How My Interstitial Cystitis Began (Interstitial Cystitis Network)

[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]

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.

[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!

[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 :)

[duckletshut]

I did start having pain in my bladder after a bladder infection that travelled quickly to my kidneys.. Ive had IC ever since -- I self-diagnosed myself after tests were negative for bladder cancer, kidney disease.. I've been on Elmiron ever since..

[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.

[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. I'm even staying on the IC diet and everything.

[theonlysuz]

Jill thanks for helping me in 97 when I had my first major flare - after swimming in a cool pool. Also I had a very sensitive bladder since I was around 8 years old and remained undiagnosed until I was almost 50! These videos are great! Ditto to everything you have said. And anyone with questions in the VT NH area, if need someone to talk to please call me. The number is on the IC site. Susie in VT!

[howsthat4anopinion]

Mine began after falling in love (and showing it) with my husband and getting a bad bladder infection that I had too long due to lack on insurance and inability to get time off of work to see a doctor.

[cedilias]

Thank you for telling your story! I have been suffering from IC for about ten years now myself. The information you and you organisation provides is so important. Keep up the good work!

[TheDoodleLady]

Forgot to mention I went undiagnosed until only three years ago. That didn't help. I do follow the diet to the best of my ability.

[TheDoodleLady]

It's hard to say how mine started. I was about 19 or 20 when I first noticed symptoms. I had urine infections, and other different female problems that could have attributed to it, and I also drank a lot of diet soft drink. It's anyones guess. Just wish I didn't have it. I wish I could get to a point of being symptom free most of the time!!!

[theonlysuz]

@TheDoodleLady

You WILL get better. I am symptom free now but it took some diligent effort to get under control.

Susie

[glassd18]

@theonlysuz

Thanks Susie!!! I appreciate that. I sometimes wonder if I'm being diligent enough. It seems like every food and medications flares me so it's so hard sometimes. I try and keep my chin up!!! I'm glad you are symptom free Susie. That is wonderful!!! Maybe you could send me a PM and let me know how you became symptom free.

[frodobaggins115]

I've been trying to figure out if I have a mild case of IC. I've been having a burning sensation (in the neather regions) with frequency and urgency and a dull ache in my back. Tonight was the first night that it's been enough to keep me awake. it's been going on for 4 months, started in may shortly after I was lifting a heavy object in and out of my car on a regular basis. : / any thoughts?

[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.

[bolajon]

My recent pain started after going to the pool. I haven't been officially diagnosed (one doctor said it was mental) I went to an Gynecologist who thinks I have IC and now I have to go to urologist to make sure that is what I have. I haven't slept well in weeks! I have been taking cranberry pills, maybe that is why I am not getting better, I have avoided OJ for years. I was around 12 when it started, just thought it was part if my period. I would literally sit on ice packs at 3AM

[surfgrl4jc]

I am wondering about lemon juice or lemon water I have read it alkalizes in the body and doesn't cause acid or bladder problems

[jackruffigan]

UNBELIEVABLE!!!! This is IN FACT what happened to me, I never really had a issue until I started swimming with my daughter a year and half ago........I then started having all this funky things going on and my Dr. too was great and said CHLORINE, you are SENSITIVE to chlorine! I to was doing the cranberry thing, and OUCH it got worse, and then I found you and started talking to my dr. and have came to the conclusion that I have sensitivities!

[kessevil]

a uti caused my ic ):

[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.

Jill :)

[Lesli2]

i was told that it can take up to six months for pain to improve at all when you give up the bad food, do you feel that way too about it? I was told sugar as wlel that its not good and put bad bacteria into the bladder/and or gut, that why asked about sugar, all these things i need to give up I now can see that thank you so much.

[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.

[Lesli2]

yes i have that all the time to that full feeling bladder spec at night so hard to sleep. my hot water bottle is my best friend lol

[Lesli2]

i so need to give up coffee and pop, its so hard but i know i must do it I have IC.

Will my ic pain ease up alot when i do give it up?

[Lesli2]

so stress too can bring IC on?

I can remember the day the week the year I first got my very first IC symptoms but didnt know until a year later I had IC and what it was.

[Lesli2]

thank you so much for this vlog.

I think we all needed to hear this.