday then bleeding and they said all was ok. Then at 17 weeks they performed a pap and my water broke 15 mins later. Our son survived for 2 more weeks in utero but then the cord prolapsed at almost 19 weeks. Anyway, the bleeding and left pelvic abdominal pain was never explained and now almost 5 months after delivering our sleeping baby I’m spotting in between cycles and the left side pain, pelvic pain and pain during intercourse is excruciating. It feels like something is in there slowly slicing my insides, it’s extremely weird. It even radiates to my left side/back all the way to the bottom of my ribcage! I can sit or lay certain way where I get some relief and have had blood tests, CTs and ultra sounds and “everything is ok” “here are some pain pills.” I don’t take much forint because I really don’t want to disguise the pain. I want to do whatever is needed to fix it! Anyway, I’ve never in my life had bleeding or spirit between my periods and am a “healthy 31 year old.” If you have any guidance or advice you could offer I would surely appreciate it. I’m in Southern California. Thank you for your time and help for all these ladies.

  43. Denise says:

    Dear Kristen, I’m so sorry to read your story and for the loss of your “sleeping baby”. I’d think that the most likely the cause of your pain is the mesh- it’s the only thing that makes sense. The problem is that X-rays, CT scans, and MRIs don’t show mesh complications, and unless it’s felt or seen to be eroding through the bladder, urethra, vagina, or rectum, then doctors assume that everything with the mesh is fine, or that the mesh isn’t the issue (when most likely it is). In my opinion, your pain is probably from the mesh since nothing else shows up. Mesh can cause horrific pain long before it actually erodes through anything. Doctors who don’t realize that the mesh needs to come out are not listening to the extent of your pain.

    Is it possible for you to get to UCLA to see Dr Raz? I believe that he’s your best bet at getting an answer to your problems and pain.

    Please contact Jane if you’d like to talk as she knows how to get in touch with me.

  44. Trina says:

    I have had the mesh sling for urinary incontinence for around 8 yrs. I am having SEVERE pain in my right hip. Almost to the point of using a cane .I have a lot of lower abdomen pain as well. Like menstrual cramps but I had a hysterectomy several yrs ago. There is no one in my area that will check me. The Dr. that done the surgery doesn’t want to see me now. What do I do to get checked? I don’t have good insurance and can’t afford to pay out of pocket if I did find a good Dr.

  45. Crystal K. says:

    I do not know if you can help me but would appreciate your input. I had a mid urethral sling place on 9-23 of this year. I started having pain and discharge and saw the surgeon 8 days post op and was told that everything was healing well and there was nothing wrong. So I sucked it up and did the best I could keep on going hoping things would get better. On 10-16 I went to see my PCP after the discharge worsened and I had started running a fever and started experiencing excruciating pain with movement and just a dull pain constantly in my left lower abdomen. She DX a vaginal infection and started me on clindamycin 300 mg BID. I ended up at the ER 4 days later due to increasing pain and just being miserable. At the visit with my PCP my WBC was 13,1 with increased lymphocytes and at the ER visit after 4 days antibiotic my WBC was 14.8 with continued increased lymphocytes. One UA is fine and the other shows budding yeast, WBC and >50 bacteria but they said I do not have a UTI. Yesterday I had a CT and just got the call that the CT was normal and I could come back in next week if still feeling unwell. I had lost 15 lbs between my Thursday appt and my Sunday visit to the ER and have continued nausea and dizziness. My question for you is does this sound like the mesh used could be my problem. I cannot imagine going through this for years, I already sit around crying because I know i am not crazy and something is not right but the doctors keep saying I a fine. Considering that you have been through problems with the mesh and that you are in the healthcare field too I would really lile to have your opinion on what I should do next! Thank you so much for your time!

    • Jane Akre says:

      Crystal- Just wondering what a doctor told you about mesh? it was a “different mesh” or all the bad mesh has been recalled? Obviously you have an infection with an elevated WBC… I’m not a doctor and have passed your situation onto the nurse who wrote that article. Your symptoms sounds like those others are experiencing. I suggest you collect all of your medical records including operative notes, nurses notes.. so you know what type of mesh and procedure you are dealing with. Anyone should have their records just as a normal course of business…~ja

  46. rachel butcher says:

    hi everyone my name is rachel im 29 years old and had ventral mesh rectopexy of june this year for rectal prolapse and since than has been a year of hell i have been in constant pain since the op finally after 2 trips to emegency dpt for pain a bowel tranist study another protogram and a sigmoidoscopy my surgeon is finally taken me seriously and goign in through keyhole to have a look i am disgusted with the treatment i have recieved and feel i have not been taken seriously at all.Constant pain killers everyday not being able to be intimate with my partner and having to sit back from everyday family activites with my children has crushed me i was never told of all the risks until now and that the mesh can cause tention on other organs causing pain.she has refferd me to tony dixon now in bristol as other than goinh in and having a look i am told that if the mesh needs to be removed she cannot do this herself .i wish i never had this op done but was told if i didnt i would become incontinent within a year.i do not believe they warn you of every possible thing that could go wrong nor the fact you could b left in awful pain i know in some that the mesh does work and helps people but just how many things can actually go wrong and are we rightly informed i believe not.feel i have lost most of this year and im sick of this pain.i am greatful now they are pulling there fingers out but only after the very abrupt email i had to send to my surgeon to get some butts out of seats and do something.i feel for anyone going through the same or has been if i could rip this mesh out myself i would any advice from anyone or opinion would be greatfully recieved.thanks

    • Jane Akre says:

      RAchel- where are you located? Are you in the UK? did you have the mesh put in vaginally or laprascopically… for incontinence?

      • rachel butcher says:

        hi jane yes i am in the uk in cornwall.i had it done at royal cornwall hospital i had the op done through keyhole laprascopically.had slight issue with bladder but my main problem was the rear end although no one has ever seemed to really check things out from the frontal side of things i never had any of this pain before op.

        thanks

        • rachel butcher says:

          all i was told is i had severe pelvic proapse and a very complictaed proctogram and needed this oip to be done or i would become incontinent within a year

          • rachel butcher says:

            i can see this is a american site but just really looking for answers as to why im in pain and if mesh is a bad thing to have done of any kind really what i had done is considered to be a safe standard procedure but from what im going through i would say it certainly is not a easy ride at all

        • Jane Akre says:

          Rachel.. you can access folks on facebook who are from all over TVTMum is a site in the UK.. are you on the facebook site… also there is a profile of Liz Reece , also in the UK who had a mesh removed. Search the search bar for her name.

  47. rachel butcher says:

    i also still have awful bulge protuding vaginally and can feel what i think is the edge of mesh inside im told this is normal though?any advice much appreciated as i feel very much in the dark about it all i know they said that having the mesh put in through keyhole is a safe standard procedure apparently but in my experience i do not believe so one lady i spoke to said i was young for this sort of surgery and surpised it was even suggested thanks again any comments or advice would be great

  48. D. Craig says:

    I had mesh surgery in March of 2009 not because of any bladder problems but because I felt a bulge in my vagina. The doctor told me the bulge was a prolapsed bladder. At the time I was 55 years old and just getting a divorce. I thought that I may possibly meet another man and maybe get married again but I wanted to get this bulge fixed if possible. My visit to a uro-surgeon started my bladder nightmare. I was told by the surgeon that it was easy to fix and it would be day surgery. She never mentioned that afterwards I would probably have to use a catheter the rest of my life. I was told this after my follow-up visit. I was in shock when I was told this. After going back and forth for a year for incontinence or what I thought was incontinence, the surgeon told me that she saw a little area of concern and needed to do more surgery. I just found out after visiting another uro-surgeon to remove the mesh that in 2010 the initial surgeon and another doctor implanted two more meshes in me and I had no idea and was not informed. I have been calling law offices and trying to get someone to sue them for negligence but everyone tells me the statue of limitations is up and the doctors didn’t make the mesh. I know that the doctors didn’t make the mesh but If they had informed me properly, I never would have had mesh implanted in the first place. I thought mesh was a type of thread they were going to use. I just got the chance to see a mesh in a doctor’s office about a month ago and I had the last surgery in March of 2010. A couple of weeks ago I wasn’t feeling well and I had pain in my abdomen. My doctor sent me to the emergency room immediately because she said my urine was full of blood and bacteria. They gave me antibiotics and the infection is still there. I am up all night literally using the bathroom and I even had one uro-surgeon to tell me that this was normal and I know he was not telling the truth. I am beginning to get really concerned because this infection won’t go away and I know that’s not good. I am meeting with another uro-surgeon on January 6th to see if can remove these meshes, I have three in me I found out. I believe what these doctors did to me is criminal and I am trying to find an attorney who will help me to file suit against them. I live in Texas and I have found that these doctors really stick together even in wrong and it’s a shame because our lives are being ruined. I am certainly not saying that all doctors are unscrupulous because that’s not true I’m just saying that I had the misfortune of seeing a doctor who really didn’t care about me and my life obviously. My prayers go out to all of these women with this mesh.

  49. susan s says:

    I just found your article after all this time and beleive me I read articles like this all the time. Your article described exactly how my body reacted to the mesh implant. Thank you.

  50. Vanessa says:

    Are there doctors recommended in Louisiana, Texas or Arkansas to see about removal of my bladder mesh sling?

  51. Leslie P says:

    I am grateful for this help. I received an TVMI 7 months after I had my Daughter in 2011, as well a hysterectomy. I lost my insurance shortly after my surgery. I am close to Nashville, Tennessee. Looking for someone in the area to remove my Mesh. Also wanted to ask If having the Mesh removed has helped anyone with nerve and pain damage or is the pain irreversible? I am tired of being in pain. Thank you in advance.

    • Jane Akre says:

      you are fairly close to Miklos and Moore in Atlanta and Dr. Veronikis in St. Louis. they are all experts in mesh removal…. you need an expert, in my opinion.

  52. cindy says:

    hello

    at this time i am praying so hard that i do not have complications from the mesh implant but my gut tells me i do..i feel so embarrassed that i am even having to discuss all this.. i had a hysterectomy in august of 2014 due to prolapse.. i was not having incontinence but was told after the hysterectomy i would def would need a bladder sling..i asked about the safety of these and about all the concerns being discussed.. i was assured that the new ones are quite safe…i refused the power morcellator due to the concerns about the cancer probability…since my surgery i have had lower back pain.. at times so painful its hard to stand..i have had vaginal pain that feels like a scratcher pad inside me..i had pain in my vagina within a week after my surgery so severe i would have preferred to give birth 100 times over rather than that pain.. i was told it was muscle spasms and that was normal for the type of surgery i had.. i was given muscle relaxers and pain meds..that particular pain has gone away…but this constant feeling that i have a wire brush or scratcher pad inside me is still there.. i have gone to the dr. who did my surgery and was seen by her assistants.. 2 of them.. they both did vaginal exams.. both of them touched the exact spot that i feel this pain.. i was screaming in pain.. the nurse had me hold her hand while being examined and i nearly broke her hand.. they both told me that the dr who did my surgery needs to examine me.. she was gone for a week.. i just got back home from seeing her.. after going thru a myriad of questions about stress and somatic ideas etc.. i finally told her THIS IS REAL.. THIS IS NOT IN MY HEAD.. she proceeded to examine me.. she pressed on my left and right vaginal wall and my bladder area and my cervix.. while this was uncomfortable it was not painful.. then she pressed on that ONE SPOT.. i nearly kicked her off her stool.. she stopped the exam and said it does appear that you do have ‘some sensitivity.’… i point blank asked her if this was due to the mesh.. she said she cannot answer that right now.. she is sending me for a rectal CT scan that is invasive..i asked why is that being done and she said to see if i have diverticulitos (? sp) i said i know i don’t have that.. she said she wants to rule that out first.. and if nothing shows up then we will do an MRI…i am having feelings of fullness and irritation and prickling feelings in my vagina.. i have constant back pain.. hurts to have intercourse with my husband, so we don’t.. he tells me this is “our new normal”.. and that “we will get thru this”.. i have never been one to sit around.. but due to the constant rubbing inside my vagina i just have to get off my feet.. and when sitting it is uncomfortable to cross my legs due to the vaginal pain.. something is not right.. i feel so embarrassed.. i should have known better.. i blame myself.. i am angry at myself for allowing this to happen.. i am a smart woman.. now i feel just plain stupid.. i see my course ahead of me thru all the other stories i have read on here.. how could i have let this happen to me and my husband and my family?.. i live in pittsburgh pennsylvania.. i need to find a doctor that will use the ultrasound that can detect mesh.. where do i go?… please please help me..

    • Jane Akre says:

      Hi Cindy- The “new” ones.? What is she referring to? Do you know the type of mesh you have? The ONE question to ask any doctor who is trying to encourage mesh is ask “Is It Made of Polypropylene?” That’s it! That material alone may be responsible for the complications we’re seeing but no one really knows at this time. Sort of like the game of Russian Roulette. My suggestion as a non lawyer is for you to collect your medical records- all of them! Including operative reports and nurses notes. Have a consult with a mesh specialist, not your corner gynecologist……. The advantage you have is that the mesh hasn’t been in very long …. BTW a CT scan will NOT see mesh… only an ultrasound will is my understanding from experts. top docs are Miklos and Moore, Veronikis, Dr. Walker from Orlando and Dr. Raz at UCLA. Email me for others….

      • Cindy says:

        Hi jane

        Thank you for responding. I am not sure how to directly email you. Would you mind emailing me your email address? I am not certain whether I should go thru with this rectal ct scan. I am so confused about what to do. I do NOT want to live like this jane. I feel this thing inside me. Is dr. Raz still taking patients??

  53. Cindy says:

    Hello again

    As i reread my post i realized i had left off that last week while going thru the torturous pelvic exam the drs decided i must have a yeast infection due to the pain and white/yellow and bloody discharge i had been having. So i was put on an anti biotic to treat a yeast infection. The discharge did clear up but the pain is still present. Today i was given a standing prescription for the antibiotic for “yeast flare ups”. I should tell you that i havent had a yeast infection for prob 20 years. I am 53. I think the most intelligent plan would be to have a translabial ultrasound to determine whats going on with this mesh in my body. Again i do live in Pittsburgh PA. We have a good womens center/hospital. But not certain if they do those ultrasounds. And if they did if my dr could read them and understand it. Please please give me some direction on where or who to turn to. Thank you so much. Cindy

    • surgeryinmay says:

      dear cindy,

      this is NOT IN YOUR HEAD!! OH MY GOSH!! it is the BLADDER SLING! I am so sorry to type this reply to you… but you NEED TO KNOW IT IS THE SLING.. You are not having a yeast infection… if you have diverticulos it is because of the mesh!! please believe me. i done the same thing as you, the doctors said yeast, hormones(on 4 hormone replacements), acid reflux,my gallbladder, depression kidney stones, arthritis,mono, cat scratch fever, and so many more excuses.. my back and groin and hips hurt so bad. I’m sick, just sick. NOBODY BELIEVED ME.. until i made the trip to UCLA to see Dr.RAZ.. he knew.. he knew as soon as i showed him the pictures of my last cystoscopy. i have had many surgeries. please don’t let anyone touch but dr.raz. it has to be removed at one time. don’t let anybody clip here, “cut away whats eroded through” that makes it so much worse. Im 42 years old, my life has been ruined by MESH! I have so many problems. all because of something that i thought would help me.. i blame myself to. I had NO IDEA that a simple little surgery would turn to pure HELL. please go see to Dr.RAZ, he will be doing surgery on me in May. yes, may. i am trying to be patient, its hard. Just this week, I am passing slivers of mesh, and mesh stones. I have passed several stones, but not slivers. its so painful.

      Please read all you can.. Read this site, meshangelnetwork, and meshmenot.. you will learn so much from these ladies. I wish the best for you. my ins covers dr raz, i flew southwest, and stayed at the tiverton house(they have a free shuttle to dr raz) and i rode a little bus to the airport for $10. Honestly i didn’t care how much it cost, I just knew i had to see Dr.Raz .

      HE has given me HOPE.. sorry I’m sure I’ve rambled, misspelled words, but i see these comments and just know i have to give my opinion

      • Cindy says:

        Hi friend

        Thank you for the response and my apologies for being tardy in my response. As a follow up to my situation. My own dr in Pittsburgh decided I needed to have a revision. She scheduled me for a revision to happen on March 16. She wanted assistance from a colorectal dr as she was concerned that my colon would be effected. I went to see him a couple days before surgery. He and his assistant told me that they would prob just take at least 10 inches of my colon to make it easier to get the mesh out. I was dumbfounded. He also said that had I been told her by my dr that this surgery may not help and could possibly make it worse. I said no. After consulting with my dr then both dr decided to go with a new approach. It was presented to me as an easy fix. Oh and while they were at it they wanted to go ahead and do a colonoscopy also. After leaving my dr office I thought long and hard about it all. I spoke with my husband. I decided NOT to have the surgery. Aside from the fact my husband got called out of town. I then decided to contact dr Veronikis and dr raz both. I couldn’t get in to see dr raz until July. And dr. Veronikis was April 16. I just met with him a couple days ago. He examined me and has told me I look bad “inside”. He said i am eroded. He can remove 100% of the mesh. I am scheduled for surgery may 16 with dr. Veronikis. He said I will need a second surgery in about 6 months to repair what I haven’t healed up on my own and to figure out what to do with my non pelvic floor and bladder support. My son is getting married July 18 and I want to be healthy and happy for the wedding. I pray God looks over all of us going thru these surgeries and difficult days ahead. Thanks so much for caring. Thank God we have this support. Cindy

        • surgeryinmay says:

          OHHH Cindy! I am so happy that you didn’t have that surgery!! Sooo glad! Your gonna be fine now. Me n you both! My surgery is the 11th. We’ll have to post after that! I know the recover will be hard. But we are gonna survive! Thank God!! And thank you for replying back. Take good care! We need to be as healthy as we can for our big surgery. 🙂

          • Cindy says:

            Hi my friend

            How r u? Did u have your surgery? I hope you are doing well. Please let me know how things are going for you.

            Cindy

          • surgeryinmay says:

            Hi Cindy, so good to hear from you. I’m good! Really good! How are you??

            Dr.Raz removed all of the mesh pieces and the left anchor that was embedded in me. I knew when I woke up I was MESH free! I just cant put into words the difference. The pain, infections, the grimace on my face. Its gone. I have a little bit of surgery pain and the catheter is aggravating, but nothing like mesh pain.

            My kids still can’t believe how much better I look. I just have to be patient and let my body heal. Dr.Raz said I had been mutilated, and my body had been in such trauma. I’m so Thankful for him.

            Cindy, please let me know about you. Did you have your surgery on the 16th?

            I hope you are doing good

        • surgeryinmay says:

          I hope your sins wedding goes Great!

  54. Cass says:

    I am looking for a doctor in the Midwest, Indiana , that will remove the entire bladder mesh. The urogynocologist i went to today wants to remove the middle. I can see on here that Dr. Raz seems to be the only one that removes the entire mesh. You would think out of all the claims, the judge would make the companies responsible, offer a doctor in every state be educated to remove this toxic mesh.

    The TOT is a barbaric procedure – the position they hang you in on your shoulders, the way it’s secured into a muscle in your groin or to your pelvic bone… This surgery is made to sound so easy –

    I see this has gone on for years, i am praying there are more educated doctors than one doctor for all the thousands of injured people.

  55. Lynda says:

    Dear Denise,

    I read your article and have mesh. I have been suffering for over 6 months with low back pain and no one has been able to determine the cause. Can the mesh be the problem

    Thank you.

    • Wendy Braun says:

      I had TVT put in Nov 2014, morning after in emergency room because of urine retention they placed a full cath for one wk, went back to surgeon who than for the next 3+ weeks self cathed and kept records of out put and retention, was awful and ended up with infection and than the surgeon again brought up she could take me back into surgery and clip the mesh to loosen it up. I asked her since I was having so many problems let’s just get it out of there, her response was I DON’T KNOW HOW TO DO THAT. Shame on any Dr. who says they can do it no problem but can’t remove what they have put into my body looses all my trust, I was in the middle of changing insurance companies so we did the second surgery 5wks after the first, can now urinate, but my SUI symptoms are all back with the addition of some urgency and still having the pulling sensation in my groin area. Where do I go or do now. If this Dr. would have even told me I would have to self cath , or did not know how to take it out I would not have had the procedure. Help please

  56. Mandy says:

    Denise,

    Thank you for this article. I had my sling placed in 2009. The past few months I’ve had horrible pain in my pelvis, groin & lower back. I also has this weird throbbing in my left groin. I have dispareunia. I went to my gyn to make sure everything was ok. He ended up doing an exploratory lap. He didn’t find anything significant, but some weird thin areasin my uterine wall. He said if I wanted to, I could have a partial hysterectomy & see if the pain goes away. I may have adenomyosis. Well, as an RN, this doesn’t sit well with me. I am only 35. I have this deep feeling that my sling is the problem. I asked a friend who is an RN in surgery with the urologist that did my sling & she said she’s only seen a handful of people have problems in 8 yrs. I’m seeing the urologist in 2 days. I’m so worried that he is going to blow me off & say it’s fine. I can’t live with this constant pain though.

    Mandy

    • Jane Akre says:

      Did you have the pain before the sling? Just to remind you…. often with a hysterectomy, a sling is put in as a precaution against future incontinence, not because it is medically necessary. You might be aware that sometimes a sling is put in without your knowledge and consent. Thank you.

  57. surgeryinmay says:

    Dear Mandy, Please know.. It is the sling..your gut feeling is right.. please don’t let anyone tell you any different.even your friend in the surgery unit.. My pain started out like yours, eventually got worse.. I so sorry to be so negative. I just wish I would have known. I will soon be 43. I had the miniarc sling put in 2011. I started having problems 3 Mos later, but didn’t find out till 2013 that it was mesh erosion.

    Whatever you do. PLEASE do not have a mesh revision, or mesh clipped,it will make all the pain and sickness Worse. Read and Search all you can. I am having complete mesh removal in May with Dr.Raz at UCLA.. please educate yourself. Don’t be surprised that your doctor’s blow you off. All of mine did. I’m sorry you are going though this.it is so sad. I hope to get my life back soon. My kids need their momma, my husband needs his wife. The pain and sickness is so bad.. good luck to you.

    • Mandy says:

      Thank you. I’m pretty stubborn & am constantly researching…..nurses are the worst/best at doing this. Hah

      I had he Lynx sling placed. I know for a fact hat it hasn’t eroded any of my “female” parts. From my exploratory lap, I have pics. Worried about the insertion areas due to the pain being in those areas the most.

  58. margie says:

    Dear Denise,

    I am a 57yo R.N. who had a tvt procedure in December 2013. The upside to the story is that I am continent, which is something we all want to be or we would not have agreed to undergo this surgical procedure with all of its stated risks. However what I believe is plaguing me at this time are the unstated consequences that may be due to this material that lives within my body.

    In September 2014 my health started declining, beginning with RLQ pain and constipation. This progressed to include generalized body swelling, stiffness of joints, muscle pain, overall malaise, fatigue, depression, and evidence of inflammation all over my body. I have been to see multiple specialists including, orthopedic, rheumatology and urology as well as my internist on several occasions. I have undergone repeated blood work, scans, x-rays and assessments. To do my part, I have adopted a vegan lifestyle thinking that this may help. In fact, I believe it has a bit. I also began taking Naprosyn again even though i had stopped that towards the effort of healing a potentially leaky gut. I feel like I am a team of one trying to unravel this mystery. I have never been so frustrated with the the traditional medicine model and the way it delivers fragmented care and how it actually can interfere with the goal of our return to wellness! I believe that I may have had some inflammation in my body prior to the insertion and that it exacerbated my symptoms. I do not know if it is possible for you to respond to me privately as well as on this blog. I need to make an educated decision, hopefully with the input of others whether or not to have this ethicon gynecare tvt sling removed. I wanted to get the general information documented and if someone needs or wants more I would be happy to provide it. I am also willing to help in any way I can to prevent others from experiencing the health issues that I have endured.

    I look forward to your response and thank you in advance for all you do.

    Gratefully,

    Margie

  59. Billie says:

    My life has totally changed a few months I had the mesh surgery back in 2011 and I am suffering more and more everyday. No doctor wants to examine further and see what is going on. For 2 years now I have been bleeding and my period is really messed up my bladder colon the pain is ungodly and so much more I can’t even find a doctor here in ky. Can anyone give me advice on who could do the surgery or at least listen and help me ?? I am praying for each and every one of you I never even knew my problems could be from the mesh so this is all new to me. I am so depressed and feel so hopeless can somebody help ??

    • Jane Akre says:

      Billie- please retrieve your medical records, all of them. We need to know what type of mesh you have. You likely will need a lawyer as well.

      • Billie says:

        I have my medical records and the surgery papers also the boston scientific was who made it

        • Jane Akre says:

          if you go to the southern district of WV, you will see the various mesh manufacturers. Click on Boston Scientific. On the top you will see the executive committee. Those are the firms working up these cases, the firms that have the most. They likely have the resources to handle your case. If you start with a local counsel in your state, make sure they partner with those firms who have already done the research…. no sense in reinventing the wheel…..

  60. Cass says:

    I am having removal surgery in St Louis with Dr V. I am scared.

    I know the mesh needs to come out, but mine was put in 2008. I hope I am not worse after the surgery.

    I got third opinion from a doctor in Indy, I went to see a vaginal physical therapist.

    I think what she showed me will help- but not until after the mesh is removed. She told me that the

    Tightness I feel is the muscles and since I’ve had pain, it’s like hitting someone in the arm. The second time you hit you flinch.

    I just laughed and said my vagina is not ” flinching” it’s shrinking!

    Lol say a prayer for me please for quick healing and the doctor can remove entire mesh.

    Thanks. Any suggestions for what to do or not do after surgery is appreciated.

  61. Vicky says:

    Hi, In Nov, 2014 I had surgery to repair a 4.5cm prolapse of my rectum and 3.5 of my bladder. They used part of my vagina to make a sling for my rectum and installed mesh in through the vagina anchoring it to the insides of the thighs. From the instant I woke up I was in pain! I was told every thing was fine and sent home. Two weeks later I hemorrhaged and spent a week in the hospital receiving blood transfusions they still insisted every thing was fine, mean while I have been I pain every day since. When I go to the bathroom It is almost scary because I know it will hurt. I constantly feel like i’m on my period but had a hysterectomy years ago. I have constant back pain! And now the latest and scariest part for the past several weeks I have been making a creaking noise coming from left side every time I bend down it sounds like Velcro! Its either my hip or the mesh or the mesh were its anchored to my thigh all I know is I am also having constant stabbing, pulsating pains in my vagina and it feels like I have just given birth and have fresh stitches down there! Not to get to personal! But I am going crazy with all of this! My Hip is so loud I put my cell phone to it and my sister could hear the noise. Has any one else heard of the Mesh affecting the hips?

  62. Wenda Snyder says:

    Denise,

    I’m so frustrated by all of this. I feel the only thing left for me is to die. I see a lot claims on the mesh I don’t even know at this point which mesh I have and mine was inserted June of 2001. And it seems the FDA is not even taking that year into the law suits. In 1999 I had a vaginal inserted mesh,again unsure type. It was for prolapse. Then in 2000 started to have heavy periods. They continued to get so bad I made appointment with OBGYN and at time I was 46 years old my OBGYN stated I needed complet hysterectomy. Due to having a bladder mesh, he wanted the urologist in the surgery to fix mesh after he removed uterus, Fallopian tubes and ovarys out. He wanted the urologist to then fix the bladder mesh. It took having caterer two times the day I was to leave hospital to pee on my own. Then had to go into urologist very next morning because I again could not pee on my own. Then another visit due to not being able to empty bladder all the way. As I was home reverting in the next six week I started to become incontenent again.So I called urologist and he had me return for a Duresfeer treatment in the uretha. This took care of the incontenents. So as time went on was trying to build my energy back and when I returned for OBGYN appointment I reported to him how fatigued I was and he said it would take awhile. But over the last 15 years every time I get in a exercise program, do to fatigue and pain I stop. IV had a lot of immune problems ect. Then four years ago my right leg and groin into my hip became so painfull I was sent to a pain clinic. About two years ago it began in left leg. It’s to point for last 3 years if I walk more then 15 min I’m just hurting so bad I have to sit. Know have continues bladder infection. I go in November 6,2015 to see urologist again to have mesh cheeked. I’m so afraid he will tell me it’s not the mesh. I’d like to walk and dance again. Last week I left my job due to being a NAC and just unable to do my job, my pain is so sever I’m taking four pain pills a day and still waking up crying. If there is no relief soon, I want to die, I’m 59 in December just can’t live like this any longer. Do you have any suggestions or know where I could get some help? Don’t care about law suits just want to feel like me again. Please it’s been 15years of knowing something wrong.

    • Jane Akre says:

      Wenda- Where do you live? Do you have any competent medical help? It doesn’t sound like it. Do you have a lawsuit? Do you have your medical records/ At the very least, you might be able to recoup some of your expenses AND a law firm can obtain your medical records. You will need to know what you have in order to be treated medically, at least it will help is my understanding. Depending on which doctor you choose, you may be able to find some relief which you certainly deserve. Please don’t give up…. just find the right folks to help! janeakre@meshnewsdeskcom

  63. Joanne says:

    I had this monster since 2006, I have had nothing but pain and it is getting worse sitting and standing does ease the pain in fact it gets worse I have constant bladder pressure, bloating, crotch pain this is why I’m still up 1:17am est I have fallen so much can’t keep count plus broke my foot was told I had possible scare tissue but she only want to do injections to see if they would shrink no test to see if there were any and where they might be at had my parathyroid removed not sure if this mesh is the reason itch in vaginal area all the time have. a rash from time to time but my doctor just thinks I’m complaining I’m depress have gain 60 pounds since the surgery asked by Doctor did anyone tell you to keep weight u dear controll I feel like I’m at my wits end can’t find a doctor in Phila Pa area if you have an attorney I just done also have other complications but what the use of complaining thanks whoever can help….Sincerely Joanne Patrick

  64. Joanne says:

    Please contact me by email typed my story it disappeared

  65. Dottie says:

    How do I find out if I have a mesh problem? I can’t find any radiology centers that even know what I am talking about. I live in Lower Slower Delaware. I need to determine if it is mesh or something to do with my bi lateral hip replacements. Had mesh done in 2003 and hips in 2004. Also can’t get good pics of abdominal area because of artifacts coming off of hip prothesis.

    Any suggestions where to go. Docs are no help.

    Anyone in Delaware with similar problem?

  66. Dottie says:

    Jane,

    I also have had a hernia repair. I got the surgery report from hospital and it says “sutured” no mention of any kind of mesh. Is that to be the truth. I heard others say the surgeon just doesn’t vocally record the the word mesh! Is that legal?

    How do I know for sure.

    Dottie

    • Jane Akre says:

      I don’t think they would leave that word out… in fact, they probably would list the maker of the mesh ie Bard or Ethicon, especially for reimbursement purposes. Check with your insurer as well. They dont pay for anything unless they know its value. Make sure you have surgeons notes and nurses notes…. in other words, the complete package of medical records. They belong to you. Bruce would know the answer to your question 954-701-5094.

  67. Patti Moro says:

    My pelvic floor sling was placed in 2000. After years of right sided pain and two surgeries to remove my colon, now have 10″ left, my long standing Gi doctor told me my continued right sided pain is due to mesh! I also have many allergies, occassional urine flooding when standing and other symptoms many have wrote about! I have seen many specialist and finally I have an answer! But, he thinks physical therapy and acupuncture are the answer! Does anyone know who in the Portland Oregon area I can see about having the mesh removed? Is it to late for me as its been in for 15 years? Oh, I forgot to mention, the doctor who put in the mesh did the colon surgeries, and he just had his license revoked!!!

    • Jane Akre says:

      Yikes. Dr Una Lee in Seattle is the closest we know of. She is a urogynecologist trained by Dr. Raz. She understands mesh injuries…!

  68. LISA says:

    I had the mesh removed this past March. I went through extensive pelvic floor physical therapy. Everything is much much better, except my right leg hurts so so bad almost everyday. Nothing relieves it. I still do the exercises and it helps a tiny bit. When I mentioned to my Dr that my leg still hurts so bad she says its not from the mesh. The Physical Therapist says that it is. I had a neve study today and there is no nerve damamge. This test was ordered from my PCP because I am a diabetic and was making sure I dont have neuropathy. Any way I just dont know what to do! I hurt in my ankle, deep in the calf muscle, groin and back of thigh. Do I go back to the Urogyn? I am so tired of hurting! Thanks for your help!

  69. Jennifer Stubblefield says:

    Hi Jane,

    I live in Alaska. I had a tvt uretheral sling in 2003. This cured about 80% of my incontinecnce after delivering my baby. I could live with the rest and the cytocele/rectocele I developed that were mild. Until recently I never suspected mesh. Since September I have had 2 Uti’s, a feeling of “pinching” on the right side of my vagina with certain movements, vaginal discharge no oder, dribbling after urinating when I stand, increased pressure in bladder. I am seeing my urogynecologist (not the urologist who put it in, he retired) in a couple of weeks. I assume that she will do testing for mesh erosion. My question for you is who is the closet mesh removal specialist to Alaska? I don’t know if that is what direction I am headed in but I would like to start lining things up since I know these specialist have lengthy wait list. Thank you for time!

    • Jane Akre says:

      Hi Jennifer- Don’t know of any close to Alaska. Perhaps Una Lee in Seattle. However, many would say leave it alone unless the pain is chronic as well as the infections. I hope your problems do not advance. Trying to remove mesh is problematic since it is a permanent implant.

      • Jennifer says:

        Jane,

        Thank you for your reply. My knowledge with mesh removal specialist is limited. In your opinion would it be worth the extra travel to go to California and see Dr, Raz or Mikos and Moore? Thank you again for taking the time to reply. Knowing now what I know about mesh, I would never have had it put in. I was never told. Of course that was 13 years ago so maybe they didn’t know. All I knew at 27 years old was that I didn’t want to be incontinent and wanted to get active again. I feel fortunate to have lived this long before my problems have started. I have one kidney and was born that way, so the uti”s are scary for me. I’ve also had increased vaginal discharge and that pinching feeling in vaginal area that is just not normal. And I think I might have mesh fibers in my vaginal discharge. Trying not to let anxiety get the best of me. I believe I have a physician who will take my symptoms seriously and will hopefull get appropriate testing ordered when I see her. Thank you in advance for any info that you can give me about mesh removal specialist if I have to go that route. I hope you know I appreciated your reply as im sure all the posters do!

        • Jane Akre says:

          Jennifer- A mesh expert would likely save you repeated surgeries. These pages are full of them… such as Veronikis, Miklos and Moore, Dr. Walker in Orlando, Dr. Twiss in Arizona, Dr. Hibner in Arizona…. put in those names and they will come up. I”m not a doctor so do not advise other than to say you do not want repeated exploratory surgeries by someone who is not focusing on these adverse events in my opinion.

  70. kelley says:

    Denise:

    Without great detail, I have had 3 mesh explant surgeries and 1 surgery for injections into nerves, I am better “inside”. I am currently having my second episode of severe itching in the pubic area on the outside. It is causing me to be isolated, miserable, and depressed. I have scratched to the point of broken skin. Do you know of any other complaints of this sort? My Dr. is considering another surgery, I don’t think my marriage will survive it.

    Thank You,

    Kelley

  71. Marina says:

    Have suffered since Obturator Hernia repair, with Marlex Mesh, in 1990. Have S1 and obturator nerve damage. Recent spread of the pain to the vaginal wall. Doctors do not seem to be familiar with similar cases, therefore, prescribe pills, nerve blocks, physio, ………, all of which do not work. Now concerned about erosion. Can sinus infection be caused by infection from mesh in obturator canal?

    • Jane Akre says:

      I’m not a doc or lawyer but if your body is fighting infection it is very likely compromised…. do you have access to mesh experts who are dealing with complications. They may be able to help. Please email me if you want some referrals…. not guaranteed but others report good outcomes.

      • Marina says:

        Well. Since I posted in early July, I’ve been having more and more pain, and spreading: groin, inner thigh, pubic area, hip, ……. . This week, through a very painful examination, the mesh was found in my groin/vaginal area. Doctor does not think it has eroded; told me it needs to come out, but no surgeon in my area that can do this type of surgery. The mesh has been in my obturator foramen and covering the pelvis for 26 1/2 years. I now wonder if this “sickening” pain across the pubic area can be caused by the mesh or if possibly another problem. In fact my whole lower abdomen has felt nauseous all day.

        • Jane Akre says:

          Being that pelvic mesh began to be used in this country in 1998, (TVT) your time frame is confusing…….unless you are referring to hernia mesh, which is the same polypropylene.

          • Marina says:

            My surgery was in 1990, using Marlex mesh for Obturator hernia. Surgery report states “Marlex mesh was fashioned to accommodate the Obturator foramen” and “a good view of coverage of the pelvis with Marlex mesh”. This was done through laparotomy (a long incision along the top of the pubic bone). In addition to the sciatic nerve injury this caused, I now have pain in the pubic bone, vagina, groin and inner thigh, left side, and sometimes a hard, painful ridge in the upper thigh, where thigh attaches to body. Increasing pain over the last 6 months. My family doctor has not found a surgeon experienced in this type of mesh complication in Ontario, Canada. I am now in Florida and seeking info of where I can go for consultation with an experienced surgeon in removal of TOT/pelvic mesh.

          • Jane Akre says:

            Marina- Dr. Christopher Walker is praised by many for his surgical skills in mesh removal. Contact him in Orlando

            https://www.healthgrades.com/physician/dr-christopher-walker-3kxyc

  72. Darlene D says:

    Hi, my name is Darlene and I had the transvaginal mesh surgery back in Feb 2015 and it has been a nightmare from Day 1……I had a lot of pain which I thought was strictly coming from just going through a surgery but unfortunately I kept suffering & suffering, my surgeon agreed to see and check me by doing an internal exam and straight up told me there was nothing wrong!!! I looked at him and said, really, well why am I having so much pain, his reply was that he felt I had severe case of bladder spasms and that he would start me on a medication to help those spasms!! Things did not improve and I called my surgeon again to inform him that something is still very wrong, I don’t feel any better! He said he couldn’t do anything more for me so go see your family Doctor! I was mortified to say the least, after all he is the one that did the surgery. I went to my family Doc and he sent to another specialist and her first thought was that the mesh might have embedded in to my bladder or it could one of 3 other things, that being said, she wanted to get me referred to another specialist as quickly as possible because of the symptoms I was having, which were getting UTI’s every single month, filling the toilet bowl full of blood after returning from my walks and constant bladder spasms! I had to wait for months upon months to get referred but I finally got the referrel and this specialist did a cystscopy and found that the mesh on my left side had embedded in to my bladder and because it was in there for such a lengthy time frame, it had stones attached to it!! It was pretty scary knowing that the mesh was in my bladder and so I was referred to another surgeon so that he could remove that portion of mesh out and he was just fantastic with me! I recently had that portion of mesh removed and my surgeon had explained he had a very difficult time removing it, as a matter of fact, he was so close to making an incision on my belly to get that mesh out but he decided to try one more time and he got it!! Unfortunately I ended up with extremely low blood the next morning and because my blood was so low, I needed 2 blood transfusions and then I was experiencing terrible low belly pain, so much pressure, so I was sent for a CT scan and come to find out, I had an 8cm blood clot in my low belly! They had to take me back to the OR to remove that blood clot and I ended up with infection the next morning, it was quite the ordeal! I was in the hospital for a whole week and I had to come home with the catheder in me for 2 weeks and I was pretty weak for weeks but I started feeling better after a few more weeks had passed, other than being tired, I was doing good!! I went for 6 week post check-up and felt really good, other than being tired!! I was so glad that the nightmare was over but guess what, something went wrong approx 7-8 weeks post-op…..I started with these weird vaginal pains, I thought it was another UTI so my family Doc sent me for a urinalyasis & urine culture, it showed I had some blood in my urine so my Doc put me on an antibiotic but I got no better and my symptoms were getting worse so he sent me for another urine culture and it showed that it was normal so I was like, my god what is causing so much pain in the vaginal area, he wasn’t very helpful so I called my surgeon who had removed the mesh on my left side and he was concerned so he said we better do another cystscopy, he said everything looked normal and my bladder looked perfect from the surgery he had performed on me! I was happy to hear that but what I wasn’t happy about was why oh why am I experiencing such intense vaginal spasms and could it possibly coming from the mesh on my right side, my surgeon said it’s not likely! I did have an internal exam by a Doc @ a clinic a few weeks prior to having the cystscopy and she thought I was a little dry and suggested Vagifem which I have been using but I’m not feeling any better what so ever and honestly I’ve never been so discouraged! Sorry but I did forget to mention I had a full hyst 14 years ago and I was on a hormonal replacement drug for 5 years after that surgery and then my Doc decided to take me off it and I’ve never had a hot flash or night sweats, nothing at all!!!! I could really use some advice as to why I’m having these awful vaginal spasms!! Could it truly be coming from the mesh that is still sitting on my side??? I know these pains I’m getting are not in my head and I feel like I’m going crazy with the not knowing!!!

    • Jane Akre says:

      Darlene, It could be from remaining mesh or nerve damage, according to what docs say. Can you get in with an expert for a consultation? It doesn’t sound like you have a doctor who is helping.

      • Darlene D says:

        Hi there, I have placed a call back in to the surgeon that had removed that portion of mesh from my left side ( that side that had embedded in to my bladder ) and I spoke to his secretary to please inform the Doctor that I am still having a lot of vaginal pain! I’m currently waiting for a phone call back! He has ordered a pelvic ultra sound and he even marked RUSH on it and when his referrel got to my local hospital, the radiologist apparently has the final say on when he feels I should hav ethis pelvic ultra sound done and because he felt it was of any great importance, these pains feeling like they are tightening, squeezing spasms, almost like stabbing pains and sometimes it feels like there is so much pressure there in the vaginal area!! I just don’t understand how this radiologist could over ride what my surgeon’s request and make me feel like it’s no problem to make me wait until Jan 19th/2017……to me that is just insane!!! I honestly felt so great when I seen my surgeon for my 6 week post-op check-up, as I mentioned in my last post, just tired! I have been back to see my surgeon and he did do a cystscopy and he also did an internal on me and he couldn’t find anything wrong!!! I did ask him, Doctor, could all these vaginal pains be coming from these intense vaginal pains and his reply was it’s not likely!! Could it be possible that all these pains be coming from the remaining mesh that is still sitting on my right side??? I’m @ a complete loss and before I forget, I did ask the Doc about removing the remaining mesh and he said he could but it would be very very difficult!! If this pain keeps up and if they can’t find anything through doing cystoscopy’s , pelvic ultra sound’s and doing internal’s on me, they better do something before I lose my mind!!! These pains started about 7-8 weeks after my surgery so why would that remaining mesh on my other side start causing problems out of the blue like that, I just don’t understand so could it really be nerve damage!!! I’m also going to see another specialist @ my local hospital but she is so blessed busy, I can’t get to see her until November! I feel so discouraged, I just hope & pray my surgeon can figure out what is wrong and calls me back today or tmr, if not I’m calling him back again!!

        • Jane Akre says:

          You may want to get a diagnosis for nerve damage if it applies,,,, it could greatly affect your settlement outcome.

        • Sunniee says:

          Darlene, your doctor does not care. He does not have a clue about mesh problems. Read theses comments. Read foreign body reaction to mesh. All of your problems are because of the mesh pieces that’s left inside of you. Please listen to me. Donot waste your time with that doctor.. call dr shlomo Raz.

    • Sunniee says:

      Dear Darlene. I lived your exact life. The stones, are mesh. I passed those in my urine. It’s horrible. The spasms and pain are from the mesh eroding deeper in you.
      You will not get better until all of the mesh is removed.
      Do whatever it takes to get to Ucla. Dr.Raz, Dr.Kim, or Dr.Baxter can make your life better.
      Dr.Raz removed all of the pieces of mesh and anchors that the other doctor left. It’s very complicated. The doctor that cut your mesh, made you worse.
      Sorry.

  73. ELIA G says:

    I have been reading most of these comments and I finally find people who share my pain, I have been dealing with back pain and groin area pain as well as pelvic pain and drs, do X-rays, sonograms, and keep telling me my organs are fine but I am scared and I know there is something wrong with me I feel it, I need help!!!!

    • Jane Akre says:

      Well youve come to the right place. If you are represented, might not want to use your last name. Medical needs are first… do you have an understanding and competent doctor? What type of mesh do you have? hernia or pelvic? abdominal or transvaginal? Do you have your medical records? That is very important. Please obtain all you can so you understand what you are dealing with. That’s the first step. If you ask questions here or on Facebook you will get a ton of responses. Also use the search bar to look up your mesh, manufacturer, your law firm etc. Remember – you cam can comment anonymously. Just make up a name. There are some doctors others report they’ve had success with so let us know where you are located and if you can travel? Thank you and I’m sorry.

    • Marina says:

      Understand your physical and emotional feelings exactly. Surgeons I have contacted tell me they do not have expertise in removing mesh in my case, over obturator canal and pelvis. Say it is a complicated case and likely impossible to remove mesh. Experiencing more and more pain and sometimes nausea. I fear there is more than nerve impingement and scar tissue. If only there was imagining to view polypropylene.

  74. Debbie G says:

    Hi Jane,
    I live in Cornwall, England and had a TVT fitted in 2010. Amongst other issues I now have fibromyalgia, Lupus and hashimotos disease. I have raised leukocytes, CRPs and have to urinate standing up. I have fecal urgency too. Has anyone else from the UK contacted you because I want to talk with someone nearby who has had similar experiences.
    Thank you
    Debbie

  75. Bonnie mann says:

    I’m needing to talk to someone

  76. Marina says:

    Hi Jane. Wanted to reach you but email sent to janeakre@meshnewssdesk.com was returned.

  77. Carol H says:

    I have read many of the comments on this site. I am so glad to have found your site. I too am desperate for help and answers. I have constant back pain, groin pain and what I believe is nerve pain in my buttock and tailbone. I also have a lot of pinching and pressure at the vaginal area. I also have difficulty peeing normally for the last few months. My pain and these problems started a year ago and have continued to get worse. I had transvaginal repair with ‘Alyte’ mesh for POP 5 yrs ago. When I went to the original surgeon, she said nothing was wrong with me and I should go to a doctor for my back pain. I then went to a different urogyn and she did a lot of test to see why my urine is hard to flow etc. She thinks I need to have the lower mesh, that she can reach vaginally, removed. She said it was causing my R groin pain and blocking my pee tube. I am very hesitant to do this, but I am looking for help and relief. I hope someone can help me get started finding the right doctor/s to help. I don’t want to make another bad decision about a surgery. I amfrustrated and overwhelmed to know where to go from here. I live in Houston but will be moving in near future to Dallas Ft Worth area. Thanks in advance!!

    • Jane Akre says:

      Hi Carol- Finding the right doctor is essential. You don’t want someone who “thinks” they can get your mesh out to be experimenting on you. The docs with the most experience are Dr. Phillippe Zimmern in Dallas, Dr. Shlomo Raz at UCLA, Dr. Veronikis in St. Louis,, Dr Miklos in Atlanta, I’ve heard good reports about other doctors. Write me if you’d like more… janeakre@meshnewsdesk.com I do not personally vouch for any of these docs since I”m not mesh injured and do not have first-hand information.

  78. Melissa says:

    It is 2017 I can’t believe TVM is still being used.
    I am 41. I went to my Dr planning to get a bladder sling using my own fascia. My Dr talked me into the TVM by saying, the stuff I see on TV is a different product. Turns out that was a lie. I had the initial surgery Dec 1 2016. I had a second, to correct the erosion March 14. Which has made it worse. Now instead of a few pieces poking out there are many and larger chunks as well. I am not sure where to go to get help. I want my life back.

  79. Lynn says:

    been suffering since 2005 torn obtruator, nerver, blood transfusion, still swelling in right thigh, and my CRP level is 22, then had another put in but couldn’t take the old one out, had to have si fusion, can not prove anything goes back to the sling, attorneys making money and I am hurting changed my whole life, I am now 73 still no settlement hello they want proof read the records but docs cover for each other

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