How My Interstitial Cystitis Began (Interstitial Cystitis Network)

ICN President Jill Osborne shares how her IC began. A survey of patients showed that many symptoms begin after a physically traumatic event like a car accident or fall. Jill shares how her bladder pain began with an extreme chemical exposure in a swimming pool.

Category:

Education

Tags:

• Interstitial cystitis
• IC
• ICN
• IC Network
• Jill Osborne
• swimming pool
• support
• flares
• diagnosis
• treatment
• causes

[dspmack]

Thank you, thank you Jill for reaching out to all of us with IC! Your videos and website are a wonderful resourse and encouragement. I am newly diagnosed with IC. Your diet guide on your website has brought my pain from an 7-8 to a 2-3 most of the time. Like you, I was drinking cranberry juice (and lots of other bad things), before I learned what my diet should be. LOL

[icnjill]

@dspmack So glad to hear that! Yay!!! Jill :)

[keartin]

I think it the loads of cranberry pills and apple cidar vinegar that I thought would help (thinking I had a never-ending UTI problem) that made it so much worse. Before all the cranberry pills I only had mild irritation and that was only every few days and now it's been constant for almost four months - not even an hour's break.

[icnjill]

@keartin I agree... I feel the same thing happened to me as well as that first year I was drinking almost a quart of cranberry juice a day.. along with sodas, etc. etc. I have no doubt that made me much MUCH worse.

[icnjill]

Respectifully Sunlover, there are dozens and dozens of patients who have had the same experience of mine with pools and hot tubs. A severe chlorine exposure DID trigger their first IC flares and/or bladder pain.

[Lesli2]

is sugar something we have to totally get out of our diet???

[icnjill]

No, not sugar... artificial sugar is the much bigger problem.

I lived with a heating pad for some time. It really helped.

Yes, you do have to give up coffee and pop. Yes, the pain should improve but you're going to have to stick with the diet for atleast 3 months. NO COFFEES OR POPS for three months min. I just put up another video which explained why.

[grettagrids]

bladder surgery caused mine :(

[JohnRater]

But I've recently been getting them, this time with razor pain. I first experienced razor pain when I smoked weed, and now I'm getting it regularly. The doctor says it is purely psychological, but I can't ignore it. The pain is horrible and is ruining my life. Should I see another urologist to see if he can give me elmiron? I hate this because supposedly it's psychological and yet I have horrible pain. Admittedly, I do not wake up at night due to the pain.

[JohnRater]

icnjill, I've been having bladder pain and urgency since 2008. During 2008 I would urinate frequently after drinking sodas or coffee but it wasn't a big deal. Then one day, I had to urinate really badly but held it in for 2 hours. That night, I was peeing every 10 minutes. I had horrible symptoms, I went to a urologist who did a cystoscopy and found no problems. I continued having problems which diminished after a doctor told me not to think about it.

[traffictype]

Mine started immediately after sitting on the jets in a friend's underheated hot tub. The person sitting across from me got 'eye herpes', and I had gotten round skin sores from that tub before. It's so weird how fast a urethral injury can turn in to IC! I was so desperate I was doing self instills by the 3rd week! No prior UTI or bladder problems EVER.

[frodobaggins115]

see, mine started immediately after I injured my back (not that seriously) from lifting a friend's wheelchair in and out of my car.

[katiekins77]

@Anastasiaxxoo I'm almost 23 (i'll be 23 in august) I have Crohn's disease and IC. PLEASE don't force yourself through something that you know you cannot handle...it will in the long run, make everything so much worse. (symptoms wise) I can relate to the whole new job thing. I was slammed with Crohn's first then IC came 1 1/2 later, and I had no choice but to quit my job. If i knew then what I know now, I would have quit much sooner...God Bless you and good luck!

[katiekins77]

I have Crohn's disease, and IC....not a good combination!

[Anastasiaxxoo]

When I saw this I started crying. I am a 23 year old female and have been diagnosed with IC. I am the youngest female at our local hospital with this problem and have a hard time "convincing" practitioners that something is wrong with me. I am currently having a flair up and have just started a brand new job. I am so scared I will lose my position because of my constantly having to run to the washroom and having to take time off because I can't get out of my house.