My severe bladder pain was undiagnosed for years. How I found effective treatment.

Ruth took up sewing and found it very helpful in terms of coping with bladder pain

Ruth describes her experience of painful bladder syndrome, enduring many years of chronic pain and seeing many doctors before the condition was finally diagnosed and treated at BPC’s Bladder Clinic.

“I have had pain, especially around the time of my periods, since my early teens. It was thought to be due to cystitis but once I reached my twenties, it was clear that it must be something else. There was a burning pain running through my pelvis, back and down through my legs. I was diagnosed with endometriosis and at the age of 31, had a laparoscopy to remove the endometrial tissue.

“I was devastated to find that after surgery, there was still severe pain in the central area, around my bladder and vagina. It is an all-consuming pain deep inside the body that would wake me early every morning at 4am. It feels a bit like period pains or when you have a urinary tract or bladder infection, but 100 times more severe. It was like an anchor pulling my pelvis down, yet every day I composed myself and got ready to go to work.

“More treatment followed which really took me to hell and back. I had a coil fitted, but my body rejected it and I ended up in hospital. I was put on the pill and bled constantly for 9 months despite coming off it after 3 months. I saw five different consultants, including a pain specialist and was given all sorts of medication: anti-depressants, anti-epileptic drugs, morphine patches and invasive pain blocks. It was difficult to recall what it was like not to feel drugged up and I felt I had lost a part of myself; the vivacious, fun-loving exuberant young woman who adores life.

“People struggled to understand it because it is invisible pain located in the inner body. It leaves you questioning yourself; wondering whether maybe it isn’t real and all in your head. But the affect is very real and debilitating – I was always tired, as the pain interrupted my sleep and took up so much energy just to perform normal daily tasks. Intimacy was not possible, although I am fortunate to have a very supportive partner. I lost confidence in the things I enjoy, like travelling abroad and going out with friends. Not everyone understands because they can’t see source of the pain.

“At the age of 33, I was put onto a type of medication that induces an artificial menopause. I found the side-effects terrible – hot flushes, aching, exhaustion. I was only in my early thirties and was trying to progress in the career that I love – communications – but it was extremely difficult to cope.

“I was referred to Mr Belal by my gynaecologist and by the time I saw him, I had almost given up hope that things would ever get better. When I described my symptoms, Mr Belal said he thought it could be interstitial cystitis which is also known as painful bladder syndrome. That was the first time, in all the years of seeing doctors, that the condition had been mentioned.

“I came off the medication which was a huge relief, after three years of being in an artificial menopause. I had my first bladder installation in September 2013. I was really nervous when I had my first treatment. However, it happens very quickly, within minutes and Mr Belal and the nurse made me feel at ease and reassured me. The first several times were painful but once they started taking effect, I didn’t experience pain during the procedure. Now it’s no big deal at all.

“It took about six weeks for the treatment to take effect. Once it did take effect, it was life changing. The first difference was that suddenly, it would be my alarm that woke me up. For so long, I had been woken in the early hours with burning pain.

“I had new levels of energy which meant I could do things I hadn’t been able to manage for years. I’ve recently got a new job, managing communications for a national, high profile organisation. It would have been far too much for me before, when I was living with constant pain. I’ve started to travel again, to see friends more often instead of spending my weekends recovering from my week at work so I’d be able to go back on Monday. I’ve got my life back.

“On a daily basis, I’m largely free from pain. I know there are certain triggers like alcohol and caffeine, so I avoid those; I try to take responsibility for managing the condition myself as much as possible. I have bladder instillations every two to three months.

“I am very grateful to Mr Belal. When I first met him, I had a strong sense that he really cared and that I was not just another ‘case’ for him. He really listened to what I was saying and that’s particularly important with painful bladder syndrome, because so often people don’t understand or believe what you are saying.

“I hope this condition will be better recognised and treated. I think in recent years, there has been better awareness of endometriosis, but my experience shows how rarely painful bladder syndrome is considered by doctors or understood. I imagine there are many people who are experiencing terrible pain, but feel embarrassed and unsure where to turn for help. I do hope they will find the help they need because it is a terrible condition to live with but effective treatment really transforms your life.”