Interstitial cystitis

Hello ladies!

I am 8 weeks through a 12 week course of Paclitaxel and 3 weekly Herceptin. I have developed an acute attack of what the doctors think is interstitial cystitis possibly brought on by chemo meds although my onc says she has never come across this before. There is no evidence of infection in blood or urine samples so it’s not a UTI. There is also quite a lot of blood in my urine but I’m assured this is not the result of something more sinister.  It is extremely painful and debilitating with no obvious immediate cure. I’m on antibiotics too (just in case there’s an infection which isn’t showing up) but these have made no difference. The only minimal relief I’m getting is from anti inflammatories and pain killers. Urologist has this morning suggested I also try over the counter cystitis medication!

Has anyone else suffered with this? I can see a lady called Ann posted in 2013 about interstitial cystitis but can’t find anything more recent. Please can anyone help as this truly is worse than everything else put together?

Hello Summertime I hope I can help you here. A possibility is a holding pattern of the pelvic floor muscles. This can happen for many reasons. Basically a neuralgia. Treatment with amitriptyline and pregabalin help. Mine was brought on by endometriosis, the pain was hell. I manage much better now. This may not be the same for you but thought I would suggest it because I had ages trying to get a diagnosis.

Ramade x