Discouraged

[lotsofgirls]

Hi girls,
I read all of the posts on this board tonight for the first time, I am thinking about bladder removal. I am so impressed with each of your stories, your courage and love for other people. I am going to talk to my uro on March 4, because honestly I am just fed up. I suppose through an IC lense I should keep going and pushing against the disease. My frequency is under control since January as I had a hydro in Dec. But nothing works for the pain. Monday night I sat in emergency for 3 hours waiting to see a doctor, got a foley cath in, and it didn't even drain for a long time, I was spasming too badly. Tues morning I pulled it out and went to work, and its been a week of the usual, pain, retention, etc. This morning I woke up in pain, didn't want to even roll over, so I took pain meds. Pain meds made me sick so I took gravol, was out of it all day, slept all evening and now I am just fed up. I used to be such a vital go getter and now my life is entirely defined by this disease. I have a wonderful partner who supports me, and I am thankful for that. I guess I feel like I have a finite amount of time left on this earth, and I am tired of living it fogged out on pain meds, sleeping or in pain. I have tried pretty much everything short of the interstim, and I am not really interested in that. How bad can it be not having a bladder, surely quality of life is important.

Thanks for letting me go on, maybe you could help me to understand how you came to your decisions to have your bladder out, and once the surgery has settled down, what are your expectations and quality of life.

Cath

[julesb44]

Hi Cath,
For me, it was a decision made after 14 years of dealing with ic. I tried every treatment available, including interstim. Nothing helped much or for very long. I have been unable to work the last 2 years. I am a teacher and want very much to return to work. I finally decided , with the support of my husband, that bladder removal was my only chance. It has been 9 weeks now. The surgery was painful and the recovery is long, but I have not had the ic pain I had before. I am still training my "pouch" to hold urine and that is frustrating many days. There is a lot of leaking and unpredictability, but I know I just need patience. Eventually I will only have to cath 4 to 6 times a day. I'm looking forward to that day. In the meantime, I do not need pain pills all the time to function. Good luck with your decision.
Take care, Julie grouphug

[Judith]

Cath, has your doctor brought up the possibilty of surgery? The reason I ask is because many doctors will not do the surgery if pain is the main symptom. The reason I had mine out was because the IC had shrunk it and I had bands of fiber growing inside of it. My capacity by the time they took it out was only 30 cc's. I was also incontinent and wasn't even aware of when I was leaking urine. My frequency was so bad that I had never in my life slept through the night. I only had urethral pain, but from what I have heard from other people who's main symptom was pain, when they had thier bladders out the pain didn't always go away. I don't mean to scare you by saying this, just want you to be aware that surgery may not cure this. I think you really need to have a very long talk with your doctor to discuss all the options. Also be aware that once the bladder is out there is no going back and you are at increased risk for infections. While I do get many serious infections I am still glad I had the surgery. Talk to as many people as you can that have had the surgery before jumping into anything. Judith