Share Your Story – Living with Fowler’s Syndrome & Interstitial Cystitis

We’re always grateful to our community for sharing their stories and letting others know that they’re not alone with their bladder and/or bowel condition. This week, Lisa, aged 35 introduces herself and tells us what it is like to live with the little known bladder disorder Fowler’s Syndrome, Interstitial Cystitis, depression and anxiety. Lisa will be keeping us updated with her condition in the hope to help others.

“My name is Lisa, I’m 35 and I’m married with three children. I’ve suffered from severe interstitial cystitis and constant bladder and kidney infections since I was 17 years old. After years of constant antibiotics I was referred to an amazing Professor Urologist at Bristol Southmead Hospital who performed four video urodynamics tests and eventually diagnosed me with Fowler’s Syndrome. I will always feel indebted to my consultant as I was so poorly and in my opinion, I believe he saved my life.

For me, having Fowler’s Syndrome is a living hell, my consultant can’t give me any answers as to why I have this condition and at the age of 35 I now have a suprapubic catheter. Now that I have my catheter, my kidney infections have reduced and so have my hospital admissions. I do suffer with pain everyday but it is manageable, I have bladder spasms that I control with painkillers and by sitting on a cushion. I find that the pain gets worse at night and this can make me feel depressed and anxious. Who would have thought you can go through so much at such as young age? Sometimes, it feels like you can’t see the light at the end of the tunnel but you do eventually.

Fowler’s Syndrome has been very challenging with lots of up and downs. I was advised to opt for Sacral Nerve Stimulation but was told that this would not be available on the NHS and would cost me £10,000 but I couldn’t afford this life changing device that would finally let me go for a wee! My consultant made a case for me to have the operation done on the NHS and we won! I was told the surgery could take years and to prepare to have a suprapubic catheter in the meantime.

Three months later I got a call out of the blue saying that they could perform the sacral nerve stimulation surgery that week, I didn’t feel prepared but thought that it was worth a shot. I arrived at Bristol Southmead Hospital to a lovely smile from my Urologist who was thrilled that he was able to do the operation.

The surgery was done using a local anaesthetic, I was shaking. I had to lay on a bed on my stomach with an x-ray machine hovering over my spine and the surgeon began to operate. I’m not going to lie, I found it quite painful and I wouldn’t go through it again under a local. I would advise you to have a general anaesthetic as I was shaking and very sick after.

After the operation I got dressed into my pyjamas, I was finding it painful to walk so they gave me a wheelchair to go home in but I could go home the same day and I was given my battery to control the device. I was on a two week trial so I had to chart when I went for a wee and how much I passed. During the first week, I didn’t go at all – even on the highest battery level. I wanted it to work so much. After day 12 I realised that it wasn’t working and that the reality of needing a suprapubic catheter was making me worried. When I returned back to Southmead Hospital, my consultant was just as disappointed as me and I sat and cried my eyes out. He hugged me and said that he believed it hadn’t worked due to being left for so long with major infections which had damaged all the nerves and muscles to the point of not being able to be repaired. I was gutted. Why did this happen to me?

This is just a little snippet of my journey with my chronic bladder conditions. There is much more that I would like to share with you in the future. Thanks for reading and I will keep you updated with my journey.”

Lisa