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

2014-02-26 small update…

I haven’t been posting much again.  Sorry about that  As usual, things have been a bit crazy.
To make a long story short – I had more surgery a few weeks ago.  A hip replacement.  (ugh)  Prior to that I was working, & going to docs, & being busy freaking out about needing more surgery…   let alone another implant… let alone another implant for a procedure that is also all over the TV lawyer ads for lawsuits just like mesh!   It was very much like dejaPOO (I’ve heard all this crap before). 

After my (complete) TOT mesh removal surgery with Dr. Raz in Jan 2013, I got a lot better.   The recovery period was tough, but right off the bat I wasn’t in pain 24/7  anymore (huge plus!).  I slowly started improving and could sit normal again without feeling like something was stabbing into my groin.  I was able to get off all meds, and go back to work.  BUT,  my limp just wouldn’t go away, and then it started to get even worse.   I kept hoping it just needed more time… more PT… and was trying everything.  I did not want more surgery…  but, last fall  I had more x-rays done and they showed that I had NO cartilage left at all in my hip joint, the same side where all my pain and FBR (foreign body reaction) was after the TOT mesh implant.  They recommended a hip replacement.   I wasn’t thrilled… but, I decided it was that or look into a scooter because I could hardly walk, and I wasn’t ready for a scooter.   I made sure to not get a metal on metal hip implant, and tried to really do my homework, but still…  Despite my fears, I found the best doctor I could, and booked the surgery.

To make things much worse, my mother passed away unexpectedly about a week before my scheduled surgery.  Suddenly, my worries about needing more surgery, money,  my job, etc., didn’t seem to matter so much.    It’s funny how things all change perspective when we lose someone we love.  I’m still coming to terms with the fact that she is gone while I work on recuperating from my last surgery and trying to walk again.   To say that I miss her, does not begin to cover how I feel…

I am now just over 2 weeks post op from hip replacement.  I’m still sore in the incision and muscles area.  It’s difficult to move my leg because they cut your muscles & all. I need to use a walker to walk & a strap to lift my own leg into bed etc.  So right now, it doesn’t feel so good… But the pain is different than before & they are telling me I’m doing very well for where I’m at.   I am doing in home PT for now & have high hopes that in a few more weeks I’ll be doing much better.

I sincerely hope that now that the mesh is out… AND my hip joint is replaced – that I will be able to get back to walking without a crutch or cane, and without pain again soon.  It would be nice to be able to get around, and start living my life again.  I have every intention of doing so.

Peace out,
~Deb

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6 Responses »

  1. My heart goes out to you – loosing your mother in and of itself is horribly devastating. Prayers that you have great support as I’m sure you need it.
    I just want to thank you for taking the time to write. I’m sure there are thousands of mesh sufferes like me that search for info and finding sites like yours that aren’t lawyers is helpful to say the least.
    I too had removal by DR Raz last June which gave me back my vagina! 😉 But have lots of new autoimmune disease- hashimotos, fibromyalgia etc – I have recently started having pain in my butt cheek/leg (and hips- but a different kind of pain there) that is nagging no matter what position.
    Should I tell DR Raz or see a diff kind of doc? I am scheduled for Dr Raz to fix my leaking bladder in mid June. Did he see the mesh on your hipbone on the Translabial ultrasound? I live only 30 min from UCLA so I wish there was a way to reach out to me shies and offer them to stay with me to help costs. Any ideas how to do that?
    Hope you are out hiking- a good friend with 2 titanium hips hikes 3 days a week with our group! And he’s in his 60’s! So prayers you are the same.
    Marilyn

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  2. Thank you, socalsunfish. Much appreciated. If I were you, I would definitely talk to Dr. Raz at your appointment and see what he recommends. He can maybe give you some information to tell the other doctor, or suggest who, or what kind of doctor would be best.

    The translabial ultrasound gave a good pic of where the mesh was, but I don’t know that it actually showed it adhered to my pelvic bone. He told me after the surgery how he had to scrape it off of my pelvis.

    Are you in any of the support groups for “meshies”? There are a lot of women in those groups making the trek to UCLA all the time. I’m sure some could really use some assistance by way of lodging if at all possible! That would actually be really really awesome if you could do that.

    The main groups I would check with are:

    – TVT-NO! Mesh Survivors(Closed Group)
    (https://www.facebook.com/groups/158270334301550/)

    – Fighters and survivors of hernia & all vaginal pelvic surgical mesh (Closed Group)
    (https://www.facebook.com/groups/111893665491196/)

    – Mesh Medical Device News Desk (Open Group)
    (https://www.facebook.com/groups/142368339207055/)

    As for my hip? I’m doing pretty well, all things considered, thanks! I’m about to post an update on that soon. =)

    Deb

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  3. Hi Deb, thanks so much for your blog with all its good info, it’s been helpful as I’m looking at my options for SUI and prolapse. Been dealing with it for over 20 years, had PT twice (only slight improvement), have used a pessary, waited for a long time for all the mesh issues to get sorted out before thinking of surgery…. and guess what, they are still not sorted out. Try doing valid clinical trials before taking this stuff to market! I did find a urogynecologist who, while she doesn’t do non-mesh SUI repairs herself, said she could have someone else come in to do one of the older non-mesh SUI operations, whichever one I was interested in, and she could do the other repairs. Or I could keep using the pessary— took six fittings to find one that works for me, but this one does. I hope you have recovered with your new hip and things are much better for you now.

    Liked by 1 person

  4. I had mesh removal 2014. I I’m only 47 years old. I found out today that I need to have both hips replaced. One of my diagnosis is avascular necrosis. Loss blood supply to the Bone which causes the joint to die.

    mesh victims needing hip replacement is this common?

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    • Kathleen. =( I’m so sorry. I’m 50… and, I have had both hips replaced now myself. I never had any problems with hips or walking before mesh sling was put in. Within a few months after, I could barely walk. I also had full mesh removal – which, you may want to consider as well if you haven’t already. For me, full mesh removal was a huge plus to get the mesh out… even though I still needed the hip replacements.

      I am not sure just how common the hip replacements are as a complication of mesh – but, I am hearing of more and more in the support groups that have needed them. It seems even more women wind up with leg/groin pain due to nerve damage, rather than the joint damage. I think it is all related, but most doctors will not blame mesh for anything. The TOT slings or TVT-O slings are especially known for causing groin/hip/leg pain. Is that what you had?

      If you are looking infor mesh removal – please try to get to one of the few experts. See:
      https://www.facebook.com/groups/317477065098820/

      You can try asking around in some of the larger support groups, like:
      – Mesh Problems (Open/Public): https://www.facebook.com/groups/meshproblems
      – Women’s POP/SUI TVMesh Complications Support (Closed Group): https://www.facebook.com/groups/317477065098820/

      (More resources listed at the footer of the blog.)

      Also, check out this pic… =( :

      Hang in there. I will say, that I am now doing so much better than before. ❤

      Like

    • Thank you so much for your helpful response!

      Like

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