Does anyone here also have interstitial cystitis?

I have had 2 bladder suspensions. One in '95 and one in '07. I was given Macrobid and Urised to treat myself when I get a flare up. I do not eat a special diet except if i have an infection.

My main thing was to be very careful about bathing. I clean the tub each and every time before I get in the tub. I do not use bath bubbles. I cut out caffeine tea. (I can cheat with coffee and cokes occasionally) I can not ever drink caffeine tea though. I glass and it will have me up all night thinking I am about to get birth out my urethra tube.

Since my last bladder suspension, it is a sling that is attached to my pelvic bone, I have not had nearly as much trouble as I did before with the regular suspension that was attached to the abdominal wall.I have never been given the treatment with filling the bladder. My mother had that treatment, but I think I would rather forgo that torture. I am glad that you think it is working for you though. I have had bladder trouble since I was born, so I can not tolerate any of the burning and spasms.

I forget the name of the pill for the spasms, but I was given that when I was at my worst before the last surgery. It helps so much!!!!!

I had 1 military dr. tell me that it was all in my head and he referred me to the physch unit. I was furious with him. Thankfully the Lord gave me a brand new to the base urologist when I had a horrible problem with a kidney stone. He did the testing and said, no wonder you hurt so badly. (I wished I could have gotten ahold of the old urologist and taught him a thing or two about urology pain. ;) but that was the evil me thinking. )

I do not have this problem but just wanted to let you know that we have had quite a few with IC on this forum.  I'm not sure if it's related to fibro but you never know.

 

Sherrine

I have heard that IC is something many Fibro patients have.

I was just diagnosed with Overactive Bladder - but just by telling my Dr. my symptoms. I have such an urgency to go that it is ridiculous at times. Literally I counted one day - 52 times to the bathroom. I go, lay down, get a sudden "OMG, I have to go now!" feeling and up I go...
I don't have pain though thankfully - so it's not like an infection (UTI), but the feeling is definitely not something one can ignore.

Thanks for all the replies. The urologist did say that IC does along with fibromyalgia. And I've never had a UTI in my life, just the symptoms I mentioned. The DMSO treatments don't even take 30 seconds. They catheterize me, empty my bladder, and put in the treatment. It's later that it starts burning. The nurse said they would teach me how to catheterize myself if I wanted to learn, so that traveling would be more comfortable for me. I usually stop 6-7 times to pee during a 6-hour drive. It's so annoying!

I'll address some specific replies:

Jacey86, some patients don't even feel the pain. I would suggest that you make an appointment with a urologist and have them do the cystoscopy so he/she can actually see inside your bladder.

AKAngel, I would see a urologist before a GYN. Maybe you do need a hysterectomy, but see if you have IC first. I wish I had known this years and years ago; the IC network says it helps to get disability with this diagnosis. In fact, for $40, they will write a letter that you can submit with your paperwork that outlines the debilitating effects of IC.

For those who don't have IC, the diet is very restrictive. You can see the diet at icnetwork.com, but basically you can't have any citrus fruits, no caffeine, no chocolate (you can have white chocolate and caramel, which has really helped!), no MSG, no artificial sweeteners, almost NO condiments at all, nothing with vinegar in it (which most condiments have), no cured meats, no BBQ or steak sauces, no tomato products at all (that really cuts down the choices you can have), breads need to be preservative free...it seems impossible when you suddenly have to change your diet, but believe me, you can do it.

I printed off the 2012 diet recommendations; it's about 13 pages and I have it on my refrigerator so I can look at it any time. They also offer an app that you can buy for 99 cents for Iphone and Ipad.

Mrsppmrxky, I noticed increased problems when I used bubble baths, but I no longer bathe; I just shower. I'm sorry you had such a horrible doctor. I think I would make it a point to call his office and tell them about your diagnosis. Maybe it will make him think next time he dismisses someone so lightly.

If you have overactive bladder or IC, this website is very good at explaining things: www.ic-network.com/diet/#riskfoods

Hi ak angel,

I hope you feel better soon. Before I was diagnosed with IC, i went to 2 different urologists for my bladder problems and always feeling like I had UTI. They found nothing. I went to my ob/gyn and told him what was going on. he is the one that diagnosed me with IC. He did the cystoscopy/hydrodistention which the urologists did not do.