What is normal?

[SherriB]

I am interested in knowing how many days a month would most of you consider to be good days? I notice that approx 2 weeks which includes ovulation and premenstruation are awful. The week of my period I feel pretty good, and the week after is so- so.

Pain and burning have improved with the diet. Frequency and a very swollen feeling are my main symptoms now.Going on 3 months with elmiron. I know elmiron addresses pain, but I'm not sure about frequency....

Also, has anyone had a bad reaction to hydroxyzine pamoate? I've had a lot of itching with my symptoms and was excited to start taking this. I took for about 2 or 3 days and had really sharp bladder pain, so I quit. I talked to my Dr and pharmacist and both thought this was not likely due to the drug, and that side effects would not likely be felt in the bladder. I restarted today because i understand this drug really helps with frequency.

It's my birthday today and I was persuaded to go out to lunch, although I would have stayed in bed left to my own devices. I am so swollen today. I am glad i went out though. I am very fortunate to have a wonderful husband, daughter and a few good friends.

Thanks to all for posting!

[meResque]

I would say I currently have two days a month that can be categorized as "bad." The rest range from okay, but with some pelvic pain, to almost back to normal. I do not have, nor have I ever had, many bladder symptoms. I also have endomitriosis, and the day of, and the day after my period are very painful for me; I do use Vicoden on these two days. Elavil was my "miracle" drug... I started noticing more and more good days the longer I've been on it. I have been on Elmiron the same amount of time as you. I am also on hydroxyzine and do not have any issues with it.

I hope you had a lovely birthday.

[glass1/2full]

What is Normal

I know that each of us is different, but I can tell you that when I decided to pursue the InterStim is when I realized every day was bad. In the beginning, I would have only 13 bad days/month (premenstrual/menstrual). Gradually, that crept up and there were no good days left. I tried various medications (although not that which you reference) and therapies and none helped with giving me more good days (pain, frequency, and urgency wise), but the Interstim trial *did* take me from 30-40 voids/day to 12. That was a major triumph, and I hope it will hold during the permanent implant although I'm going in eyes wide open and aware of the challenges.

I think that many of us would tell you that premenstrual and menstrual pain typically involve flares and not-good days, but that *doesn't* mean that you're not hurting (badly) and that *doesn't* mean that you shouldn't pursue every therapy that works for you and that works with how you want and need to live your life.

I wish you all the best: this disease is extraordinarily draining, I know. It does not have to be life-defining (although it often feels that way), but it can take a tremendous amount of support to help it from becoming that kind of defining disease. I have come to accept that it will never go away, even as I have come to accept that there are many, many things I can do to try and keep it from overpowering me. It has been a long road but being able to read this forum is one of the things that helps, so I thank everyone for that.

PS Please do not read my post as an endorsement for Interstim. I very much respect that it is not for everyone and that many are very much opposed to it -- it is a choice my family and I have made while recognizing that everyone is different.

[cmclien]

Glasshalffull - "but the Interstim trial *did* take me from 30-40 voids/day to 12. That was a major triumph, and I hope it will hold during the permanent implant although I'm going in eyes wide open and aware of the challenges."

I just wanted to say those are some spectacular results and I hope the permanent implant goes well. My mom is going to be doing the trial soon though she won't research it at all and is just going ahead with it. I don't know if its her age or what but she thinks its odd that I research so much about IC and/or anything else I have and she thinks I should just trust the doctors. Maybe an old school of thought!