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Hi! I just wanted to post something again. It’s almost two years since my neobladder surgery now. I am trying to stop using an alarm clock to wake up in the middle of the night. I now wake up by myself when I need to go. I need to see if I actually keep waking up, since I probably cannot last an entire night without leaking, and I also need to avoid extending the bladder size.
My main problem these days is fatigue. I had hoped that it would improve over time, but it seems to get worse. I am able to cope at work but evenings and weekends I am exhausted. I am not sure if it has any relation to IC or the surgery, but my doctor is adamant that this is a typical outcome after so many years of terrible illness.
Apart from that, I consider myself healed from IC and live happily with my 500ml neobladder.
I have a friend whom I met at a IC coping course at a local hospital. She is going in for a neobladder tomorrow. I hope everything goes well for her.
Have you thought about having a sleep study? I was having a severe sleep problem and had a sleep study done --- what I found is that I have severe sleep apnea --- when I had the test done, it recorded an average of 74 incidents per hour. I now have a bipap machine (similar to cpap) and last night I averaged 3.5 incidents per hour --- and I no longer go to sleep trying to watch favorite TV shows. It really has helped with my fatigue.
By the way --- thank you for the update --- I'm so glad you're doing well.
Donna
Stay safe
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool
Thanks Donna, but the problem is not sleep but that I need to empty the neobladder once at night. I used an alarm clock at 3:00am for almost two years, but recently I find that I wake up when I have to go. Which is very nice as it feels more natural and not so «forced» as with the alarm.
Male (born 1970) living in Oslo, Norway. Diagnosed (cysto) with BPS/IC with Hunner's lesions on 23 Nov 2015 after many years of pain. Symptoms: severe bladder pain, bladder cramps, urethral burning, painful urination, rectal spasms, acute retention (requiring self catheterization). Treatment: Successful neobladder surgery on Dec 7, 2018.
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