Remaining positive

[monie218]

I just had my second Cysto/Hydro yesterday, along with lysis of adhesions and my doctor said my bladder is worse than it was in February, which is when I was diagnosed. He wanted to know if I had been taking my Elmiron faithfully and I have been....I guess it's not working.:woohoo: I guess the bladder instills are next:confused:, so until my post-op appointment I'm remaining positive and know that one day I will find a way to manage IC for me....I just keep telling my self...I have IC...IC doesn't have me!:tsk:

[Katrina]

I am sorry things look worse. This really is still the beginning. It sucks big time how long it takes to get things under control for some of us....but you will win this fight. There are more options than I know of certainly and I know of too many to list so it will get better. Stay strong!

[ICNDonna]

I hope you begin to feel better very soon.

:grouphug:
Donna

[musiclover]

I got my IC symptoms about the same time as you. Well, maybe around November or December of 2008. I can't seem to get my symptoms under control. I haven't had any hydros done, and the doc hasn't brought it up. I'm considering either asking for a hydro or instills. I am beginning to feel anxious because I'm not seeing an end to this, or if not an end, at least something I feel I can live with and have a somewhat normal life. I hope we can both find a way to feel better soon.

[monie218]

I just had my first bladder instill today and I'm not quite sure if it's working or not....initially I felt worse, so my doc had me to sit in the office for about 30mins to make sure I wasn't having an reaction and after about 15 to 20 mins I started to feel a little better....he told me that by the time I got home we should know if the instills are going to work.....I'm not in constant pain, but I do feel a lot of pressure and some sharp pains so I really don't think the instills are working.....he's said if this doesn't work then we may go the nerve route...I'll keep you posted.

[musiclover]

Hey Monie. I am having my first instill today, also. At 4:00 pacific time, so in a couple of hours. From what I have heard, you won't really know if the instills work until you have done a few of them. I have one a week for the next six weeks. I presume after about 3 of them I will know. Keep me updated and let me know how you feel in a little while. I'll let you know how mine goes.

[cem]

I'll keep my fingers crossed for both of you! :)

[lttlewun]

Please keep us posted on your results! I really hope they work!

[monie218]

since my last post and I must say I've been getting instills 2 to 3 times a month and although the pain is not totally gone, I do feel a lot better. We ( my doctor and I) were never able to find anyone to mix the medicine so I could do home instills, so I still have to drive 1.5hr one way on the days I go to get my instills, but it's worth it to me. But here's the dagger, my insurance company is not going to pay for the medicine, so now it's going to cost me $60 an instill, so now I dealing with do I continue the instills (actually can I afford it, for the frequency I need them to really work for me) or do I look into Interstim Therapy....does anyone use this or have heard of it? Through it all I'm still and will always remain positive!!!!:smile tee

[nanawaggs]

Hi, monie218 & musiclover ~ I'm so sorry you're having problems getting your symptoms under control. I was started on weekly instills fairly soon after my Uro/Gyn diagnosed me by symptoms (later confirmed during surgery) and when my symptoms escalated or remained the same they increased the instills to 2xWeek. The first instill I couldn't even get out of the lobby without being in tears and had to "pee" before we left...maybe 10 min! Now after about 4-1/2 months I can actually go hours before I need to go. I'm on other treatments also, but hang in there to see if the instills work and keep up the great spirit. I'm amazed at my progress.

Hoping you get relief soon,:pray::pray: