Any ladies had a TVT mesh sling fitte... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Any ladies had a TVT mesh sling fitted for stress incontinence?

viv112 profile image
14 Replies

Just wondering whether any ladies out there have had a mesh sling fitted as a bladder repair. I had my Johnson & Johnson's Gynecare Mesh fitted in 2003 and it was taken off the market this year. One of the safety concerns is that the chemicals in the material of the mesh might leach into the body and trigger or aggravate auto-immune problems. My health problems started shortly after it was fitted in 2003 but my APS wasn’t diagnosed until 2008. I would like to hear about any experiences –positive or negative.

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viv112
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14 Replies
MaryF profile image
MaryFAdministrator

No, not had this one done, but have heard that is is a pretty successful and life changing op for many, for the better. Mary F x

GinaD profile image
GinaD

Someday science wil have the various environmental triggers for various genotypes into autoimmunity nailed down. For now? We guess, we search for clues, we crave answers.

I grew up in the 60s and 70s and thought I knew everyrhing there was to know about illicit drugs. I was around some local teens who trailed this bizarre smell in their wake -- and did not find out until years later what I was smelling was methamphetamine! Which is a suspected super-bad-boy when it comes to triggering autoimmunity. That year of the weird smell was the same year I had my first stroke. Coincidence? Possible? Probable? -- pick one.

Good luck.

jadams profile image
jadams

I also had one of these inserted in 2007. I have my annual woman visit next week and that was something I was going to inquire about. I had a stroke last year and was DX with APS.

viv112 profile image
viv112 in reply to jadams

Thankyou for the replies. I had a Mirena coil fitted by the same consultant a year after the TVT and within a week I was admitted to hospital with what must have been symptoms caused by my body rejecting the coil. They stopped as soon as the coil was removed. I just hope that the medical profession has become more aware of the potential risks to our health caused by putting these devices in our bodies. The sling has cured my stress incontinence, but I have a constant feeling of inflammation in my bladder. When my urine is tested there are leukocytes (white blood cells). My GPs consider bladder discomfort in post menopausal women to be the result of low oestrogen and have prescribed me ovestin, and vagifem. Unfortunately my body doesn’t seem to like topical hormones either because I started with migraines a week into treatment!

iwantsimple profile image
iwantsimple

I had a mesh sling put in and my problems started immediately after my surgery.

Lavant profile image
Lavant in reply to iwantsimple

Wife had one put in on June 2016 and is incontinence all the time .Worse experience evet

TVTNO profile image
TVTNO

I wouldnt allow them to put this product in my worst enemy! Please visit our website tvtno.org My wife had this put in and from day one started having problems! We have started a nonprofit organization and assist many many women worldwide who are suffering due to this product. We are finding women are coming down with MANY autoimmune diseases cancer the product erodes out the vagina, Some have had bladder perforations and last I heard at-least 18 deaths confirmed! We also have a Facebook group search on facebook for tvtno.org Do your research I think there are over 100,000 lawsuits and near 10,000 adverse affect reports filed with the FDA. It is beyond me why they are still using these products! Also we are finding many women being told by their doctors they only use the safe mesh.....there is no safe mesh! Anyone with questions can contact me directly at david@tvtno.org or through our webpage. Also this product is put in as a permanent device and very very few doctors can take it out and its around $100,000 to start the removal process! Please do your research for yourself!

nappyrash profile image
nappyrash

I was implanted with TVT mesh in 2004 it changed my life dramatically and I could no longer do things due to vaginal infections and flu symptoms. I have had two badge up removals which have made things worse and the last surgeon has disabled me. I still have mesh in me and I am finding that there is really no help out there for me, I would appreciate any help or information from anyone out there. I hope that it hasn't been like this for you.

September18 profile image
September18

Hello,i am a mesh sufferer and i am wondering if any of you know about proper 3 and 4 D scans(trans labial) plus are they availible on the NHS and can you get them here in Britain?

It has been 3anhalf years of hell, sheer torment. I plucked up courage to seek a surgeon to remove sharp spiky piece of mesh which was left from partial removal back in 2011,so sept 13 went for surgery,to my horror 9wks post op i discovered mesh still in same place plus alot of the left wall of my vagina cut away,and very leaky,she did ureatha-plasty which i know proberly was not necessary.Also my bowel is a lot weaker now,Any information would be appreciated i will not let any one operate on me again without them not knowing where the muck is,the surgeon said it was not her fault that it was not where it should be although before on my pre-assessment appointment she said she could remove it no problem because she could feel it,its so depressing when you trust these surgeons and they disfigure you futher, along with more pain and worse incontinence problems,rant over,thanks for reading,

Mesh sufferer,xx

Spikeysmith profile image
Spikeysmith in reply to September18

Please go on slingthemesh on fb they are a support group of women with issues after tvt tapes and tvto/pop.....i was list with who i needed to see and now i know who the drs are who can help....great info on the fb sight

Lure2 profile image
Lure2

Do you have APS (Hughes syndrome)? Who diagnosed you?

Best wishes from Kerstin in Stockholm

viv112 profile image
viv112

Hi all,

It's now 11 years since I was fitted with my TVT and I guess that's long enough to forget how miserable it was to wear pads all the time because of the leaking. It certainly has cured my stress incontinence. I went back to the gynae dept last year for a check up and everything is fine.

I don't want other people to fear or avoid the TVT, because it has worked for me.

Its just that I have spent the last 5 years since my diagnosis with APS wondering why my body developed this autoimmune condition. Some people blame it on dental work, some people link it to Lyme disease. I know my body didn't like the Mirena coil but it was taken out and I recovered. I have discussed my TVT with my GP and the gynae consultant, and I feel sufficiently reassured that it was not a trigger for the APS.

Spikeysmith profile image
Spikeysmith in reply to viv112

Please join fb group called Slingthemesh i really think you would benefit....i had failed tvt and have perminant problems

Spikeysmith profile image
Spikeysmith

Look on fb and look up a group called slingthemesh they are full of info and support

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