Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
I am new to the group, but suffered from Interstitial Cystitus for the past 35 years. I tried everything including elmiron, bladder instillations, changed my diet, baking soda and water, etc. I recently had a flare up that lasted for over a month and I was climbing the walls. In addition to feeling the pressure to urinate every 5 minutes, I had severe lower back pain. If there are any new treatments out there that worked, I would appreciate the feedback. Thank you!
My GP has also just put me on a drug to stop the bladder wall spasming or being oversensitive (that's how I recall her explanation) which is oxybutynin hydrochloride. It helps but not as quickly as the expensive herbs.
I hope that helps. This is a very debilitating condition and hard to live with. I haven't been on this site often but sometimes it has saved my sanity.
Take care.
Annelise
Thank you so much for your reply.
I will definitely try the herbs. I will also inquire about the oxybutynin hydrochloride.
I have tried mannatose, Uti-Relief by Research Verified, Vitamin Code Raw Vitamin C by Garden of Life, and many others that did not provide relief for me.
It can be very frustrating (as you know) when weeks go by and you still have the symptoms of the worst UTI you can imagine. Sleep is an issue also during flareups as I am up most of the night. Do you experience the lower back pain with your flareups?
Again, thank you for your response. I hope you are having a good day !
Kathy
Sorry for slow reply. How are your symptoms lately? I've had a bit of a hell few weeks with my own symptoms. It's such a frustrating illness/condition isn't it and so interferes with life. Back pain can be part of the whole deal and often lean up against a hot water bottle to get some relief. Not so much fun in Summer!
Also like you I experience insomnia as a result of pain and for me this feeds into fatigue issues the next day. I work from home in the late afternoon which means if I haven't had a good night I can sleep in (once horses are fed) but this inevitably leads to a later sleep time the next night. Then on it goes and I can end up not sleeping at all with a zombie day following.
If you're inclined to send me a private message I'll see it faster than within the general page. I do miss the previous set up of this site when it was easier to see a response had come through.
Hope your latest flare up calms down quickly :)
Cheers
Annelise
Sorry to hear the last few weeks have been rough for you. I can certainly identify. Going to the doctor today and I will ask for something for my spasms. This is the longest I have gone without relief. I feel better one day and the next day all symptoms are back. I will look for your private messages and I thank you gain.
Hope you are having a wonderful, pain free day!
Kathy
I've been reading up on the function and dysfunction of the ileocecal valve which has led to think it's played a role in my current poor health. But it's a slow journey back to health when we've been down low for so long.
I haven't tried the DMSO and probably wouldn't opt for surgery because I just don't think the majority of doctors have a clue about IC. The Bowen therapist I've been seeing did have some success in releasing potentially cramped muscles and now has me regularly sitting on a tennis ball to achieve the same release (sounds far more sexy than actual is I promise :).