Joanne travelled from the north-west to BPC for TOT mesh removal surgery. Joanne, aged 52, describes her experience.

“I had been struggling with stress incontinence for many years, since giving birth to my two sons. I tried pelvic floor exercises, medication and injections, but none of which were successful, and the stress incontinence just seemed to be deteriorating. Having a mesh sling implant was suggested and described to me as an easy option; It would be a day case procedure, so I would be back home on the same day, as long as there were no hitches, and fully recovered within about four weeks. I did have some reservations, generally with having surgery, anaesthetic or anything going wrong, but these were quashed by the doctor, this was September 2016, just before problems with TVT/TOT mesh implants became widely publicised. I wasn’t aware of any medical issues with the mesh, and felt no need to research the surgery on the internet. I purely followed the advice of my doctor.

The surgery was effective in terms of my incontinence, and I made a good recovery. It was some nine months later, in the summer of 2017, when I started to feel niggles in the top of my inner thighs and some lower back pain, particularly the area around my sit bones. Within three months it had intensified into lower abdominal pain, which felt like severe period cramping. It was very debilitating: I lost a stone-and-a-half very quickly because I was in so much pain.  I had no appetite, spent days lying on the sofa and counting the hours until I could take my next pain relief medication.

From early on, I suspected the pain was being caused by the TOT mesh implant. I saw different doctors at the local surgery on numerous occasions, but all dismissed the possibility that the pain was caused by the mesh implant. I was admitted to hospital as the GP’s just didn’t know what was causing such pain. Over a few months, I had an X-ray, CT scan, colonoscopy, laparoscopy to check for endometriosis. During this whole sorry period, I was prescribed many anti-inflammation and pain relieving medications. I decided to take the matter in my own hands and seek help from a consultant in London, who carried out an endoscopy, which showed the toll my stomach had taken with the pain medication, but not the cause of my pain. This was the first person who’d really listened to me, he thought the issues I had were highly likely to be associated with the mesh. I did my own research and found an online group for women who were having problems with mesh implants. There was a list of eight surgeons in the UK who could carry out mesh removal treatment. Mohammed Belal was not the nearest surgeon to me, but his biography appealed to me the most because it seemed very honest.

I first saw Mr Belal just before Christmas 2017, with scans arranged early in 2018. They showed that my implant was intact but causing extensive inflammation in my nerves, especially on one side. Travelling to Birmingham was made as smooth and easy as possible by Mr Belal’s secretary Louise who went to great lengths to ensure my appointments fitted in with my travel arrangements.

The operation to remove the TOT mesh was successful, about 90% was removed, but the recovery was long and slow, taking about five months due to the nerve damage that remains. I continue, and will probably always need to take medication for nerve damage.

After this procedure, my incontinence returned to a more severe degree than before. I had been told that this may be the case, but to have time to heal, and then we would take one step at a time and decide what action to take next. It was thought to be better to have time to recover from this mesh removal procedure before having the autologous implant (the sling made from your own body’s tissue). So, although this period was challenging, I was prepared for it, which was very important. You need to be kind to yourself and not expect miracles overnight.  It helped me to realise that Mr Belal was using a scalpel and not a magic wand!

I had my second procedure in October 2018, when fascia (tissue) was taken from the pubic bone area to construct a sling from your body’s own tissue. Your own tissue is used to create a sling and because this is your own tissue, it doesn’t cause rejection and inflammation. Few surgeons are trained in this procedure, unfortunately, because of the past emphasis on using TVT/TOT mesh.

There was some discomfort after my second procedure, but the main challenge was that I had to self-catheterise for three months. I knew this was a risk; again, I had been warned this was possible, and it felt like just my luck that I would be in the minority affected. I was very grateful to have the support of Mary Kirkham, an advanced nurse practitioner at the Birmingham Prostate Clinic who gave practical guidance and was always there for me, a phone call away, whenever I needed advice.

I went back to the clinic for my final appointment (March 2019) Mr Belal commented that I was a different person: I am generally pain and discomfort free. I am dry and no longer need to catheterize; I’m back to living my life and making the most of it. It has been a really long and hard journey and I am very grateful to Mr Belal and the whole team at the Birmingham Prostate Clinic, I am reluctant to say goodbye.

My advice to others would be: go and see a specialist in this area. Many doctors just don’t seem to have the knowledge for diagnosis, and it is very important that you see someone who does. I know what it is like to be stuck lying on the sofa unable to do anything else because of the pain you are in. Don’t wait or delay: start your journey to recovery.” Looking back, now armed with much more information, I wish I had pushed harder at the outset to see a specialist in this area, trusting my gut feeling.