Diagnosed 2/12

[sailawaygrl]

Hi all,

I was diagnosed on 2/12 with IC after much pain, 2 cts, 2 cystoscopes, and an mri, I even let them test for std's just so someone would move on and find out what was going on with me-- finally a potassium sensitivity test that caused tremendous pain gave me the answer that I had been looking for. So now I know what I have and have started elmiron, I also take urelle as needed and Lortab 10 twice daily. I am fortunate that I was able to take a short term medical leave from work. I am trying to stick with the diet but I am a picky eater so I am having a hard time and find that I am hungry much of time and can't figure out what to eat. Finding this site has been a blessing for me, I have ordered two recommended books and can't wait to get them.

My uro just gave me perscription for the elmiron and said come back in three months for follow up. My gp has been helping me with pain management so far, but I don't know if i should continue to see gp for help or should my uro do that. I don't want him to think all is going great when it isn't. I am still having pain and spasms, do most people have to use two doctors like that? I feel so bad asking for pain meds and try to be very careful to use them only when necessary. However I am hoping to go back to work in mid March and I am afraid I might need extra meds to get thru the day without pain.

Any help or advice would be much appreciated. And thanks again to everyone on this site just reading all your posts have helped me a lot.

Sandra :pray:

[leelee88]

Sandra, Hello and :welcome:

I am glad you found us.
You know there are other medicines out there that also help with IC pain that are not narcotics. Like Elavil, Tofranil, Topamax, Lyica, Atarax. Also some IC patients gets some relief from muscle relaxers.

The Elmiron may take awhile so please don't get discourage if you think it is not working because it sometimes can up to six months or longer to feel the effects from it.

You mentioned something about your diet. I feel strongly that staying away from the bad foods play a very important role in my pain managment. Well I am glad you found. I hope you know your not alone and if you need anything, please feel free to ask..

[mlzippy7]

Hello and :welcome:!! I think most people see several doctors. I have a couple different issues but I currently am seeing 10 different doctors on a regular basis. I see primary, pain, GI, uro...the list goes on!!

[born2swim]

Just to answer your question about if your uro should give you the pain meds or you primary care physician (PCP)... I would say go with who you are comfortable with, can get into see them when needed, and will give you pain meds (you'd be surprised how hard it is for some people to get pain meds). My uro works with my internist who works with my GI doctor, etc. My internist will give me a refill of all meds I need and if I want to try something for my bladder, I just ask her to give me the script instead of my uro. I love my uro, but I see my internist more often, so I ask her instead. For example, I thought I'd try Lyrica but I just saw my uro and figured, since I'd see her, I'd ask her about it. She also prescribed my Soma. If I need more Ultram, she prescribe that as well. So... just work with your doctors and the more they overlap and communicate, the better!

BTW, sorry to hear you have IC. It is a great relief to get the dx, but also a sad day as the news is not "curable". Welcome to ICN! :welcome:

[sailawaygrl]

Thanks for the responses, I also have PCOS, diagnosed when I was 18. So I pretty well have meds under control for that. But IC sounds like I am going to need to get organized more!! A lot to take in and research, I have always been pro active with my health but I'm seeing this may take much more work. It seems there are many options for treatment. I see all the different meds people are taking and I don't even know what they are for.

I did some research on hydroxizine and found that the active ingredient in it is a form of the active ingredient in Zrytec, only zyrtec isn't supposed to cause drowsiness. I have been taking that, it seems to be helping. I have excema on my hands that was very bad recently but seems to be better now also.

Thanks for the welcome,

Sandra

:puppy:

[llwd]

I've been taking hydroxyzine for about 4 months. It caused drowsiness for about a week. After that, there has been no drowsiness. I've been taking Elmiron for about 3 months. I'm not worse, but I'm not better either. If you take it, give it time. Did the urologist only prescribe Elmiron? I think you definitely need something else while waiting for it to work. Specialists, in my experience, are difficult to see on a regular basis. If your GP is willing to work with you and takes your pain seriously, then use the GP. If the urologist doesn't take your pain seriously when you see him, maybe you should look for another urologist.

Lori