Glad to know I am not alone

[blondie38464]

I have been recently diagnosed with IC, I think I have had it for years and just didn't know it. I even went through 3 pregnancies with it, but for some reason last year I ended up in the hospital for 6 days in major pain with no DR knowing what was wrong with me. Finally, his fall my ob/gyn nurse practitioner mentioned she felt I had it. When I mentioned it to my urologist, he was thought it might sound like it and he would do some tests. Instead of going directly to a cystoscope he did some other tests in his office 1st and then the cystoscope. So I had a very long month in NOV and DEC, but after the cystoscope came back as IC he immediately gave me the options of oral med or DMSO. So I feel grateful that I finally know what is wrong with me (and that it is not in my head) and that I am on a course of treatment. I am also grateful that I am not alone. Someone mentioned this is virtually an unknown disease, but I know 3 other people besides myself. I think it is very misdiagnosed. I have had 2 DMSO treatments and although the treatment was VERY PAINFUL the next day I felt so much better. It was the first time in over a year I have had some relief!! I am curious though, I hear of so many people saying they take something to relax their body, I am in desperate need, between the stress of daily life, motherhood!!! ( I am a single mother to 3 boys) and the stress of IC I stay so tensed up, which is not helping anything. But I am too embarassed to talk to my doctor about this. Is there any medications anyone is taking that I could ask my doctor about??
Thank you so much for your support!! MERRY CHRISTMAS!!

[dyno]

Hi, I am glad you found us, not that you have IC. Here is the link to our handbook,http://www.ic-network.com/handbook/. There is a lot of information in that about treatments and a section on diet. If you are not following a IC diet that might be very helpful to you.
Ask questions as you need and Merry Christmas.

[Cricketmk3]

I take a low dose of an antidepressant for pain. It probably helps to relieve stress too. I know it's impossible to do relaxing things like taking a long, warm bath when you have children to see after. Do you watch your diet? Did your doctor prescribe Elmiron for you? If you can reduce your pain, the stress would be much reduced also.

[blondie38464]

My doctor asked if I wanted to try oral or DMSO. I have a best friend with IC and she said that the oral was very expensive $$$$$$ and took awhile to help. My Dr also said it might take several months to help and I have been in so much pain for so long that I wanted to try the DMSO for quicker relief. So right now the DMSO treatments (I have only had two) which for now I am taking once a week are really helping but besides taking uroblue that is all I am doing. But as I have been reading this posts I am wondering if I need to try something else. I am not sure of the Elmiron and the Elavil, I am not sure of what they are, the side effects and then of course the cost. Any suggestions are gratefully appreciated!
Thank you for your quick response! This seems like a great place for people with IC! :smile tee

[SharonA]

:welcome:

Check out the IC Handbook. Jolene gave you the link. There is a ton of information available to you there. While you are at it, check out the IC Diet, also. Many people have found relief by discovering what foods may trigger IC pain.

Elavil is a antidepressant that, when given a low doses works in the brain to shout circut the pain receptors. Many people have found that it works very well, including me. I have been taking 25mg in the evening for 3 years. It is the med that works for me. I am able to go about my life with very few symptoms. Just remember this, not every treatment or med works the same for everyone. Not everyone experiences the same symptoms. We are all so different and respond so differently to the many treatments out there. :)

[Katrina]

:welcome: to the ICN!

[ICNDonna]

Elavil is very inexpensive. My husband takes a low dose for arthritis pain. Elmiron can take up to six months or more to become effective so if you try it, you will want to continue other treatments in the meantime. I do very well on DMSO.

If you are low income, you might talk with your doctor about doing the paperwork to get elmiron at no cost if you qualify.

Warm hugs,
Donna