Newly diagnosed and have questions

[TuneWah]

A year ago my urologist diagnosed me with UAB and after 6 different medications, I was still dealing with a lot of pain and frequent urination, especially at night.

Then my insurance changed and I was referred to a Urogynecologist (sp?) who literally saved my life. After a few tests including a cystoscopy he diagnosed my IC. I had all the classic symptoms and looking at my bladder on the screen I could see the pinpoint hemorrhages clear as day. He has started me on DMSO treatments (I have 5 left to go).

What I'm dealing with now is changing my diet. As a single person, I rarely cooked and ate out a lot. It's a difficult transition for me, but I think I'm getting the hang of it with some help from the usual IC cookbooks.

My problem now is there while I'm experimenting with my triggers, I occasionally eat something that is a trigger. How do I deal with the pain? I'm having a little difficulty with my doctor. I love him and he is tops in the field of urogynecology but he's difficult to reach and he hasn't helped me with how to deal with the pain. Can anyone give me some suggestions for pain relief? I love ThermaCare heat pads (I should buy stock in them!) but they are not always enough. Prerelief is not much help although Tums sometimes does work.

Also, my birthday is tomorrow and I'm going out for dinner for the first time since my diagnosis. I've got a lot of anxiety on what to order to eat! What are some safe bets? I was figuring on Italian because I could order pasta with some pesto or something along those lines.

Sorry for the long message but I'm a little at odds with this new diagnosis. I will definitely pin down my doctor one day but he's out of the office a lot and we keep missing each other.

Thank you in advance for any advice!

[Goldfinch]

Hi and happy birthday. I hope you have a nice dinner out, but I know that eating out can be stressful.

You are getting DMSO instills, but what other meds are you on? I assume you meant OAB, and that you tried a variety of anti-spasmodics. For IC that isn't usually enough to do the trick, although it can help in combo with other things. There are meds such as pyridium (phenazopyridine) and the urinary tract antiseptics like Urelle which help relieve flare symptoms. I used both a lot to help manage my symptoms in the beginning. Ask your doctor about some of these drugs. You can get pyridium over the counter as AZO in any drugstore. If your doc hasn't discussed Elmiron, Atarax and Elavil, those drugs are first-line drugs for IC, and worth trying to see if they help. The forum "Treatments for Mild IC" has lots of good info about a variety of meds.

As for the diet, my approach was to start with a very strict elimination diet and then very carefully add stuff back in: like a couple of bites of a new food one day, then a few bites more the next day, then a bit more a third day to test each food out, one at a time. It might help to have AZO on hand in case of a flare. It's very frustrating, no question, but finding a safe diet can really help.

I don't think I ate out for about eight months after I first developed bad symptoms! Italian food works if you can avoid the tomato sauces. I don't eat red meat very often, but going out is a good opportunity to eat a steak. Restaurants that have grilled entrees are good--a simple piece of grilled fish or grilled chicken. The hardest type of restaurant for me is Chinese or Thai or Indian. If it isn't the soy sauce it's the vinegar or the spices. Japanese food can work, because many dishes don't actually have soy sauce in them, but rather use it as a dip. Sushi can work that way.

[L. Thomas]

I have never had DMSO but I do lidocaine/heparin instillations as needed. When I have any of my symptoms I do an instill and the instillation takes care of everything.

[MommaWuzzi]

I had one DMSO instillation and never went back... Never will, either.

It sounds like you aren't doing any pain management? That can be rough, and you might have to insist. I actually have ended up doctor shopping because I didn't like the first one (his office was frequently unresponsive/unreachable - didn't return messages, even). Right now I am doctorless until May 22, and I am actually okay with that. And honestly, if I don't like this doctor, I'll go to a urologist. I am not going to deal with a chronic illness with a doctor who doesn't listen to me. Life is too short for that kind of hassle.

Let him know that you temporarily, until symptoms are under control, need access to SOMETHING to help you cope with pain, and make sure your doctor knows that the pain is seriously impacting your life.

Personally, when my pain is bad I live on my couch with a heating pad (bladder friendly foods and percocet is my friend). I have yet to reclaim any real level of functionality, but enough good stories make me hope that it's waiting for me somewhere! :)