Neverending pain!!! - Interstitial Cystitis Network Support Forum

Janelle · 04-30-2002, 12:13 PM

It's been awhile since I have been on these boards,I have had ic for 5 yrs. now and I have tried all the treaments, I am Elmiron right now and Oxycodone and Paxil.

I went to my uro last week and asked him about bladder and uretheral removal and he said he thinks it would be a good thing to consider in the near future. I dont like the thought of any of this and I can hardly believe it may come to surgery, the Dr. said they will have to do a hysterectomy in order to reroute everything.

I have two little boys 7 and 5 and It is getting harder and harder to care for them being in so much pain.

Anyway, my life feels like a nightmare, the only peace I have is when I am asleep and I wake up and the nightmare begins again.
Sometimes I wish I could die, but my family needs me!!! Does anone have some advice for me???

Take care, Janelle

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***ICNDonna*** · 04-30-2002, 03:23 PM

There are several people who post regularly who have had their bladders removed. You'll find their posts on the Surgery board. I will also transfer your question to that board, where you are more certain of replies.

My only advice is to explore the possibilities, do your research, and work with your physician to make your decision --- a second opinion from another physician might also be a good idea. It will possible give you a more positive feeling about whatever decision you make --- and no reputable physician will try to discourage you from getting the second opinion. I'm sure your uro will be happy to provide medical information to help with this.

Whatever your decision, please know I wish you success in finding the best solution for you.

Warm hugs,
Donna

***ICNLesa*** · 05-01-2002, 01:33 AM

(((Janelle)))

I'm sorry you are in such pain and wish I could take it away for you. While you explore your pain issues with your doctors, don't forget to pamper your mind and soul too. Living with chronic pain wears on us physically but I think we often forget to nurture the emotional wear as well. It's just as important. Reach out when you need to and know that you WILL get through this.

ICNLesa