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

Walk a Mile in Mesh Shoes

12814510_750221908445689_7134316678705970910_nBefore I had full mesh removal, I used used to say that it felt like I had a steak knife in my groin… Throbbing and hurting 24/7, but causing even more pain when I moved, walked or sat normally. Anything that put any pressure in that area caused a stabbing pain, sometimes a jolt of pain that would stop me in my tracks. I used to always sit leaning on the one side. And I walked with a cane or a crutch. Causing further pain in my back, etc.  Pain would start by my obturator muscle/hip/groin area, &  go all the way down my leg. The pathology report from my TOT mesh sling removal surgery confirmed that the mesh was causing FBR, inflammation, muscle damage/spasms… It had eroded through my obturator muscle and abductor muscles, and attached to my pelvic bone where Dr Raz scraped it off.
Constant pain, & not being able to walk (even with pain meds & crutch) will change your life dramatically, and quickly. Trust me.

Still, I was LUCKY.

Lucky to not have vaginal mesh  erosion, probably the most common  complications of tvt mesh.  This is when the mesh works its way through the vaginal wall and can be physically seen or felt there. This did make it harder to get diagnosed. Apparently many doctors only recognize mesh as being a problem if/when they can actually see it coming through your vaginal wall. Of course, at that point there’s also no denying it either. (Yup. That’s mesh, alright!)   Still, even once mesh erosion is confirmed many doctors seem to downplay this and act as if it’s not that big of a deal.  ? Really? Having  something that has hardened into a window screen like consistency, literally cutting through your most private parts is “no big deal”?  I think NOT.

I was also lucky that I was able to get to one of the few specialists that could remove all my mesh in one surgery – including the “arms” in my groin that most docs say are too dangerous to remove.  Most doctors only do a revision, or remove just a piece of the extruded  mesh. As a consequence,  most windup having surgery after surgery after surgery, to remove more mesh as it continues to erode and cause further problems.

Many have mesh eroding/cutting thru their urethra, bladder, nerves, and then deal with all the pain associated with that. Constant inflammation,  infections, UTI”s, excruciating nerve damage, autoimmune problems, difficulty voiding, continued incontinence – PAIN.  Pain that some have described as feeling like barbed wire  being inside of their pelvic area.  Can you imagine how that feels? Not to mention all the EMOTIONAL pain, & financial burden this causes, not only them, but their loved ones as well. Individual lives & families are being broken down & torn apart.

What about you?
If you are suffering from complications due to surgical mesh, how would you describe your pain?  Let’s help others realize the risks of using surgical mesh are NOT worth it.

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(Also see comments to this Pubic Post on MeshMeNot’s Facebook Page at: https://www.facebook.com/MeshMeNot/photos/a.313603215440896.1073741831.299505896850628/750221908445689)


==============Support Groups================

Perhaps even more helpful than articles, is talking to a variety of others who are suffering from mesh complications, and are in various stages of treatment.   Three of the larger support groups I found helpful are: 

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4 Responses »

  1. I just found out that I have surgical mesh pierced through the vaginal wall, though I’ve had discomfort and pain for well over a year and half.
    I had a hysterectomy and bladder sling with what my doctor told me was the gold standard of meshes and not associated with the mesh envolved with all the law suits.
    At first I felt like there was something in my vagina, I described it as putting a tampon in but not high enough up and as a result you could feel it.
    It was almost constant, sitting the wrong way made the feeling worse and more uncomfortable.
    I thought maybe I had not fully heeled from surgery or maybe scar tissue had developed.
    Eventually the pain got worse and felt like things poking me or stabbing me and I started developing a strong Oder.
    Eventual the Oder was so strong I decided there was something wrong.
    I went to my regular Gyno and they said there was something there they could see but wanted me to go to the doctor who did the surgery.
    They also did cultures and determined I had a bacterial infection and put me on several different meds.
    I went to the surgeon and he said there was a small section of the mesh that came through and this happens in small percentage of cases.
    At present he wants to do surgery to cut open and cut back the mesh and stitch back closed.
    He said it would be a simple procedure but I would be put under for it.
    But as I am doing more research on this issue I am more concerned and worried about this and wondering if I’m doing the right thing and maybe should have entire thing removed especially since it never worked and I actually feel I have more incontenance than I had before.
    I’m hoping to find some support and advice and hear others stories that may help direct me in the right direction.
    Thank you

    Like

  2. Sandra,

    Thank you for commenting here… I’m sorry you are going through this, but I can assure you that your problem of mesh erosion is far from rare (as most doctors say/believe). I am so glad you are asking questions and researching this. Personally, I believe partial removals (which is most certainly what your doctor is planning on doing) only lead to more problems, and more partial removal surgeries. Still, partial removals are all most doctors offer as treatment, because that is all they know how to do. Mesh removal is complicated, since it’s not meant to be removed. But, it is possible if you go to one of the doctors that has experience with FULL removals and does them as the norm, rather than partial removals. Please see this other post on the subject: https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/

    Unfortunately, there are still not many doctors doing full removals… but, more are starting to step up. See this article for some info, questions to ask, and more links to other resources at the end of it: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/

    Also, of course you do not just have to take my word for it. Please keep asking around and learning. If you are on Facebook – there are support groups FULL of women having similar issues (links above). Get their advice…. and if at all possible, go to one of the few doctors that specialize in mesh complications – at least for a consult – before agreeing to a partial removal wit your doc.

    Take care and hang in there. ❤
    Deb

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  3. I too had a bladder sling in Oct 2015 I never healed kept telling the Dr I was in sever pain 4 months later , finally he checked me and said the mesh was coming through my vaginal wall . He tried to cut it out on the table in his office, I almost fell off the table & started shaking & crying from the sever pain. So he schedualed me for surgery 03/22/16, I’m having so much nerve pain in my hip , leg & foot on my left side. The pain in my left side is off the charts. I hoble like an 90 year old lady, I hurt when walking & laying down. And I’m leaking urine all over again. The more I walk it try to carry anything the worst I keep & hurt. I’m so sad. Now I’m going to a specialist in Stanford Ca for more surgeries , it’s just so depressing especially after my Dr who did the surgeries is Angry at me now because I’m m it feeling anybetter the spcialist has said he didnt do it correctly ect… & I have not treated him bad at all , I’m just teing to get better.

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    • Josie,

      I’m so sorry you are going through all this. Terrible. =( So many doctors that still use mesh like to blame the implanting doctor for any problems. But, the truth is that mesh is made of polypropylene… a plastic material that will harden into a window-screen like consistency once in the human body. Once it hardens, it can “erode” or cut into surrounding tissue… nerves… muscles… organs… etc. This can happen REGARDLESS of how it is placed.

      Please be careful going for more surgeries unless you are going to one of the few experts that are experienced with mesh complications and FULL removals. Unfortunately, there are still not many doctors doing full removals… but, more are starting to step up. See this article for some info, questions to ask, and more links to other resources at the end of it: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/

      Thanks for sharing. I hope more will research options BEFORE getting mesh and think twice if/when they see posts like yours. Hang in there. ❤

      Deb

      Like

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