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The Faces of Mesh – One Woman’s Baffling Battle

Barb Vance

Barb Vance

The Faces of Mesh – One Woman’s Baffling Battle

October 4, 2013

By Aaron Leigh Horton

*Editors Note– Vance is at UCLA at this writing and planning surgery with Dr. Raz on Friday, October 18,2013!

Navigating through a violent Texas rainstorm in August was not how I pictured the moments leading up to my very first interview with another mesh-injured woman.  Having watched my own mother struggle with this injury, I wanted to be there early, reserve the most comfortable chair for my soon-to-be new friend.  Instead, I found myself pulled to the side of the road texting an apology for my tardiness.  I felt I’d already let her down, as I know how difficult it is for mesh-injured women to make it out of the house or even out of bed some days.  I didn’t want her waiting on me.

As I walked in 15 minutes late, I noticed a demure woman, tucked away in a corner, her outfit of black and white, perfectly matched and tidy.  I next noticed her lovely, long brown hair, skillfully coiffed, and thought, “She looks so beautiful.  I hope today is one of the good days for her.”

She immediately recognized the pink shirt I told her I’d be wearing, and then do you know what the first thing Barb Vance did was?  She asked about me!  How was I doing?  No, no, no- this is all wrong.  I wanted our time together to be about her, and I’m late and now we’re talking about me, and I must not be very good at this interviewing thing.  In the midst of my frantic arrival, her acceptance and warm spirit was radiant, and we began getting to know one another.  She was easy to talk to, gentle, forgiving . . . a mother.

We sat at one of the few available tables at Starbucks in Tyler, Texas and began to share how we had come to be sitting across from one another.  Within moments, goose bumps and tears welled up for us both, and we clasped hands, “You really do understand,” we each muttered.

Aaron Leigh Horton

Aaron Leigh Horton

Barb has been living with the adverse effects of transvaginal mesh implantation for seven years now.  The mother of two daughters and one son, I can empathize with her from a different point of view, as a daughter walking through this senseless, man made offense, as many of us now view it.  This common bond, through the others perspective, seemed to be healing for us both.  I tried hard to conceal my own wounds, because this is Barb’s story.  This is Barb’s voice to be heard.

At 42 and after living with the embarrassing and sometimes debilitating symptoms of stress urinary incontinence (SUI) for seven years, Barb decided to attend a medical seminar about a revolutionary way to treat her condition.  As a medical assistant, Barb was well read regarding her condition and when a co-worker gave her a marketing brochure about the educational seminar, she was eager to learn more.  At a meeting room inside a local hospital in mid 2006, Barb listened intently to the urologist who would eventually perform her mesh implant and who was espousing the benefits of using synthetic polypropylene mesh to repair SUI.  Alongside other speakers, the doctor answered questions and explained the procedure.  Barb reflects, “I remember being at the event and them speaking about this technique as the latest and greatest.  There -were at least 100 people there.  Refreshments were even served.”

Vance and friend

Vance and friend 

Within three weeks, Barb was scheduled for a surgical consult with the doctor who’d given the seminar.  As a matter of convention and industry standard, pharmaceutical companies and medical device manufacturers often pay doctors a consulting fee to present seminars about new products the companies are promoting.  After some urodynamic testing to qualify her as a candidate for the procedure, Barb was on the books for mesh implant for October of that same year.  A hysterectomy at age 28 due to severe endometriosis coupled with a bladder suspension to fix what was then a minor problem with SUI left Barb hesitant for more surgery.  But ultimately her SUI symptoms progressed to the point that she could no longer live a normal life.

Now 48, she reflects on that time, six years ago, and describes the sense of hope in the weeks leading up to her mesh implantation meant to fix the SUI, “I was newly married and had begun a career as a medical assistant.  I knew I had to do something, and I didn’t want to keep dealing with this [SUI] in my new life.”

The procedure for implanting the mesh was described to Barb as an outpatient or day surgery.  She was told she would leave the surgery facility the same day with the possibility of an overnight stay, depending on when she was able to urinate on her own.  Having previously experienced the pain, irritation and nuisance of urinary catheters, she opted to stay the night to ensure she’d leave the hospital without one.  Ultimately, she left disappointed to be dependent upon a catheter but grateful for the kindness of her friend, Laura, also a nurse, who offered to help her recover at home.

“You do learn who your real friends are when you ask if someone will insert your catheter,” Barb says through a smile that belies the sting of a past rejection.  Her friend’s help was what kept her out of the ER in the days following surgery.

Recovery from the mesh implant surgery was much longer than she anticipated or expected, and as she continued to feel her surgical wounds healing at a rate typical for this type of surgery, a new symptom appeared that she describes as a chronic, unrelenting fatigue that simply would not subside.  That feeling never got better, in fact, the fatigue steadily worsened.  She explains a feeling of overall malaise and discomfort, but the surgery did remedy the incontinence, and for that she was thankful.  Throughout the holiday season and into the beginning of 2007, she continued to decline however.  The daily fatigue began to feel more like a serious case of the flu.  Her doctor did a myriad of tests, but found nothing remarkable.  “It hadn’t occurred to me yet that the fatigue could be related to the mesh.”

Aaron Horton and Barb Vance

Aaron Horton and Barb Vance

But by February 2007, Barb’s hair had started falling out; she was having heart palpitations; hot and cold sweats; and she’d discovered her thyroid levels were abnormally low.

Months and months went by, and new symptoms continued to appear.  She broke out in a full-body rash and also began to have trouble with concentration, another clue that something was terribly wrong.  With each disparate symptom, she scheduled an appointment with her long-time family physician, Dr. Dale Bradley.  Stumped by the barrage of seemingly unrelated symptoms, Dr. Bradley kept working with her to treat each new ailment independently, but he also began researching, looking for any answer he hadn’t thought of yet.  At about this time, Barb began to experience pelvic pain as dyspareunia (pain with sexual intercourse).  She also began to have pain that started in her groin and shot down her left leg, something that felt like “electric shocks,” something that still takes her off-guard often.

In March of 2007, with the urging of Dr. Bradley, Barb had to take a leave of absence from work.  She simply could no longer keep up with its demands.  With sorrow in her voice she says, “I had so much anxiety about making a mistake when dealing with patients that I made the decision to leave a job I had for two years, a job that I loved.”

Barb says that having to quit her job was a wake-up call.  Her doctor helped her apply for medical disability while together they continued to investigate the cause of her perplexing group of symptoms.  In early 2008 annual blood testing revealed her white blood cell count was elevated, and she was also enduring painful nightly abdominal bloating that was not a result of her diet.  Dr. Bradley ordered a colonoscopy, and the results were normal and unremarkable.  Staying in close contact with her doctor, she scheduled appointments when recurrent symptoms became severe.  Barb had become fearful, deeply frustrated and discouraged at the lack of answers.  She began to descend into a deep depression, as she was barely able to carry out the daily demands of her pre-mesh life, and pleasurable activities were simply impossible because of her painful and unpredictable symptoms.

Anonymous woman 200

Anonymous woman, WikiCommons

 

By April 2009, she found herself in the emergency room, unable to breathe, in severe lung and chest pain, and in-and-out of consciousness.  Once stabilized, she saw the ER physician.  A look of disbelief on her face, she tells me, “I’ll never forget it.  He walked into my room chuckling and without looking up from my chart said, ‘I had a patient here recently who had his leg cut off by a train and he didn’t need this much pain medication.’”

Over the course of my many conversations with mesh-injured patients, it’s not uncommon that I hear of unkind and categorically abusive comments doled out toward them haphazardly.  These subtle and not-so-subtle invalidations by medical professionals, who are the very people who have taken an oath to do no harm, have done an immeasurable harm to the emotional well-being of so many women in Barb’s situation.  After a stay in the hospital for five days, Barb was discharged with a diagnosis of pneumonia,” the doctor claiming nothing out-of-the-ordinary in her X-rays or other imaging tests.  Barb did not feel that she left with an accurate diagnosis.

However 11 days later she was back in a different emergency room with the same symptoms.  This time the team of medical experts discovered two blood clots, one in each lung.  Barb felt grateful to be alive and to have an answer and prognosis.  She was put on blood thinners and spent 13 days in the hospital under observation until the clots were gone.  Outside her long-standing relationship with her family physician, this experience was her first with a compassionate doctor who seemed to take her complaints seriously.  Subsequent appointments with specialists revealed a rare autoimmune blood disorder called Antiphospholipid Antibody Syndrome (APS), a condition that causes the body to produce antibodies, which mistakenly attack phospholipids, a type of fat.  When antibodies attack phospholipids, healthy cells are damaged, resulting in blood clots in the body’s arteries, veins, legs and lungs.  APS is a serious, lifelong and life-threatening illness.  Barb now adds to her daily routine of creams, oral medications and supplements, a regimen of anticoagulant medication to keep the disorder in check and to keep blood clots from forming again.  She often credits the second ER doctor, Dr. Bradley King with saving her life adding, “I love that man.  I truly believe I would not be here without him.”

Even as she felt the beginnings of a true understanding by some in the medical community, she began to experience even more symptoms including the return of SUI, which was the specific condition the mesh implant was meant to remedy.  In addition, her bladder and rectum began to prolapse, a condition referred to as Pelvic Organ Prolapse (POP).  These too were new symptoms, adding to the substantial and still-growing list.

Dr. Shlomo  Raz UCLA

Dr. Shlomo
Raz UCLA

With her symptoms and commensurate medical bills mounting, her marriage began to suffer under the weight of immense responsibilities.  The couple’s shared life had gone from date nights and plans for their future to a dizzying pace of doctors’ visits, suffering, confusion, and misunderstandings that created an insurmountable chasm of resentment between the two.

In November of 2009, Barb decided to file for divorce, feeling guilt and a conviction that her condition was unfair to her husband.  She recalls the way her husband tried to help by saying things like, “Why don’t you just go on a walk?” which only fueled her feelings of invalidation, being misunderstood, and of feeling so alone, even while married.  Intimacy was physically painful due to complications from the mesh.  Pain in her groin made a love life impossible to enjoy.

I decided I’d rather just be alone.  I couldn’t even give to myself anymore.  I knew I couldn’t give to him.”

She reticently admits the relief she felt at no longer being responsible for loving someone or being expected to give from an emotional reservoir that was completely empty.  “I didn’t want to divorce, but I didn’t know how to juggle my marriage, the needs of my children, my health condition, and my sense of responsibility in all those relationships.”

By 2010 she confided in her family physician, Dr. Bradley, that she thought there was a connection between the mesh, her rare blood disorder and possibly the other symptoms that had mysteriously presented since her mesh implantation.  Barb did hours and hours of research about not only her failed SUI and newly-developed POP, but she also found many other women’s stories, which were similar to her own.  She shared this research with her family doctor, and after future discussions and a few more appointments, they decided together that the mesh was related to the all these disjointed symptoms, and in fact, Dr. Bradley said, “It’s got to be the mesh, and it’s got to come out.”  Unfortunately, her gynecologist felt she was too high risk for mesh explant (a surgery to attempt to remove the mesh) because of her diagnosis with APS and its concomitant danger of uncontrolled bleeding during surgery.  Barb recalls, “I felt a sense of. . . Wow!!  After being so misunderstood for so long, the isolation had set in, and realizing that I wasn’t alone; I wasn’t the only one; I wasn’t crazy, gave me the strength to contact Dr. Shlomo Raz” (the leading expert in the adverse effects of mesh implantation and the removal of mesh).  I felt like I had been slowly losing my identity, and I read over and over again that other women felt the same way.  A mixture of hope and panic in her eyes, she says, “My explant surgery is scheduled for October of this year, but the cost is overwhelming, and I pray that God will provide a way for me to go.”

Barb is considered a high-risk patient, but Dr. Raz believes the mesh explant is worth the risks her blood disorder presents.  As a precaution, she will be meeting with a hematologist in the weeks leading up to her mesh explant and a hematologist will be on-site to monitor her condition during surgery.  The doctors will continually test the viscosity of her blood and change her medications as needed to minimize the risks.

###

I, and others, advocate for Barb and every other woman who has been deceived by the mesh manufacturers, invalidated, discarded or forgotten.  To Barb and others like her, I say:  You are not discarded.  You are not alone.  You are not crazy.  You are precious.  Your lives are worth fighting for, and you matter to us, Mesh Warriors, with a just cause and a love that cannot be thwarted even by the resistance of powerful adversaries.  You, Mesh Angels, all have one thing in common: A very strong will to live.  Working together, I believe we can and will manifest justice and a pathway to healing for you.

–End–

 

 

55 Comments

  1. Carmel Berry says:

    Tears in my eyes. So familiar, yet so personal. Best of luck for your surgery Barb… from us all ‘down under’. xx

  2. Jessie says:

    Tears for me also. I felt I was reading my own story. Blessings and determination for ALL OF US <3

  3. Kimberlee says:

    Wow! I needed this article, this day ! I only wish my husband would read this and understand that this is so real and so very hard to live with. Grateful for you sharing your story Barb. Very best luck to you on your surgery and recovery!

  4. Ksgal says:

    We wish you the best of luck. My mother had removal surgery with Dr. Raz and doing amazingly well. Reading this is exactly what she went through and we had to fight to get to the right place which is where you are now. God will guide his hands and comfort you during your recovery.

  5. Dawn says:

    I wish you the very best !! UCLA is amazing.. It will be one year ago on 10-29-12 that I got my life back .. Mesh kills, maims and destroys our daily existence .. To finally have a Dr. Admit to me that the mesh was bad and I was not crazy was a gift from GOD.. Prayers and love to you 🙂

  6. Ruth says:

    Thank you Aaron for understanding so well, and for putting that understanding into such eloquent words.

    Barb, I hope all goes well with your surgery and subsequent recovery. Your surgery date is my one-year removal anniversary. It has taken this entire year for me to recover from the nerve damage, and I do still have a ways to go, but my recovery has been truly remarkable and I feel I have at last come back to life!

    It’s amazing how differently we all are affected by these inadequately tested products; I suspect this is one of the main reasons for the failure of the medical profession to recognize the connection between mesh and our myriad symptoms. What is really needed in each country is a national database and mandatory reporting of complications.

  7. Fred Crane says:

    First God bless you Aaron for the things you do. Barb I read your story and my heart goes out to you, things wil get better I swear to you they will. I recall going to the doctors office with wife we met later in life married in 2005 we were in our 40s then. We went to the doctors office for her SUI, he told us of this “great new thing” it’s like a hammock for your bladder he said. I can recall how excited we both were, we love getting out in the woods or the beach long drives to where ever. Those thing had gone by the wayside with her SUI. We thought how great it would be to get back doing the things we loved soo much. She had the mesh put in here in Kentucky in 2007. Right after the surgery she had pain down there we thought it was just from the surgery, but things got worse SUI worse infections worse WALKING not gonna happen. She was so tired all the time she had pain in her lower back (bad pain) pain in her leg pain during sex thats the worse like I said married in 2005 we were still a newly married couple. I love her soo much and to see this made me so mad. I wolud go with her to her doctors appointments to the pain clinic yes it was that bad. She was taking so much pain managment meds it changed her. Flash forward to 2013 after we finaly found out what it was we found the Best explant doctor in the world DR Francis. U of L Kentucky Division Chief and Fellowship Director, Female Pelvic Medicine and Reconstructive Surgery

    Department of Obstetrics, Gynecology and Women’s Health. Sean Francis MD is an obgyn who specializes in obstetrics & gynecology. Dr. Francis is licensed to practice in Florida, Georgia, Arizona, and Kentucky. He practices obstetrics & gynecology in 401 E Chestnut St Unit 410, Louisville. You never here from the husband on here so I just had to share. I Love and pray for you all. and a big thanks to Saint Jane. God bless

    He under stood. We went and had the crap taken out He said he got about 96% of it.

    • Bejah Notrettu says:

      Fred, I am very happy for you both and trust the healing continues to go well. I hope that you and others who have the extraction done do not forget us. We will all, I expect, be very anxious to know how life is post extraction so do send us Christmas cards or something :-).

      On a more serious note I would like to ask you a question that has been haunting me since I first read your post. I do not want to upset you or project my considerable fear but please tell me…is 96% OK? Are you comfortable with 96% What about the other 4% that may still be leaching toxins into your lovely wifes body or is that just a theory…what do we really know at this point (I wonder) about the long term effects of (1) The toxic mesh having been in us in the first place, and (2) The possible long term effect of a remaining 4%…do you know where in her body that 4% is and will it remain there? Will it continue to degrade like plastic shopping bags buried in the earth and eventually all be eliminated as waste.

      There is so much I still do not know and I wonder if others do. I am sure you must wonder about these things but especially now just want to forget it and return to a “normal” life. I wonder what your doctor said about that 4% or what supplements, etc. your wife may now be taking to keep her immune system strong.

      I am a little more rattled that I have been because I will have the extraction in early 2014 so even my dreams are riddled with questions.

      I can imagine your relief, and it is wonderful to have a high level of confidence in your doctor. I suppose we all live with 4% of a lot of things without even knowing it! Take care and do let us know how you are from time to time.

      Bejah

  8. Rebecca says:

    I read this and the only thought I had was, “OMG this sounds exactly like my life!” I too had a hysterectomy at age 25 but mine was for a prolapsed uterus. I was told by my OB/GYN that I didn’t need anything “tacked up” at that time. I put off having the bladder surgery due to being in nursing school and I simply didn’t have time with nursing school and being the mother of 2 children in elementary school and a wife of 13 years to a wonderful man with his own health problems. My husband had developed something called Neurocardiogenic Syncope, basically he passes out without warning. Newly graduated from nursing school, caring for 2 children, caring for an ailing spouse left little time to reflect on my own health needs. I had horses and after just dealing with SUI for 4 years I decided I was tired of peeing on myself every time I lifted a 50# bag of feed or a 65# bail of hay. I spent my first year after nursing school working in OB post op caring for patients after surgeries such as hysterectomy, TVT sling(Bladder mesh implantation for SUI.) I did my research or so I thought. I finally after dealing with SUI for about 4 years and 6 years after my hysterectomy had the procedure done. It was Nov of 2006 about 2 weeks before Thanksgiving. I had to have my then 14 year old daughter to drive me 20+ miles to spend Thanksgiving with my mother and family. I have had all these symptoms as Barb, including breaking out in all body hives after what was thought to be an anaphylactic reaction to something unknown, but instead of the APS I was diagnoses with another autoimmune disease known as fibromyalgia. I have also had to quit work as an RN which I loved and I have not had the opportunity to have my mesh removed as I am having to fight for disability at age 39 and I have no insurance and no $ to see a doctor at the current moment.

    I truly pray that all of us find some sort of peace with all this and physical recovery. I pray for a painless and speedy recovery for all of us!

    Barb may you have a total and speedy recovery!

    All of us will remain in my daily prayers!!!!

    Rebecca

  9. `Tammy says:

    God Be with you and keep you safe. I pray God be with you before, during and after your surgery. Thank you Barb and Aaron for sharing this story. We are all sisters, daughters, mothers, friends and aunts. God has given us each other to walk this path of mesh together. We have hope and we are not alone. Be Blessed and as always thank you Jane

  10. Lorri says:

    October 20, 2013 @ 10:07pm

    I first want to send a prayer up for Barb, that all goes well with your surgery and future health. I too suffer from Mesh that was implanted March 2010, following a partial hysterectomy and bladder prolapse. I was told that I had a fibroid tumor and once removed if my bladder had fallen too much my doctor will lift it while completing my hysterectomy. I did not find out that mesh was used to lift my bladder until I went for my 6 week checkup following surgery but I started experiencing the side effects of mesh several days after surgery and it’s been a struggle every since then. I’ve been to several doctors and it seems like they disregard the pain and suffering that you tell them about, I finally got a student doctor to listen and perform mesh excision, but all of the mesh was not removed and now I’m having to have a second surgery for removal plus SUI and bladder prolapse has reoccurred and talks of a new improved mesh not made of polypropylene will be used to correct SUI and POP, but I’m concerned about having any mesh implanted. Does anyone have suggestions?

    • Jane Akre says:

      Not made of PP? What is it made of? Is your surgeon able to do sutures alone? Does he/she believe you are a candidate? Who are you using for your mesh removal. MND has not heard of too many who can do that so we’d love to know any names. Please ask folks on the Facebook page so see if they know off any doctor you’ve been referred to. And Lorri please sign in for the updated newsletter letting you knows what’s new. Thank you…Would love answers to those questions…~JA

      • Aaron Leigh says:

        Hi Lori- I agree with Jane. If you can share the doctor who did the excision, we’d love to speak with him. The community at large would greatly benefit from knowing about a mesh that is not made out of the polypropylene, especially if it’s already been used. Let us know what you find, out and thanks for your comment!

        • Kara says:

          They can actually use a skin graft from your tummy area. They form it into a sling and use it in place of any mesh material. Why dont they do this with ALL patients? I can only guess….money perhaps?

  11. Betty says:

    I’m so sorry you went through this.Kudo’s for keeping your spirit up through it all. Thank you Aaron for going to TX to interview her. You are a great writer. This is my story also. Hysterectomy at 28. I didn’t want it, but was in so much pain for adenomyosis (similar to endometriosis) that I had to give in. I was much better after the hysterectomy. I lived with a leaking bladder for a number of years until I was about 48. It was so bad, that if I coughed I’d wet my pants even with a pad. So yes, this mesh was a great answer. It worked wonderfully for me for almost 2 years. Then the pain. Bad, horrible, life stoping pain. I believe my mesh shrank. I have the groin pain, the dyspareunia, the left leg shock stopping pain. Dr. Raz has done 3 surgeries on me, and I’m going back for a 4th with him. How the FDA can say that SUI mesh has manageable complications is beyond me. They are anything but manageable. I am seeing a hematologist tomorrow, so I read this just in time, I didn’t see any relationship here. My mesh is 99% removed. It is so sad that Dr.’s are not up on this. The media is ignoring us. Our pain is so minimized. I’ve been going to a Dr. for 3 years that I love. He handles my pain. I just found out that he is using the same product put into me! I was so upset, I was letting him have it – my husband shushed me and shut me down (which wasn’t easy) because we need him – he’s the only one who will help me anywhere near our area. I felt betrayed. Very betrayed. I did ask him how he could do this to women, he responded “not all women respond like you do”. To which I got out “I’m not the only one”, he said he knew that. End of discussion. Painful botox shots into the vaginal area to numb the pudendal and obturator nerves. I forgave him the next Saturday because I don’t need the extra anger. He is buying into lies that are being sold to him. Is incontinence such a horrible thing and social stigma that we need to kill ourselves over it??? It is an irritation and sexy doesn’t seem to coincide with it. But it is not worth the risk. I think we will see many new horror stories over the next 10 years. How can we stop an avalanche???

    • Aaron Leigh says:

      So true Betty. You are right on the money. Each of us has the chance to choose who we will be in this life. I am sad to realize that so many choose themselves over others. I hope together we can change this, and we can bring to light the generational harm that has been caused by the mesh. Keep fighting, and keep finding others like you. Good will prevail because we refuse to stay silent. God bless you.

      • Betty says:

        I am a fighter. At least my mom accused me of that until I left home. I don’t see myself that way, just don’t back me into a corner. We need to fight to keep our dignity. I think an advantage Dr.’s have is we’re desperate. We need them so much that we have to tolerate things that we wouldn’t normally take. I refused to leave the ER when the dilaudid they gave me through IV did not take down the clitoral pain. I was labeled a “drug seeker”. I knew it would climb back up once in the car for the ride home. They tried to kick me out and I refused to leave telling them that my pain was so unacceptable and I was going to be up all night with it. I didn’t sign the release. They finally gave me another one. I believe there should be a rule that states “if you put it in, you better #### #### know how to take it out.” Until this is demonstrated, the Dr. should not be allowed to purchase it. I cannot sleep right now due to pain. There are no Dr.’s directly in my area. I am relying on family, friends and even paid drivers to get to these appointments. Another dog food treat has hurt 3500 dogs and it made all the national headlines. I bet the pet food company wishes it could buyout the news media. I do not think the dogs should have been harmed and I believe the company should be held accountable. However, we are talking about human life. Families and communities hurt by women who once were productive. The emotional toll is great on everyone involved. God Bless You All with health and peace. He has said “I will restore the years the locust have eaten.” I know Him to be very powerful and nothing is wasted, not even this horrible maiming mesh. My body is weak but my spirit is good. When I get it back (body) I want to fight and write. I do not wish to sign a disclosure statement of any kind. Jane thank you for putting this out there. Hopefully there are some women who are listening.

        • Bejah Notrettu says:

          Betty, Get a grip girl…you’re sounding like you are “losing it”. Know that it is common knowledge that pain management is handled VERY poorly in this country. There is IMHO a great paranoia in the Federal government and law enforcement in general and in the medical industry about pain medications and in part that is driven by the out of control drug enforcement problems in America which I think are the worst in the “Western world”. Someone please correct me if I am wrong. IT IS NOT YOU. You are brave to fight for what you need. Many people would be afraid to, including me. For years I never asked for an increase in my pain medication. It is, to say the least, unprofessional, for hospital staff to accuse you of being “a drug seeker”. You should report them. Keep fighting but make sure you do it in the most effective way. Know also that that hospital now has a file on you (Which you should get a copy of) and what they say can hurt you if at some point some entity wishes to cause a problem for you they may try to use comments like that against you. Send yourself a registered or certified letter discussing your treatment there and keep it filed unopened in case you need it one day and send a copy now to any human rights entity that should be made aware of how you were treated. Next time go to a different hospital if you can.

          If you do not get many comments from our community, take heart. People are all burdened and often have heavy hearts and just because they do not respond directly does not mean they do not hear you or support you. Do something nice for yourself…buy flowers or maybe the new Ben and Jerry’s ice cream (Butterscotch). Yum! Take care,

          Bejah

  12. Jane Akre says:

    Hi Aaron- How is Barb Vance doing? We need an update as soon as you can… thank you!! ~JA

  13. Betty says:

    OK, I saw the hematologist. Bottom line – too many immunoglobulin G antibodies (I do not know if it is 1, 2, 3 or 4). They are attacking my bones from the inside where blood is made in the marrow. So now they are going to do a bone marrow sample on me. I know this is also very painful. I’ve heard of several different blood disorders on this site, has anyone heard of this?? Thanks in advance for any light that can be shed upon this.

  14. patricia says:

    Barb, I hope you are recovering well. My second explant surgery was more than a year ago and I continue to slowly improve. Sometimes a step forward and 2 steps back, but that beats the agonizing backward slide that mesh had pushed me into. It’s amazing and hopeful that you found a doctor who believed that the mesh was causing all of your problems. We need more like that! and of course the cloning of Dr. Raz. Best of luck to you.

  15. Aaron Leigh says:

    Hi Everyone!

    Barb is doing absolutely wonderfully, much better than we both anticipated. Dr. Raz was full of joy as he told us that the surgery was very difficult but was a 100% success and all of the mesh is gone. It was expected to be a 1.5-2 hour surgery, and it was much longer. She was not able to receive visitors until 7pm that night, after going in around 9:30. But she’s up walking around, walking a little more each day, and she feels great! She is 100% pain free. No narcotics, no cath. The rest I will let her share. It’s a miracle indeed and we are celebrating with movie night tonight!

  16. Jane Akre says:

    **Update on Barb from Aaron Leigh~ The Mesh Warrior, October 28, 2013

    Hi Everyone! ~ Barb is doing absolutely wonderfully, much better than we both anticipated. Dr. Raz was full of joy as he told us that the surgery was very difficult but was a 100% success and all of the mesh is gone. It was expected to be a 1.5-2 hour surgery, and it was much longer. She was not able to receive visitors until 7pm that night, after going in around 9:30. But she’s up walking around, walking a little more each day, and she feels great! She is 100% pain free. No narcotics, no cath. The rest I will let her share. It’s a miracle indeed and we are celebrating with movie night tonight!

  17. Barbara Vance says:

    Thank you everyone for the comments, thoughts, well wishes

    and prayers. I apologize I haven’t posted since my surgery. It’s

    been just over three weeks since I had my mesh removal and I

    feel awesome! I’ve had very little pain and for that I’m so grateful.

    The surgery was a huge success I can hardly believe the mesh

    pain is simple gone. I knew the moment I woke up from surgery!

    It was like a miracle, like getting a new body that wasn’t riddled

    with pain from mesh anymore. I truly feel blessed beyond words!

    I will have to have reconstruction and prolapsed surgery next May

    and I have faith the next surgery will be just as suscessful. My thoughts

    and prayers are with each and everyone of you. I shared my personal

    story in hopes that it would touch someone, maybe even save a couple

    from the path I took. Blessings~

    • Jane Akre says:

      Barbara- that is such great news! Thank you so much for sharing and keeping us updated….When they say “it can’t be the mesh,” Hello!! your experience says it all… Again thank you and speedy healing…ja

    • Adad says:

      Hi Barbara

      I am so glad you are doing wonderful. Are you still feeling ok after few months. I am scheduled to remove mine and any information from you I will deeply appreciate it. Thank you Aded

    • Doreen Day says:

      Hi Barb,

      I have just found this website and I’m so pleased to hear Dr Raz has sorted out your problem. I live in the UK and I’m booked in for surgery with Dr Raz on 16 November for mesh removal. I had a vaginal prolapse repair operation in 2007 and as soon as I woke from the operation I was in agony and I begged the surgeon to remove the mesh but he refused and it wasn’t until 7 months later that he agreed to remove it by which time my body had grown over the mesh and therefore he could only do a partial removal. He then told me there was nothing more he could do for me and he booked me in to see a pain consultant who told me to go home and live on morphine for the rest of my life and I have been in chronic pain ever since. Before my surgery the surgeon said this was a fantastic new operation with very few risks and that he was going to be joined by an expert consultant from Belium who was going to assist him with my operation. He also asked me if I wanted my vagina sewn up or to be normal and I said of course I want to be normal and it wasn’t until sometime after the operation that I found out that the expert from Belgium was not an expert surgeon but a mesh representative and I also found out that the surgeon had sewn me up and I could no longer have sex with my husband. I am so looking forward to November when Dr Raz will operate and hopefully I will be able to get my life back. Very best wishes. Doreen.

      • Jane Akre says:

        Hi Doreen…. was that expert from Belgium piet hinoul who now works for ethicon?

        • Doreen Day says:

          Hi Jane, I’m sorry but I was never told the so called expert’s name but I wish I did know. Here in the UK it is so very difficult to get any information about names of people involved. When I asked for my medical records a while ago I received them through the post and all the relevant pages regarding my operation details were missing but a few months later I rang a lovely lady in the medical records office and she went to considerable effort and managed to find the missing pages together with the mesh product name and batch number which the surgeon who operated on me refused to let me have so I now have this information to give to Dr Raz. i have tried to take the surgeon and the mesh consultant to court but I’ve been told by solicitors that it would be to costly in the UK.

          • Jane Akre says:

            It sounds like your system of justice is even more cumbersome than ours in the US….

          • Doreen Day says:

            Hi Jane, I have heard that in the U.S. People are able to take legal action for mesh operations that have gone wrong whereas here in the UK no one is listening to people who have had these terrible operations. The government don’t want to listen, the National Health Service don’t want to know so we have nowhere to go to get justice.

        • Doreen Day says:

          Hi Jane, I forgot to mention in my previous message to you it was an ethicon mesh used in my operation so it could well have been the person you mentioned but I have no proof.

  18. Rebecca says:

    It’s so glad to hear your surgery was a success. May God Bless you with a complete and speedy recovery!

    Rebecca

  19. Ellen says:

    Hi could someone please tell me how I can get in contact with Dr. Raz..I been suffering for so many years now.. In the beginning the pain was bearable and I could handle it with a little of over the counter medication But now all I want to do now is just lie down but no that is not an option the experience I have experience

    inside er was horrible treated me like I was seeking drugs. After all these years of suffering with being miss diagnosis so many times I finally found a urologist who said my issues is coming from the mesh implant but I asked him is there any way the mesh could be removed he told me no. Yes ladies you cannot described this pain in words the only way I can describe it is evil and wicked. If I was suicidal I would have taken my life by now. Last year I was in so much pain I had suicidal thought they put me on anti depression med I was bedridden for months. Not able to move out of bed. My white cells was so low at times. they had me seeing a hematology for blood disorder. at times I am so wobble and this comes on suddenly and then goes away. My urologist did say that there is a possibility that there was some nerve damage. Because I am not leaking again I believe this is the reason he do not want to remove the mesh, but the pain so unbearable at times I just want to die. I have pain in my legs, back, groin and pelvic area the right side of my stomach is so tender. there is so much tenderness. I have insurance what I do not have is a doctor who is willing to remove the mesh for me. there is so much pain in my pelvic area and in my hip. I remember when the implant was done my hip was so out of I had pain in my left hip area down to my leg I complain to the doctor he inform me that the was coming from the way my legs was position during the surgery and after awhile this will go away that was in 2007 and now 2013. Please can someone please tell me where I can get some help. I can not take this pain

    Ellen

  20. Rebecca says:

    you can google him and find a link which should have his contact info, There is a doctor I found out about in St. Louis, MO if that is closer. His name is Dr. Veronikis. He is at St. Johns Mercy Medical Center in St. Louis. his phone # is 314-251-6753 and his office manager that sets it all up and arranges all the consults is Sherry. Best of luck!

    -Bec

  21. Wow! I feel like I know you, and that’s a biggie for me. Back in 2005, after wee-weeing on myself for several years, I went to my OB-GYN for a check-up and he told me it was best to have this crazy thing done. My hubby and I had been going back and forth with custody issues for two of our grands and knew that real soon they would be permantely placed with us. Therefore, after I had sinus surgery I went for this…bummer.

    It wasn’t long until I started having to take short naps all day long; well, I wouldn’t really call them naps, I would just lie down for 5-10 minutes, just long enough to get whatever spasm it was to stop. No way did I connect this to the Mesh. I also have two herniated discs – so I just attributed it to them. Between this pain and the kiddos, it wasn’t long until I became disinterested in my ministry, had to quit my job, and stopped going to church. Yes, I got on disability.

    I think it was the summer of 2012 I had to have surgery for (pelvic prolapse?). This after having trouble “going” for over a year. Around that time I heard about the mesh lawsuits and went back to my OB-GYN, but he said I was fine and just gave me a prescription – which didn’t help.

    Now, I can “poop” just fine, but I still have “pee-pee” problems and horrible pain from my hip down my leg and just don’t feel like a human anymore.

    So, thanks for your story…one day…maybe…I will be able to have the reverse surgery !

    God bless all of us!

    In His Hope,

    Sharon

  22. Sharon Bearden says:

    I like the name Mesh Angels, on my good days it’s all I can do to cope and make it thru the day. I have for many years enjoyed the company of my Granchildren . More than can be described. With the pain and emotions I now deal with. I would rather now spend my time with pain meds , heating pad and alone time. My Husband of 49 years watches as I deal with life of pain. He tells our Children and tries to explain what He sees. As our Daughter dosen’t understand why I need Doctors for pain, colorectal, Urinary. Family Doctor. Or such strong medications. My Spouse treads lightly around as I cry or just take the medication and lay around. As we’ve always been active in Family , Church and community. Life seems to fall by the way on this Journey as my Doctor calls it. I was told By KU Medical Doctors , my mesh has spider webbed into most organs into my colon. The only surgeory I could hope for would leave me with Ostomy and Urostomy bags and still the painIhave. Can you imagine the problems and emberassment this causes as it is in my Colon? I have to stay home close to bathrooms. I so pray that My God lets the Judges over all of the settlements for all MESH ANGELS be that it should be .

    Hoping for a good day ,

    Sharon

    • Jane Akre says:

      Sharon-
      I’m so hoping you can get some help. Do you have any adequate medical care, do you have your operative reports and insurance? You are not alone, many women are suffering like you are and I hope your family understands what has happened to you and it’s not your fault. Please write even privately and tell me more… thank you and I’m sorry this has happened.~ ja janeakre@meshnewsdesk.com

  23. Heather McCleery says:

    I was wondering if anyone knew how Barb Vance’s surgery went with Dr Raz? I have surgery approaching February 20th with one of Dr Raz’s partners Dr Baxter and I want to know how she feels about their work.

    Please respond

    • Adad says:

      Hi Heather I have first visit appointment with Dr Raz in April. Please keep me posted with your surgery and how you feel after. Can I contact you directly ?

  24. Lori Pelucca says:

    I have been suffering from mesh complications and the pain is only worse, The Doctor’s I have seen do not know much pof this and I have had some mesh removed due to infection and erosion. I feel sick and the pain seems to move all around my body, sitting, standing , even lying down is torture and I cannot take this. I have attorneys and it is always a waiting game, I have had two depositions cancelled and I cannot find a doctor. I have been from one Doctor to the next and there seems to be NO UNDERSTANDING of what is going on. There is no way I can just give up and I need help. Can anyone, someone advise me . I have two mesh one for a hernia and one for POP, this is just horrible. I have faith although at this time it feels hopeless and don’t know who to trust. PLEAASE send help for the Love of God

  25. Lisa Myers says:

    Have you ever heard anyone complain of post-implant tenderness just below the navel that felt like a deep bruise roughly the size of a softball WITH total loss of sensation on the skin in the same area? In other words, a light touch can’t be felt on the surface of the skin but the slightest pressure is very painful.

  26. Lori says:

    I underwent a hysterectomy in late November/early December 2012 and had a mesh sling implanted to help with incontinence. After surgery felt a lot of tugging on the right side to no avail with the gyne or no further help. At the time I had even questioned him about the lawsuit issues and he told me this had nothing to do with those. I have had nearly non-stop UTI’s since 2012 and now I am having other issues that are making me very nervous and scared. I have a pain on the right lower front of my stomach area but worst of all is the itching in my vaginal outter area that feels like I can’t even scratch the itch!! Is nearly driving me nuts now and no Monistat or anything seems to help or get rid of it. I have been to a Urologist and I even have another appointment with a different gyne on April 9th – which seems like months away. Are my systoms common to this mesh sling problem that so many women are having? I have very scared since I went through nearly 3 years of serious bone infection issues and being on antibiotics most of the time doesn’t give me the warm & fuzzies because I am afraid it could “wake the dead” so to speak with my leg. If this is a Bard product, it would be the 2nd one for me to fail! I am highly sensitive to any latex or plastic products so is my body rejecting this thing? If someone can please help, talk to me or something, I would greatly appreciate it………..loosing my mind very quickly now……

    • Lynn says:

      Lori…..Your symptoms sound a lot like mine. Nine months after having a TVT-O sling put in, I felt a pinching/pulling on the right side around the sling area……then, it got worse. I started to feel a tingling & numbness sensation in my rectal area. Now, it is a sharp pain in my rectal area. The Dr. who put the sling in said he didn’t go anywhere near the rectum………Read about the obturator (TVT-O)……then, you will see why we are having rectal pain. I’m on Dr. Raz’s long waiting list for mesh removal in June. Keep me in your thoughts and prayers.

  27. lorna farrell says:

    I just wanted to say I am so GRATEFUL to find brave ladies willing to share their stories. I am in Glasgow, Scotland- having suffered in pain for 6 years, the last 2 have been awful, and despite my consultant and Dr both insisting it WASN’T the TVT/Mesh, tests last month have found the mesh is embedded in my blAdder and im waiting to see another consultant on Tuesday. I have pain all over my body, weird shooting pains in my buttocks/thighs, excruciating ripping sensation in my vagina, lower back etc …ANYWAY , I also have a MIGHTY GOD and discovering other women are able to understand my story- depression/pain/listlessness are NOT my life- I am a writer/storyteller- and whatever happens- I WILL NOT BE SILENT ABOUT THIS ANY LONGER- I felt such shame and embarrassment, but not any more!! I feel I am just at the beginning of a journey of discovery , I wasn’t aware of ANY of this – but when I get some strength, I intend writing about this and would love to connect with women all over the world – even just to say “Hi” – and Pray.

    God Bless you all ,

    and greeting from Bonnie Scotland,

    Love,

    Lorna

  28. Tammy Adams says:

    Thankful I’m not crazy ,and this is the most horrible ordeal I have ever been through yet I see I’m not alone as I have been made to feel ,had mesh put in for leakage and bladder fell,10 months later 3 procedures later had it taken out but am beginning to wonder is it all out ,a year ago I developed lymphedema ,it’s horrible I make myself walk but am truly not able to but I’m fighting through the pain because I don’t want my grandkids to see me in a wheel chair ,I want to play n spend time doing things with them yet I’m unable to ,the swelling is so bad I can no longer wear shoes ,had to buy new clothing ,I have done everything the doctors have told me to no avail nothing is helping and I’m just getting worse ,I fully believe it’s the mesh that’s caused this I go to doctors regular basis white cells elevated oh infection somewhere take antibiotics see you in a month I no longer take the meds as they did nothing ,wear compression hose ,nothing,lymphedema pump 2 hours a day nothing. ,the only time my legs and feet have went down is during a procedure where I was put to sleep try making sense of that one ,,,I so hope I can find some one to help me soon so frustrating and depressing not being able to care for my self meet my husbands needs do my house work ect ect

  29. Tammy Adams says:

    Has anyone else experienced lymphedema from your mesh implant or removal ,,I have researched and found several others stating its what caused their lymphedema ,,mine has been on going now for a year ,before that it would come n go ,,add this pain on top of the mesh pain and fibro I’m having a really hard time

  30. We need to change our thinking about suicidal thoughts for everybody.

  31. Doreen Day says:

    Hi, I have travelled from the UK to have a mesh removal operation at UCLA on 16 November (tomorrow) with Dr Raz. I had a TVT in August 2007 and as soon as I woke from the operation my body started to reject the mesh and I was in chronic pain but unfortunately the surgeon refused to take out the mesh until April 2008 by which time my body had grown over the mesh and he could only remove some of it and when I told him the chronic pain I had and continue to have on a daily basis was caused by the operation he said it was nothing to do with the operation and I asked him if I didn’t have the pain before the operation why do I have it now and he said he didn’t require to see me anymore and he sent me to a pain consultant who told me to go home and live on morphine for the rest of my life. Before the operation in 2007, I was due to go in for a normal vaginal repair in September but the surgeon phoned me in June to say there was a wonderful vaginal repair operation with mesh and he had a specialist surgeon coming over from Belgium to assist him and he could fit me in for the op in August. I trusted him and rather stupidelly agree to the op. I found out after the operation that the specialist from Belgium was not a specialist surgeon but a mesh rep. I also found out that the surgeon had sewn up my vagina so therefore I have been unable to a sex since 2007. I am praying that tomorrow’s operation with Dr Raz will be successful so that I can get my life back.

    • Jane Akre says:

      Wow what a story. I’m so sorry. Belgium was the site of much of Ethicon’s research and training….. I’m wondering if your preceptor (traininer) went to work for Ethicon after doing your surgery? Best of luck to you tomorrow…. you are in great hands!

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