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Still Standing on Medical Management of Mesh Complications

still standing graphicMND, Feb 22, 2016~ Many of you know her as Still Standing.  Still writes frequently in the comment section of www.meshnewsdesk.com.  She prefers to remain anonymous because she is represented and is involved in mesh litigation.

Still Standing was implanted with pelvic mesh years ago and has undergone eight major surgeries, five of them explant surgeries. She speaks highly of her present doctor, Dr. Charles Butrick, (here) a urogynecologist from Overland Park, Kansas.  She says the ongoing care she’s received from him, both the explant and treating mesh-related pain, has given her good outcomes that continue to improve.

dr charles butrick

Professionally, Still Standing worked in hospice care for years and decided, during the worst days of her mesh pain, to go back to school and get a master’s degree in psychology with a focus on pain management.

I had to do something that gives me a purpose rather than focusing on this. My first class was on my 60th birthday,” she tells Mesh News Desk.    

After her studies, she was certified in Neurobehavioral Pain Management and is a certified mindfulness instructor. Neobehavior Pain Management is based on the powerful mind/body connection.

Early on she told her professors she wanted to work with women suffering from chronic pelvic pain.  There will not be enough of a market for that, they warned, but during a recent workshop on chronic pelvic pain, there was overflow crowd. 

 “We were full. We couldn’t have gotten another person in there.  Next time it will have to be two days. Women stayed and connected.  They become lifelines for each other. Relationships blossomed.”

Some are so desperate, they discount what they can do for themselves. I couldn’t think for three years, I lost it all. I was in so much pain. It’s so deep and so personal.  The first thing I thought about in the morning was my vagina and the last thing and all day. I couldn’t go to parties, to lunch, you tend to self-isolate. Friends look at you like you are crazy, not because they don’t believe you but because they can’t imagine it.”

When the money comes you are not any better off, so you have to start now!  Do things for yourself now and if they help great, if not you haven’t lost anything.”

Besides mindfulness, Still Standing talks about lifestyle and diet changes to less acidic food to help conquer pelvic pain in an upcoming chapter.  After visiting with an integrative medicine doctor as well as Dr. Butrick, she would like to share what she’s learned about the medical management of pelvic pain.

graphic im still standingCHRONIC PAIN AND MEDICAL MANAGEMENT

Chronic urinary tract infections (UTIs) are a constant complaint of women implanted with polypropylene mesh in the pelvic region.  Some suggestions for the medication management  of UTIs might include:

Antibiotics – These must be by prescription.  Still Standing says she began having UTIs after her first mesh revision. They would clear up with antibiotics but then return. “Finally I went on long-term antibiotics for seven months, but when you do that you have to add all other things, such as probiotics to replenish the good bacteria. Really, you have to find out what is irritating your bladder. Avoiding acidic foods will help.

“I would do it half assed after all what’s more comforting than high fat foods, and coke and chocolate, that’s what gives you comfort.  I found it difficult to do that. When Dr. Butrick explained to me how the bladder wall, irritated with acidic foods, it will cause a lot of UTI’s. It’s just like a scrape or irritation to the bladder lining. You have to give it a break to get it to heal.” 

“So finally last year I said, okay. I really started eating less acidic food – no citrus at all, no soy, anything acidic or carbonated. You can buy a less acidic coffee at World Market, because coffee is normally very acidic.  Antibiotics are not going to do anything if you keep eating foods that will inflame your bladder. It’s not forever, it’s just for a little bit.  I still suffer if I eat the wrong things.  That’s why this doctor integrative medicine doctors has helped me a lot.” ~ Still Standing

 

Probiotic If you are taking an antibiotic a probiotic is needed to counter the effect of killing bacteria in your guy.  FlorAstor is one, Plexus is another.azo

Azo Tablets and Azo BlueThis UTI pain reliever is a homeopathic over-the-counter medicine for bladder health. The Blue version is a bit stronger. It calms the symptoms of a UTI, according to Still Standing.   Source them here.

Hyophen This prescription medication is used to relieve the urge to urinate and cramps of the urinary track system caused by an infection or surgery. Downside- cost is about $400 a prescription which may be covered by your insurance or may be too costly for many.  Another potential downside – if you are on an SSRI (serotonin syndrome reuptake inhibitor) do not take Hyophen because it can enhance the effect of the SSRI and you’re your depression symptoms worse by flooding the brain with too much serotonin. Read more at Web MD (here).

Estrogen cream – This is a prescription medication. Dr. Butrick uses it to keep the urethra plumper. If it is dry, bacteria has a much easier way to travel from the rectal to vaginal area.   Still Standing says she’s always been on estrogen cream because the vaginal wall thins out and has much more opportunity to erode. Estrace or Premarin are common brands. Do not use soy products, however yam-based products may work.

Cranberry tablets – If you have a UTI cranberry juice irritates the bladder so cranberry tablets are best. Azo offers one and they are found over-the-counter in stores such as Target.natural calm

Natural Calm Plus Calcium– This is a balanced Magnesium-Calcium drink. Magnesium is necessary for your muscles to relax and women with pelvic pain have tight muscles from the pain. It helps muscles relax and reduces constipation as well as helps you sleep.  Still Standing says many people are deficient in Magnesium. “It changed a lot of things for me and I don’t ever get constipated.”    Vitacost has it here.

Prelief – Taken to reduce the acid in foods. Available in most drug stores.

http://www.prelief.com/

Mesh News Desk plans on forming affiliate relationships with suppliers of helpful medications for the mesh injured. Please sign up for the newsletter to stay up to date on this important new chapter and to receive coupons. Thank you!

Mesh Newsletter Signup sheet

http://eepurl.com/i2ugz

 

26 Comments

  1. anonymous says:

    Still standing thank you for the information I’m just wondering how in the world are you able to sit in a classroom I can’t sit for more than 15 minutes in one spot because severe nerve pain I mean kudos for you for doing it but I just have to wonder do you have pudendal neuralgia? Or is your obturator nerve damage. Do you still have mesh inside of you. Do you have a neurological bladder these are all things that some of the more severely injured people have them because of their bladder situation they cant void completely and that can cause infections thank you for the information but some of us are not the normal everyday mesh victims for us life will continue to be a nightmare and for me what gets me through is my faith if I bought all the stuff I lose my house it might seem pennies to you but when I have to count every last dollar every day. I can’t afford anything more not even $5- $10-$15 dollares. I hope your article helps some people but for me now I have more questions about you than I have answers I have several friends who are severely hurt and there’s no way they could spend even a half hour in a classroom good for you for doing something that will help you in your life but for many of us there’s very little hope. One of them is Addison she is been through more than any person could ever imagine I’ve seen some medical records I seen her doctors reports there’s nothing that can help her except to get all the mesh out and that is a complete and utter impossibility without killing her same with another friend that. I happen to know these people are hundreds of thousands of dollars in debt and have a family to support and she has tried everything she can she has experts at mail and the list goes on and nobody can help her get rid of these all because the mesh is still inside of her. I just wanted to say please be careful on giving advice because some of these women might try this not realizing that it will not help you especially if you have a foreign substance in your bladder yet. please be courteous of everyone else too who doesn’t have these possibilities of using these things and getting better. Thank you again for your article for some people but I hope all of us severely hurt people are not pushed under the rug and forgotten about many of us have tried some of these things even me it doesn’t help please don’t forget us I’m afraid that will happen that at the end of this the severely hurt will just be locked away in a closet and they don’t want to be hurt about I still say this is the saddest time in women’s health ever. And not to disregard you or anything but I’ve heard doctors before tell me alot of things that I’ve tried but it’s because they specialize in a certain field that they push their ideas on others. I’m glad you’re getting better I’m glad you got a good doctor. But I just wander is it because of your degree that you say all this or Y. Again do you have severe nerve pain. You don’t talk about the stress on the body that can cause many infections also and that is a very real issue with many of us. Thank you again but I think it should have been just labeled about bladder infections. In just one side note unfortunately many of us spend too much time on antibiotics as it is and the doctors have even warned me that they’re afraid to give me too many antibiotics because then it weakens my immune system to fight other things. The problem with mesh injuries is they can be so multidimensional it’s not even funny. It seems like take this med to cure this and then this happens or the other thing happens so please just remember there are many people out there who appreciate your advice but it in no way should indicate the pelvic mesh can be cured or handle by taking these things. To those women I say keep praying and do not lose your faith this life might be hard but if you trust him this will be like a blink and then we will find happiness forever. To my severely hurt my friends I say hang in there look for the sunshine everyday keep praying and I truly believed that the medical community sooner or later will get off their back side and help us find better tools to manage our pain

    • Mary Pat says:

      StillStanding, can you respond to the inquiry about sitting? I cannot sit for even a few seconds. How did you take classes? Wow, that’s all I can say. When I read about mesh injured people sitting or laying in bed all day, I can’t help but wonder, how do they do that?

    • kitty says:

      Addison informed us on a previous blog

      That Dr Elliot got all the mesh out.

      I am counting on Dr Elliot. Perhaps this is a different Addison?

    • Still Standing says:

      Anonymous….i just dont know how to respond to your post about this article. You seem upset at me for saying that I have been able to find some relief from my pain. Im sorry it impacted you that way. I just wanted to provide some positive encouragement. I understand your frustration considering that my life has been greatly impacted as well; my obturator was actually cut through in a surgery and was not sewn back together, and yes, I have neurogenic bladder issues. And, yes, I still have some mesh, but I will let my doc know that you dont consider me severely injured. He will get a chuckle out of that one.

      You ask how I could sit through my classes. I couldnt sit all the time, but I would stand. I stood up to write papers. I kept my eyes on my goal and found great personal growth and positive affirmations to go through this with so much pain. I felt called to do this. You talk about the life without pain in the afterlife and I believe that, but I also believe that what God has planned for me is good in this life and I took a big step of faith into that grace. I sat so I could stand in faith..I was wrapped in the prayers of family, friends, fellow students and professors and strangers. I went through three major mesh extraction surgeries while In school and missed two semesters of classwork….no one thought I could finish, but I did. I found it to be a very healing experience for me and I learned that I had more strength than I thought possible. People were perfectly placed where and when I needed them most. So, I guess this is my personal testimony of faith. i just leaned into it.

      Your post reminded me of the story of the man who was drowning in the ocean. He called for God to save him and a man in a boat came by and offered to pluck him out of the water. The man said, no, God will save me. Then a man with a life jacket came by and offered it. The man said, no, God will save me. Then a man with a rope came by and offered to pull him out. Once again, the man said no, God will save me. He drowned and when he met God in heaven he asked God why he didnt save him when he called out three times. Them God said…I sent you a man in a boat, I sent you a man with a life jacket and I sent you a man with a rope………I plan to grab hold of everything I can to overcome, though certainly not cure, the complications that we all experience.

      We are MORE than our pain and we are worthy of a fulfulled life today. I believe that with all my heart. Yes, we have and will continue to suffer but we are certainly not the only ones who do. I feel that our experience of pain opens our hearts to others who suffer and allows us to have abundant empathy for others in pain. Yes, our lives are changed, but they are not over. I want to spread a message of hope. That is just who I am and how I think and I dont apologize for it.

  2. TO STILL STANDING

    is Calm Product used instead of any calcium supplement or an addition to one??

    Also is magnisium safe for everyone to take??

    Great article.

    Dottie

    • Still Standing says:

      I dont take other calcium products, but my bone density is good. It actually got bad during the worst five years post mesh, but once I started being more concientious about my nutrition, my last bone density has actually gotten better. Considering my age, that was good news. My doctors think that all adults are magnesium deficient, but you might run it by your doc to make sure. A good side effect from magnesium is that it helps with constipation. That was a big problem after mesh, but, the natural calm has taken care of it. Yea….much better than drinking Milk of Magnesia by the bottles full.

  3. stopmeshimplants says:

    Thank you Still Standing for sharing this information. Very helpful. And thank you for helping others with chronic pain management. You are so right that there is such a need for your services and the numbers of people will continue to grow who need to understand the mind body connection better. I appreciate your entries on Jane’s site and always learn something I did not know. Take good care.

  4. MAMOHIO(sad&disappointed) says:

    @StillStanding. THANK YOU SO MUCH FOR DOING THIS ARTICLE! WOMEN OUT THERE PLEASE READ IT AND TAKE HER ADVICE. @stillstanding I really do appreciate what you have done for all the members that participate and talk about the harmful effects of transvaginal mesh. I have been doing almost everything in your article and it has actually helped me. So ladies she knows what she is talking about. I have been critical of some of your comments and that is why I ask you to put something out there to help us all deal with side effects from having a TVT implant or any type of removals that have taken place. This is what we need to start talking about, how to help each other? I would like to invite still standing to send any type of physical therapy pictures or videos to help with the constant pain in that area but most of all pain all over. I have been doing hand and feet exercises before I even get out of bed to help get my body woke up. Seems my extremities are stiffening and always in pain. They call it fibromyalgia, I say its toxins being released from the mesh but hard to confirm by the drs. I also have a lot of back pain that I do exercises each morning once I get up. This strengthens the back and stomach areas along with kegels all day whenever I think about it, wherever I am. The only thing that I would not suggest to do ladies is the pelvic therapy with a mesh implant. It is the most painful and I think caused more problems as I attempted 3 sessions. I found out later that this type of therapy is for after a hysterectomy or mesh removal. Please make sure you are totally healed before attempting internal pelvic exercises because you are fitted with an internal device that is used during your therapy and is hooked into a machine while the therapy is being done. @STILLSTANDING I WANT TO THANK YOU ON BEHALF OF ALL YOUR MESH SISTERS FOR GETING THIS TYPE OF CONVERSATION STARTED AND NOT DISCUSSING LEGAL ISSUES AND ANINOMOSITY AMONGST THE GROUP. WE SHALL SHOW OUR STRENGTH ON THE STEPS OF THE COURTHOUSE IN CHARLESTON, WV ON APRIL 11, 2016 @ 8:00am for our 37 mesh sisters who need our support and to show J&J the faces of MESH and most of all The Face of our Strength & our Demand for Justice!

    • Still Standing says:

      Many things can cause fibromyalgia. It is a common overlapping pain condition with other types of peovic floor dysfunction and since pain is the result of inflammation, no doubt the mesh contributes to the fibromyalgia. MAMOHIO… Im sorry if my comments caused you to be upset or angry. Im a pretty straightforward communicator and that may come across to some as being too blunt. Ive done freelance articles on scientific research on pain, so it just how I write. Jane and I have talked about a video pain management series, but you must remember that I am also in litigation and my attorney does not want that to take place at this time.

      Im glad some things are helping. I call on many pain tools over the course of my day so different things help on different days. My personal experience with physical therapy was good. I have a very skilled therapist and she never hooked me to a machine, so Im not familiar with that. I had PT with wall to wall mesh, so, again, different things help different women. It did hurt like hell the first several months, and she told me it would flare up pain, but to stick it out. Glad I did. One comment that you made sent off alarm bells,however, kegal exercises can cause increased pain in women with mesh. My doctor taught me to do reverse kegels and I will try to describe that in the next article. Kind of hard to put the process in words, but I will try.

      I agree that there is a need for all of us to share “what works” for us. We all have a great deal to teach AND to learn from each other. In addition, we are the best hope to teach the medical community how to care for us. By being open to a wide range of interventions, we can teach our doctors many things. We are their lens into our post mesh world. I feel a great responsibility to do this. Wouldnt it be great if we share our tips and then we take these comments to our physicians? Would be a big realityncheck for them.

    • Still Standing says:

      Hey there. Imfound this website below that teaches how to do reverse kegels. Much better than what I was going to try to write. this article discusses the “why” part of doing them. Really, women have been so poorly educated sbout our bodies. The medical community has let us down over that as well. Heres the link

      http://femfusionfitness.com/the-reverse-kegel-for-relaxation/

      • Jane Akre says:

        Please check out Whole Woman. The link is in the little box on page one of MND. Christine Kent, RN has devoted her professional life to teaching on pelvic health.

  5. DEe Freeman says:

    THANK YOU THANK YOU @stillstanding very resourceful information. I am twenty-five (25) days post-op of Hernia Mesh Removal Surgery. I Feel Good, No More Mesh Poisoning My Temple. Thanks to Dr. David Grischkan at the Hernia Center of Ohio. Dr. Grischkan Removed All of the Mesh and Repaired my Inguinal Hernia without another Mesh. I received good care from him and look forward to improving. Thanks to your information I’ll resume using my Estriol vaginal cream, Calm, and CranActin Capsules. Prior to my explant surgery I learned how to make and started drinking homemade kefir smoothies which seems to have quicker and noticeable benefits than my pharmaceutical grade probiotics and prebiotics. Seven (7) days post-op I start taking Serretia Serrapeptase ( wish I’d known about it for past surgeries),Chlorophyll, and Flax Seed Oil. I look forward to resume taking SAMe opposed to taking Welbutin permanently. Jane Akre thank you for having a site that speaks volume for the many who wouldn’t other wise be heard.

    • Still Standing says:

      Ive never heard of serretia serrapeptase before. Thanks for sharing . I looked it up and found that it acts as an anti-inflammatory. Great to have that knowledge. I will see my integrative health MD next week and will ask him what he thinks about it. All pain is caused by inflammation, so anything we can do to address inflammation is a positive step….more options, more tools. I don’t need a toolbox to manage pain. I need a tool shed!

  6. DisgustedCl says:

    I can not sit for more than 15-30mins without extreme pain. Nothing stops it. But I can lay down flat. So staying in bed, for me causes my pain to be about 0-1. Several neurologists have told me that I have pudendal neuralgia and obturator neuralgia. Classic pudendal neuralgia has no pain while sleeping and just waking up. Hyomax is another “old” drug that helps with bladder spasms – and intestinal too. It is prescription, but it’s cheap. I have found a lot of doctors have never heard of it. Still Standing, are you still on antibiotics? I would like to talk to you further about this. I think you’re right that we should be helping each other. It is greatly needed and teaching doctors also. Several have said they’re writing the books on us. You have given me courage to go online and get a degree. I’ve been contemplating it, but I’m too old – lol 53.Thank you for caring about women’s health and doing something about it.

  7. Tami Holmes says:

    I’m just beginning on this painful journey. My ob/gyn is telling me everything is ok. ( he’s the one that put the sling in). I’m finding little to no support from any local drs. Like a lot of these women, I’m working full-time trying to support a family, and paying for all these doctors visits, medication .Specialist, etc…is killing me financially. Everyone is trying to make me think I’m crazy, it’s all in my head, etc….IT’S NOT!! My sex life is ruined, I’m having constant pain throughout my pelvis and back. Some days, it feels as if my vagina is going to fall out. Today , it’s a poking in my right pelvic side. Like the device wants to pop out!! I don’t know what to do, or where to go…

    • Still Standing says:

      Well, in my opinion, complications from mesh should be addressed by a competent urogynecologist, not just an obgyn. There is a tremendous difference in those two specialties and there are vast differences among the urogynecologists as well. Would your implant dr. give you a referral to one? If not, see if your primary care doctor will do that. I had to travel four painfilled hours round trip to my Urgyn, but it was worth it in the end. Please know that it is NOT just in your head. All pain is basically in your head because that is where pain signals are sent and then your brain responds to those signals, which are potential threats to survival. There is a strong mind body component, and research is showing us that acute pain that is not properly treated can result in chronic pain syndromes. Dont settle for that kind of non-diagnosis from your implant physician. Post mesh pain is REAL and by now most doctors should be aware that is happens and at least be able to respond in some kind of informed way. You deserve better. Dont listen to “everyone”. They are not in your body. They d not understand your pain. I dont know how you are able to work full time. Im so sorry. I hope you can carve out some time for self care. Giving yourself permission to do that is the hardest part. I was angry and turned that anger toward myself. I thought it was because of a defect in me and I thought I could outrun it or pretend I was ok on the outside, or wake up one morning to find it was a terrible dream. All of that seemed preferable to coming to terms with it in the present and then forgiving myself for making the decision to have the surgery, although I trusted my implant physician, as most of us did. We wouldnt let someone we did not trust perform surgery to begin with. There are just so many emotional reconciliations we must make as we focus on the very real physical hell. Be kind to yourself as you work through it all. If you like to read, get the book “The Gifts of Imperfection” by Dr. Brene Brown. It is a very self affirming read, and I needed all of that I could get. It helped me to be ok with feeling vulnerable. I was a take charge, stiff upper lip, perfectionist. Vulnerable was not a term I would have assocated with myself. But, the mesh laid open that place in a stripped down way. It hurt to go there. Reach out for help when you can, which is of course much easier said than done. I declared that impossible early on, but now realize that it literally saved my life. Do what you can and celebrate each small step without beating yourself up for the missteps.

  8. anonymous says:

    Still Standing, What I wanted to understand is how you could sit in a class room for classes with severe pain. I wanted to understand what you have been through and what your issues were. I can not sit for more than 10-15 minutes and with the meds I am on I could not begin to have a clear enough mind to do college classes. All I was saying is that be careful at handing out advice to those who you do not know. I reread my post and I did say kudos to you for all you have accomplished. I did say thank you for the information you shared. My concern is that many who read these post will think that we can be cured by the things you suggest. My nerves have been permanently damaged. I have gone to more doctors than I care to even think about fighting to only find out the inevitable truth that this is how I will be the rest of my life. I have had a top US surgeon tell me he could not repair the damaged and I would have pain the rest of my life. I have talked to neurologist who tell me I have several nerves damaged and that any further surgeries would only make it worse. The only thing that was left was medication management. I wanted to make sure that the 2-5% of us who are severely hurt would not be forgotten. I didnt want those of us who could not afford surgeries we need, meds that we need or would like to try and can not afford or the medical care that we need, be forgotten. I dont want to be lumped in a category as the medical companies are trying to do. I know we are only a small percentage but we still matter.

    You told me a fictional story, let me tell you a TRUE one. I know a man who had severe issues with his intestines and they were not working right. He was told to go to the doctor by some. But there was someone who was giving him advice (not a doctor) and told him to stop eating so much veggies and fruit. The problem continued. Next he was told he could have a gluten allergy and should change his whole diet. Then he was told to eat more yogurt. He was told to take different supplements. This went on for many many months and he took the advice and tried many things. Soon the man was afraid to leave his house because of his issue. He stopped going to family get togethers and hid out in his home. Then one day his brother died and he came to the funeral. People were shocked to the point of mouths dropping. He had lost 60lbs and looked like walking death! The next day he was taken to the hospital because of great concern for his health. He was diagnosed with advance colon cancer, cancer on his liver and kidney. The doctor told him that his chances of survival were slim. He went out that day and paid for his funeral. Through lots of prayers and blessings from above he is still alive today. He wears a bag now and watches every day for the cancer that may come back. It cost him thousands and thousands of dollars and the hospital even wrote a lot off. He suffered through a few years of radiation and chemo. My question is this, what would have happened if he had only consulted a doctor first.
    That is my only concern. You may have a degree in something but you do not know everyone who has been hurt by mesh. I was only trying to caution you and others to be careful not to give out medical advice with out knowing the person and checking with your doctor first. Thank you for sharing what helped you.

    Even Dr. Vigna said that he would rather treat a paralyzed person than with someone with Pudendal Neuralgia. I do not wallow in what has happened to me. I am simply more careful now because of what has happened to me and the lies told to me. Who would ever thought talcum powder could kill you??? You said I sound mad. Yes I am. In my humanness I get mad. The medical companies did not do trials as they should. They were warned not to put mesh in people. And now they want to give us settlements as one man said “are a slap in the face”. I am mad because my life has changed so very very much. I find it hard to even drive to my doctors office let alone do much else. I have tried everything every doctor has asked me to try. Their words not mine. I have tired to do other things instead of pain meds only to lay in bed crying from the pain. I never ever took pain meds before this. I was also warned by one of the top surgeons in the US that physical therapy can do more damage to a Pudendal Neuralgia victim if it not done right and to find someone who was knowledgeable with it. Some cities do not have resources that we need. I am still fighting because of my faith. I believe all things happen for a reason and not all of it is from God above but from Satan himself! He will not defeat me. Yes we deserve a full life. Yes we have to learn to deal with our pain. People tell me that I handle it very well it seems. That is because of the attitude I choose to have around others. I refuse to allow the pain and stress to boil over to other people. But anger at times is a very human emotion and we are entitled to feel that way at times. I try to do every thing I can to heal and keep my mind busy. I support several mesh friends and I am always here to listen to their pain. We may not have answers but we can be a sounding board for each other when many do not understand or care.
    All I was saying is dont lump us all into one category and that is what your post sounded like. Excuse me if I miss understood it. I am just tired of people assuming things about us that is not true. We are faking it, once the settlement comes we will be healed, we only want to get money, we do not want to work, we dont look disabled, we dont want to go to rallies or come to court houses. We simply cant!
    I am very glad you have hope that you will heal, that you will be able to help others. You are not the first one out here to try to help others. Before you there was Carly and Addison and a few others. They were pretty much dismissed and questioned to the point they no longer come to this site. There have been others also that have left because of the way their post were responded to. My point is this, we do not need to lash out at each other. I only had questions as to how much damage you had done. I wanted to know if you knew what nerve pain was like. I have heard of so many cures that are a sure thing only to find out they were not. I wonder if the top doctors at Mayo can not help Addison or others why do you think your ideas will? I am sure the doctors at Mayo and in California would get a chuckle out of what you are suggesting for some also. Please dont be insulted. But if you know something that I do not then great for you. But some of us will never be able to have the lives back and all I was asking is that you understand that and be careful on giving medical advice or lumping us all in to one category. I just caution everyone please talk to your doctors about anything you try.
    I will leave you with that. I am glad that you have accomplished so much. Please understand everyone is different and we do not all have the resources you do evidently. I hope you do have a full life. It is just sad that those who are classified catastrophically hurt will be dismissed or attacked because someone does not have the magic pills to make us better again or because we have lots of questions. I prefer to listen to my doctor. I tried a gold standard suggestion once and once was enough. I wish you the very best in your life Still Standing and to all of you. You will not hear from me again because I am just tired of trying to defend my self and Addison and the others who have had questions and concerns only to be made to feel like we said something wrong. I pray that some day the doctors will come up with something that could help us. Until then we will continue to fight for our lives and hope that others some day will understand what exactly has happened to us. The doctors know but they still do not understand what happened with something that was suppose to be the gold standard in health care. I will continue to pray and support all my mesh sisters and brothers also who’s lives were ripped apart all in the name of money.

  9. kitty says:

    ANONYMOUS I am the same as u. One size doesn’t fit all. Yes we haven’t heard from Addison since she ra ed how wonderful Drs were at Mayo. Some damage cannot be fixed–true. Let it go. It’s not our story. We don’t have UTIs
    But SS may be able to help some–that’s OK,,,

  10. anonymous says:

    I will respond to you Kirry because you are so nice. That is the problem I have severe UTI’s all the time. But it’s because I can not empty my bladder since the mesh surgery. The remaining urine causes infections. I’ve tried to cranberry juice and everything you can think of I’m sure the next step will be having to cath myself daily. And then there’s the pudendal neuralgia pain that I have everyday every hour. It’s just an endless nightmare

    • Anonymous says:

      Ask your doctor about Hyprex, you can not become resistant to this, it is more often used for people with kidney disease or post transplant.

  11. Anonymous says:

    I too have multiple explanat surgeries, PN and levator ani syndrome, I have nerve pain in my leg and feet from surgeries and mesh movement, my bladder is neurogenic and I have residual urine post void, prior to the implantation of a neural sacral stimulator I was 100% catheter dependant, now 80% or so, persistent use of antibiotics for UTI’s has caused my liver enzymes to be elevated, I’m currently taking nine perscription medications multiple times daily, plus supplements to acidifying my urine as the anti-infective agent (hyprex instead of macrobid to spare further liver affect) won’t work in an alkaline environment. Constant pain has devastated my intimate relationship and destroyed my career aspirations. To put this into context, prior to mesh, I took zero medications and I had zero chronic diagnosis, I was climbing a corporate ladder with many opportunities ahead, that is not where I will ever be again.

  12. Anonymous says:

    Thank you, Still Standing. Your profession is meaningful and rewarding, and it seems you are experiencing some much-needed healing while positively impacting the lives of others.

    Although not frequent contributors to Mesh Newsdesk, family members and I have read many articles; we’ve posted under a few. When our children are in school, I usually try to sleep, but when unable, I read a book or go online via my phone. I’ve had some questions for Jane and Hal but really wanted to help others upon recognizing the struggles with certain medical conditions, disability applications and finding qualified physicians. If okay, Still Standing, I’d like to share a bit of my experience with infections and ask your opinion.

    I have chronic urinary retention or neurogenic bladder with daily catheterizations after dysfunctions, exposure, erosion and removal surgeries. I’ve had somewhere between 35-50 bladder/kidney infections in recent years and have been hospitalized many times. The typical urgency, frequency and burning with urination occur with infections, but I get quite ill and very tired. Both retention and incontinence often worsen, and increased body aches and abdominal pain, side and/or back pain, worsening migraines and nausea, temperature fluctuations and burning, sore eyes also occur. With some infections, I experience periods of significant uneasiness or anxiety; this symptom typically subsides after two or three days on antibiotics.

    In knowing some urinary tract infections clear on their own, I tried to avoid medical care on three or four occasions. They didn’t clear, and although my doctors understand the few home-remedy attempts, they strongly advise being seen within 48 hours of symptom onset. Antibiotics are necessary, but I’m sick of the associated effects. The medications are switched when vomiting becomes an issue, but nausea, stomach aches, exhaustion and other infections (chronic yeast and BV) remain. Treatment is usually easier than the first few days of infection though. Oral and vaginal probiotics, catheter changes, prophylactic antibiotics, cranberry tablets, increasing and decreasing fluids, dietary changes such as trying the IC diet and drinking only water, AZO products, Pyridium, Hyophen, soap changes, biofeedback, magnesium, vitamin D and all else prescribed or recommended haven’t yet done what we need. Some of these, however, have helped with digestion, rashes and Opioid-Induced Constipation.

    Still Standing, have you heard of such retention resolving over time when resulting from nerve and neuromuscular complications, or does it seem unlikely after this many years? We’re told catheterizing contributes to my chronic infections but don’t completely understand as I’m hygienic. Incontinence has also returned, and I’m frustrated by the combination. Portions of the implants remain and can’t be safely removed. Naturally, we wonder if any of the anchors and whatever else is left cause or worsen some things. Further erosion and exposures aren’t likely but possible, so hopefully these are in the past. Pain is a struggle at rest, but medications help. With extended walking, sitting upright and infections, the pain is often severe. We are thankful for my doctors because they’re caring and do what they can. Also, a few difficult complications resolved with surgeries. Pudendal neuralgia and other nerves cause some of the continued difficulties. Much change isn’t likely, but this is what we’re focusing on right now. My husband and children are supportive, but it’s really hard seeing them affected especially as they are so young. Thank you for reading. May God bless everyone, especially those who are struggling and all who are kind, honest and helpful.

  13. addison says:

    Thank you, Still Standing. Your profession is meaningful and rewarding, and it seems you are experiencing some much-needed healing while positively impacting the lives of others.

    Although not frequent contributors to Mesh Newsdesk, family members and I have read many articles; we’ve posted under a few. When our children are in school, I usually try to sleep, but when unable, I read a book or go online via my phone. I’ve had some questions for Jane and Hal but really wanted to help others upon recognizing the struggles with certain medical conditions, disability applications and finding qualified physicians. If okay, Still Standing, I’d like to share a bit of my experience with infections and ask your opinion.

    I have chronic urinary retention or neurogenic bladder with daily catheterizations after dysfunctions, exposure, erosion and removal surgeries. I’ve had somewhere between 35-50 bladder/kidney infections in recent years and have been hospitalized many times. The typical urgency, frequency and burning with urination occur with infections, but I get quite ill and very tired. Both retention and incontinence often worsen, and increased body aches and abdominal pain, side and/or back pain, worsening migraines and nausea, temperature fluctuations and burning, sore eyes also occur. With some infections, I experience periods of significant uneasiness or anxiety; this symptom typically subsides after two or three days on antibiotics.

    In knowing some urinary tract infections clear on their own, I tried to avoid medical care on three or four occasions. They didn’t clear, and although my doctors understand the few home-remedy attempts, they strongly advise being seen within 48 hours of symptom onset. Antibiotics are necessary, but I’m sick of the associated effects. The medications are switched when vomiting becomes an issue, but nausea, stomach aches, exhaustion and other infections (chronic yeast and BV) remain. Treatment is usually easier than the first few days of infection though. Oral and vaginal probiotics, catheter changes, prophylactic antibiotics, cranberry tablets, increasing and decreasing fluids, dietary changes such as trying the IC diet and drinking only water, AZO products, Pyridium, Hyophen, soap changes, biofeedback, magnesium, vitamin D and all else prescribed or recommended haven’t yet done what we need. Some of these, however, have helped with digestion, rashes and Opioid-Induced Constipation.

    Still Standing, have you heard of such retention resolving over time when resulting from nerve and neuromuscular complications, or does it seem unlikely after this many years? We’re told catheterizing contributes to my chronic infections but don’t completely understand as I’m hygienic. Incontinence has also returned, and I’m frustrated by the combination. Portions of the implants remain and can’t be safely removed. Naturally, we wonder if any of the anchors and whatever else is left cause or worsen some things. Further erosion and exposures aren’t likely but possible, so hopefully these are in the past. Pain is a struggle at rest, but medications help. With extended walking, sitting upright and infections, the pain is often severe. We are thankful for my doctors because they’re caring and do what they can. Also, a few difficult complications resolved with surgeries. Pudendal neuralgia and other nerves cause some of the continued difficulties. Much change isn’t likely, but this is what we’re focusing on right now. My husband and children are supportive, but it’s really hard seeing them affected especially as they are so young. Thank you for reading. May God bless everyone, especially those who are struggling and all who are kind, honest and helpful.

  14. Kitty says:

    I think Mayo Clinic does have good Drs. Maybe very specialized Neurological Pelvic Floor therapy might help. It would have to be with the best of the best probably very rare to find. There is no doubt that self cathing is causing a paticular type of UTI—cant be helped. I at one point was asking to have a suprapubic catheter placed.

  15. Kitty says:

    Some women have prevented persistant UTI is by being on low dose Cipro——– 250mg daily. This prevented a UTI for > a year.

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