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CloverGirl
02-05-2008, 01:56 PM
I had a dream one night that I went to the doctor for something, and they said I had five days to live. Then, 5 days after that, I was diagnosed with IC, January 15, this year by my GYN. I was going doctor to doctor, in and out of useless visit after useless visit, had a laprascopy for my pain, tests, but never the PST until this new doctor a few friends from work were raving about. He scheduled me for the PST test, I took it, and tested positive. He walked into the room, said, 'Well, ya flunked your test,' and handed me a handout on Elmiron, on the back of which was a list of all my favorite things I couldn't enjoy anymore. Sounded like my normal life that I had known was in a sense over, at least for a while! 5 days to 'live'... kind of sick, I think! I've found this all really overwhelming. I feel like such a wuss though, reading about what some people have gone through and still are. My doctor believes my case is mild, and thinks there is a possibility for my case to be over in 3 months with my first bottle of Elmiron. Is that even possible? It sounds so much like this disease is usually pretty lengthy in having.
I've had it for over a year now, that I know of. In the past few years, I'd noticed I had to pee, a lot, a lot more than anyone else. Then the pain started a little over a year ago, and got so bad I would be at work and cry in the bathroom because I couldn't stand it. It was horrible. The doctor I was seeing was pretty terrible--he put me in surgery before trying the PST. Then on pain meds, and said, well, there's nothing more I can do for you and sent me on my way. It went away gradually shortly after, for a month or so after I'd had my laprascopy, then came back with a vengeance, and now the pain is pretty consistent. I always knew it was getting worse when I would start to have throbbing pain at night (and of course the constant trips to the john every time I'd turn over) and wake aching in the morning, when just sitting at work was miserable and my heating pad was my best friend.
A lot of the time it's the pain and then a lot of pressure, it feels like my bladder is pushing its way out. Or like a gnome is dancing on it, or something... And that part of my abdomen bloats...is that normal IC stuff?
I get kind of concerned sometimes that my doctor so far has just been my GYN. I don't know if he is waiting to see how the symptoms go with the Elmiron to hand me over to a Uro, or what. I've heard nothing but great things about him, and he had helped me greatly thus far.

noirjezza
02-05-2008, 03:30 PM
While I too was first "diagnosed" with IC by a GYN, I do feel that urologists have the upper hand on dealing with the problem. I would look for one that specifically treats women's problems. This site has wonderful info about MD's and clinics that can help you- look under the "quick links" and "locate a provider." Elimiron has worked well for me- I wish you the same luck. :)

formom
02-05-2008, 03:57 PM
Welcome CloverGirl!:hi:
Everyone is different when it comes to their doctors help. If you trust your Gyn and he/she is helping you, then see what happens with the Elmiron. Keep in mind, it takes a few months to kick in, although for me, it started to work after like 2 months. If you feel it does not help and your Gyn has no more to offer you, then you can look into a Uro or Uro/gyn. There is alot of help on this site from the diet to locating doctors, and especially all the wonderful support of everyone on here!!!:)

Good luck to you and :welcome: again!!

ICNDonna
02-06-2008, 03:35 AM
I'm glad you found the IC Network. :welcome:

An IC diagnosis can be overwhelming at first, but after a while it can become a routine part of life. I know which foods and drinks are a problem and as long as I avoid those I do pretty well. Hopefully the elmiron will help, but it can take up to six months or longer to become effective so don't hold strong expectations that it will work sooner than that.

Right now there isn't a "cure" for IC, but most ICers do find effective treatments and most of us do pretty well.

Warm hugs,
Donna

dancemomof2
02-06-2008, 03:39 AM
:welcome: to the ICN

GriffsMommy
02-06-2008, 03:48 AM
:welcome: to the ICN. The first thing I noticed about your post was the fact your gyn said your case could be over in three months. IC is not something that can be "over," Many people do find the right treatment for them though and do go into remission but the IC itself is not gone. I know the diet can be overwhelming at first. I would suggest that you look at the diet listed in the patient handbook here on the site. There are a lot of foods that are listed as usually not okay. Most people start with the usually okay foods and then once they start feeling a little bit better start adding in new foods very slowly only one at a time. You may find that some of your favorite foods you are still able to eat. IC is so different for everyone and though one person might be very diet sensitive the next person may be able to eat most of the things listed as usually not okay. It's really up to you if you want to stay with the gyn or look into a uro. More and more gyn's are treating IC so you may not need a uro, it all depends on the kind of care he is providing and if you feel like you need a different dr who has more knowledge of IC.

leelee88
02-06-2008, 05:47 AM
:hi:And :welcome: to the ICN

Sounds like you have been suffering awhile now. :(

If I were you I would be looking for an IC specialist..There is a list here by state in our ICN Patient Handbook.

Also I truly believe in the IC diet and staying away from all the bad foods. That list is also in the Patient handbook.

There is alot other medicines out there for IC along with Elmiron that can help with IC. I hope things start getting better for you soon..

CloverGirl
02-06-2008, 01:17 PM
This site and everyone on it is so helpful! It's nice to have somewhere to go with questions or concers, and others who can offer such support and empathize, and share perspective.
I think I may poke around and see about going to a specialist who can help a little more specifically to my needs, hopefully one is reasonably close.
I am having trouble finding a good pain reliever though...I had been on Darvocet a while back, but after a while it started giving me bad headaches. Then I was on Oxycodone, but that wasn't real fun to be on at work, and when I took it consistently it messed with my digestive tract. This doctor put me on Motrin 800's, but I have to say after taking one today, I was okay for the first few hours, and then I started flaring, and I've been hurting all day since. Not sure if it was my muffin (though I haven't had problems with it before) or the med...though, I know Ibuprofen can cause some people to flare. I hadn't noticed it causing too many problems with me in the past, most I noticed was that it never really helped. Though that was in smaller doses of course. Does anyone have any recommendations?
Thank you so much for the kind welcome! :D