something i really don't understand

[holles]

i started elmiron last week. have had flares off and on for the past few months. but i could always figure out the cause and eliminate it. however, after starting elmiron, i started having a really bad flare. it's day 10 of the flare and of the elmiron. i know it's a coincidence, but it's really making me mad.

anyway, i thought maybe stress was the culprit. i saw a new fertility specialist yesterday, and while we were there, i had to go to the bathroom 3 times. :rolleyes: but the flare never ceased. it's just getting worse. and now there's visible blood. so i'm just aggravated.

i guess i need to destress some more or something. yikes. i hope it goes away. the doc gave us a little hope fertility-wise, so maybe that relief will help with this. i hope.

just had to vent a little.

[kadi]

I'd say call your urologist, especially let him/her know about the bleeding if you think it's actually in your urine & not vaginal from pelvic exam or tests etc.. I actually got worse on Elmiron. Started with a weird tickling feeling in my bladder which turned into feeling like I had to pee all the time. I developed even more food sensitivities on it too. I took it for 2 months and am definitely better now that I am off it. Within a week I felt better being off it and am still not quite back to where I was before I started it. (Hard to know if that's just IC progression because I've only had IC for 8 months or if it's taking awhile to recover from Elmiron).

I am allergic to sulfa. Most patients with sulfa allergy can still take Elmiron, but the company that makes Elmiron did tell me a small subset of sulfa-allergic patients cannot tolerate it...

[Babs RN]

Holly,
I would talk to your uro and make sure it is not something else. While I almost always have visible blood, if I have anything that changes, I always rule out another stone or infection.(Especially since I can eliminate my period as a blood source) I'm glad you got some positive fertility news--we tried for 5 years to get and stay pregnant and when I had given up hope and put in adoption paperwork I wound up getting pregnant and carrying to term...one ovary, one tube, what I had been told was a huge endrometrioma on my remaining ovary and one of what I thought was the worst periods of my life...Lindsey is now three. Keep the faith...my endo went into remission for 2 1/2 years after I had her too.

Take care,
Barb;)

[holles]

thank you both for the replies. i appreciate it. the positive pgcy story gives me hope too. we've been trying for 8 years, and it's really starting to get to me.

anyway, the doc yesterday didn't do any exams. only talked. so i know that the bleeding isn't vaginal. i wonder if it does have something to do with elmiron though.

i'm thinking about giving it another week or so. then i'll see. i'm also a teacher, so it could be end of the year stress. maybe.

i just hate trying to go back and figure out if i've eaten anything that caused this. so annoying. been pulling the old "why me" thing today. :rolleyes:

thanks for the replies though. i've felt a little better tonight after working out. exercising really helps somehow. don't understand it, but it does help. weird.

[Dixiefireball]

sending you tons of hugs and prayers and best wishes
Rhonda

[kadi]

Me too (ditto what Rhonda said!).

If you ever want to PM me about teaching stuff, you can:) I've been a teacher for 13 years-(10 years elementary, 1 year junior high, 2 years high school)!

[Babs RN]

Holly,
The reason exercise makes you feel better is that the body releases natural endorphins, the body's morphine. I'm glad it helps---as far as the infertility stuff---been there and will be here to listen if you need me too. PM or e-mail me and I will be glad to call ya as well. I delivered Lindsey a month shy of my 30th birthday. I have been through miscarriages, fertility drugs, bed rest---frank talk doesn't offend me. We are the same age so I'm sure we can relate pretty well Remember this line "We don't know why we had to spend our Saturday telling you who we are...you see us in the simplest terms...Just wanted to give you something to make you grin.

Love,
Barb

[dyno]

Holly,
I am another one that was on Elmiron. I stayed on it for a year. At first when I started it I had terrible itching. Then I did fine. Then the last 3 months or so I was on it, I was having a lot of flares, and I got sores in my nose. So I did my own experiment of going off it for awhile, the sores would clear up and then I would start it again and the sores came back. I went off it again about 3 weeks ago and I am definately doing better without it. I do feel it helped me some but it was time to get off it. I also started getting very bad headaches. No headaches since I have been off it.

I am also allergic to sulfa, don't know if that had anything to do with it.

I would discuss this with your Dr. and see what he says. Hope you are doing better soon.:)