In this blog, a woman who has suffered from severe pain and complications for 17 years due to transvaginal mesh shares her experience. She talks about how the device has changed her life, how her symptoms have been repeatedly dismissed by surgeons, and the variation she has witnessed between different specialist mesh centres.
In 2005, while in a consultation about an unrelated problem, my gynaecologist asked me whether I ever experienced incontinence. When I said that occasionally I did, very slightly, while exercising, he suggested I have a transvaginal mesh inserted while I was having a coil fitted. It would “future proof” me against incontinence and I would be in and out of hospital in a day. So without thinking much of it, I agreed to the surgery.
That was a mistake that I have bitterly regretted for the past 17 years; I have never been well since I had that surgery. Straight afterwards, I had a UTI, the first of a continuous string that sent me back and forth to the GP for antibiotics. I developed severe pain in my pelvic area and incontinence, and my symptoms changed so many parts of my life. I could no longer take part in the exercise I loved, sex was very painful and I had to retire early because I felt I couldn’t do my job well anymore. The medications I was taking for the pain and incontinence made me so spaced out, and led to an incident where I fell and broke my foot. After that, I decided to stop taking them, leaving me without relief from the awful pain.
It took me a while to link my symptoms to the mesh. The surgeon that originally carried out the surgery told me “the mesh is all intact” and dismissed my issues as being psychological.
It was only when I googled “transvaginal tape” that I came across Sling the Mesh, a support group for women with complications from mesh surgery. I discovered that thousands of people were in a similar boat - this small piece of mesh was destroying people’s health and lives.
I visited my GP and asked whether she thought my symptoms could stem from the mesh, and she referred me to a gynaecologist. When the doctor examined me, I could tell something was wrong, but she didn’t say much, referring me on to a specialist mesh clinic. It was a relief to be referred, but after seeing the mesh specialist surgeon I didn’t feel very reassured. I felt he, like so many doctors before him, dismissed the amount of pain I was in, telling me there were “no significant abnormalities.” He did offer to remove the mesh, but I just didn’t feel confident in his care. He had only done 15 mesh removals before, and not on a regular basis.
So I went back to my GP and she referred me to a different mesh centre hundreds of miles away to get a second opinion. I initially had a private consultation with the surgeon, and he immediately identified that the tape had become twisted in my pelvic floor, which was the source of my issues. He gave me a full explanation of the surgery and its risks, and I felt much more confident to undergo the procedure at this centre. Privately, the wait was two months, but I don’t have the money to fund such an expensive operation, plus all the associated costs. On the NHS, I was told to expect to wait six months.
We’re now at that six-month mark and I have been chasing the hospital to find out what’s going on. I recently found out I am not on the waiting list yet but will need to have my case assessed by a multidisciplinary team that meets once a month. Before me in the queue for discussion are 24 other women, so I don’t know when my case will be reviewed and whether I’ll need any further investigations before I can have surgery. It’s not knowing that’s really hard - if the hospital communicated what was going on, it would reduce my stress and make the wait much easier to bear. I understand the pressures the NHS is under at the moment, but this lack of information and clarity is really unhelpful for everyone. The hospital told me that they have appointed a Mesh Coordinator who is due to start soon - I hope that improves communication with patients.
The variance between mesh centres concerns me. I know it will take time for surgeons to gain the skills they need to carry out mesh removal effectively, but I experienced very different responses and attitudes from the surgeons I saw at the two centres.
Although I’m desperate to have the mesh removed, I’m also worried about aftercare. There doesn’t seem to be much information out there about recovery, or what to expect. It is a complex procedure that involves picking the mesh away from your flesh. Having been damaged once, I feel very nervous about what the outcome of the removal surgery might be, but I don’t feel that I have any choice other than to get it done and try to get some of my life back.
‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment
A year on from the Cumberlege Review: Initial reflections on the Government’s response (Patient Safety Learning, 23 July 2021)
Regulatory flaws: Women were catastrophically failed in the mesh, Primodos and Sodium Valproate tragedies
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