UCPPS - Prostatitis, Interstitial Cystitis Forum

I'm 45 and was diagnosed with chronic prostatitis 3 months ago. I went through the usual uro workup with 8 weeks of various antibiotics and testing with minimal relief of my symptoms and GI problems as a result. I researched the web literature and read 'headache in the pelvis.' I then found a urologist who understood my condition. He started me on a round of prednisone to calm my inflammation and got me started in physical therapy. His physical therapist is very knowledgeable the Stanford approach and has helped minimize my pain symptoms greatly. The biggest challenge over the past 3 months (especially since stopping prednisone) has been an interrupted sleep pattern where I have hot flashes and facial flushing every 2-4 hours. Neurontin quells the symptoms, but my GI tract doesn't seem to like neurontin (abdominal pain). I physician tested my free testosterone level and it is 'low normal' My uro is hesitant to treat right now and is doing other testing to investigate.

Sounds like you have that rarest of beasts: A Uro who understands this condition.

I would heed his advice just now unless it's causing you major problems.

I too have wakefulness throughout the night. Since I was diagnosed with prostatitis, I've had ultra-vivid dreams and I wake up 2 to 3 times per night (not because I have to go the bathroom). I used to be able to sleep 9-10 hours no problem, and for the last 4 months, I'm lucky if I get 5 hours of sleep without waking up.

Agree with sleeper service when he says it is very rare to find a urologist who understand this condition.

I have never heard of a Uro refering someone for physio therapy for this. Sounds as if you have a good doctor.

I'm being treated for low testosterone. Finding a doctor who knew anything about it was a lot like looking for one who knew about CPPS. Hard to find.

I finally went to a naturopath who specializes in hormone balancing. Just raising testosterone is only useful if levels of estrogen and other hormones are in line. It isn't good enough to just get testosterone up for most of us. One big problem for me has been lowering SBHG, sex binding hormone globulin. It tends to grab onto my testosterone making it unavailable.

Have you had estrogens or SBHG tested?

JimW wrote:He started me on a round of prednisone to calm my inflammation and got me started in physical therapy.

Please tell me what effect the Prednisone had. I've been thinking about getting my Dr. to prescribe me some to try and break the pain/inflammation cycle that my PT has not been able to overcome in the slightest in the last month.

Thanx,
Joe

Dell4444 wrote:I too have wakefulness throughout the night. Since I was diagnosed with prostatitis, I've had ultra-vivid dreams and I wake up 2 to 3 times per night (not because I have to go the bathroom). I used to be able to sleep 9-10 hours no problem, and for the last 4 months, I'm lucky if I get 5 hours of sleep without waking up.

This happened to me when I first starting getting symptoms and after taking rounds of antibiotics. I've gradually been sleeping better and better and not having the ultra-vivid dreams anymore as I've gotten off the AB's. Not sure if it was the meds or the stress from the condition or a combination of both. I still wake up to go to the bathroom once per night, but I usually get 5 hours of sleep before this happens now.