Theory on what triggered this...

[IrishInLondon]

Hi again folks,

Can't get enough of this forum - I am learning day by day about this condition. And all because of wonderful sites like this and the COB foundation website here in the UK.

I'm not yet diagnosed and haven't had symptoms for too long. But I have been racking my brain as to what triggered my symptoms. A few days before this all happened I just returned from a month's travelling in Asia - and while I was there i thought the healthy options was to drink iced lemon tea...and I drank LOTS of it. Nearly every day, sometimes twice. It's something I had never drank before and it didn't cause me any problems at the time - but do you think the acidity in this could have hurt my bladder over time?

Anyway, i just thought i'd throw that out there - my friends are great, but they really aren't interested in the complexity of all this. Just am I getting better yet? (I do feel better incidentally - following a VERY strict IC diet).

Thanks a million again - I realise I've missed IC awareness month, but I'm definitely keen on raising the profile of IC - particularly in men,

Thanks and lots of good wishes
Conor

[SuziQ64]

Conor,

This could very well be. I was taking a combo of pure cranberry juice, high dose vit c and b6 (deadly IC cocktail) for another ailment. IC was probably lurking but this really set it off :-(

I'm really glad to hear you are feeling better!

Suzi
ps I'm an avid traveller and am happy to hear you had a month in Asia! Where were you? I'm hoping to travel again, even after an IC diagnosis :-)

[IrishInLondon]

Hey Suzi,

Yes I reckon its just waiting for something to set it off in all of us. There's nothing we could have done though - if it wasn't the cranberry juice/iced lemon tea got us then something else would have! :-)

I travelled around Vietnam and Cambodia, a really wonderful experience. I know it's difficult but try not to let this condition prevent you from travelling and doing what you want. Just a bit of planning and some support is all that's needed.

I was actually thinking about this today - people doing great things with illness - I was watching Scrubs on TV and Michael J Fox came on. Here's a guy who has Parkinsons - a terminal illness that causes him all sorts of discomfort and will eventually end up take away his body, mind and probably life. And here he was acting in a comedy show and being funny with it! I found that really inspirational - and just though everyone in life gets dealt and hand and we just have to deal with it in the best away.

Anyway - rant over :-) How are you doing today? I hope things are good??

[polygon]

Personally I think we have a genetic component to it, since most people drinking and eating lots of acidic things don't have IC.
But it makes sense that it might set it off, uncover a genetic weakness so to speak.

So glad the diet is helping you conner.

[SuziQ64]

Yes, I think we could indeed have a genetic predisposition to IC. My brother has had chronic urethritis for 16 yrs and my (male) cousin has pelvic pain/fibro. Interestingly, nobody in the previous generation had IC. Maybe it skipped a generation? I sure wish it had skipped me!!!!

[shoshee10]

Genetics

There is definately a genetic component to this, or at least so sayeth the Mayo Clinic website. My mother has it, now I have it. The nice thing, not for her but for me, is that when she got it, there was very little understanding. She and my father have kind of paved the road for me a little, so to speak. Treatments that work, treatments that don't, what I can expect etc.

Leslie

[SuziQ64]

Hi Leslie,

You're very lucky to have your family as a resource. Could you share what you learned about treatments from your mom's experience. How long has she lived with IC?

Thanks!

Suzi

[shoshee10]

Suzi

I'm actually heading down there this weekend to have a long talk with my parents about specifics (I live in PA they are in Florida). I DO know that my mother has had a terrible time with vaginal infections and Elmiron. She does NOT like that drug at all. She's end stage, so she's had her bladder distended to pop cysts and is on a lot of pain medication. I'm actually going to direct her to this site when I get down there. She has had tremendous success with acupuncture. Definately something I will be looking into.

[polygon]

Leslie, that does sound good (for you), but I'm sorry to hear about your mom's condition, and glad acupuncture is helping!
My mum has all the symptoms and signs of very mild IC, since giving birth to me. First they it was just infection, and a weirdly positioned uterus, and she left it at that. 19 years later, after I was diagnosed, I pushed her to go see a Uro. They said her bladder lining is damaged, and although there is no infection or bacteria cultured, she has signs of chronic infection.
I explained to her what IC is, and she agrees she has the symptoms but doesn't want to pursue a diagnosis or get treated for it. I really wish she was more proactive, since I was showing signs at an early age and that would have helped me.

[shoshee10]

Polygon

I cannot imagine living with this for 20 years without some sort of treatment! Oh your poor Mother.