Interstitial Cystitis

[Stm252]

Has anyone experienced this? Any tips or pointers? It's pretty terrible and I am struggling to get it under control. They feel it's obviously a secondary condition as a result of the Behcets. Thanks all.

[Benne09]

Hi I have IC and was diagnosed and treated for it may last year. Funny enough after suffering since then for a year with other symptoms have been told may have bechets still waiting for confirmation. Maybe there is a link? IC is very painful am sorry you feeling like this xx

[Stm252 in reply to Benne09]

It is extremely painful. How have you been treated? And how didn't hey diagnose out of curiosity?

[Benne09 in reply to Stm252]

Yes Veronicajoy is right for me also I cannot eat Jams or bread (only fresh bread) something to do with preservatives.....I think.

[VeronicaJoy]

Have they talked to you about helping to control the flares of IC with diet and lifestyle? You can help, not cure but help by avoiding highly acidic foods and drinks for example; tomatoes, oranges, orange juice, lemons, cranberry juice, etc..Cut out all spicy foods. Avoid caffeine, alcohol and chocolate which are all bladder irritants. Emptying your bladder when you feel you need to instead of holding it. Drink plenty of water to help flush the bladder irritants out. Also avoid intercourse during a flare. OTC anti-inflammatory medication such as ibuprofen can sometimes help. OTC AZO is also a lifesaver during a flare but it only numbs the area and gives relief it does not cure anything. I’ve been dealing with IC since age 16 my Urologist back then didn’t tell me it was IC when he did a cystoscope but I obtained my records recently and that is what he diagnosed me with, would have been nice to know that info for all these years as I am now 41. I didn’t know I had IC until a year ago when it was confirmed by a cystoscope with hydrodistention and a bladder wash that was sent to pathology. I hope this helps you, good luck!! 😊

[Stm252 in reply to VeronicaJoy]

Thanks so much for your response. This is pretty new to me. I had what I would consider my first "flare" right after my pregnancy and then this all subsided until recently and I think its related to my recently diagnosed Bechets. So no one has discussed anything with me. I have an appointment with the urologist to figure this all out so your information is really helpful. I was definitely having way too much citrus! And I will buy some Azo. Thanks again!

[VeronicaJoy in reply to Stm252]

You’re very welcome! I like citrus too...lol

My doctors feel that my IC is autoimmune related as well. Good luck to you at your appointment!

[jzeis]

Hi all!

Here's an article on BD bladder involvement that mentions recurring cystitis as an issue in some people with BD. You might want to share it with your doctor(s):

Bladder involvement in Behcet's disease (2012)

This is a review article -- in other words, it mentions all of the information published on BD bladder involvement up until 2012.

journals.sbmu.ac.ir/urolj/i...

This article also talks about some neuro problems that can cause bladder issues, but neuro-related problems are things like not having control over urination (being incontinent), never feeling like you need to urinate, feeling like you haven't emptied your bladder fully even though you've just gone, etc. If you have cystitis, that's *not* a sign of neuro involvement.

Hope this helps,

Joanne Z.

[Stm252 in reply to jzeis]

Great article. Thank you!

[jzeis in reply to Stm252]

You're welcome And PS -- there are also published reports of some BDers having lesions in their bladder and/or general bladder inflammation. You can also have lesions inside your urethra.

[Stm252]

This is very interesting. I wonder what the urologist will call this. IC or just AI related. It's all so murky and messy, isn't it? At the end of the day it's painful and I would like relief. I put myself back on the hydroxyzine from when they put me on it after the pregnancy and called it "IC" and I upped the Prednisone for 3 days. Not sure which helped but I needed relief and it showed it down. I also stopped all caffeine and citrus and spice. With everyone's recommendstions I have had some relief!