As you know I regularly ask patients to write blogs for me about their particular journey with their pelvic floor dysfunction. And many times the resulting blog that they send me is articulate and resonates with me on many levels. Well today’s blog is no different. After five turbulant weeks in Australia, when women have been disrespected in the highest house in the land, this author has connected the pieces. This is her perception and I wonder how many women are wondering the same thing?
Professor John DeLancey, a world renowned urogynaecologist often asks at his presentations why the knowledge about management of female pelvic organ prolapse (which is so common), is so slow in truly solving the problems for women? Compare it to the Coronavirus vaccine. Less than a year ago at a zoom dinner party, two of my doctor friends said ‘There’ll never be a vaccine invented – the common cold is a coronavirus and look they’ve never been able to crack that’ and many other leading doctors interviewed on TV said the same thing in the following weeks. But look what we have now – is it 6 or 8 different vaccines that have been approved and being injected into the arms of millions of people around the world to beat this pandemic?
If you throw money at science and research, incredible things happen.
Maybe that’s what obstetric procedures, pessary design and prolapse surgery requires – a whole lot of money for research?
So here is this lady’s blog on her journey with her problems with mesh and her subsequent recovery……..We’ll call her Annabelle.
As I write this blog I reflect on events of the last month … Johnson and Johnson lost their Australian pelvic mesh court appeal and the Australian news cycle remains firmly focused on continued gender issues within our society.
I can’t help but wonder if the two are related?
Would Australia have continued to support this product so long after its devastating effects were evidenced in other countries, if those affected had been male?
My mesh was implanted by a urogynaecologist in 2016. During our first and only consult before my operation my surgeon failed to mention lawsuits involving thousands of women in other countries directly related to the product he was recommending to me. He failed to even highlight possible controversy around this product. He simply told me it was perfectly safe, thousands of women had this product implanted every day, and directed me to his website – which I naively relied on as my only research. Two weeks later I had the operation.
Following the initial operation, I was in significantly more pain than expected and returned to my surgeon two weeks later to follow this up. My surgeon performed a quick internal and promptly informed me everything was good – he’d done great work. He told me some women don’t cope with pain as well as others and offered me an additional two weeks leave from work if needed. Two days later I stood up, felt something tear inside me and the pain was gone – unfortunately so were many of the positive effects I had experienced following the surgery in terms of my original symptoms (bladder incontinence). Since the surgery, I also consistently experienced localised pain and throbbing in the four local sites my mesh had been attached, but my surgeon at the time dismissed this as no problem, so I simply accepted this as a side effect. My overall situation (in terms of bladder control) was however slightly improved so I accepted the results and moved on.
Over the next two to three years however I suffered a slow deterioration in my bladder continence as well as other symptoms I did not immediately associate with my pelvic mesh – slow weight gain, tiredness, brain fog. As a woman (particularly one who works full time and manages a family) it is easy for self and others to dismiss these symptoms as the natural by-product of a busy life. In hindsight, I should have known better, as I experienced similar symptoms once before when I had an Implanon (birth control device) inserted in my arm. My doctor at the time confirmed I likely had a foreign body response – a response of my biological tissue reacting to a foreign body being inserted into my body and the doctor removed the Implanon immediately.
In 2016, I don’t recall my surgeon specifying foreign body response as a possible side effect for the pelvic mesh and I am fairly confident I would have remembered if he did – I put on, and subsequently lost, 10kg after the Implanon was removed and suffered significant brain fog during this time – not something you easily forget. Had I known in 2016 that foreign body response was a possible side effect of the pelvic mesh, I am confident I would have explored other options available to me as a result.
Circa June 2019, I became aware of increasing numbers of women experiencing devastating pain and suffering as a result of pelvic mesh. Reading more, I was shocked to learn my surgeon had implanted this mesh many years after stories and later evidence of the side effects of the mesh began to surface, and was disappointed he had failed to warn me of the potential controversy surrounding this product. While I was confident I was not one of these women (as I had recently seen my gynaecologist who confirmed there was no indication the mesh was growing through my vaginal wall), I decided to keep a close eye on my own situation just in case.
Early in 2020 I began to experience some localised ‘scratchy’ pain and commenced a period of assessment beginning with my local GP. My gynaecologist confirmed my pelvic mesh was now growing through my vaginal wall and referred me to a second urogynaecologist. While some local nerve damage (both a blessing and a curse) which has since been diagnosed, protected me to some extent during internal examinations – the pain I experienced following each diagnostic examination climbed to an excruciating level over coming months. For two to three weeks after each examination I would feel as if my insides had been industrially sandpapered. Combined with the added indignity of obviously experiencing pain at work and not being able to state simply when asked – ‘my vagina hurts!’, this was a difficult time.
My second surgeon confirmed the original diagnosis – the pelvic mesh was indeed growing through my vaginal wall, and we discussed options. Given my previous foreign body response, the likelihood I was experiencing this currently, and the fact the first operation had not been successful in addressing the original bladder incontinence, we agreed on an operation to remove the original pelvic mesh and create a fascial sling (from the fascial material in my abdomen) to address the bladder incontinence. My surgeon also recommended I contact a pelvic physiotherapist, to prepare properly for the operation and maximise my chances of success after the operation.
In May 2020, I met with my pelvic health physio for the first time. She carefully discussed the advice I had received to date and we talked about options moving forward. Agreeing on the recommended course of action, she helped me prepare for my pending operation and I read a book (‘Pelvic Floor Recovery’) for women approaching surgery. I followed each instruction to the letter and felt well-prepared for my surgery.
Prior to the surgery I researched deeply and found literature indicating it was difficult to remove the entirety of the mesh in many circumstances. I raised this with my surgeon who explained it would be difficult, but her preference was to try and remove as much as possible. While it could be invasive, her experience indicated benefits in removing the mesh in its entirety. I accepted and agreed to this approach.
In July 2020, my urogynaecologist with the help of a colleague, performed my surgery and was able to successfully remove the pelvic mesh in its entirety and create a fascial sling. Undoubtedly the most painful operation I have experienced with a long recovery time (16 weeks off work and some pain on and off for months) – I have no regrets. Following the operation my urogynaecologist confirmed chronic inflammation around the site where the mesh had been inserted and the presence of Staphylococcus on the mesh itself.
I write this now in March 2021. The fascial sling has addressed many of my bladder incontinence symptoms and, with my post-op physiotherapy programme, I continue to improve my pelvic function. While the recovery was long, I wake up each day thankful the mesh is no longer within my body and consistently feel happier, healthier and more confident.
It has not been an easy path to tread, but I encourage anyone reading this who finds themselves in a similar position to do as I have done – research well, trust your instincts, build a strong support network including experienced professionals, follow the advice given to you, and prioritise your health and wellbeing – not something women always do naturally! I have no regrets and am eternally gratefully for the support I have received along the way.
Thank you Annabelle so much for this blog. A harrowing read. Unfortunately, this story is far too common.
And the gender issue often is around believing women’s stories. Their headspace, the brain fog, their fatigue – all these symptoms can sometimes be dismissed as ‘a woman thing’ and yet time after time, it is shown to be related to mesh implantation – either infection from the mesh or that foreign body response setting off an autoimmune response. It has been already shown that the design and use of the mesh in women, because of the reactions and pain experienced by women, has had elements of a bad experiment without due diligence in what actually happens when this polypropylene mesh is implanted in some women.
If you need to understand more about this issue, the Australian Commission on Safety and Quality in Health Care has developed this document on Transvaginal Mesh which I commend to you. But here are two important paragraphs from the report about what women said to the Commission at it’s hearings that I have included here:
The impact of complications
- The majority of women who attended the forums reported experiencing chronic pain, ongoing incontinence, loss of sexual function, various forms of emotional and psychological distress, broken relationships and unemployment following treatment with transvaginal mesh
- Many women reported that their general practitioner and/or medical specialist either did not recognise signs and symptoms of complications following transvaginal mesh treatment or did not associate those signs and symptoms with transvaginal mesh treatment
And from the main final summary document on transvaginal mesh:
- Many Australian women who have experienced transvaginal mesh complications have reported that they had difficulty accessing the care they needed. This is because their doctors did not understand or believe that the transvaginal mesh may have been causing their symptoms, or did not believe that their symptoms were as severe as reported.
- These symptoms can contribute to physical impacts and affect your quality of life. Women have also reported various forms of emotional and psychological distress, broken relationships and unemployment following a transvaginal mesh procedure.
- Some women report experiencing autoimmune diseases following treatment with transvaginal mesh. At present there is no scientific evidence to support a link to autoimmune disease.
And as for believing women in Parliament? This time women must not let this issue go – the disgusting revelations that happen in our law-making House need to be cleaned up and that happens when women are listened to. One of the easiest things that could happen would be implementing the recommendations of the report – The National Inquiry into Sexual Harrassment in Australian Workplaces– headed by Kate Jenkins, the Sex Discrimination Commissioner. This was released to the government over 12 months ago and nothing has been actioned as yet. How much did that investigation cost? Why does this happen? Why bother running an inquiry and then not acting on it….? Lets hope that as terrible as all these revelations are, they become the catalyst for change.
Kate Jenkins Sex Discrimination Commissioner