Adding my two cents to the mega mesh mess surrounding transvaginal mesh complications…

Deb Who?

My husband has been my rock through all this. The mesh complications I suffer from also greatly impacted my family. My husband and boys have really had to step up to the plate, and they have. I can't thank all my family and friends enough for all the support.

My husband has been my rock.  The mesh complications I suffer from also greatly impacted my family and they really all had to step up to the plate. They did.  I can’t thank all my family and friends enough for all the support!

Hello, my name is Deb and I am the author of this blog.   This is a personal blog regarding surgical mesh complications.   I seriously debated on creating this blog, and sharing my experience with mesh complications after having surgery for SUI (Stress Urinary Incontinence).   For one, I am suffering from mesh complications myself and everything is an effort these days.  Secondly, lets face it,  things like SUI (Stress Urinary Incontinence) and POP (Pelvic Organ Prolapse) aren’t the easiest things to talk about.  But, I think it’s very important to share this information.  I get into my main reasons on the “About this Blog” page.   I also happen to love to write, am good at researching things, and am a bit of a computer geek –  so I felt like this was something I actually could do to possibly help others.

As I also mention on the “About this Blog” page, in more detail – I am NOT a doctor , and do not have a medical background.  I have worked in a university for years, where I became adept at research (amongst other things) – but no, I am NOT a medical professional, or an expert on such issues.  I can not, and do not offer medical advice.  What I can offer is my story, and my opinions that are based on my own experience and  research.    Research that I’ll also share here along with any of the resources that I’ve found helpful, and to back up my opinions as well.

You’ll find links to the FDA warnings, medical journals and more here.  I don’t expect anyone to just take my word on anything.

Other facts on me?

I live in Upstate NY, where I have been married for going on 25 years. I am a mother of two great boys (13 & 18).  I am now, 49, but often feel like I’m trapped in a 90 year old’s body since having a simple mesh tape implanted for SUI.  Hopefully, that will change soon,  Like this blog, I am a work in progress! =)   If you want to reach me, you can message me on my Public Facebook Page at: www.facebook.com/MeshMeNot,  or email me at: meshmenot.wp@gmail.com

So What’s My Mega-Mesh-Mess Story?

I had a Monarc TOT(transobturator tape), which is a type of TVM(transvaginal mesh) implant, for SUI (Stress Urinary Incontinence) in Feb 2012 (sheesh, there are a lot of acronyms for this stuff, eh!?).   My symptoms primarily consist of having a severe left hip/leg/groin/pelvic pain that stems from the left obturator area, and then goes out and down my left leg.  My lower back is also greatly affected.  I have had chronic pain, difficulty walking, and even sitting upright.

While some women do not have complications until years after mesh is implanted, my pain was immediate and then progressed rather quickly.   By July 2012, I was using a crutch just to get around at all.   Pain medications became the norm.  Basically, everything became an effort and my whole life was thrown upside down from what I thought would be “minor surgery”.  After a lot of pain and various doctor appointments , I eventually heard of  Dr. Raz at UCLA through my own research online.

I was fortunate to be able to make it out to California for surgery.  I had the TOT mesh sling removed by Dr. Raz at UCLA in Jan 2013.  The removal surgery was not easy, but went well.  Dr. Raz was able to remove my entire mesh sling – something most doctors will not even attempt to do. Matter of fact,  I had a local UroGynecologist tell me it “wasn’t possible”.  Luckily, I knew she was wrong.  I had talked to women online about Dr. Raz, and knew he had removed many mesh slings in their entirety.  I made the hard decision to go to UCLA, at least for a consult. The consult helped me make my decision to go there for surgery.

Wait.  You are from NY, but went to UCLA for Surgery??

Flying2Yes.  I did.  I wound up making three trips out to see Dr. Raz at UCLA, actually.  One for consult.  Again for testing and surgery.  Lastly for a follow-up.  I live in upstate NY.   I traveled twice by myself, and once with my husband when I had the surgery.  All three times I used “wheelchair assistance” in the airports, which I highly recommend for anyone traveling that has difficulty walking!.

Going all the way to CA for treatment for my mesh complications was not easy.  I am not rich.  My initial response when someone suggested this to me was the same as many other women who have mesh complications.  I said,

“that is not possible”,
“there is no way I can go all the way to CA”,
“we simply can’t afford it”, and
“there HAS to be a doctor around here that can help”

The more I researched and got bounced from doctor to doctor – the more my condition only worsened.  Soon, I began to think going to UCLA to see Dr. Raz was my best option if I wanted to get better.  It didn’t feel like I had a lot of options, really.  I could have a partial removal by someone locally, which I not only didn’t think would help but I feared would make things even worse.  Or I had to travel out-of-state to one of the few doctors I heard that MIGHT be able to help me by removing the mesh in my thigh/groin.  I decided that if I had to travel, I may as well travel to “the best”, and that is what I did.

I became VERY determined to get to Dr. Raz at UCLA.  For my consultation, I think I called every day, twice a day to get in on a cancellation.  Surgery wasn’t as easy.  There was a long wait, and an even longer cancellation list.  I know my determination was only part of the equation.  I was also very fortunate to catch some breaks.  I had decent health insurance.  We also had unexpected help in the form of donated airline points from a friend – this was quite a gift.  My husband and family were very supportive and that made things so much easier.  Then, there was all the wonderful support and information I found from strangers online.  People I met in online forums and websites.  Many who I now consider very good friends.  My many thanks goes out to so many who helped me through such a rough time. (Click here for more information and pictures from my trip to UCLA)

impossibleI feel like I am much luckier than a lot of women suffering from mesh, and my heart goes out to them.   Dr. Raz  is a miracle worker, and he and his associates at UCLA can do things that other doctors will say is impossible.   I know, because he removed my entire mesh sling after I was told by local doctors that it was impossible to do so.   Sadly, even Dr. Raz cannot undo permanent damage once it’s been done… and there is only ONE of him.   There are a few other good doctors stepping up to the plate and helping women, but I can only really speak from my own experience and I have nothing but good things to say about Dr. Raz.  I have talked to numerous other women who also went to him, and have yet to hear anyone say anything bad about him (other than it’s hard to get in to see him!).

Life After Mesh Removal

I had the entire mesh sling removed by Dr. Raz exactly 11 months after it had been implanted, in January 2013.  The surgery report confirmed what Dr. Raz suspected, which was that the mesh had eroded through my obturator and abductor muscle tissues, attaching to my pelvic bones (no, it was not supposed to be there).   Dr. Raz had to scrape it off my pelvis and pick it out of my tissues.  There was more damage to my left side, where most of my pain is.  This was not minor surgery.  The pathology report showed that I was having FBR (foreign body reaction) to the mesh implant, which causes chronic inflammation and pain.

watchmeI am doing better since having the mesh out – much better.  It was a very slow healing process, but pretty much immediately after surgery I noticed that the constant, 24/7, sharp, jabbing pain I had in my groin/thigh was gone.  That alone was a HUGE plus.  That pain had made it impossible for me to hardly move, or sit.  I use to say it felt like I had a steak-knife inside my groin, that constantly was hurting, and would hurt even worse when I moved.  That constant pain was gone.  However, it took months for the incisions to heal and before I could get up and around at all.  Considering how intensive the surgery was, and how much damage was done while I was waiting for mesh removal, I was told that this was understandable.  In my case, I could barely walk before the mesh removal surgery and could hardly sit either.     My spine & hips were all out of whack from limping and using a crutch for several months. That doesn’t just go away overnight once the mesh is removed.

myofascialpainreliefcom

Myofascial Release Therapy can help with chronic pelvic pain

I had to wait three months after the mesh removal surgery before I got the ok to start Chiropractic treatments and Physical Therapy.   That was because of how much damage was done before mesh removal, and since it took so long for my deep incisions from the removal surgery to heal.   For PT, I opted for Myofascial Release Physical Therapy.   I would highly recommend this type of treatment to anyone suffering from pelvic pain from mesh complications, or otherwise.  Walt Fritz , a Physical Therapist who practices Myofascial Release therapy, may be able to refer you to someone in your area and you should feel free to contact him.

For a few months, I was making slow but steady progress and was feeling much better than I did before mesh removal.   I was eventually able to sit upright comfortably again, and was able to get off all pain meds.   I went back to work, despite the fact that I was still needing to use a crutch or cane to walk due to pain.   I fully expected that within a few more months, I would be fine.   Perhaps that was wishful thinking, because unfortunately, my progress came to a halt.   Several months after mesh removal surgery, I am still using a cane or crutch to walk.  It only hurts really badly when I try to walk.   Originally, it was thought that I could have some nerve damage.  There was also a chance that my newly diagnosed hip dysplasia was a factor.

js38353692

Mesh Campaigners at Scottish Parliament

I was diagnosed with mild hip dysplasia when I started complaining of pain after the mesh implant and was getting bounced around from doctor to doctor.  At that time, it wasn’t clear if my pain was from the mesh alone, or a combination of both the mesh and the hip dysplasia.  Prior to the mesh implant, I never had any problems walking or any inclination that I might have hip problems of any kind.  I also heard from many other women with mesh complications who had trouble walking – that were not diagnosed with hip dysplasia.  Doctors indicated it was hard to tell what my exact problem was, because the obturator is right by my hip joint.  Xrays and MRI were not real conclusive.   An orthopedic doctor told me they thought the consult with a specialist on mesh was a good idea as he was not familiar with mesh, or the urological procedure I had done.  A local UroGynecologist told me they thought the mesh must be the problem, but that they only could do a partial removal, and “see if that helped”.  Eventually, I went to Dr. Raz, who seemed very certain that the mesh was a problem,  that is needed to be removed, and that he could remove it all.

 

Now, with mesh removal behind me, there is no doubt  that the mesh WAS, indeed, a problem.  I know I feel much better now than I did before having it removed.  I also have the pathology and surgery reports to prove how it had eroded through tissue, attached to my pelvic bone, and caused FBR (Foreign Body Reaction).  However, unfortunately, it looks like I now have to deal with the hip issue separately and that some damage was already done.  (ugh!)   I heard  that because of all the inflammation and mesh complications, it may have brought other problems to the surface as well.   I’ve also heard that there is no way to know when hip dysplasia will start to cause problems, or why.   I know mesh complications, in general, often snowball into other problems and diagnoses.  Regardless of the how, or why, I am just taking it day by day and will do whatever I have to do.

Oh, & my “original problem”, the SUI, did NOT return.  It’s funny how many people ask me about that.  Well, it’s not funny that they ask, but how they ask.  They will lower their voice and whisper the question with a deep look of concern.  As if SUI is somehow worse than all my other resulting problems.  Just for the record?  I’d rather have SUI any day than go through all the other problems caused by the mesh used to “fix” my SUI!!  Turns out, that it’s no longer an issue for me.   Contrary(again) to what local doctors told me, Dr. Raz told me that in my case, I had about a 50/50 shot of my SUI returning after mesh removal.  Local doctors told me my SUI would absolutely return, and again they said it as if it was the worst thing on earth. They also offered no solution for it other than putting more mesh back in (no thanks!).  But, Dr. Raz told me that IF my SUI did return, I could go back to him in a few months and he would repair using a sling of my own tissue.  This is an option I WISH I knew about before I had mesh implanted.  I could have just had the SUI repaired like that in the first place! At least if your own tissue “fails”, you do not need to worry about mesh erosion complications.

I only post my story, with the hope that it may help others going through mesh  complications, or help those who may be considering having surgery for SUI or POP.  I think it’s important that people have facts to go by,  not just personal stories – so, I am including links to any resources and articles I’ve found helpful.  I will post Updates to how I’m doing periodically in this blog as well.

Take care,
Deb

If you want to reach me, you can
message me on my Public Facebook Page at:  www.facebook.com/MeshMeNot,  or email me at: meshmenot.wp@gmail.com.
I have also started a local support group, and if you are in the NY area – please join: https://www.facebook.com/groups/MeshMeNotNY/

 

 

==============Related Mesh Me Not Blog Posts================

125 Responses »

  1. Great job on your blog, Deb. My surgery is schedule with Dr. Rodriguez on May 20th. I have no idea what the outcome will be, but anything has to be better than how it is right now. Thank you for speaking up for all of us.

    Like

  2. Deb, Thanks for the info. Your blog is great!!!!

    Like

  3. If I can get the flights, where can we stay? How soon after surgery can I fly home. Also how many visits do I have to make?
    Sorry for all the questions, I’m just not sure where to go from here, since I can get tickets. I need help in my plan. What I should do first, etc.

    Like

    • Hi Donna. When I went to UCLA I went for a consult first in August, and I scheduled my surgery after that, which I had to wait five months for. I stayed at the Tiverton hotel which is affiliated with UCLA hospital and has a patient rate of like $120 a night. The nice thing about the Tiverton is that it has free shuttle service to and from the hospital and free breakfast every morning and 24 hour coffee. When I went for my consult I stayed for a couple nights, just to be sure to not miss my apt. When I went for surgery I stayed for 10 days but I had tests that had to be done the day before the surgery, & I was only in the hospital one night for surgery. This can differ as i know some women who stayed for 3-4 nights. Then I went back 6 days later to have the catheter removed & for a follow up before I came home. I know a lot of women that only stayed for maybe 4-5 days total in LA when they had surgery, so it depends on what you’re having done and what you’re comfortable traveling with, and other things that you would discuss at your consult. I did go back once more for a follow up just about a month ago because I was still having problems. Again, how many trips out there varies from person.

      There are some links at the bottom if the post to some travel tips on a friend’s blog and if you read the comments on those posts: there’s a lot of helpful information about traveling to UCLA. I hope this helps. I know it’s hard to travel so far but I hope you can find a way to go there. Dr. Raz & his associates really are wonderful. Hang in there!

      Like

  4. Hi Deb, My story is similar to yours. I have been diagnosed with pudendal and obturator neuralgia. I would like to let you know that botox injections into the affected areas has helped a lot. I still have pain, and was in a wheelchair, like you to begin with. I can walk now, and am getting stronger every day. My PT said my gluts and piriformis muscles are atrophied. I’ve seen Dr. Raz 3 times, so far and like you am very fortunate to have been able to go there. Since I’ve been in/out of myofascial release PT, I’m just letting you know that in the experience of my excellent PT who has worked with a lot of mesh patients, she has changed the way she approaches PT. She is now working from the outside in. We all have PFD (pelvic floor dysfunction) and for other types of damage that is the route to take, but mesh complicates everything (it seems like everything). Anyway, she strengthens the outer muscles first and then works to the core strengthening. As you probably already know muscle spasms are not good and a sign that we’ve gone too far. I am finally making progress. I’ve been going through this for years now. Anyway I hope this helps. Of course I’m not a Dr. but just sharing my personal experience. I wish you the very best of full healing.

    Like

    • Hi Ellen. Thank you for your encouraging post. I was never in a wheel chair, although pretty close. I used a crutch for several months… and, am actually just now starting to get around a little without it. I’m glad you went to Dr. Raz. So, he removed your mesh I take it? I have not been diagnosed with any official nerve damage as of yet – and do not think I have the symptoms of the Pedendal issues, but the obturator symptoms are very familiar. Can I ask what kind of doctor made the diagnosis for you? Was it Dr. Raz? And, what test were used to tell? I am glad I’m doing MFR therapy and think it is helping. I know there are many different types of it, though. Glad you found a good PT. Did you do regular pelvic floor PT or anything too? Botox injections sound scary to me. Did they hurt? Sorry for all the questions… as you can see I’m still very much trying to recover myself. =)

      Like

      • Dr. Hibner, of Phoenix AZ, St. Joeseph’s Hospital gave the diagnoses. My piriformis and gluts were (and are atrophied). Dr. Hibner’s PT is an expert at pudendal neuralgia and she diagnoses by doing a few tests of musle response – not painful. She also does an internal test which is painful. At that point she told me to stop PT because it was not helping. After I had surgery with Dr. Hibner I can actually feel my muscles working again. Not sure what he did. I have seen Dr. Raz 3 times and have had 3 surgeries with him. I only had SUI mesh. I am doing myofascial release therapy as well as regular PT exercises for strength. Botox injection are very painful – no denying that. However the last one has given me so much relief – I can walk much farther than before. My right piriformis will spasm first – b/c the left obturator and piriformis were botoxed. Because of the pain relief I can do more and get in better shape. I have other issues that are complications of the mesh that I’m working on. The original mesh shrank, and cut into the urethra. Then got into both sides of the urethra. Dr. Raz did the removals. I may be seeing Dr. Raz again soon. All of this is scary, and it affects our whole lives. My pain med levels have dropped overall, so that is encouraging. I’m praying we all find our health returning to us. God Bless You. Hope this answered your questions.

        Like

        • Thanks for this information…. I sent you an email, as I know it’s not always easy to discuss these things publicly. Thank you for responding and hope to talk more with you, and that you keep moving forward with your own recovery! =)

          Like

  5. Deb,
    I am following in your footsteps going to see Dr. Raz next week.
    I pray you will heal completey.
    ❤ I hope someday to be able to comfortably visit my son who lives near you and get the chance to meet you in real life!

    Like

  6. Linda, if you get this message I would like to talk to you about the trip to see Dr Raz I have an appt on 8 28 13 I have never flown I have to travel buy myself And I would just like to talk to you about this if you could give me a call. Thanks in advance Rita

    Like

    • Hi Rita, I’m so glad you are going to Dr. Raz for a consult. At least see what he has to say. You will not be sorry. I sent you another email, and I hope to add info to this blog soon to better describe my experience at UCLA. For now, there is a lot of good info on Linda K’s blog with travel tips to UCLA, etc.. if you follow the links posted at the bottom of this page (before the comments)..

      Like

  7. Anyone and everyone will Love Dr. Raz. I just had my sixth surgery with him and have been seeing him since 2010. I love him and I owe him my life..he is gentle and kind and understanding, but most of all he is an expert in this area. Dr Rodriguez trained under Dr Raz and she is very good as well. Good luck to all and yes be patient when waiting to get in to see him as it is worth it!!!!!!!!!

    Like

  8. Deb,

    Thank you for sharing your journey. It gives hope. I would love to talk with you by phone. I also had Monarc. I have had three removal surgeries and have been told that the mesh cannot be removed from hip sockets. I still am in agony. If we could talk, please email me to make arrangements so I can call you.

    Like

  9. Hi Deb, I wrote on your blog awhile ago. I was also going through myofascial release. The email I received was to you from a Mary and I’m wondering if you sent it to the wrong person. I read up on your progress and it is encouraging. I’m one of the ones who didn’t know that partial removals were not a good idea. If you want to talk ever you can call me.

    Like

  10. Hi Deb. I had mesh removal 10 days ago, 7 months after it was first put in. My original surgeon had put in the TVT mesh for SUI through the obturator muscle (not meant to be in there) on the left side. This is where I had the most pain. The surgeon who removed it did a fantastic job and he is hopeful that the obturator muscle will regenerate within 3 months. He wants me to start physio to help build up the muscle. I also had pain down the top of the thighs at times but I was ok walking. Sitting and standing hurt on the left side. I’m hoping that the pain will eventually get better on the left side. Thanks for sharing your story for us. It gives me hope.

    Like

  11. So glad you saw Dr. Raz and had the Mesh removed. I just saw him (luckily i live in Southern California), he’s amazing. I have surgery scheduled in 4 months (first appt), I don’t know how I will make it that long as I just keep getting worse. I have severe pain from the mesh erosion, fevers every single day and major immunological problems among other issues all due to the mesh. This mesh is an absolute nightmare. Wishing you continued healing. Thanks for posting your story!!

    Like

  12. I had the monarc sling implanted in 2011. I have all the signs and symptoms of preudental neuralga. I’ve been through heck and back, nothing works for the pain its mainly on my left side hip, pelvic groin and buttox. It goes all the way down my leg the pain. I’ve had physical therapy gone to gyn’s and urogyn and now I’m seeing a specialist who says yes you have pelvic floor dysfunction caused from the mesh. Now I will be starting pelvic floor therapy. The surgeon says that he can only do a partial. He said his partner had done a surgery and tried to remove the arms and the lady almost died from blood loss. I’m terrified. I want to know how I can get into see Dr.raz??. I actually called UCLA medical center. It will cost me $700 just to see him. I can’t pay that I can’t work and don’t have the money. My insurance UCLA does not take it. Is their a way to get help?? Can anyone tell me.?? I’m so scared. I’m having panic attacks . My pain doctor does his best to help me but it seems that the pain meds are working less and less. I get a tiny relief from pain injections but the pain only comes back with a vengance. I can’t walk at times and it hurts to stand. I cry constantly. Help.

    Like

    • Annie,

      I’m so sorry this blog doesn’t get a ton of action, and it took me a while to reply myself to your comment. I really wish I knew the answers to your very difficult questions. All I can say is that you are definitely NOT alone, and many MANY women have been in similar situations. Part of the reason this is all so outrageous, is the fact that getting real help for mesh complications (that are known by the medical community to be “not rare”) IS so very difficult. Most doctors will only offer a partial removal, because that is all they are capable of and I would not want one of these doctors to try to do a complete removal because it IS a very difficult (BUT NOT IMPOSSIBLE for the RIGHT doctor) surgery. There are a few doctors besides Dr. Raz doing full removals regularly and successfully, but not many doctors.

      There are some suggestions for fund raising or stories of what other women have done on Linda K’s blog, in here post, “Mesh and No Money” (http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money/).

      I would also suggest checking out some of the other links listed below this page, to “Blogs & Websites” and “Facebook Groups and Pages”, especially the MDND website (http://meshmedicaldevicenewsdesk.com/). Sometimes, it really helps to hear what others are going through, and what they did that worked or did not work.

      I’m sorry I do not have any real solutions for you. Please hang in there.

      Deb

      Like

    • Annie..have you heard of Dr Hibner in AZ…he has developed a technique to deal with PN problems……I believe I also have nerve involvement that may be PN as well….I will be contacting this dr as well….as soon as I see a few locals….My UCLA consult is a few months off…do not waste time with PT…..I wasted much time on things that did not work..

      Take out a loan if you have to but get to the right person….travelling will wipe out my emergency funds but I do not feel like I have an alternative right now…..I feel lucky to have a little money tucked away…not a lot mind you….but enough for the travel expenses….

      I am sure there will be a snafu with my ins and will hear about it….but I just made appt yesterday…..good luck to you

      Like

    • Hi Annie I too have been told that the first visit to Dr Raz is $700, but they couldn’t even give me an estimate of how much it could cost to remove the anchors that my Surgeon could not get out. Do you know how much aprox it would cost? If you know anything could you please let me know.

      Wendy

      Like

  13. Could someone discuss who they called to make the UCLA travel plans…did you use airline or an agent from one of the online travel sites….is it cheaper when they know it is for medical reasons? I need to fly from east coast…..hoe many hours did anyone travel and how did you do it with all the sitting….that is why I do not travel now…..

    The walking….can someone explain the wheelchair service? Or if you do not normally sit in a wheelchair…is there a shuttle type services throughout the big LAX airport? I may have to travel alone the first appt….and have never done that….

    UCLA gave me no indication that they even helped patient’s with the info for a stay…such as hotels in area…how far hotel is to dr ofc…..I asked….crickets were on the line…..

    I guess what I am asking is also….could a person with definite hip leg…foot issues travel alone from east coast….are there services along the way to ensure ease…..also getting to and from airport to hotels beside UCLA….shuttles avail?

    I feel like I made an appt and now in the blind….

    I appreciate any info…I know it sounds elementary but I would never be doing this if it were not disabling to me….and the stress and uncertainty clouds my thinking so much…

    Like

    • Hi Betty,

      I posted information and pics regarding my travel to UCLA, on my MeshMeNot Facebook page at:
      https://www.facebook.com/media/set/?set=a.304027056398512.1073741830.299505896850628&type=1
      There are details on the main page there for that “album”, and then more with each picture. I traveled from NY to CA alone twice, and once with my husband… It wasn’t easy… but, I did it, and I would do it again.

      I stayed at the Tiverton, which has free shuttle service to UCLA, but there are other hotels in the area that others have stayed at as well. UCLA has a listing here: http://www.uclahealth.org/body.cfm?id=116

      My insurance did not cover travel expenses. I was fortunate to have a friend donate her airline miles to me for one of our trips, which was awesome. I’ve also heard of women raising money with fundraisers…. and having luck with companies like, “Angel Flights” which will fly free for medical expenses, but there are restrictions. Links to these and more can be found in my friends blog post called: “Mesh and No Money” at: http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money/.

      I did use wheelchair service through the airports for all my travel. It is free, and I would highly recommend it if you have difficulty walking. Basically, you just request it when you get to the airport, and they take you everywhere you need to go – right to the plane, and all connecting flights, and out to a TAXI or shuttle to get to hotel.

      I hope this helps. I would also suggest checking out some of the other links listed below this page, to “Blogs & Websites” and “Facebook Groups and Pages”, especially the MDND website (http://meshmedicaldevicenewsdesk.com/). Sometimes, it really helps to hear what others are going through, and what they did that worked or did not work.

      Take care,
      Deb

      Like

    • My name is April and I waited 3 months and had my consultation with Dr Raz. I had never flown previously, and flew from North Carolina. Southwest Airlines helps you if you are on any kind of ‘medical” trip. They were great!! Call and tell them and they can help. They booked my rental car and hotel as well. I do not suggest driving, though, get a taxi and bring plenty of money for the fees! The airports provide someone to wheel your chair, if you need help, at least flying with Southwest .I am scheduled for removal surgery in late September, and then 3-4 months later, a fix with my own muscle tissue. Dr Raz is the most sympathetic doctor I have ever met. His staff is wonderful, and very kind and knowledgeable!!

      Like

  14. Thank you Deb….for your info….bless you for sharing your experience…many people would not know how to proceed since most people are not in the habit of going cross country for a dr…

    Was there or is there a go to person at Dr Raz’s ofc to answer questions of a general nature about his area of specialty….you see…my problem is feeling like I need to understand how the process of having surgery in one state and coming home ….what if there is an issue post surgery? Not an ER emergrncy but just an issue….

    My feeling is that you would have to have a local dr on board as well….but mine would snub me knowing I went out of state….also….where do you stay after surgery and for how long? The procedure sounds very intense….I need possibly revision of an original hyst….or evrn pudental or some other nerve issue…

    I have so many things I need to address….this surgery has to be the one that corrects this issue or I see no way out of the pain and developing disability…my dr does not remove all the mesh and I would not trust her to do it anyway…

    Does UCLA take into account that we are from out of town and may need more time in hosp…is this an out patient procedure? I also ha emailed Dr Hibners office for info as well….it is a lot to think about…You are lucky to have much behind you… thanks again….I will visit your facebook as soon as I make an acct…..

    Just googling the air fare and time it takes to get there from Va is enough to make my head spin…i have so much trouble sitting….how many hours did it take you…

    Like

    • Betty,

      I am on my way out for a wake… and funeral out of town tomorrow…. so, I’m sorry I do not have much time at the moment – but I think some of your questions, like where to stay, etc., are in my facebook album – and it is public, so you should not need an account to view it. (www.facebook.com/media/set/?set=a.304027056398512.1073741830.299505896850628&type=1)

      Unfortunately, there are not a lot of easy or quick answers… and even if you go to the best doctor and travel, there are no 100% guarantees that you will not need further corrective surgery, etc. So much depends on how much, and what kind of, damage the mesh has already done. There are a lot of women who get the mesh out, but still have issues, unfortunately. I have yet to hear from ANY woman who had full (NOT a partial) removal regret getting it done, though. I can’t say the same for partial removals. They seem to often make matters worse. Personally, I am hoping to make a full recovery still – but, that was only after also needing a hip replacement as well… Still, I know, for me, getting the mesh out was the first critical step – otherwise it just keeps causing further damage….

      I will touch base soon. Hang in there!!

      Deb

      Like

    • Hello, my name is April. I had my consultation April 23, 2014. I waited 3 months. I flew to ucla from North Carolina. My research brought me to Dr. Raz. My surgery is scheduled for September 25, 2014, and then another a few months later. They do the surgery in the same building as his office, a floor or two up. You stay overnight for observation, then are released. He told me I would have a urinary catheter in for 2 to 3 weeks after. I am very nervous about the travel back home, and plan to stay a week after my surgery to recover as much as possible. Best Wishes! PS…I am grateful that I have United Healthcare, and they said Dr. Raz is in network and I didn’t need any referral!! They will cover the mesh removal!

      Like

  15. Deb,
    I am also from NY (Western) near Rochester area. How did you manage to pull all of this off? I want to see Dr. raz also, I have been assured he is the best. I need some hope/help.
    I also have been told my insurance won’t pay out of state costs and no one in my area can remove the mesh completely and has also mentioned very scary risks such as permanent bladder puncture or rectal damage. This certainly gives me no desire to proceed since this is how the consults start out the doctor obviously has no real confidence she can perform it with any degree of success yet she had no problem putting the damn sling in originally in 2010. I would love to talk to you more and see if we are located near one another as I have not met anyone from my area going through the living hell I am. I could use a friendly face. Please feel free to respond by email at dragonfly1693@yahoo.com / also if anyone else reading is from my area please fell free to reach out as well.
    Thanks,
    Carolyn

    Like

    • Carolyn,
      I was very fortunate that my health insurance did cover Out of State/Dr. Raz. It went more by doctors than area. I still had to pay for travel expenses and deductible, etc. I have heard of women writing their insurance companies and requesting they cover based on no doctors in area that can do full removals. Of course you do NOT want a doctor to attempt to remove the mesh if they do NOT have experience or skill. It is a complicated surgery, and there are only a handful of doctors I’ve heard of that are doing full removals. Unfortunately, I’ve also heard of women selling practically everything and doing fundraisers trying to get money to cover surgery too. (See “Mesh and No Money” post at http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money/).

      I will email you, and maybe we can talk some more on the phone soon. Hang in there!

      Like

  16. Hi Deb – I am in England and had a SUI and POP operation and woke up not being able to move my left leg. A month in hospital and 8 months with a AFO for my drop foot and a crutch ( moved from 2 crutches to 1) I still have extreme pelvic pain and leg pain, and can only walk short distances slowly, along with possible nerve damage to the leg because of the lack of movement. Cutting a long story short a solicitor took my case and 8 months after my operation I found out it was a TOT (tape) not TVT (mesh) implanted. Luckily I found this out the same day my doctor came to visit because of the extreme pain and intolerance to the pain drugs they gave me at the hospital. He has agreed the only option ( finally ) may be to remove the TOT.
    However, I have been reading only about meshes on the internet and its only meshes that people are suing against, so I can find info on. I’m told they are different and the pictures show how they are different – but I have read they are much much more complex to remove?

    Your blog says a TOT tape and then later a mesh – are they (TOT and TVT) made from the same material?

    UK lawyers and doctors don’t seem to know anything about these? And there is NO way I am trusting any doctor til I know they have done lots of operations with TOT’s and know the complications!!! I know I have to have this out – its killing me – just how to get it done safely…….

    Like

    • Hi Suki. I’m so sorry you are dealing with so much. TOT is a type of TVT mesh. I know it is confusing, and so I have a page here that might help: https://meshmenot.wordpress.com/about-meshmenotblog/tvm-tvt-tot-sui-pop-wth

      Currently, in the US, there are many lawsuits mainly against 6 manufacturers, and various types of TVT. The TOT sling I had, is one of the ones that has many lawsuits against it. TOT slings also are known to cause groin pain that effects walking.

      You are smart not to trust just any doctor. Mesh removal, FULL mesh removal, is very complicated and you need a skilled and experienced doctor.

      Since you are in the UK, you might also want to check out:

      TVT Info (UK) – http://tvtinfo.wordpress.com/
      TVT Mum (UK) – http://www.tvt-messed-up-mesh.org.uk/

      As well as some of the other groups/links to other resources – and articles found here:
      http://tvtno.org/educate-your-doctor/informationfacts-to-provide-to-your-doctor/

      I wish I had more info for you… but, hope this helps for now. Hang in there!
      Deb

      Like

    • Your story starts like mine, except my surgery was for obturator hernia, at a US Air Force hospital; foot drop, crawled, pounded the bed in agony, unable to walk unassisted for 7 mos., wheelchair, walker, crutches For 26 l-o-n-g years I have suffered from sciatic neuropathy and CRPS, with sitting my most painful. I now have severe pain in hip, groin, side, pubic area, and inner thigh. Feeling worse almost daily and still hoping some doctor will get help for me. I am Canadian, living in Ontario, not knowing where in my country I would find a mesh removal expert.

      Like

  17. Hi Deb
    Thank you so much for replying. I have been at my lowest in forever and having people like you respond and help means such a lot. You have helped greatly. Since posting the message I had a good meeting with my solicitors, though the case is still only clinical negligence and the product team will not look at my case because I have a TOT and they only know of cases in the UK for TVT’s. They seem to think they are different and safer, but all the articles I find say same material different insertion. I have alao convinced my doctor that enough is enough and he is making a referral to a gynecologist to have the TOT removed. At this point I will only go with someone with experience and the odds of finding that in the UK are slim. The most aclaimed TVT removal consultant has only done 20 removals and reading the newspapers quite a few had many complications. Your infomation on what to go armed with is fabulous – I was at a loss aas to how to make sure I got things right, and now I’m halfway there- Thank you!!! I am unsure if my leg nerve damage will ever go back to normal – as I don’t see much on TOT’s on web pages, would you be able to tell me if you have recovered after the removal so I know what to expect? (if too much I understand)

    Thank you again ;))

    Like

    • Suki, Yes… the FDA updated their warnings and specifically targeted mesh used for POP (Prolapse) vs SUI. Most TOT slings are for SUI. It’s ridiculous…. because almost as many complications for SUI were reported as POP. I don’t know about the UK, but many of the TOT slings here are in litigation. The monarc by AMS is just one of many TOT slings that has thousands of pending lawsuits against it. I wrote about this a few places… Lastly here: https://meshmenot.wordpress.com/2014/04/17/mesh-for-sui-but-too-risky-for-pop/

      As for me – yes – doing a lot better but still working on things. I should post another update… my last one is here: https://meshmenot.wordpress.com/2014/02/27/2014-02-26-small-update/. That will explain a bunch…. Since then, I have returned to work. I’m getting around FINALLY without always using a cane or crutch, but it’s an effort and I’m still limping and dong PT. I do feel like I’m finally getting better, and very fortunate to be able to say that. Many women can’t get the mesh out, and do not get better. Or keep getting partials and keep getting worse. Even with full mesh removal, many women do need further repairs or some kind of reconstructive surgery after mesh removal. Sadly, some things, like nerve damage or other issues can be permanent even after mesh removal. It all depends on how much damage is done before the mesh is removed. I know, when my mesh was still in, it hurt 24/7… and, I felt like I was just getting worse and worse. At least, once it’s out, you can stop the progressive damage, and start working on getting better. It’s usually not a cut and dry process, though…

      Like

  18. So Glad to hear you are on the road to recovery – gives hope!!! But what a long road to travel!!!
    My solicitors are goning to pull the info out to pass to the removal sureogn ;)) Thanks

    After replying to you got tweets that an MP was presenting the TVT/TOT issue in parliament today, so was up all night making a case with research for my MP to be my voice.
    It has at least got their attention enough to call me today and spend an hour talking to me and making an appointment in June to discuss them presenting for me in parliament. Most women in the UK are sent home on massive doses of this addictive drug and told in the mind – the drug alone makes you crazy, so many women are not questioning and suffering and their is not enough public awareness – our streets are filled with women walking crippled on one crutch and I want to go and ask ” did you too have a TVT/TOT mesh?!”
    So here in UK, my solicitors say not enough cases on the TOT to raise a case unless the expert says as only been used last 5 years and not enough known or cases ( you have to self report )

    – yet all medical articles say they are made of the same thing and TOT have worse cases of not being able to walk and groin pain because leg nerve more easily damaged

    – Also the MHRA ( like FDA ) here is on the side of the pharmaceutical companies ( research shows they have stakeholders – and get their business plans checked by the pharma bodies! – say no more!)
    Anyway, My pain and inability to walk is getting far far worse for me too and I am a terrible mum to both my son and my dog because of it!!! Haven’t left the hose in weeks even with the sunshine, apart from doctor appointments.

    So Now that I’ve raised awareness a tiny tiny bit in my area – I need to move attention to finding the expertise here….which looks slim!!!

    I will read your links tonight when I cant sleep :)) Really great to talk to someone who is walking this road and a bit ahead – your support is keeping me sane….

    Like

  19. In the Texas case that was just settled (mesh medical device news desk website) they had a statement that the TOT meshes were actually causing more damage than the TVT’s. They were just easier for the Dr.’s to use.

    Like

  20. Hello deborah, my name is cheri . I am from ky. I just read your blog and I understand your pain and suffering. I have been dealing with this mesh problem for 7 yrs. I had the mesh put in in may 2007. A monarch like u. I went back for my 6 week check up I told my Dr I have stitches still in there. He just brushed me off, didn’t check me. Said they will absorb. It felt awful to me I could feel stitches eveywhere, felt like guitar strings all through my vag. Then I go back another 6 wks, I said there r still stitches everywhere. He checks me and then has that “o shit!” Look on his face. Tried to trim it and he couldn’t get hardly any. I was a nurse for 31 yrs so I know that look. My ex took up with a 22 yr old.i guess her vaginal wasn’t broke like mine. I moved to a new town, started a new job, little did I know it would be 7 long yrs if this mess. I couldn’t work as a nurse, I hurt in the vag plus I had a bakers cyst rupture. I needed my r knee replaced. With no job u have no insurance. No Dr would touch me. I had abscesses all the time it was awful! As u know. I finally had the mesh taken out last june. I got my disability and was on medicare. It’s been a yr and it has taken all this time to heal. Still have pain but not as bad. I lost everything, my husband, my farm, my livlihood, my horses, my llamas, dam near my sanity! On medicare it is like only a fraction of what I made as a nurse. I struggle to put food on the table. I have been in vaginal mesh lawsuit. I saw online where women with motley and rice that had American like what we had were awarded 40,000. Then legal fees of 40% has to come out, medical lein satisfied, it’s like they get 10,000. I was apalled! All that pain and suffering and only 10,000. I have not had sex in 7 yrs, lost my husband, had surgery, still have pain, I’m in physical therapy. And I will probably get 10,000. How is it the lawyer gets more than the client, who ever heard of that. All those women were livid, talking about not taking it. I dread dread the call I will get for I’m sure I will be disappointed. All those dating commercials on TV make me cry, I just want my life back!

    Like

    • Hi cheri,
      I hear ya. =( Thank you for sharing. So many have suffered so much, and even though three are all these commercials all over the place from lawyers, I have yet to hear of anyone who actually has received any decent settlement that will even begin to cover their medical expenses, let alone pain and suffering. Even the larger cases that were won, the mesh manufacturers are appealing and no monies have actually been paid. Companies like Johnson and Johnson can afford to drag things out. Besides, the longer they drag it out, the longer they can keep selling their product. They don’t care about all the lives they are ruining. =( And, there are so many stupid people that think the women who are filing lawsuits are just trying to jump on the bandwagon with “ambulance chasing lawyers” and collect money they don’t deserve. It’s so frustrating and ridiculous. These people have NO IDEA what kind of hell women like you, AND your family, and so many like you, have had to endure, and will most likely keep enduring. It’s not right. It’s not right at all. I’m at least glad you were able to get your mesh out… and, I do hope you find more relief as time goes on. Hang in there, and keep fighting the good fight!
      Deb

      Like

  21. Hi .My name is Betty> I am from Ireland .I am booked in to have two procedures done in Sept .3rd bladder and vaginal using the slings you speak about.I am now about to ring surgeon and cancel surgery .THANK YOU SO much

    Like

    • Betty – thank YOU for your comment! I’m so glad you are researching things sooner rather than later. Too often it isn’t until we have problems that we really start digging and one of my main reasons for having this blog was to try to help women before they get mesh.

      I’m glad you are not getting mesh! I wouldn’t wish these kinds of problems on anyone.
      If you need surgery/repairs though, then by all means get it – just find a skilled doctor who knows how to do pelvic repairs withOUT mesh. They are out there… just not as common as all the ones using mesh. Of course, if you are not that bad, please try any non-surgical treatments first – like pelvic floor therapy, or a pessary (depending on what your issues are). Take care.

      Like

    • Betty Cummins you are such a wise woman ! Well done for researching before you went ahead with this operation. Normally a person who researches everything, I was so keen to get things sorted and start living again I did not question the “simple operation” or the “little sling” insertion. I woke not being able to move my left leg, in extreme pain. 11 months on and I am in a terrible way – every day I scream in my head – get this thing out of me – every day is pain. Never NEVER have TVT / POP / TOT /TVT-O mesh ( or they call it tape too !) put inside you!! You have saved yourself from pain you can not imagine and years and years of surgery – a life ruined. Well done for being smart – HELP OTHERS BE SMART TOO!

      Like

  22. You have saved on person! Job well done – the word is getting out there !

    Like

  23. Amen! Thanks Suki. Those of us who have been injured need to shout it to the world because there are still so many doctors giving out little to no, or even dead WRONG information. Did you see they finally banned mesh (for POP AND SUI) in Scotland just recently? Maybe others will smarten up and start following suit! See http://www.bbc.com/news/uk-scotland-scotland-politics-27884794

    Like

  24. Yes I have been tweeting, face booking, emailing, like you would not believe – Great news !

    Still so many more every day having this operation – I will keep on going till all women are saved by the ban.
    I see so many women in my area hobbling along – nobody told the truth of what has happened to them. I have a South Africa friend who is an anesthetist who has started to ask questions and talk to urologists doing the operations – I think he sees the links – hopefully we can save women worldwide.

    Did you see the article I tweeted though. The FDA are looking at people discussing the effects of drugs and devices via social media to tackle bad press of products – some kind of watch dog on what is said – to me that is worrying as we won’t be able to help others by speaking freely.

    Like

  25. I also had mesh placed in 2011 . My whole left side of my body hurts , my hip my pelvic area my groin and my butt are all affected, its hard to walk. I woke from surgery numb but as soon as the medication wore off I knew I was in trouble. I can’t begin to tell you the road I have been down. I’m suffering. My doctor never told me he could have used my own tissue to repair my leakage. This has ruined my whole well being . I’m fighting . I see a pain specialist, a neurologist who says you have nerve damage. I’m in and out of the hospital with infections. My body has reacted weird to the mesh. I’m now seeing a psychologist because I have PTSD diagnosed by her. I just applied for disability benefits. I hope I don’t get denied. God be with us all it takes a lot of strength to fight this battl

    Like

  26. Kristine
    Your story is my story – almost word for word – it is like I am a ghost watching someone re live my hell. Woke up unable to move my leg and in extreme pain. No such luxury of neurologist or pain clinic – all left at my GP’s door – taken months to piece together what happened.
    Are you in the UK seeking benefit or the USA – the reason I ask is by fate and a pastor I know of help with benefits and can chat to you privately about it in you are in the UK and struggling with the benefit ( just need to know if you are over the 16 or 26 week waiting on your application to be assessed )

    I have found so many stories – today a friend said they enquiried after a colleague who had not been at work some time – turns out same operation and same story as ours…

    Together and with faith – we will get our message out. And stop this happening to others … And along the road you will have the treatment to be well again – people have to remind me in my black dark days – we will win.
    This site is a great support and Other People are on other sites like tvtinfo com… What I am saying is at least through social media we can see we are not alone and gain strength from this.

    Take care – let me know about the benefit.

    Like

  27. 54, Mom of 5 sons, truck driver. My bladder was coming out of vagina. Dr. put in sling, got bad pain in 2002. He told me gall bladder which was removed with much pain. Sling does not show on testslike MRI, Ct. Friend went to same dr had 13 surgeries. My husbsnd left. Dr.s think its in my head. Left side fine r side painful. One side held by pin, drs gun jamned in surgery so mesh on r side where pain is horrible. Friend went to same Dr. had 13 surgeries, an still not right. I’m scared, I want to leave it alone, but than I want it fixed. My mom had a stroke. An if I get sicker, we got no one to care for us. Feel like a death trap in me. Just scared, an messed up.

    Like

  28. Dr Raz is my miracle Dr also!

    Like

  29. I too have had a similar situation…don’t even like thinking about it anymore as I am starting to give up hope that anything will ever change. I am a registered nurse and have had to give up nursing. I still work in the medical field but it’s really difficult not being able to do what I love after 22 years of nursing. 3 Surgeries later….drop foot starting and now at age 49 being told I need a hip replacement when I can no longer handle the pain….what is there that can go right? My cystocele has returned (Had 2 mesh removals but I feel as though there is still mesh inside me)…my back/hip & groin are causing me so much grief…especially towards the end of each day. My urogynecologist told me months ago that I needed another surgery – a pelvic reconstruction (already had my urethra reconstructed) and now I just got a letter stating that she has decided to retire early and has already left her practice. Lost for sure….just want someone to talk to that knows where I am coming from.

    Like

  30. I am having a hard time getting my Dr to even check to see if my tvt is eroding. She keeps telling me she can’t feel or see it and none of my symptoms add up. So here are some symptoms I have. 05 is when I got my tvt. Since then I’ve had hip problems off and on. Dr after Dr saying nothings wrong take this pill. Within the past 2 years I’ve had 9 UTI, a new vaginitus? Meaning ph level is off, I was treated with antibiotics 2 times already this year I’m tired all the time but when I lay down to sleep I’m awake because my hip and lower left tummy hurts.. sharp pains that spread to my back. Back to the Dr she finally orders a ct scan and when she called me to read my results I was balling. She said there were no kidney stones. As I’m waiting for her to read the rest she said blood work all came back normal and not sure why your having this issue and please call if my fever continues. I was so mad when she didn’t have them check oh I don’t know the bowels maybe the bladder. I was in a ct scan and all she checked was kidney? Frustrated! How can I make my doctor listen to me? I know it’s my tvt. Also for the past 2 weeks my urine tests normal yet it burns to urinate. Doesn’t hurt with sex, hurts to push in on my tummy tho.. Help.

    Like

  31. Ladies, I am so sorry for the delay in responding here. I have not been online as much lately, or keeping up with this blog. I hope you have found others to talk to as well, like some of the Facebook groups, or other blogs mentioned on the bottom of my blog here. You are NOT alone. There as SO many others going through similar, terrible, pain and complications from mesh. It is so not right. I truly feel the first step for anyone having serious mesh complications is to somehow get to one of the few experts at mesh removal – and get the mesh out. All of it… or as much as possible. Not the partial removals most doctors offer, or injections, and pain management, etc. Please… if you can… find a way to get to Dr. Raz or one of his associates at UCLA… or Dr. Veronikus at St. Louis. A few other doctors are coming forward, that are now doing full mesh removals – but, it is a difficult surgery so please do your homework before letting any doc do surgery on you again. So many docs are in denial, and still using mesh, and you will find it difficult to get them to understand or believe that the mesh is the problem. Mesh will not show on mosts tests they preform. They need to do a 3D ultrasound, or a transvaginal ultrasound… You can try giving them some of the literature that is out there (http://tvtno.org/educate-your-doctor/informationfacts-to-provide-to-your-doctor/), but truthfully, it might be easier to find a new doctor, or make the decision to travel to one of the known docs who “get it” already…

    Please check out some of the other links and resources listed at the bottom of my page…. Unfortunately, there are not any easy answers. I wish there were. It has been a rough few years for myself, but I am doing better, finally… not 100%, but much better. I am convinced that had I not traveled to UCLA for full mesh removal – that I would NOT be able to say that.

    Like

  32. dr. veronikis , is a fraud and a liar, he in a report on medical news desk said he would see all women damaged by mesh, he denied me I GOT THE RECORDING TO PROVE IT. HE SUGGESTED ME GO BACK TO A OCTOR THAT LIED TO ME AND DONE MORE DAMAGE IN TRIMMING, THAT SAID MY MESH COULD NOT BE REMOVED. DO NOT SEND WOMEN TO A LIAR LIKE VERONIKIS.

    Like

    • Peggy, wow… I’m so sorry you are going thru all this and had a bad experience with Dr. V. I have not ever gone to Dr. Veronikis myself, and only suggest him because I have heard so many women say that he did help them and had good things to say about him. I went to Dr. Raz, and I truly believe he saved my life and that he is an amazing doctor. I know many other women who agree with me that he is “the best”. I had a hard time finding anyone who actually went to him, and did NOT have positive things to say, however, eventually, I did hear a few complaints about him as well. I think everyone needs to do their own research on doctors… go on consults… and try to find a doctor that will actually be able to help them and they feel comfortable with. Have you had any luck with any other doctors? Any chance you can get to Dr. Raz?

      Like

      • Everyone has specific issues concerning mesh and it’s mess. Just because Dr.Veronikis was unable to help one person doesn’t make him a liar. He has helped many, many women. He’s very kind and compassionate. I don’t know why he couldn’t help the person but I can’t tell you I know a lot of women that have received great care from him. People also have to remember, it’s up to your insurance company to approve covering the surgery. That has nothing to do with him. That’s the insurance company. If you don’t have insurance then you have to find a way to come up with the funds. People can’t expect him to work for free. Anyway, I just wanted to stick up for him. Like hundreds of other women would do.

        Like

  33. Thank you for all of the info. I have been referred to University Of Vanderbilt to Dr. Biller. I was also told it could not be reversed, I would have more issues than I started with. You have given me so good hope. I had to go through three Gynecologist before I found the most caring and concerned Doctor Dr. Nicholas Sholty in Pensacola Florida. He and his staff are amazing. He said he could do the surgery, but he treats his patients as if they were is mom or sister and he wants the best for them. It shock me to hear a Doctor say he could do it, but is willing to not pad is pocket and send you to a better Dr. that does these kind of surgery’s on a weekly basis. Truly amazing man. I will never go to another Gyno. Again thank you for all the information.

    Like

    • Hi Sandi, I’m glad you found a doctor you are comfortable with. Do you know if he has been doing full mesh removals (vs. partial removals)? Full mesh removal is a very difficult surgery, and so experience does count. Also, do you know anyone who had surgery with him and is doing well? Maybe, yourself? These are the kinds of things I would want to know if I still needed mesh removal surgery…

      Like

  34. Thank you Deb for this blog. I have seen 3 doctors since March 2014, the first said yes there was erosion, referred me to a Doctor in Atlanta. He is out of network, he wanted up front $21,000 plus for the surgery, plus a $1500 appointment fee.. The second said he sees no erosion , but my symptoms are consistent with the mesh issues. Referred me to University of T.N My husband and I traveled to T.N on the 5th of this month, just to be told it was not the mesh. It was the Obturator muscle. Do kegels and sitz baths. The kegel exercises only make the pain worst. I am about at my wits end. We can not afford to pay out-of-pocket for the out of network Doctor’s. This has been a nightmare for my husband and I. The Doctor who implanted the mesh told me not to worry about coming back for three years for a check up. Well that just put him out of being sued do to the Statue of Limitations.

    Like

    • Sandi,
      So sorry. So many women are turned away that need help. Mesh complications are not being addressed – just swept under the rug by most docs. There are really only a few doctors who are experts on mesh removal, like Dr. Raz at UCLA, and Dr. V in St. Louis. There are a few others popping up, but you really need a doc who not only really understands mesh complications, but has experience with mesh removal. Unfortunately, getting to one of these docs is not always easy… or even possible. I wish I had an easy answer. Unfortunately, nothing seems to be easy when it comes to dealing with mesh complications…

      Like

    • Sandi, How are you doing? I’m in TN. And have to been to doctor’s in Knoxville TOO.4 surgeries later, I’m worse than ever.
      !! I HAve a Miniarc sling that was placed in2011. It has ruined my whole life.. I leave Monday morning for UCLA! I have an appointment with Dr.Raz. I am hopeful that he can help me.. DO Not have Revision surgeries! That makes you worse I think. Love your heart .. keep reading, researching .

      Like

  35. Hi Everyone It gives me hope that there are so many that are hoping for help from Dr Raz at UCLA. I have been in contact with him after my last operation was only a partial removal and still remain in pain and unable to walk from the TVT-O, and am considering raising the money to fly from England UK to LA to see Dr Raz and have him remove the rest.
    I would really welcome from anyone who has had a TVT-O removed from Dr Raz (especially if already partially removed) to help me understand a few things.
    Here in the UK they told me I would have to have a groin disection which would entail exposing my pelvic bone and grinding the mesh off the bone. I was told a complex operation they don’t do at the hospital considered the best at TVT-O removals and one that they said would mean another lengthy recovery. This operation would be done without first using any equipment to detect and locate the mesh.
    However, Dr Raz said he uses an ultrasound to locate the mesh, does not use groin disection, and I will only be in hospital 24 hours with a 6 week recovery. That sounds like heaven having been bed bound for 12 weeks after my last operation and with a bladder infection that just won’t go.
    So can anyone explain and describe how the remaining 16cm of my mesh can be removed with relative ease compared to the groin disection route offered here in the UK. Is the anchor in the leg removed by cutting, even if close to a main artery?
    Do you see the mesh after? Does Dr Raz take photographs of the procedure? Does he photograph and preserve the mesh?
    Has anyone had any complications after surgery with Dr Raz? I know he said to me it is hard to remove it all now that they have only partly removed the mesh.

    Any help, advice or sharing of stories that can give me a better picture of what to expect and chances of getting my life back – would be welcome 🙂

    Like

  36. I need help I’m scared and conflicted and would love to chat with you some how my email is XX@gmail.com I have a pelvic mesh and sling in me and I really think it’s doing damage to me but everyone thinks I’m crazy. My husband thinks I’ll make my body worse if I have surgery to remove it even if I went to Dr. Raz and I’m afraid of something going wrong with a major surgery to remove it because I’ve almost bled to death the first surgery I had to put it in including a hysterectomy.

    Like

    • Nicole – I’m sorry for the delay in responding. I’ve been having computer issues and just struggling to keep up. I’m so sorry you are going through all this. =( You are NOT crazy.. NOT alone.. and, if you could at least go for a consult to Dr. Raz, or Dr. V – I’m sure they would confirm that. I don’t know your medical history – so, I can’t say if you should/could have the mesh removed – but, I do know that MOST docs will tell you it’s too dangerous, or impossible. They ALL seem to say that – UNTIL you get to one of the experts. So, unless i heard that FROM Dr. Raz, I would have a hard time believing it. I wrote about this here: https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/.

      Are you on Facebook? I have a public page there – https://www.facebook.com/MeshMeNot, and we could also private message there or you can email me at meshmenot.wp@gmail.com. Please hang in there.

      Like

    • Nicole, I can tell you that the mesh dysfunction only gets worse, not better. Not with estrogen cream and especially not with trimming it..

      I had mine in for over 8 yrs, and every year was worse..I had to have surgical procedures, two, on my R lower calf and ankle. At that point I did not know it was related to the mesh. No matter what you are imagining, keeping in erodes mesh is pretty bad over time.

      Our bodies movement causes the problems to get worse. When it was removed. I did not go to UCLA, but I traveled out of town and flew back less than a week later, never thinking I had that strength. Somehow we find it. I had it removed from 3 places.

      By now maybe you have made this decision, but sometimes you just have to go with what you are feeling and not the opinion of your spouse. This is a walk you take alone. No one can know the symptoms you may suffer with but you, and another woman who has felt the internal ripping….

      Mine was contracting pulling my tissue in, like a claw clenching from the inside. I still have some pain from groin to leg, but now that I am 12 weeks post op, hope to have PT.

      A good surgeon can make it way less stressful than it needs to be. I hope you have found some answer by now.

      Like

  37. Just wanted to let Nicole know she is not crazy – we are all made to believe we are the only ones and that we are crazy – then we find each other and realise we are ALL in varying degrees suffering from this mesh – once the secret is out, you’ll find a family of supportive women walking the same road as you. X

    Liked by 1 person

  38. Deb you mentioned that Dr Raz picked out the mesh from different pubic areas, but is this the same procedure as with the groin removal proccess? I had my vag mesh removed anterior, posterior and the sling but the dr did not recommend the groin atea citing it could make my groin hip and leg problems worse.

    I am still confused by drs who say they can remove all mesh but caution that some will still be left in groin. I am 7 wks post op and still have pain and disability from the sling removal. That was pulling badly before surgery. I had bad erosion vaginally

    Since sling is out the incontinence that I never hadto this extent is worse. I thought a leak meant less than a dropper full i am using maxi pads day and night and will need a burch.

    The groin hip leg pain has ruined my life. I am looking for a lawyer to sue the dr who for over 8 yrs stonewalled me by telling me I had another problem going on. Never admitted the groin pain could be from her procedure. Many times she simply lied to me…

    Is there anyone out there that knows of a lawyer who is not afraid to sue a doctor..

    I am still confused about how to proceed with the groin issues. I have to go back in 2 wks for post op but am not sure my dr will be able to help me as they are out of town and there is not many options in my town that i have heard of….thanks for any replies

    Like

    • Hi BJ –
      I specifically went to Dr. Raz because he said he could/would get the mesh out of my groin area – when local doc told me that was “impossible”. When I told her I knew other women who were traveling to Dr. Raz and getting this done, she said she thought it was “too risky” and she would not recommend it, or do it herself. Most docs will NOT even try to get the mesh out of your groin areas. I only know of a few that are doing this – Dr. Raz, and Dr. V. So, if a doctor says they will do a “full removal”, but they don’t mean the groin – or plan on leaving “the arms”, or “the anchors” – that is not a full removal. Is there any way you could go to one of them? They could remove the remaining mesh, AND do any repairs you need without mesh.

      Please see; https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/.

      You may also want to post in one of the FB groups, if looking for more feedback… I would try:
      The :Women’s POP/SUI TVMesh Complications Support” group (Closed):
      https://www.facebook.com/groups/317477065098820/

      or for general info in a PUBLIC/OPEN group, see:
      https://www.facebook.com/groups/meshproblems/

      Like

  39. Hi Deb,
    I had a pelvic mesh sling with complications. I have insurance. Should I attempt to get it removed before filing the CA suit? I’m not sure you can answer.
    JP
    ilovetheword7@aol.com

    Like

    • JP – No – I can’t give medical or legal advice… Personally, I would be more concerned about getting the mesh removed (by someone who can do it!), and getting better, than the lawsuit – but, that’s me. Most people I know with lawsuits are still waiting for any money… and most likely will not get nearly enough to cover their medical and personal losses anyway. So, I wouldn’t hold my breath, or put my health at further risks, for any lawsuit.

      Like

      • Dear JP
        I am having the mesh removed on the 29th of May in a couple of days. I am seeing Dr. Twiss at the University of Arizona,Tuscon. Dr Twiss trained under Dr. Raz for several years. I have had all the test including the ultrsound.Tried to do pelvic floor physical therapy, but way to painful. I agree with Deb get the problem taken care of before it gets worse, and it does get worse. I started seeing Dr. Twiss last September and after all tests etc. I have waited 4 months for surgery! There is such a demand on these Dr.’s from all of us, it takes alot of time to get this done. I’ll let you know how it goes, I too have to travel, but only 80 miles, beats Calif. Tho. JC

        Like

  40. Dear JP
    I am having the mesh removed on the 29th of May in a couple of days. I am seeing Dr. Twiss at the University of Arizona,Tuscon. Dr Twiss trained under Dr. Raz for several years. I have had all the test including the ultrsound.Tried to do pelvic floor physical therapy, but way to painful. I agree with Deb get the problem taken care of before it gets worse, and it does get worse. I started seeing Dr. Twiss last September and after all tests etc. I have waited 4 months for surgery! There is such a demand on these Dr.’s from all of us, it takes alot of time to get this done. I’ll let you know how it goes, I too have to travel, but only 80 miles, beats Calif. Tho. JC

    Like

    • Joyce – thanks for adding your thoughts and comments. I hope others listen. I do hope your surgery with Dr. Twiss went well… and that you get a little better every day. Mesh removal surgery is not easy…

      Like

  41. JP,
    Read all of this blog.. Take the time and educate yourself and do not worry about lawsuit. NO amount of dollars can compare to having your health and peace of mind.
    I am 2 weeks post op from complete removal by Dr.Shlomo Raz..
    4 years ago TODAY my life was ruined when I had a miniarc sling placed in me. Those 4 years I was abused and mutilated by useless doctors..
    Dr.Raz helped me, he is helping and saving women every single day..

    Like

    • beth – thank you for commenting and sharing here. I love Dr. Raz, and feel like if anyone can help – he can. I do hope you are doing much better and continue to feel better with time. ❤

      Like

  42. Thanks for posting this It has answered so many questions for me. I had to have my bladder mesh repaired about two years ago. My mesh started invading other parts of my body I also developed a huge stone that was related to the mesh that developed inside my bladder blocking my urethra. I had to have emergency major surgery to have the stone removed my doctor felt like the mesh couldn’t be removed. I have not been the same since I have the pains on my left side and cant walk long distances. I had to receive a blood transfusion about 9 months ago it has to be related.(I has already been healthy until I had this mesh inserted into my body) I cant sit for a long time which makes it hard to work. I couldn’t figure out why its so hard to walk…why I am in so much pain. I am apply for disability because it is so hard to sit and do my job. I am going to look into going to see Doctor Raz. I have family living in LA. I want this removed out of my body I had never had major surgery. It was so easy to put this in but to repair it I had to have my stomach cut and at 57 my body feels like I am 88 sometimes. No one understands my pain when I get up from sitting I am in so much pain. I have the new Obama care insurance Just got it I’m going to find out if out of state is covered…

    Like

  43. Cindy – I’m so glad you found this blog helpful, and that you are considering going to Dr. Raz! He is great… but the wait time to see him is not so great. In the mean time, if you need support and/or info, there are many listed on the bottom of this blog – and a listing started at: https://www.facebook.com/notes/mesh-me-not/links-to-resources-support-groups-and-information-regarding-surgical-mesh-compli/299518930182658

    Hang in there!! ❤

    Like

  44. Thank you Joyce and Deb. I just accidentally found this blog again tonight. My computer has been off for a few weeks. i wasn’t sure if I should check on having it removed, I had physical therapy and eventually got some relief after a second procedure to loosen it. I ‘m not having very many difficulties now. I have to push and concentrate to urinate. I already had some lower back issues that seem worse. i cant sit for very long or my back bothers me. I guess my body has adjusted to it and I’m afraid of having it removed.

    Like

  45. This is a personal decision for each one of us. In my case the pain only got worse as time went on. My surgery became my only hope and solution. I have had surgery and now recovering after 2 weeks. I will require one more surgery because mine has no anchors and Dr. Twiss couldn’t see the top of the mesh from the vagina. He will go in through my abdomen next. Physical Therapy was unbearable and I was not going to subject myself to more pain. Dr. Twiss studied next to Dr. Raz for 2 yrs. and knows what he is doing. That’s the key. It has to be a Dr. Twiss or Raz, or someone who trains under Dr. Raz in my opinion.
    Keep Healthy and best of luck in your journey. JC

    Like

  46. Hi everyone I am so glad I found this blog .I just had my 5th surgery a few weeks back to remove some mesh the dr s also told me that they probably will never get it all out .Im so tired of having pain everyday and I don’t like to complain to anyone cause they just don’t understand what I am going thru .my husband is great but it takes a toll on him too .im still having pain and was hoping that it would have stopped after this last surgery .sorry I just needed to tell someone how i feel knowing they know what its like

    Like

    • Hi Bonnie. I’m afraid this blog does not get a ton of traffic/comments – but, I am so glad you found it and left a comment for me. Thank you. It is hard, because so few understand… but, please know you are so NOT alone.

      It sounds like you have been having partial removals… which often lead to more problems and removals. That is why I, and many of us, travelled to one of the few specialists who do full removals. Unfortunately, most doctors simply are not skilled in the area of mesh removal… I really don’t k now why more do not refer people to the other docs that are, but most do not.

      Please see; https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/.

      You may also want to post in one of the FB groups, if looking for more feedback… or just to connect with others who DO get it. I would try:
      The :Women’s POP/SUI TVMesh Complications Support” group (Closed):
      https://www.facebook.com/groups/317477065098820/

      or for general info in a PUBLIC/OPEN group, see:
      https://www.facebook.com/groups/meshproblems/

      Please take care. ❤

      Like

  47. Please read. I have to get to UCLA. I have no money. I started a gofundme.com/zsdk6xw. Other then my daughter and grandmother I have no one. Please help.

    Like

    • Hi Julie. I see you posted a link on my MeshMeNot Facebook page for this… and that is fine. You can share it here as well, if you like. I know you are, unfortunately, only one of many that are trying to raise money to cover medical expenses. It’s a shame… and, I wish there was more I could do. I give you so much credit for taking the initiative to try to help yourself, though…. We have to… because, unfortunately, the systems in place are not working for so many. =(

      Please stay strong… keep trying… hang in there, and keep us posted, if you can.

      Like

  48. Hi Deb,
    I’m having mesh removal Monday with Dr Raz I had monarch transb sling.how long is recovery? I think we are similar

    Like

  49. Your one of the lucky privileged Mesh Women….Women like me who are in Great Pain and suffer EVERYDAY, but CAN’T get our Doctor’s to remove the Mesh….they say it simply CAN’T be removed! And I CAN’T afford to fly to California and pay out of pocket to have this Surgery done, yet I NEED it done SO VERY badly….I DON’T think it’s FAIR or RIGHT that the more Rich Women can get help, while the one’s like me are left to suffer….I’m happy for you that YOU got the Mesh removal, your very Blessed. I’m NOT able to get such help, and now I CAN’T work anymore either….I have applied for SSD Disability, I was denied BOTH Time’s, now I wait on my Hearing with a Judge, and pray to God I get approved!…I’m so depressed and in SO VERY MUCH PAIN, everyday since the Mesh surgery in February 2014. My Life has be stolen from me, no sex Life with my partner, no driving anymore, no doing the thing’s I use too with my Children anymore, everything has changed, my Life stopped after this was done to me. And the Doctor’s DON’T seem to even CARE! Good luck to the rest of you, and for those who get to go to California and get help, I really hope you know how lucky you really are! And to think about ALL the other Women, like myself who will still be left to suffer….because a lot of us are forced to be on State Medicaid, because we can’t work anymore, and Medicaid doesn’t pay for the much needed HELP we so badly NEED! And the Good Doctor’s DON’T take it because it doesn’t pay enough. God Bless ❤

    Like

    • Amy,

      😦 I’m so sorry you are going through all this. You sound angry… and I don’t blame you. It DOES suck. It is NOT fair. I believe your pain, and totally get your frustration.

      I do not consider myself rich – but, rich is a very relative word. I did not (and could not, if I had to) pay for my surgery out of pocket – but, was lucky that my health insurance covered my medical expenses (for the most part) with UCLA – even though it was across the country. They did not cover travel, etc. I was lucky to have a friend of a friend donate airline points… and, yes, I do consider myself very lucky. Very blessed. I do count my blessings every day. Especially since all this mesh mess. I appreciate everything that much more, like walking.

      I used a cane/crutch for over 2.5 years and being in pain 24/7 for much of it. I missed many of my kids functions, and put a huge strain on our family, etc. during all this. I am still not back to “normal”…. or where I was before I had the mesh implanted, but I talk to enough other women suffering from mesh complications, like yourself, to know that I could be sooooo much worse. Many of them, have had multiple partial removals, and multiple problems. Some dealing with the pain you describe, and so much more, for many years. Many of them can’t work, like you, and so much more. So, yes, I know I am lucky I found out before it was too late to not do the partial removal (https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/.), and that I was able to find a way to Dr. Raz.

      The whole reason I started this blog was to try to warn other people, and to educate those who do not have mesh YET… and, also to try to help other women who need help find support. Unfortunately, there are not any easy answers. =( I wish there were. I am not a doctor… or in the medical profession. I wish I was rich… and could do a lot more… but, I do what I can. I don’t blame you for being angry… but, I hope you direct that anger and pain at the people who deserve it… – and that would be the Mesh manufacturers, the FDA, and the doctors that keep using mesh in spite of all the warnings and information out there now. Ultimately, I wish, and hope that you will find a way to get to one of the doctors that can help… and, that you are able to get some relief. Please don’t give up.

      You may want to post in one of the FB groups, if looking for more feedback… or just to connect with others who understand and are going through similar experiences. I would try:
      The :Women’s POP/SUI TVMesh Complications Support” group (Closed):
      https://www.facebook.com/groups/317477065098820/

      or for general info in a PUBLIC/OPEN group, see:
      https://www.facebook.com/groups/meshproblems/

      Please take care. ❤

      Like

  50. Wendy, so glad you read Debc’s blog. I knew she would answer. 🙂

    Like

  51. My life has not been the same since my 2011 surgery. I am so sorry for all you pain, as sad as it is it lets me know that I am not crazy.

    Like

  52. Deb,

    I was planning on getting the Monarc TOT sling, supposedly from the best UR guy in my area.
    What have you found that women do if not getting the mesh? Still doing my research. Thanks for your blog!

    Like

    • Hi Pat. So glad you are doing your research! Good for you. It is all too easy to just trust our doctors advice… but, unfortunately, that is not working out for MANY who are getting mesh tape/slings.

      I hope you will NOT get the monarc, or any mesh. The monarc and TOT slings are especially known for causing problems in the groin, and walking, because of how they are placed through the obturator muscles. A good doctor can do repairs without mesh, making a sling with your own tissue. There is NO evidence that repairs with mesh last longer, or work better. They are just a lot easier to put IN. (not to take out). I strongly recommend you find a doc who does traditional, non-mesh repairs. Of course, try pelvic PT and/or a pessary first. They market the tape/slings as “quick and easy”, but if you are one of the MANY that has problems, they are anything BUT quick or easy. Please see this post, and the links in it: https://meshmenot.wordpress.com/top-10-things-to-know-about-mesh-before-surgery-for-pop-sui/
      and this: https://meshmenot.wordpress.com/2015/05/31/are-you-a-good-mesh-or-a-bad-mesh/

      If you want to talk to others, I would suggest one of the support groups, like: Mesh Problems (PUBLIC/OPEN TO ALL, including doctors, etc): https://www.facebook.com/groups/meshproblems
      I know it’s a lot to take in… but, so worth it. I WISH I had found anything like this before I had my surgery.

      Like

  53. Does ALL MESH DETERIATE??? I don’t know if my problem with stomach is related to mesh surgery 12/13 yrs ago. How can I find out? Docs here in Deleware aren’t very educated on mesh.

    Like

    • Dottie – mesh, apparently, works fine for many. It just also happens to NOT work fine for many. Some have problems right away. Some not until years later. That is part of the problem… there is NOT long-term date on this, and they are just now starting to realize and acknowledge mesh is causing issues, and what kinds of issues. Unless you go to a specialist who deals with mesh complications, they will probably not even consider mesh as your problem. Many, like myself, have had to travel to go to one of the experts to get real help. It’s not right. But, that is the best thing I ever did for myself. Please see: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/
      and,
      https://meshmenot.wordpress.com/2015/05/31/are-you-a-good-mesh-or-a-bad-mesh/

      It’s a lot to take in. I know. Please hang in there. ❤

      Like

      • Thanks For the prompt reply. Hope I am not one of the unfortunate.
        Regards,
        Dottie

        Like

      • Deb, thanks for all this info. I have seen Dr Raz twice now and am scheduled for botox as Dr Raz has diagnosed nerve damage (from spinal stenosis). So now I’m trying to learn about botox. I’ve never had a sling or mesh because I was fortunate enough to be forewarned against that type of surgery.

        Dr Raz and his staff and Fellows have been great. I hope he is able to train many Fellows so more women can be helped. Dr Raz is scheduled very heavily now so expect a long wait for appointments.

        Dr Raz did recommend Dr Phillipe Zimmern in Dallas, so some of your readers might find him easier to get to.

        Like

  54. Thank you. I’m sitting here in the tub – crying. I never slept last night – too painful. I’m just so sick of all this. I think we had pretty much the same TVT. We both had pretty much the same result. Mine was done about 13 years ago. But lately the pain is going down the other side. We don’t know why. I’m so frustrated. Why did this happen? ??? WHY!!!!!
    But your blog did help me feel less alone. Thank you again, Rachael

    Like

  55. Deb,
    I too am a Mesh Victim I had a C.R.Bard Bladder Sling for SUI back in December 10th, 2004. I have had different problems than you have had. Mine not as physically debilitating. I actually had no clue until March of this year (2015) that all of my declining health and autoimmune disorders were all due to mesh. I’d love to speak with you on the phone if possible? I am a lost Christian woman that is from Omaha, NE but I now. Live across the Nebraska boarder in a small town called Council Bluffs, Iowa.
    If you feel like mentoring and listening to me and my story I would feel honored. You can reach me on my cell at XXXX .

    Like

  56. Thank you

    Like

  57. My mom lives in Omaha and has complications. She greatly needs to speak with someone who is going through this. I would love to send “Mary D” my email address! Thanks

    Like

  58. The description of symptoms of leg pain is greatly explained by web health network. It’s a must read.

    Like

  59. The beginning with your story could be me. I ride horses so never felt Sui was something I could live with. I could relate to your comment I’d gladly go back. I had a hysterectomy in 97. Then in 2006 incontinency returned and I had the ethicon tvt Oburator tape put in. I had zero problems or so I thought. It cured the incontinency, I had no idea the selling and inflammation in my muscle and joints were from the mesh. I found the mesh eroding into my vagina in 2015. I had to fight my insurance company to get to see a urogyno surgeon and he stated it was too dangerous to go in after the ‘anchors’ as he called them. All I know is feeling inside me the sharp bulging mesh piece all I could think was get this out of me now. Then more research from me I realized I should have fought harder to get to raz. Where I am now is I had the using your own tissue to create a sling surgery done last Monday. As the sling removal left me once again Iincontiment. I am going today to surgeon for visit as my bladder isn’t working. Just the thought of living with a catheter the rest of my life is terrifying me. I’ve always been one not embarrassed to discuss female issues. I always felt you never know who’s life you can touch or help by sharing. I pray my bladder comes back and if I get through all this with a better degree of health than how I am this minute I will shout from the rios of buildings if I have to, to get to anyone who will listen and hopefully learn what greed has oeroetuated on women’s bodies . I am still fortunate in that the mesh didn’t mesh into an organ or cut through my begins, as I met one woman who experienced those autrocities. It’s amazing to me that I haven’t related done if the maladies I’ve been experiencing to having mesh. After seeing dr’s and physical therapists on pains , constant Charlie horses down the entire leg, NOONE even mentioned mesh reactions? So thank you for your blog. I am one of thousands and I’m glad women are voicing out these situations. If I help one person with a decision to help from altering their life it will be a good thing. I reside in tx. But I lived in upstate ny for about 3 yrs.

    Like

  60. Hi Debbie. Sorry for the delayed response. I had surgery myself last month, and have not been keeping up with everything. Thank you so much for sharing all that. What an ordeal. =( Your story is similar to so many I have heard – yet, you are right about most doctors NOT making the association with mesh. It’s ridiculous. Unfortunately, many need further repairs/surgeries, even after mesh removal. Many have incontinence issues after removal and have to have the same. I was going to do that myself, but so far have not had to. I hope your last surgery is helping, and by now you are getting some relief. Please keep in touch. ❤

    Like

  61. I’m very proud of you for taking control of your health. My urethral sling symptoms aren’t nearly as bad as yours. However, reading this has shown me that I am making the right decision to have it removed the week after next. I had mine implanted when I had my robotic hysterectomy right after Christmas last year. The first week or two it seemed great. However, once I started moving around more, exercising a few weeks later and drinking more water, I became a leaky mess! I told my urologist this in a post op visit in February and he gave me some awful pills with horrible symptoms. He told me to give it a bit longer. I just saw him again last week and he told me to try another pill that would be gentler on my body. I finally said “Look, it hurts to have sex with my husband. It feels as though I have this stabbing pain the few times we have had intercourse.” Right then and there he told me that I didn’t have to say anything else. He said I should hear from his office soon to schedule the removal. I’m in the process right now of setting up the time and place. I’m just waiting to hear back from his office for a confirmation.

    Thank you for having this blog. I was told that only 8-10% of the recipients have issues of some kind. I’m having a hard time believing that. I think because urology and gynecology are just intimate matters people are too embarrassed for follow up care to such surgeries. Either that or they have unsympathetic doctors who intimidate their patients with their need to always be right.

    Hopefully, I’ll be fine. The main reason for my hysterectomy was due to my uterus being more than twice the normal size. Though it was big and completely round, the pathology report was clear of any condition or disease. I had it removed because my bladder had no room to function properly. (I also had three week long periods that were heavy and clotty every month for four and a half to five years.) My bladder filled up quickly and every time it did, I’d have horrible contractions. I had to get to the toilet pronto or I’d gush like a water fall.

    Like

    • Make sure mesh will not be put back in, too many times heard of doctors that say they can remove it, always ask questions, what will they replace the mesh with, When a doctor’s office said they put mesh back in, , I RESPONDED OVER MY DEAD BODY. also some that said they didn’t need the ultra sound, stay away from these , very few have knowledge of detecting mesh, and know every iota bit has to be gotten out, for infections and pain to stop. I hope you make it through. I have given up, too long waiting, for me. just lies and more lies, and cover up. God be with you. and those doctors not lying and at least are trying to help women, not the liars and frauds that don’t care. like the mesh pharm, they will lie and cover up just to make their $$$$$, as women have no choice but for the rest of their life , to be their rats, and no justice, , told their lives are not worth compensation, showing attorneys planned with pharm, companies to make sure some women were never to see justice , for lies and cruelty of medical and more. politicians even to the president received money from the pharm, companies, in campaign funds, for favors back, I SAW AND READ NAMES, SOME NOT FAMILIAR WITH, . all made money in billions. . still no answers and they know, even before 2009, how many women have died from infections and pain , nerve damage, other parts of their bodies mesh has gone into, we deserve to know, those that cannot get mesh removed. what next, with mesh implant , will we suffer. ????? again GOD BE WITH YOU, AND THE DOCTORS NOT LYING TRYING TO HELP WOMEN WITH MESH.

      Like

    • Please make sure your doctor has a lot of experience with removals. Removals can be a nightmare. I know this from experience. Dr. Raz in CA is the best, by most accounts and he is very experienced. He is worth traveling to, even to CA. I wish you the best of luck. At least your doctor acknowledged mesh was the issue, that is a plus.

      Liked by 1 person

      • Thank you for the reply. He’s not replacing it. He’s taking it out altogether. He wanted it in long enough to give it time to work. I admitted to him that it doesn’t feel as bad as it did for a while. There was significant pressure and discomfort when I saw him in February. I was in tears as I told him about it then. He knows I still leak a bit after urinating. He tried to resolve it with meds. I wasn’t going to try a second prescription. I am done, especially when it comes to the sexual pain. It feels like I have a cactus in my urethral area the very few times I’ve had intercourse. My last time was a few days before my most recent urologist appointment. I also sent him several messages between my last two visits about all of the pain and symptoms. I mentioned going to the bathroom up to two dozen times a day as I took that one pill daily as well. It was getting as bad as my absolute worst days when my bladder had no real estate before my surgery.

        I’m hoping that my hysterectomy resolved all or at least my biggest urinary issues. By removing my uterus my bladder should have room to function properly. I opted to have the procedure with it because I wasn’t sure if there was more to my problem or not. Again, I can’t believe that I’m the minority with these issues. There’s got to be more people suffering. I can’t compare my problems with yours. I feel horrible that you were hurt so bad that you’re still recovering.

        Thanks again for the advice. I’ll more than likely come back to read more about your experiences and how you resolved your medical issues. I wish you the very best in all that you do.

        Like

    • Hi Charity. Thank you so much for the nice comment, and kind words. I’m glad if anything you found in this blog was helpful.

      The other comments to you were valid concerns. Unfortunately, mesh is not easily removed and most doctors can not/will not remove it all. It is meant to be permanent, and that is why many of us, like myself, traveled far and went through a lot in order to get to a specialist that could remove it all. Maybe, if your mesh implant was still fairly recent, it will be easier for them to remove it. That would be best – and hopefully, in that case, your doc can remove it in it’s entirety. After a bit, the mesh… well “meshes” with tissues, etc – and that is why many doctors can’t remove it. Especially the “arms” or “anchors”. Most will not even try to remove those. They usually recommend a partial removal… or revision, saying that removing all the mesh is 1) too dangerous…. 2) not possible… and/or 3) not necessary. The experts at removing mesh, as well as myself, and many others who have had mesh problems – disagree. I wrote about it here: https://meshmenot.wordpress.com/2016/01/24/are-partial-mesh-removals-the-answer-to-mesh-complications/

      At any rate – I am glad you are getting yours removed. So, just ask a lot of questions… which it sounds like you are doing. This post also has some questions to ask, and good links at the end with more info: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/

      The other stat your doc mentioned, that only 8-10% have problems doesn’t sound right. I’ve seen studies that show as high as 30%. The FDA put out warnings stating complications are “not rare”. They later decided to concentrate on mesh for POP, but they definitely warned about mesh for SUI as well. Somehow, that always gets twisted around, though… and most docs will say mesh for SUI is fine. (https://meshmenot.wordpress.com/2015/01/06/mesh-for-sui-but-too-risky-for-pop/). There also are not really long-term studies – and many do not have problems until years later. Also, many implanting doctors go into denial mode, and will not admit/recognize that the problems are from the mesh (unless they can visibly see it eroding through someplace and there’s no denying it)… and so many do not report problems. Instead, women are sent on wild goose chases to a variety of doctors.

      It’s sad, really, the whole matter. And, that people do not get all the warnings and info upfront – especially when there is “no evidence that repairs with mesh have any clinical benefit over non-mesh repairs”. Meaning, they CAN fix these problems using your own tissue and no mesh. You may have to look a little harder for a doctor that can do it that way – but, they are out there. Unfortunately just about EVERY doc knows how to put the mesh IN, because it’s very easy for them to put it in. It’s getting it OUT if/when there’s a problem that is the issue.

      At any rate – you are far from alone. Are you or your mother on Facebook? There are support groups with many others dealing with mesh complications.

      Please try:

      The Women’s POP/SUI TVMesh Complications Support” group (Closed group):
      https://www.facebook.com/groups/317477065098820/

      or for general info in a PUBLIC/OPEN group, see:
      https://www.facebook.com/groups/meshproblems/

      Like

  62. OTHANK YOU DEB!

    Like

  63. Hi Deb,

    Elidah, Inc. is currently developing a non-invasive solution for stress urinary incontinence, called the Etude. Feel free to check out our website, as U.S. availability of our product will be coming very soon! http://www.etudedevice.com/

    Our other website, http://www.incontinenceinfo.org/, is an informational site about stress urinary incontinence and possible treatments. It is a great starting point when researching options! If anyone else has any questions our our Etude device or incontinenceinfo.org, don’t hesitate to ask me!

    Like

    • Hi Cay, Thanks for the info. I tried to check out the site – but, not much info there yet. I am all for alternative to treating SUI that do not involve surgery or medical devices, though. Looking forward to learning more as it becomes available. Thanks.

      Like

  64. I’m a 39 yrs old woman with 2 children however on our on and getting harder I feel like my surgery prolapse and colonectomy has left me exstreamly messed up and no one is listening I’ve been debilitated for almost 6 yrs now and I’m so scarred and afraid the answers won’t come my daughter is special needs and is only 7 she needs me more than ever and I’m a mess I have no advocates on my behalf no one understands the battle within and I cry daily at times I want to give up cause I’ve seen many doctors had MRI’s and catscans that have given little answers since surgery the only answers I get are u need more surgery’s to remove the whole colon and live w a bag or to live w the pain. That isn’t an option my pain and lack of being myself since had taken over I can’t even think straight the pelvic pain n pulling and hip pain n pulling goes further down the leg into my toes and all the way up the abdomen probably because the liproscopic surgery I had at the same time there’s an Intence pulling in my belly button and I spend everyday thinking I’m helping myself get somewhere by trying to release some muscel strain but it’s only making me feel twisted like he attached my spine where it is now tethered by scar tissue and I cnt move and they will not undo whatever they did to my prolapse that was then attached to my spine. Like you I had no idea what a major surgery I was electing to have I would have lived with the prolapse anyday over this I’m in NH if there’s anything u have read that can help me understand what is happening plz plz write to me let me know there’s hope for me cause lately it’s getting harder n harder to hold onto that thank you for speaking out and being a voice for us woman who have been mangeled and treated as ginipigs my surgery was done at the Layhee in Burlington Mass by a specialist Dr Peter Marcello who still refuses he did anything wrong and won’t see me or help me just a teaching hospital so who knows what really happened while I was under but this I know the progression of the after affects are unbearable and being alone in this is as well we get this one life I’ve already had to give up so many years I do not look the same or am able to enjoy the things I did in the past I’m a prisoner in this body and it doesn’t seem fair at all not to me not to my kids who depend on me

    Like

  65. I am 62 and had the mini arc sling procedure in 2012 for SUI. My urologist was highly recommended, and I was thrilled to find such a quick, easy fix for incontinence. I thought the tv commercials regarding lawsuits for transvaginal mesh was for older medical devices, and the problematic ones had surely been recalled. The procedure was successful, and so far I have had no side effects, but am terrified that I will in the future. I wish I had known at that time all the problems associated with mesh devices. It seems sometimes it takes years for problems to arise. I wish I could get mine removed, but with no current problems, I’m thinking no MD would touch me. I’m a nurse, so you would think I would know better. Is it possible that there are women that never experience a problem with mesh?

    Like

    • Mesh seems to work for many – so, unless you ARE having major complications, I would not think most docs would attempt to remove it. Removing it is very difficult, and can cause more problems. I do have two friends who had the same mesh I had put in them, before I did. They are still doing fine with it – and I sure hope their luck continues. If I were you, I would just stay on the lookout for problems, and IF you do start having problems, know that it could be associated, and try to get to one of the specialists then.

      Like

  66. Mesh news desk has some info. for Canadians. I believe they had some kind of petition to be able to go to the states for help. Since there wasn’t a doctor in Canada who felt comfortable removing the whole thing. Have you had a pudendal nerve block? Sitting problems are often related to that nerve. I am so sorry you’re suffering so.

    Like

  67. Hi Deb

    I had the mesh sling surgery 12/28/16. Since then the lower part of my back has been hurting. If I stand to long my back starts hurting from the bottom upwards. When walking wasn’t problem, now it is. I told both my gynecologist and my primary care doctor but to me they just dismiss that logic.They referred to me being overweight is the cause. I am going to pursue another doctor since i haven’t had this issue before the surgery.
    I had to have fibroids removed and had the surgical mesh on the same day.

    Like

  68. Hi Deb, I had my meshed removed a month ago by Dr. Flynn in Denver, Colorado,
    he is wonderful. He is the first doctor, who I felt, truly lustened and as a resultof the removal I am getting my life back! Almost immediately after surgery my burning and pain subsided, I am getting stonger everyday and happier as my depression is lifting..I tell everyone that will listen about the dangers of mesh and if they or someone they know are thinking about implanting mesh…please reconsider!. I lost the better part of 4 years of my life because of this mesh implant and therefore my kids and husband suffered also. And for what? THIS MESH DOES NOT BELONG IN HUMANS, IT IS POISON AND IT HAS TO BE TAKEN OFF THE MARKET!

    Like

  69. I to had mesh removal 6 wks ago in Tucson Az. Same exact problems as Deb. Dr Twiss has become an incredible surgeon at mesh removal. He has done over 300 in a period of about 4 years and has designed his own method which is a God send. He is now doing a study survey of his patients, me included,to prove that total removal is the only way to go.I too am realizing how depressed I was and how much time this has taken out of my life! What a difference! Ditto with the husband suffering too.

    Like

Trackbacks

  1. It’s NOT enough. We need help! – Mesh Me Not

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Appreciated Visits:

  • 148,422 hits
%d bloggers like this: