By Kath Sansom
A bladder sling is used to treat urinary incontinence. Incontinence is something many women who have birthed children suffer from, as the muscles at the bladder neck have lost their strength and supports, causing leakage. The sling is made from surgical mesh usually inserted through one vaginal and two abdominal incisions. This is one mother’s story of having this surgery, and how for her and many others, it has led to ongoing health and pain issues. This is not intended as medical advice but the sharing of one woman’s experience.
I was a healthy and happy mum of two teenagers, but had a niggling problem of suffering life’s little leaks when I exercised. It wasn’t the end of the world but when I heard about a simple 20 minute day-case operation to fix it, I jumped at the chance. I was told it was the gold standard treatment with minimal risks and that I would be healed within a week.
The decision to go under the knife was to change the course of my life. Forever.
Two days after the mesh TVT bladder sling was inserted, my nose started dripping. I thought nothing of it, but then leg pains intensified and with each step I became more and more scared.
How on earth had I gone from a super-fit mum who did high board diving, boxing, swimming and cycling, to now struggling to potter around the house or walk my dog round the block?
Three weeks after the sling was put in I Googled “TVT gone wrong” and sat shocked at my computer as I saw I was not alone. I was one of thousands of women around the world suffering severe mesh complications.
The pain put me on nerve blockers and Tramadol and left me with sleepless nights of regret – if only I could turn back the clock. It was the worst decision of my life.
The leg pains were like intense toothache. It felt like somebody had punched the base of my feet and at times like my legs and ankles were being lashed with barbed wire. I had burning pains in my groin and private parts, severe stomach acid reflux and it hurt to sit for too long.
I thought it was some body-friendly sling and had no idea it was polypropylene plastic. With hindsight I should have done my research but I trusted the medical profession to get it right.
So to channel my anger I set up Sling the Mesh Facebook campaign to reach out to other women who have also suffered and whose surgeons were ignoring their pain or blaming it on other issues.
In less than 18 months the group has more than 1,000 members from across the world. All suffering a varying degree of pain, some struggling to walk, others with severe water infections, some self-catheterising for life, some have lost sex lives due to burning pains in their vagina or where the mesh has cut through the vaginal walls.
Some are in wheelchairs, others shuffle using sticks, and some have legs that shake due to nerve damage from the harsh plastic mesh.
Many suffering allergic reactions. Many have depression – they went in to improve the quality of life so they no longer wet themselves – but now their lives have changed beyond recognition. And worse, many GPs surgeons or surgeons have no clue how to help them.
For all of us our quality of life has been compromised to some degree – some worse than others.
I had my mesh removed in corrective surgery with one of only a handful of surgeons in the world capable of removing this stuff – Natalia Price in Oxford in October 2015 – seven months after it was first put in. The pain has pretty much subsided and I am off all the medication which I relied on.
However I will never go back to what I was.
I can now no longer put any impact on my legs – so activities like running, skipping and cycling (a real passion of mine) are gone, forever. I also find if I overstretch my legs in activities like yoga, which I had enjoyed for 25 years, then the leg pain returns. Kneeling down or doing squats also sets off the leg pain.
Because I am so determined I still go boxing but make sure I don’t bounce on my legs in any way. I swim and go on long dog walks – but every day I am mindful of all of my movements to make sure I do not do anything that could trigger the horrific leg pain.
Every day I either talk to women on the phone, by email or Facebook, counselling them on how best to fix the problem they now find themselves with.
Every operation has risks – but these are unacceptable risks and ones which none of us are properly informed about. I highly recommend anybody considering a mesh sling fix to thoroughly do your research and know exactly what you could be signing yourself up for.
It could just change your life. But not for the better.
I am a 49 year old single parent to two teenage girls (19 and 14) . My youngest was 9lb 11oz, so not only was she a big baby but I also suffered with pubis symphis dysfunction and was on crutches for the last couple of months of the pregnancy – which may have contributed to weakened pelvic floor muscles. I live in Cambridgeshire, UK. I have been campaigning to raise awareness among mums since June 2015 through my Sling the Mesh Facebook and Twitter pages, and my website.
Brilliant story Kath love Dianne all the way from Australia X a fellow tvt mesh survivor xxx
Thank you for sharing and reaching out to help others. We need to hear that we are not alone and complications are not rare.
Your support group has picked me up when I’ve been at my absolute lowest. I’m so angry that mesh is still being used, when it’s clear there’s a serious problem with the product/procedure. A trans labial scan shows that the tvt mesh in my body is clearly twisted, the pain and misery has blighted my life for year’s.
What saddens me is the lack of understanding of the severe side effects created by this procedure. Women adversely affected seem to be doing more to highlight the long term effects than the medics themselves.
I know the personal battle that I’m fighting to get this mesh removed. I’ve suffered for many year’s now and I’m sure there are many more women out there, that won’t even make the connection that their ill health is connected to surgery they’ve had.
Too many lives have been ruined by mesh and research into the long term effects needs to be carried out and made public.
Thanks for sharing Kath. The word needs to get out that many women and also men (hernia mesh) do suffer terribly from this petroleum based plastic being implanted into their bodies. What suits one person does not automatically suit another. It can never be a good thing and I wish my surgeon had told me about all the risks but he didn’t and 12 years later I am still stiff, sore and now have fibromyalgia amongst other things. There are more natural alternatives to mesh which but unfortunately they take more skill and time and are more expensive. Surgeons are losing the expertise of the old ways and replacing it with these quick fixes which have never been studied long term to see effects on the body years later. Problem also is that this is meant to be a permanent implant and as you say who can you go to for help? I live in Northern Ireland and have no where to go to and I just feel like I am banging my head against a brick wall.
Kath, I am so sad to read about this! Have you seen a women’s health physical therapist? I meet so many moms here who need help but who haven’t ever heard of women’s health physical therapy – it can really change your life.
Hi my name is Portia I’ve had bladder mesh since 2010. My life is filled with this terrible pain every waking moment. The mesh has ruined my life. I’m considering having it removed I’m scared to death. I heard it’s a Long drawer out multiple of surgeries. I’ve done been through so much. Should I have thr surgery? Mrs Portia Roberson
In the USA, there are now over 100,000 lawsuits filed against mesh manufacturers by women just like Kath who used to be young, healthy, and fit – and after a simple mesh sling operation, were disabled and crippled, many permanently. Professional medical organizations like AUGS and AUA advise doctors to tell their patients that these mesh complications are only from the mesh kits used for pelvic organ prolapse. These organizations claim that mesh slings for incontinence (also known as TVT, TOT, TVT-O, Midurethral slings, Transvaginal Tape, Bladder slings, SUI slings) are perfectly safe. The truth is, the vast majority of the lawsuits in the USA against mesh are relating to these SUI slings for incontinence – the same ones that AUGS and AUA claim are perfectly safe. Mesh is polypropylene – plastic. It does not belong in the human body. It leaches toxic chemicals, creates a chronic inflammatory foreign body response that can worsen or lead to autoimmune conditions. It hardens and shrinks once inside the body. Imagine, having a piece of plastic permanently implanted under your urethra – only to have it harden and shrink and cut through your tender urethral and vaginal areas. And PERMANENT is the key word here. Since 10% or more of women will experience mesh erosion (the mesh wears through your vagina, through the skin, like a giant infected splinter) one would think that there would be a plan for how to remove this implant when needed. But that was not part of the design. Mesh slings were designed to be permanent. They “mesh” with your nerves and tissue. So if you’re one of the 10%+ of women who need it out – you’re out of luck. A select few surgeons worldwide can attempt to fully remove it – but with no guarantees. Most surgeons will just snip off the part that erodes through your vagina, sew skin over the remainder, and wait for it to erode yet again. Many mesh victims have had 20 or more surgeries to try to locate and remove all of the plastic shrapnel. And most of us, myself included, will never be the same again. I was like Kath – young, healthy, fit, active mum who just simply wanted to stop leaking when she sneezed/coughed. None of us would have ever agreed to this surgery had we been properly informed of the potential devastating, permanent, life-altering consequences.
Is there another procedure that is safe to help with incontinence?
This practice is totally irresponsible and needs to be stopped immediately. It looks like it will take lawsuits to do this. Good work Kath. Keep up the campaign until this horrible surgery is stopped.
Tvt slings south africa
We in south africa also seek help for failures
Tvt sling failures and complications are there any other woman from south africa experiencing complications?
Good day Jolly
I had mine done 7 years ago. I am so scared to even go back. But I have endless problems. I’m constantly in pain.
It is now 9 years later and i am still.suffering badly.i still suffer from severe bladder infections and severe leg pains
I spend a lot of time in bed
I just had mine done and my left leg hurts non stop I see my dr next week . Today I feel depressed . After reading your post now I am worried .
Are there any support groups in cape town south africa as i feel helpless and alone.i have spent thousands of rands running around from one specialist to another trying to get some help.
I am also from south africa had a tvt sling.
Too many problems to mention and no drs to help there is a dr from th UK that is currently in South Africa that assist with these complications.
Please send me your e mail address
Thanks
I just had the tvt sling 1 week ago and my left leg hurts non stop . I called my dr office and they said it should go away in a couple of weeks . Lots of pain in the leg and inner thigh . I hope I have better luck than the post.
please contact mezh dlings south africa
Tvt slings south africa, any body with severe complications?
Hi Marie
I have lymphedema as a result of the TVT. My legs swell to epic proportions and at times I cannot even walk.
Please help me. I have been so ill for over a year. Had tvt surgery in late 2011!! Have experienced nausea diarrhea for I year of dizziness lack of appetite lost 50+ lbs had to leave my job that I adore as a nurse tech in an elementary school that I love close to retirement but left penniless. My oldest son spent his own hard money (50,000) to send me to a retreat center for 20 days. Still feel the same with the symptoms only getting worse.
I am proactive in trying to figure where this horrible situation occurred and it occurred to me what is the one area that has not been delved in to. I have been MRI’d needled in back had ear testing so some very difficult scanned had extensive eye examinations went to hematologist with multiple blood extractions physical therapy and the list never ends. This remains one of the most daunting experiences I have ever experienced. The worst is I have a new grandson and missing a lot of his first year of life and my 3 grown kids who are perplexed and agitated. Someone please send me some words of wisdom and comfort. Love Ruthie
Oh Ruth that sound truly awful and a huge challenge. We hope you find some relief soon. Perhaps search out some online support groups to find out what else you might try? Best wishes.
Mari south africa dated 11 dec.2017 i have severe complications .is there help out there?
https://www.facebook.com/groups/meshslingssouthafrica/
I had a TVT mesh put in when my Dr recommended it be put in during my hysterectomy in 2006 because I would need it later on, I told him I did not leak urine when I sneezed or laughed,but he insisted I get one. So trusting him I agreed. Now I have no pelvic floor, it has been destroyed by the mesh. I have to hold my perineum up and use an enema to have a bowel movemet. Now J&J lawyers say they need you to have a revision or mesh removal to get any kind of settlement in court. Funny, how do you show something that has been eaten up and destroyed inside you. I just wish they, whoever they are, had to take laxatives and enemas, then hold their vaginal area or if a man hold the area in front of their rectum and behind their penis and scrotum, every time they have to POOP. And all this because I trusted a certain Doctor in Maryville, IL .
Ladies, i’m from Canada (Quebec) and I had a TVT mesh put in on November 3 of 2017 and from the moment the aesthetic started to subside after the operation, i had excruciating pain in my leg. Doctors told me that they had never witnessed that in their 20 year career and tossed it to it being a completely unrelated issue. I was about 4 weeks with not being able to walk at all, i had even rented a wheel chair. After approximately 6 weeks, the pain did subside but i am now left with approximately 30 of continuous walking a day before until it gets too painful. I too did this operation to be more comfortable when active as i did boxing, running and hiking as some activity. all that now is gone. For 8 months now i’ve been to all kinds of specialist that my urologist has been sending me too (physio, ostheo, accupuncture, neurologist, orthopedist) and no one can figure this out. Of course not being a doctor and since i hadn’t googled TVT, as for me the doctor had told me it was kind of a bladder lift technique and in hindsight i should have asked for clarification. It is only when 3 weeks ago when i asked what technic exactly had he used that he told be it was TVT and has now referred me to another top urologist here in Quebec who has perform many operation on women in my situation. I was lucky that i got to see him quickly and within minutes he found that the ”pins” were sticking out and that i need to have these taken out urgently. something that my initial urologist would have notice had he examined me which he didn’t. Although this needs to get done urgently, here in Quebec, Canada, it’s going to take a few weeks. He did promise that it would be done by the end of August. I am crossing my fingers that once this is done, i am back to normal or sad to say i would settle right now to being able to walk more than half an hour a day. Is there anyone in Canada going trough something similar?
Hi. Had TVT procedure done on Jul 12, 2018. Experiencing left groin pain including my leg. I too can not walk much before pain begins. I have a pinching, elastic band feeling on the same side. Dr ordered a urgent ultrasound which i just had today. Im very discouraged and dint know what to expect or do at this point. Not sure what Dr will say but feel at his mercy. Just want to feel better, no pain, not tiered.
I had my surgery back in 2012 worst day of my life. What was supposed to be easy was not. 5 surgeries later I can pee but still wear liners to make sure I don’t wet my clothes. Use the bathroom every hour so I don’t wet my clothes. Sex life is totally different and even though my dr removed the mesh I feel sometimes like there might be some still in there because I hurt sometimes where the sling was.
I need to know Margie where you live. In the USA.? Its been 3 months since my surgery. I’m going in to ask to have it taken out. My doctor resides in MN.
I’m in pain, depressed and I’m not eat solid foods anymore because my intestents hurt so much. I can’t sit and sleep. I could go on and on……
I had my surgery back in 2003. Got ecoli infection from it st. Am still on antibiotics 15 years later and will be for the rest of my life. Still have discomfort. Was sent home with a catheter. Was back and forward to hospital for weeks. Was never the same after the operation.
Hi I’m Julie I had mesh bladder surgery in 2010 when I was just 40 yrs old I have been having severe pains on my left side groin area for some time now I also have severe pain in my right leg and heel n foot so that it’s hard to walk I’ve also had many many urinary n kidney infections as I have also had pneumonia I also have severe headaches I don’t know if all these symptoms r related to my mesh surgery but it has been a nightmare complaining to my family about it n enduring these symptoms I would like to hear if any other ladies have had the same or similar stories thanks
i have had a tvt 2006 it failed then again in 2009 i had a bladder injury during a vaginal mesh procedure later on that same year another mesh done in 20 10 i had a sling done last year i was realy ill it felt like some one had a razor blade i was in agony so i called the ambulance was rushed to a and e they could not examine me as i was swollen and it hurt i had to wait from october last year to march this year w here i went under anaethesia they found a bladder stone 1 to 2 cm in size he put in the letter i got that there was a blue discoloration r elated to the base of the stone witch could be mesh exsposure related to previous tvts . it has been several months and i am still waiting for the op its been confirmed it will be early next year before i have it done . and i am still in agony i have been given morphine for the pain
Hello everyone, I’m 34 years old 2 kids , i just had a TVT surgery on July 22/2019 since then my life has change .. pain is been my best friend since that day, i feel like an old person always complaining about legs pain stomach pain and skin rash , I don’t know what to do !
Hello Everyone
I had a TVT tape procedure in 2010 and a year ago I ended up having a cystoscope after severe bleeding from the bladder that would not stop. I had been treated for UTI’s for approximately 2 years prior. The infection would not go away after several antibiotic courses. In the cystoscope it was discovered that the TVT tape had cut through the urethra. After seeing specialist in Malaysia, were i’m currently living, I was referred to a Professor in Singapore and Vietnam. It became apparent no one wanted to attempt the surgery because reconstruction of the urethra had severe complications. Most likely the urethra would narrow or collapse causing the kidneys to stop functioning, followed by further organ failure. I am lucky enough to work for an international company and because I travel extensively my insurance covered my surgery in another country. I was finally seen by Prof Chris Maher in Brisbane Australia. He was willing to attempt the surgery and also felt confident it would be a success. It was, and I am thankful to finally not have bleeding and infection or painful intercourse. Which seems to be the most common side effects of mesh or tape. However I was warned that I may suffer from stress incontinence. I never imagined how bad it would be and I will be heading for a second surgery to try and correct this. I have been warned that it may not be a success due to the severity of the damage to the urethra. I have been a very active person for many years and the thought of not being able to be active scares me. There are countries still using the TVT tape or mesh procedures without warning about the effects, mine included. Because of the uniqueness of my surgery I have become a medical case study but what I would prefer if we could educate enough women to ensure theses procedures are stopped completely. My side effects are far worse now than when I went for the TVT procedure and knowing this I may have made a better informed decision. Knowledge is power and in this case it could have saved me from unnecessary or life threatening surgeries.
Hi. Had my OP in 2009 and this year a lump appeared on my left side. It grew until it popped. I now have a huge infection. Gynae says my body is rejecting the sling. This wound is open waiting to see the urologist in a few days. I live in George Western Cape and my real concern is that I moved here a couple of months ago and reading everyone’s story I’m worried that I’m seeing g a urologist I dont even know. Is there a really good Urologist in SA?
In 2009 I had a hysterectomy and surgery for a bladder issue always filling full, unable to empty completely. My surgeon did not give me any details as to how the bladder was going to be repaired I was only 42 years old at the time and had severe endometriosis and was bleeding heavily all the time that was my main concern. In 2011 I got a new gynecologist for I was having a difficult time with being thrown into menapause. My new gynecologist told me that my extreme pain in my legs was due to low vitamin D levels and the need for more B6 and B12 she also was the head physician of women’s health so I figured she knew best. This doctor never mentioned anything about the possibility of a mesh issue. I didn’t even know that mesh was used to fix my bladder UNTIL, this past week I saw another Dr. due to extreme vaginal pain, swelling and bleeding and infection. Upon examination this 3rd gynecologist said that there was blue strings/mesh coming thru my vaginal walls. 10 years mind you and I just found out and now it all makes sense. I’m scared to death worried about what this has done to my body and the fact that I had absolutely no idea what the surgeon used as materials to make repairs until I got my medical records this week as well. TVT she didn’t even list a brand. Repair surgery I’m sure of it rectum issues as well for starters, any compensation I doubt it…..it’s been 10 years. Are these doctors just covering up for each other – who knows! Any help suggestions would be greatly appreciated. I’m in Ohio.
I had tvt op in 2009. First 2 years fine. Then i started to lose control of bowel movement. I have lost the ability to prevent movement when i need to. I never linked this to the tvt until recently. I also started having intermittent groin pain which now is permanent. I also suffer from very painful bladder attacks and fibromyalgia. I may be slow but have started to join the dots and am due to see a urogyne consultant in a week. I wish you all the best on this journey.
I got my urethra tape surgery in July 2021. Everything felt ok until about 8 wks. When resuming intercourse something caught on my partner. I felt inside me and had a ridge of plastic sticking out. I got on the internet and that’s when I found out the thousands upon thousands of women having issues with TVT slings. When I went to my doctor she reassured me this tape wasn’t like the old tape. It doesn’t cause those issues. She’s only had one other person with an erosion in 5 years! So I went in for the second surgery to cover back up the tape. I should have followed my gut and asked her to take it out. She said she could take it right now. I’m 2 wks post op and pretty darn sure its eroded again. The pain in my pelvic area is ridiculous. I’m thankful for the prolapse surgery but I wish I’d never done the sling. And its crazy I had no idea they were still causing issues. And its just wrong that doctors aren’t discussing these issues or taking them seriously. My doctor still thinks its only a 1% erosion chance. Based on what I’ve seen its way higher than that and a new study just hasn’t been completed since the newer tape has been being used. I’m in the USA. I’m just praying my insurance covers the second and third surgery.
Please help me. Over the last couple of years I have been getting intermittent burning in the entrance to my vagina. This has become more frequent and intense (feeling similar to a UTI). I had a TVT fitted about 13 1/2 years ago and not told of any dangers or choices. I know my TVT has dropped as I could feel it right from the beginning in my vaginal wall, both on the left and right-hand side. This tape on both sides has moved down a good centimetre, possibly more. Has anyone gone through this too and if so, what action did they take?
Anyone ended up with Autoimmune disease afterward? I got RA and MGUS that turned into Plasmacytoma( single form of multiple myeloma) about 8 years after TVT surgery. No one in my family has any autoimmune disease at all.