Does Anyone Here Have Interstitial Cystitis?

ECBG · ‎01-08-2011

I spoke with a friend this afternoon whom has suffered with horrible pain that makes a urinary tract infection tame. Apparently she's had some very tough times eating with too much variety. We went over her diet today and I tried to suggest some things to cook.

Does anyone have some good dishes for people with this condition?

Many thanks!

Princess Margarita · ‎01-16-2012

Many have fully recovered from this condition from learning about mind body syndrome on you tube or books by Dr.Howard Schubiner and others. The diet thing does not generally produce good lasting results because you are constantly developing new triggers to foods. Best wishes!

CelticCrafter · ‎03-09-2010

My mother-in-law has it.

She is on medication for it, but she knows better than the doctors and only takes half the dose by cutting the pills in half.

Well of course, the medication really isn't working.

She's told the doctor she does this and he told her to stop doing that, we have told her not to do it but she won't listen and will do what she wants to do. If she won't listen to the doctors she certainly isn't going to listen to us.

She refers to my sister-in-law and myself as armchair doctors...

GSPgirl · ‎01-03-2012

@ECBG wrote:
I spoke with a friend this afternoon whom has suffered with horrible pain that makes a urinary tract infection tame. Apparently she's had some very tough times eating with too much variety. We went over her diet today and I tried to suggest some things to cook.

Does anyone have some good dishes for people with this condition?

Many thanks!

Please, please tell her to go to a Pelvic Physical Therapist. I'm being treated for pelvic pain and my Pelvic PT is an expert in treating this condition, too. I understand there is no cure, but this PT can treat it to relieve your friend of this pain. Pelvic PTs are becoming more popular and some have their own practice. Good luck!

Abrowneyegirl · ‎03-15-2010

My friend has it, she suffered terribly for about a year until she found a dietitian that specializes in food senstivities. She is now fine, symptom free for about a year and half maybe 2 years now.

She takes no medication.

If she strays from her diet.....her pain comes back everytime. She says it takes days to get everything called down again.

Snowpuppy · ‎03-09-2010

@Princess Margarita wrote:
Many have fully recovered from this condition from learning about mind body syndrome on you tube or books by Dr.Howard Schubiner and others. The diet thing does not generally produce good lasting results because you are constantly developing new triggers to foods. Best wishes!

Thank you for posting! I've had a few nasty bouts. My Dr said no real tests for this, only ruling out other issues.

Comes & goes, aggravated by caffeine & carbonated beverages. Even carbonated flavored water & mineral water have caused intense pain when this flares.

Mj57 · ‎03-10-2010

I have it for many years I do pretty good most of the time with meds and eating I'm not always perfect with the diet it's a hard depressing disease.

i eat most things unless I'm having a rough patch so I'm not good,with any special recipes.

coke is bad for me I love it but it is bad and chocolate I love that too I can drink a couple cups of coffee I just try to be moderate with what I eat.

I do vaga fem just here and there and it helps tremendously especially for pfd.

i do take other meds too.

MaryJo Ut.

colliemom4 · ‎09-08-2010

A friend of mine has it too. Tell her to go on the IC network website. It's very helpful and gives lots of information. You can also speak with others there on a forum. http://www.ic-network.com/

I know it's a difficult disease to live with. I'm sorry to hear your friend is suffering with it.

Toppers · ‎01-01-2015

@ECBG wrote:
I spoke with a friend this afternoon whom has suffered with horrible pain that makes a urinary tract infection tame. Apparently she's had some very tough times eating with too much variety. We went over her diet today and I tried to suggest some things to cook.

Does anyone have some good dishes for people with this condition?

Many thanks!

I personally think that food and beverage triggers might be different for different people.

She may just find by trial and error, what makes things worse for her.

I personally have to stay away from tea. There is something in the tea itself, that is an irritant for me. It doesn't even matter if it's a decaf. tea. I can't tolerate it anymore, and I used to love drinking different flavored teas.

I don't drink coffee, so that is not a concern for me.

Really spicy food is also an irritant, but I don't care for food that is generally "too hot/spicy" to eat, either.

When I was first having symptoms years ago, I went to see my primary care doctor for help, and then was referred to a Urologist for help, medication, and tests.

These days I see a different Urologist, but my bladder is much better and isn't as irritated as it used to be. It has calmed down a lot.