I am new too!!

[armywife]

Hi all,
First I want to thank you all for the great information you provide. I was diagnosed 2 weeks ago during a hysterectomy/ cystoscopy with hydrodistention. I was on morphine when my dr. gave me the news. I didn't realize that it is a life long illness until I went for my 1 week f/u! My dr. was great in giving me handouts(from this website). He has put me on elmiron 100mg 3x a day. He is not one for pain meds so I was wondering what is the best to take other than Percoct. I think I am more worried about losing my hair than anything else. It is very overwhelming. I go back to work Monday but I am afraid that I won't be there much longer. I work in a school and I have already used up all my sick days. I thought about disability but I really don't want to do that. I love my job but it sure is a pain leaving the classroom every 30 min or so to use the bathroom.
The hysterectomy went well but now when I walk I have to hold my abdomen in to relieve the pressure and pain that I feel. I also am unable to go to the bathroom without the use of laxatives. I also have IBS but this seems odd to me. I went to my GP Wednesday and he is running tests for Lupus, THyroid, RA etc. I have had extreme fatigue for over 2 years. I guess I just want answers so they can "fix me". Any words of wisdom you can give would be great. Thanks!!

[ICNDonna]

If you just had a combination surgery two weeks ago, it's very soon to think about returning to work. Have you thought about working part time for a while until you get the IC under control.

Try not to worry about losing hair. I usually suggest to anyone starting elmiron to first take a clean hair brush and brush their hair; then comb the hair out of the brush and put it in a clear sandwich bag. That way if you think you are losing hair, you have something for comparison. And only a very tiny percent of patients on elmiron lose any hair at all. There's also the fact that when you stop taking the med, the side effects stop.

Warm hugs,
Donna

[SharonA]

:welcome: to the ICN...

It sounds like you have been reading the information available on this site. Along with everything else, have you taken a look at the IC Diet? Here is the link: http://www.ic-network.com/handbook/diet.html Following the diet, you will learn what foods/drinks, if any, are contributing to you symptoms. Many here find much relief from the symptoms with the diet. Take a look at it and try it for a few weeks. It could help. :):):)

[GriffsMommy]

I agree with Donna, only a small percentage of people lose their hair. I was on it for almost 11 months and never noticed any difference with my hair. I stopped the Elmiron since I didn't see any improvement and it was breaking my bank account to pay for it. I had NO side effects whatsoever from this med. Are you prone to side effects with meds? If so then I would keep an eye on it but def try it as it helps many people. I don't normally experience most side effects with meds or they go away pretty fast. I hope you start feeling better soon.

[lisabar36]

Hi, I also suffer with fatigue, I wanted to pitch in and say my new Doctor told me he expected me to be fatigued, but they did rule out anything else first! Thats very improtant! I have been overly fatigued for years now but he said its because I lived with so much pain, I have had IC since 1999, well thats when I was diagnosed, and I had off and on pain since. I am extremely sensitive to meds, and I been on the Elmiron over 2 months now and I have not had any side effects from it. Good luck to you!

[Briza]

Hi and welcome! You'll find wonderful advice and support here! I second Donna on trying to take a bit more time off from work considering your two surgeries...I went in part time after my hydro, since I had a longer than expected recover, but still needed money, so that worked out well for me. Best wishes...I hope you get the treatment and relief that you deserve, and there are also lower level pain meds than Percocet that your GP, Uro, or your GYN may be more willing to presribe and may be very effective...Tramadol, Darvocet, Tylenol 3, Vicodin (being supposedly the strongest of the one i listed). Just somethings that some of us take for pain relief....you should discuss pain relief with the doctor you are most comfortable with, and if all deny you pain relief, request a referral to a pain management clinic/doctor. That is often the best way to got fo the longterm. And the IC diet is an absolute must if you haven't tried it yet...it does take time, trial and error to determine your food/bev triggers, especially if you are in pain most of the time right now. But if you stick it out you very well may find that your diet is not as restricted as it seems at first. That has been the case with me, and as long as I avoid my triggers, I usually don't have food triggered symptoms or flares. I also ways very traumatized when I realized there was no for sure IC cure, that it would be a chronic condition. Was very sad and freaked out, but with time and trial and error with different treatments and diet, my symptoms are for the most part easily managed. I wish the same for you. Good luck :)
Bri

[leelee88]

Hello and :welcome:To the ICN

[mary124]

welcome:

I agree with Donna about the hair loss. I have been on Elmiron since 1997/98 whenever it first came out, and haven't had any side effects-including hairloss.

[dverba]

Take a deep breath and take the great advise members here have to offer. They have kept me sane, well for the most part anyway. Stay strong.