Interstitial Cystitis (long shot!)

SamanthaD1218

So I know this isn't likely, but does anyone on here have Interstitial Cystitis (IC)? I was diagnosed a few years ago, and after lots of medication and a surgery I'm now able to control it with diet alone. Unfortunately, my diet is very restricted because of it (I can't have acidic foods - citrus fruits, coffee, tomatoes, red wine, etc.).

Getting used to the diet definitely contributed to my weight gain - I was so afraid of eating anything that could hurt me that I mainly stuck to carbs. Finally I was able to introduce new foods in and see what works for me and what doesn't, so I'm doing much better now.

I'm wondering if anyone else here has to deal with the pains (literally and figuratively) of IC? Was changing your diet difficult/did it affect your weight? What are some go-to meals you eat that are healthy and IC-friendly? What are foods that you have to stay away from?

If you have IC, please friend me!

catshark209

I've got all the symptoms except for the ulcerations on my bladder. I was in remission for 12 years (!) and currently on the end of a bad flare.
I'm the opposite. I've lost tons of weight because I'm afraid to eat anything. I guess its a good way to eat clean now.

kath711

Yeah, i got it but i am not affected by diet. Mine flares with stress and hormones. i am on Elmiron which has significantly helped me. What type of surgery did you have? I also had vulvar vestibulitis and had those tissues removed but the doctor said short of removing my bladder surgery was not an option.

SashaMaja

I was diagnosed with IC last fall and have known for several years that I have vestibular vulvodinia. It's been really tough. I am strict with the diet but I still make mistakes and I really pay for them sometimes. Quite a few of the main staples of my diet are no-nos. I had my first bladder instillation a couple of weeks ago and it has made a big difference. Sadly, I can rarely wear jeans anymore and I am definitely a jeans kind of girl. Anyone who would like to add me, feel free. We can be good support to each other. Is there a group for people with IC?

acksaysbillthecat1

Me too! I don't have it too badly, I can go about 45 minutes without peeing (maybe that is worse than I think it is). But I do have kidney pain constantly. I don't follow the diet very strictly because basically those are all of my favorite foods. It can be a hassle, as I am a dog walker and feeling like I have to go all of the time is not optimal. I also have fructose malabsorption and asthma. All 3 of these diagnosed in past few years. I think they all go hand in hand.

S_Montgomery985

Is anyone from this thread still active? I'd love to be a part of an IC community on here.

cforsyth617

Hi, have IC too, its mostly controlled with diet, I usually get a flare up if its hot and I forget to drink enough water when I'm on a run.

Venezla_c

Hello!! I have IC too and I controlled it with acupunture is been the only thing that really helps me.