Interstitial cystitis

[LISaprag]

Who suffers with this and what are your Symptoms

[gbeam]

Hi, I have suffered with intersial cystitis for over 20 years. My symptoms are painful bladder when even a small amount of urine in my bladder, the pain gets worse the longer I hold it. Pain after iv been to the toilet, dragging, heavy, sharp ache. I can also suffer from low back pain and pain in the tops of my leg. I now do a monthly instill which I have been having for nearly 6years, this helps and now I suffer less flares. Hope this helps. What are your symptoms and treatments?

[LISaprag in reply to gbeam]

I’m still trying to work out what my symptoms are they seem to flare once a month pelvic pain sometimes feels like need to go we more then a dragging sensation after I feel pain on sides sometimes I used to go docs thinking I got a uti but most the time tests was clear as it feels like that when I last had a uti I get bloated too I get told lots of thinks ibs or endometriosis I’ve had a colonoscopy for bowels was normal I’ve had pelvic scans all normal I had kidney bladder scan normal it’s really depressing I’ve gone into the mini pill see if it helps but not so far when do u get your flare ups and how u get diagnosed

[LISaprag in reply to LISaprag]

Oh the pain is more sore near my bladder is but I know also the urteas is there too so hard to work out where pain is

[gbeam]

I was diagnosed quite quickly when I was referred to a urologist. He checked my bladder, listened to my symptoms. Which at the time I thought were painful bladder when I couldn't get to the toilet. Sometimes sharp stabbing pains. I had been like this for years and had just put up with it. Untill i was diagnosed with another condition. I couldnt cope anymore and need to be lisyened to.He recommended i have a course of instills which I have carried on with for the last 5 year's. When I started them, I realised the constant low back pain and heaviness in my legs were all part of the condition. I will still have the odd flare up, but I do my own treatment at home now, once a month and I can manage my life so much better now. There is no cure just management. Have you had a referal yet?

[LISaprag in reply to gbeam]

What and when U get pains I’ve not had no referrals yet as I only seem to get this pain once a month it’s like I have a uti but no infection I seem to put up with it cause after about 4 days all symptoms goes away untill next month or about 4 weeks later