Below is a history of the journey I have had to date with this condition. If anyone can relate/ has had similar issues/ journey, it would be great to talk to you:
Age 6-8 – recurrent UTI’s – antibiotics given and seemed to clear things up.
Teenage years - no UTI but constant lower back pain – possibly due to low grade infection/ inflammation in bladder?
Age 23-27 – started with severe bouts of cystitis – generally triggered by sexual intercourse. I strongly believe this has been the main catalyst for my condition. Constantly on and off short courses of antibiotics. As the cystitis kept on recurring, I noticed over time, I was becoming sensitive to alcohol and that travel also could evoke a flare up.
Age 28 – The doctor prescribed me half a dose/ tablet of cephalexin to be taken every time I had sex to prevent a cystitis attack. This worked well for around 14 months, but I think my body must have got used to/ resistant to the low dose as it stopped being effective any yet again, I became prone to nasty bouts of recurrent cystitis.
Age 25 – developed uticaria and skin rashes/ allergies – possibly due to multiple short courses of antibiotics or auto immune condition triggered by recurrent/ ongoing infection.
Age 30 – severe back injury caused by a fall. Took amitriptyline to support back pain. When I came off the amitriptyline, I started with IC pain: lower abdominal toothache/ pain. Urethral pain/ spasm/ painful urination, heaviness/ pressure in bladder urethra – this pain was constant and did not respond to short courses of antibiotics and was not triggered by sexual intercourse.
Age 31 – referred to urology at Nuffield Health – underwent scans of pelvis/ ovaries/ womb etc – all seemingly normal. Then was sent for a cystoscopy. This revealed inflammation, debris and low-grade infection present in the bladder. I was meant to take a prophylactic dose of cephalexin for 6 weeks, however I developed cellulitis caused by a horse fly bite and ended up of Fluoxacillin for 4 weeks.
Age 33 - Bladder symptoms worsened again and I could not control the pain. Was referred to urologist. I was given a further cystoscopy – again conclusive of debris and low-grade infection. Was given cimetidine, Elmiron and Vesicare, but did not find these helpful, in fact I found that the medications worsened my symptoms. I then underwent a 6 week course of bladder instillations – however after the 5th treatment I developed a nasty UTI and had to wait for it to clear before recommencing treatment. Alongside this, I was also referred to a Woman’s Health Physio, which did seem to help and symptoms calmed down to a bearable level.
Age 36 - Present – After a nasty kidney infection 9 weeks ago, my IC pain came back with a vengeance and I have experienced acute pain ever since and no painkiller seems to touch the pain at all, leaving me in constant agony which is debilitating and impacting on every aspect of my life. I have tried acupuncture, Chinese Herbs, Pregabalin, amitriptyline, codeine, diclofenac, D Mannose but nothing really eases the pain/ makes it bearable enough to function.