Appt tomorrow

[Charisse]

I found a Uro-GYN in my town that I will be seeing tomorrow. I am really nervous because his website says he does the potassium test. Is it absolutely necessary to do this test? They have ruled out any other problem I could be having and I'm in a flare currently and am really scared this test will make it worse. Also he does Heparin instills and says he has success with this. I've heard these are painful too. I am so nervous I'm going to have to take an anxiety pill before my appt tomorrow. The thought of anyone touching me down there during a flare is anxiety provoking. Charisse

[GriffsMommy]

I will say that everybody is different but the PST was really not that bad for me. I wasn't in a flare when I had it but it only burned for a second and then when I told them it hurt they removed it and put in a resue instillation. I went to work afterwards and was fine. Hopefully you'll have the same experience that I did. Good luck

[dancemomof2]

I will be keeping my fingers crossed for you. Maybe ask him if this is the only way he tests for IC. Personally I think there was nothing worse then the Hydro an really hope I never have to have one again.:pray:

[Berkshire Road]

The "heparin" instill is usually heparin, lidocaine, and sodium bicarbonate. Unless you are allergic to one of the ingredients, it is usually very soothing.

[amartaingirl]

How did it go?

[Charisse]

My appt is not until 3:00 p.m. Pacific Time. I'm in California. In the meantime my regular GYN called me back last night and spent over 15 mins on the phone with me. He is very willing to help me and is going to call another urology group and discuss my symptoms. He was shocked to hear how badly I was treated by the other urologist. He agreed that seeing another GYN with the proper equipment to do instills might be better since urologists mainly deal with men. I at the very least felt validated that I'm not going insane. I will be sure to update you guys after my appt tonight. I'm still pretty nervous. Charisse

[Charisse]

Well I'm glad I went to see him although he wasn't able to do the potassium test today. I go back tomorrow at 2:00 and he'll do the test then. He said it really does sound like it's IC and that his recommendation would be to do heparin instills 3 times a week for a few weeks and then once a month if I wanted to keep the pain down. He also mentioned Elmiron orally for 6 mos. I'm scared about the nausea and hair loss side effects of Elmiron. Does anyone have luck with heparin instills only? Thanks again for all your support! This dr seemed confident that he could get me to feeling much better. He said he has many patients with severe IC that have gotten 100% relief from the instills. Charisse

[amartaingirl]

if you are the skinny person in the office..who is always cold...you will experience hair loss.

at least thats me

[Charisse]

Well I am cold a lot and have been told my thyroid is borderline but I'm not thin :( What kind of treatment do you use now that you can't use Elmiron? And did your hair come back? Charisse

[amartaingirl]

I quit the elmiron...and in its place i took desert harvest aloe vera
and elavil at nite
i did great for 8 weeks,,

but the hair was still falling out..after being off it elmiron for 8 weeks
i freaked out..and quit the elavil too
the hair loss slowed
but i flared for 2 weeks

now i am back on elavil, desert harvest..and ive added Atarax