very discouraged

[katiejo_27]

I have been taking elmiron for about six months now. When I got diagnosed I changed my diet completely. I went from mexican food, soda, and beer to basically nothing(we have probably all seen list one). I feel like I almost don't even have as much in common with my friends. We use to meet once a week to go to dinner, but there are so very few things I can eat that are on the menu. I also enjoyed having a few beers on weekend nights but can't do that any more either. I was also very active. I snowboarded, wakeboarded, and mountain biked. I am having a lot of trouble doing these things now. I am just so tired all the time. I am so discouraged and don't feel like anything has gotten better. I actually kind of went off the diet for about a week. I need help getting motivated to stick with it. Sex especially. It just hurts so bad sometimes.

[crazy_beautiful]

Elmiron can take about 8 months to start working and feel the full affects of it. Does your doctor have you on any other meds like hydroxizine & pyridum? They kind of all go hand in hand for most of us with other medications.
I am sorry you are feeling so down, and certainly understand losin friends and painful sex.
I really hope things start going better for you soon.

[leelee88]

I agree with Crazy-Beautiful sometimes it takes a combo of meds to help with IC..I would talk to your Dr and see if he can get you on something else..

[katiejo_27]

This is for crazy/beautiful. What are those medications for exactly? The only other med I am on is macrobid. I take it after sex.

[Goldfinch]

Under "Treatments" this site has an overview of the different types of medications and therapies available to ICers. The book by Dr. Moldwin is good too. I would encourage you to do lots of research; there's a lot to learn! There seem to be as many approaches to IC as there are sufferers, and many on these boards have found a combination of drugs that provide relief.

Different drugs come at this disease from different angles. It makes sense when you realize no one really knows what causes IC, so mainly therapy is aimed at relieving the symptoms. There are drugs that function as anti-spasmodics to help calm the bladder and help with frequency/urgency and burning (pyridium, urelle, prosed). There are drugs that are anti-inflammatories and anti-histamines (hydroxizine). There are muscle-relaxants and various kinds of anti-depressants (xanax, valium, Elavil). There are different types of pain-relievers; some that target nerve pain.

I am not on Elmiron but I do know that it can take a long time to work. In the meantime there are lots of thing you can try. You don't say exactly what your main symptoms are, but some drugs can be pretty fast-acting and may provide relief while you are waiting to see if the Elmiron kicks in for you. Don't get discouraged, especially if you haven't yet tried some of these meds! Arm yourself with as much knowledge as you can and talk to your doctor; some docs really need help getting educated about IC. A good doc won't have all the answers but should be open to learning. I've been to 2 uros and a gyn. I'm still looking for the right doc and the right treatment plan! Being on a strict IC diet is indeed a challenge; going to restaurants can be a minefield. Finding out what you can and can't tolerate takes the patience of a scientist doing a long-term experiment! If you are indeed diet sensitive it can really be helpful, though. When I am stabilized and out of a flare I can handle an occasional beer. Not a few, but I can nurse that one for all it's worth!

[Julie B]

Hi katiejo,

Eventually you will get a routine that works for you. I know changing your diet just seems like one more negative thing you have to do for the disease, but I prefer to think of it as "taking control" of something that I actually have control of. Over 90% of IC patients say that food affects their symptoms, so hang in there....and get plenty of rest..........

Gentle understanding hugs.......

Julie