Newly Diagnosed

[Michelle25]

I was diagnosed yesterday with IC. I've been having the pain for about 4 years now, but have always thought it was an ovary issue, since I had a large cyst that went away, but the pain never did.. I finally had enough of the pain, and went to see my OB-GYN, who thought it was endometriosis. I had a laparscopy last week, no endo was found. I explained my urinary issues to her, and she gave me a questionaire that is backed by Elmiron - my score was 33, she said anything above 18 is probable for this condition. So she says this must be pretty severe for me. She prescribed me Elmiron, but my insurance doesn't cover it, and its $295/month. Can't afford that. I have to wait til Monday to call my docs office and see about another medication.

In some ways I'm pretty upset by this.. I mean, I'm glad I have the diagnosis, but I'm so exhausted from not getting any good sleep from having to get up more than 5 times a night. I'm just tired of feeling like I can never completely empty my bladder. The feeling of needing to go is very uncomfortable and overwhelming.

I'm glad to have found this board, there's a lot of good information here. Thanks. :)

[leelee88]

Hello and :welcome:

I can't understand why your insurance will not cover Elmiron.. That just makes me mad..

There are alot of great people here on this site and they will try to help you as best as they can. I know when I was first Dx they were a BIG part of my support and recovery.. I am going to give you the link to the ICN Patient Handbook. It has some very helpful information in it . I would also suggest you take a look at the IC diet and try to stay away from all the problem foods. That has really helped me..
Well heres the link. If you need anything just ask..


http://www.ic-network.com/handbook/

[SharonA]

Hi Michelle and :welcome:to the ICN.

[Babs RN]

I think alot of us have traveled a diagnosis road like that. Welcome to the ICN and please let us know how we can help.

Hugs,
Barb:welcome:

[Berkshire Road]

:welcome:

One thing you can do is to file a grievance with your insurance company. Since Elmiron is the only medication that is FDA approved for this condition, you do have some grounds. Sometimes it works. I got my insurance to give me partial coverage, finally.

There are also some alternatives that people have found helpful. Look up Cystoprotek, CystaQ, and Aloe Vera, just to name a few. They are herbals that appear to act in the same way as Elmiron, by helping to repair the bladder lining. You can find a lot of information and discussion on these alternatives in one of the forums further down the page on this site.

I hope you find something to help you. I've been where you are (and it took 9 years to get my diagnosis), but I am doing much, much better now. So there is hope. :)

[Michelle25]

Thanks, Walmart did suggest that I contact my insurance and see about them approving this med for me, but it could take 2-3 weeks.. I just wish there was something for immediate relief, but then I guess that would take a miracle..

[lan]

Hi Michelle - A medication called Elavil has helped reduce my pain and frequency - and it works rather quickly. You can read about it on these boards and ask your doctor about it. Others have found Atarax to be helpful (I have not tried this one yet but you could ask your doctor about it). Many doctors prescribe Elavil and/or Atarax along with Elmiron. The IC doctor that I saw did not even prescribe Elmiron for me because he said that it only works for about 30% of people and it could take up to 6 months to see improvement. I am hoping that you will find a treatment that makes you feel better. Keeping you in my thoughts...Linda