There’s a whole new crew of vagina warriors in this world, and we are a direct product of late capitalism. We are talking loudly and without shame about our vaginas and the damage we have suffered from medical vaginal mesh devices. If it wasn’t for social media, we would all be in the dark as to our number. We are a community of patient survivors from America, New Zealand, Australia, Canada the UK and Europe. There are thousands of us, from all walks of life. Our community is strong and supportive, but we are also very unwell, and our ability to act in this world has been greatly diminished. Many of us are housebound, bed bound for long periods, and in need of multiple revision surgeries to address the serious complications these devices cause as they erode through our pelvic organs and soft tissues. Many mesh victims are severely traumatized by their experience, and it is an absolute life line that we have found each other online. We help and empower each other in ways I have never experienced before in any other community.
We have been lied to, shamed, silenced, maimed, denied, and medicated out of our minds on palliative care drugs. We have suffered painful erosions of mesh through our vaginas, terrible nerve damage, pelvic prolapse, bladder and bowel dysfunction, and many have lost organs to mesh. We suffer from biofilm infections, and an increasing number of us have developed autoimmune conditions as our bodies react to the toxic chemicals leaching from these devices. They are made from polypropylene. That’s the same shit that’s poisoning our oceans. We are the ocean, and we are being polluted to death.
I write to you in urgency today, because as any mesh injured woman would tell you, one of the reasons why we are out and proud is because we do not want any other women to suffer our fate. It is something we wouldn’t wish on anyone. We are making a bit of a racket, but in a world that’s built around controlling women and invalidating our narratives, I fear we aren’t reaching far enough. So I’m reaching out to you, because I think you can help, and I think you will want to.
Before I explain further, I need to get to the urgent bit. These medical mesh devices are going to be rolled out in Africa, Asia, China and South America, in a bid to transform the urogynaecological treatments available to women in the developing world. Having recently read about your work with the women and girls in the Democratic Republic of the Congo, I had to write to you about this. I have read and reread your piece Women Left for Dead and the Man Who’s Saving Them, and I feel overwhelmed by the thought of these pharmaceutical companies targeting these very women. In fact, it’s more than that, I feel really fucking angry and I want to do something about it.
These mesh devices are used in fistula repairs as well as pelvic organ prolapse and stress urinary incontinence repairs. They are sold as the ‘gold standard’, a non-invasive day surgery. It is nothing short of reckless endangerment that these mesh companies are continuing to push these devices unto unsuspecting women, especially women who are more vulnerable to exploitation and sexual trauma. It is critical that this gets out widely and publicly enough that we can use people power to put an end to this exploitation of women. This is a crisis in women’s health, a violation of women’s bodies, and it needs to be addressed as such.
Transvaginal mesh first came to the market in the USA in the nineties. These medical devices came to trial without rigorous safety testing or any human trials. A dangerous loophole in the regulation of medical devices, known as the 510(k) process, allows the FDA to clear new moderate or high-risk devices for market based on the similarity to an older device already on the market, even if that older device has been removed from the market because it injures or kills patients. This is exactly the case with regards to Transvaginal mesh. Essentially, we have been the Guinea pigs in this unethical and devastating scandal. We women are the human trials, and they are denying and ignoring our voices, leaving most of us with no treatment route, and a worrying development of more serious health complications, including cancer, heart and lung disease and chronic biofilm infections which have led to sepsis and in some cases, death.
Despite the incidence and severity of complications, regulatory bodies and pharmaceutical companies are still allowing these dangerous devices to be placed in the bodies of unsuspecting women, without full disclosure of the debilitating complications, and without gaining fully informed consent. With legislation that seeks to promote the corporate interests of industry over patient safety, we as campaigners and patient advocates are fighting an uphill battle. There are serious issues to do with the underreporting on adverse incidents by doctors and consultants to the regulatory bodies in all countries, resulting in their statistics with regard to complications being so much lower than they actually are. Regulatory bodies and a huge portion of the medical community globally, label us as hysterical women, women with psychological problems, liars. With their fake data, and lines like “This is a new mesh, it isn’t one of the products these women are talking about”, they will continue to allow these surgeries, despite the devastating, life-altering complications they know we suffer from. Officially they claim a 1% complication rate. In reality it is somewhere between 10%- 40% depending on which mesh device is used.
Mesh devices are designed to be permanent implants, so the medical community are not equipped to deal with complications. There is an urgent global need to train more surgeons in the removal procedures, as there are still less than a handful of surgeons who we can refer women on to for treatment. Dr Sohier ElNeil at UCLH, an expert in FGM, is our Dr Mukwege here in the UK. Suzy (as she likes to be called) saved my life, and she is slowly rebuilding me and hundreds of other women whose bodies and lives have been destroyed by mesh. Suzy has the most gracious and light filled face, and people fall in love with her when they meet her. She’s a kick-ass surgeon with serious skills and she’s an activist. She has put her neck on the line for us, and speaks publicly against vaginal mesh, going against the ‘official’ bullshit lies of regulators and NHS officials. She campaigns with her patients. You really have to meet her. She’s a powerful force of nature.
I’m on the train now from London to Halifax in West Yorkshire, travelling home. I’ve just had a post op appointment to follow up an emergency surgery I had last month to fit a permanent suprapubic catheter. My wound is still raw, and my bladder retention has now turned into severe incontinence again because my urethra isn’t functional. Mesh had eroded into it over the years, so when Suzy removed most of my mesh in 2014, she performed a urethraplasty. My urethra sphincters don’t close, and despite the new tummy catheter, I’m still needing to wear Tena pants. I feel like a bucket with too many holes. Giving myself accidental golden showers at the most inopportune times is a new and unexpected happening. I smell of wee pretty much all the time. Suzy was off ill today, which worries me. I worry she will burn out, or even become ill herself. I have friends booked in for mesh removal surgeries with her this week, and they are on that sharp edge of pain, that I now know is something you know too. I have cried my way through reading In The Body Of The World this weekend. Thank you for that. It is a gift to all of us. I dare not tell my friends Suzy is ill and may need to reschedule their surgeries. It is a desperate time waiting for the day when she will take the poison out. It’s all you can think about.
Many of us are mums to young children we are too ill to care for properly. Many of us no longer have a sex life. Many of us are too ill and in pain to continue working. We rely on carers, mobility scooters and family and Suzy to keep us going.
In my case, my son was two when I had my TVT-O mesh surgery in 2009. Social services were needed to support my son in his younger years because I was housebound and crippled. Prior to my surgery, I was a senior lecturer in Art & Design teaching approx. 250 students a week, and about to embark on my PHD in January 2010, but I had to retire on grounds of ill health in 2013 at the age of forty. I am now registered disabled (although not disabled enough to qualify for benefits according to the DWP. They very helpfully stopped my payments the weekend before my surgery last month. The ideology of neo-liberal austerity needs a huge boot up the ass).
I am still mostly housebound, and now have social care calls twice a day to help me prepare food and keep on top of household duties and cleaning. I can no longer have regular sex with my husband. Our bodies still love each other, but the vigorous sex of our youth has most definitely been replaced by what I like to call the ‘old lady’ sex years. It involves electric blankets and incontinence bed pads and two days in bed to recover afterwards.
I’ve had seven further invasive surgeries to attempt to remove my mesh, and fix the damage. I finally found Suzy in London in 2014. She is the only surgeon who has actually improved my quality of life . In the five years since the mesh was put in, pieces of mesh had adhered to my bowel, my bladder and my urethra. It was a lengthy and difficult surgery to perform, like trying to remove chewing gum from long fine hair. I then had the privilege of being “the worst case of incontinence I’ve seen in perhaps forty years”, according to my urodynamics specialist. I needed another surgery for that. I went in on March 23rd 2015 and in less than 24 hours, both my lungs collapsed and I went to another world. I was lost there for five days. The next five were hard and almost impossible to tear myself through. I was in limbo. The lure of the other world was strong and offered rest from pain. But then I found myself, and I wanted to live and find joy, and hope, a future in this world with my children, my husband, my family and friends. More than that, I was finally able to truly love myself. It was revolutionary.
I can’t tell you how surreal it has been for me reading your astoundingly beautiful story, and recognizing so much of your transformation as something so familiar to me. Our vaginas have been the key.
Vaginas will destroy the patriarchy. Because we will demand nothing less.
Every woman and girl without exception will be free from exploitation, violence, abuse and harm.
If you have read this letter, that will be a huge honour for me. You are the feminist voice of my generation. If you write back or call, I’m pretty sure it will bring on an excited if accidental golden shower.
Rising like a motherfuckingwarriorwoman!