Bladder reconstruction: a patient's perspective – Sally Richards

Sally Richards* is a 46-year-old from the Midlands who had severe bladder problems. The mother-of-two experienced years of debilitating pain and saw 12 different doctors before she was referred to Mr Jeremy Ockrim who carried out a bladder reconstruction. Sally describes her experience of bladder pain syndrome and reconstructive surgery.

“I had repeated kidney infections as a child and spent three weeks in hospital when I was four. Things settled down by my twenties, but after I had my two children, I faced a different set of problems.

“I had terrible pains just before my periods every month. It was diagnosed as endometriosis, but the attitude of doctors back then was the pain was something you had to put up with. By my thirties, the pain was really severe and my womb was enlarged. I was then advised to have a hysterectomy.

“I had my hysterectomy at the age of 32 and was left with one ovary, so I wouldn’t have to go onto hormone replacement therapy at such a young age. But there was a blood clot and my ovary became embedded. I had further surgery to remove that ovary and some adhesions within my bowel, but that created bladder problems. Every time they tried to solve one problem, they caused another.

“I was in a lot of pain. When I walked, it felt as if I had a ton of bricks attached to my bladder. I had repeated infections and often had accidents, so you become scared to drink. It was a vicious circle and to be honest, at times I felt suicidal.

“I was passed from one doctor to another for more tests, assessments and five different operations. I took medication and had procedures to stretch my bladder, but nothing worked. Every time I had any treatment, even the smallest procedure, I had to take time off work. My husband had to drive me to appointments in London, using up his holiday and paying for accommodation, which was very expensive. It has an impact on the whole family.

“By the time I saw Mr Ockrim, I had seen seven different doctors. Although bladder reconstruction sounds quite drastic, it was what I wanted. I couldn’t cope any longer and I had tried everything else. I was given an appointment for surgery very quickly, just a few weeks later. I felt happy that my problems may finally be resolved, but very nervous. You lose parts of your bowel and it is major surgery, not to be taken lightly because it is life changing.

“I had my surgery in October 2008. It wasn’t plain sailing – after the operation, parts of my new bladder would go into spasm. I’d suddenly become wet without any warning. I had the second stage of my operation in August 2000. Three months after my second operation, everything is 100 times better.

“I’m no longer having any bladder spasms and at last I am free from pain. I have to self-catheterise permanently and do regular wash-outs. For me, it is far better to change my life and get used to self-catheterisation than live with the problems I had before surgery.

“I’m very grateful to Jeremy Ockrim and the specialist nurse Julie Jenks who provides fantastic support. You know you can call them any time and they will help and advise you, which is really important.

“Another six months down the line, I’m looking forward to riding a bike for the first time in about 20 years and doing every day things like going for a walk and wearing nice clothes. For me, bladder reconstruction surgery really has been a miracle.”

*Sally wishes to remain anonymous and so her name has been changed.

Find out more

▸ Read more about Painful Bladder Syndrome (PBS) and Interstital Cystitis (IC)