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 My experience 
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Joined: Tue Jul 28, 2015 9:45 am
Posts: 13
Post My experience
About three years ago I was diagnosed by a urologist with non-bacterial prostatitis. Symptoms included frequent urination, perineum pain, pain over the pelvic bone, feeling like urine was 'trapped' in the urethra, back ache, and a general feeling of being unwell. Ultrasound was normal. No sign of infection from urine cultures. Prostate felt normal on exam. Despite that, I was prescribed Cipro and was on it for about 6 weeks. Over that period, symptoms improved slightly, but never went away. I was left feeling defeated and frustrated.

Over the course of the last few years, and after reading this forum, I did a lot of research of my own. I read the usual books -- the headache in the pelvis -- and they described my experience almost to a tee.

Now, years later, I am almost entirely convinced that my symptoms were (and still are) caused by some sort of muscular/skeletal reason. The more I stretch, the better I feel. I go months with virtually no symptoms, but every now and then I still get flare ups. These flare-ups almost always occur when my muscles and my lower back are tight.

I have also been taking a supplement called Relexin that my urologist recommended. It seems to help things out as well.

Just wanted to share my story for others to read in the hopes that it might be helpful.


Tue Jul 28, 2015 10:06 am
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Joined: Thu Sep 04, 2014 11:39 am
Posts: 609
Post Re: My experience
Your story is really helpful.


Tue Jul 28, 2015 11:44 am
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Joined: Tue Jul 28, 2015 9:45 am
Posts: 13
Post Re: My experience
Just following up on this post. I'm now day 3 of a 'flare up' which again came out of nowhere. I'm thinking about trying to find a physiotherapist or chiropractor in my area who has experience with pelvic pain of this nature. I know a lot of you have had success with this kind of treatment -- wondering if anyone can share (or reshare) their experiences with physio.


Tue Jan 19, 2016 1:00 pm
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Joined: Thu Jan 22, 2015 9:35 am
Posts: 192
Post Re: My experience
Have a search for UK sufferers posts about he's experiances he has documented what worked for him and its very informative.

My approach has been slightly different more strength training focused some mobility stuff and supplements. My theory is my muscle problem is caused by weakness either from over or under use of various muscles. My approach is to strengthen and stretch.

But look at he's post its got lots of good stuff in there.


Wed Jan 20, 2016 6:56 pm
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Joined: Wed Jan 20, 2016 7:51 pm
Posts: 2
Post Re: My experience
did you ever have your PSA tested?


Thu Jan 21, 2016 1:38 am
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Joined: Tue Jul 28, 2015 9:45 am
Posts: 13
Post Re: My experience
Yeah I think the muscular explanation makes most sense for me. Today I went to see my doctor about the recent flare up. He did a urine culture, which I'm almost certain will come back negative, and gave me a script for 6 weeks of cipro. I've made an appointment to see a pelvic floor physiotherapist but in the meantime I'm debating what to do about the cipro. Take it with no proof of infection or suffer through it and see what happens. Thoughts?


Thu Jan 21, 2016 9:09 pm
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Joined: Thu Sep 04, 2014 11:39 am
Posts: 609
Post Re: My experience
justjay wrote:
Yeah I think the muscular explanation makes most sense for me. Today I went to see my doctor about the recent flare up. He did a urine culture, which I'm almost certain will come back negative, and gave me a script for 6 weeks of cipro. I've made an appointment to see a pelvic floor physiotherapist but in the meantime I'm debating what to do about the cipro. Take it with no proof of infection or suffer through it and see what happens. Thoughts?


It's very difficult to give advice. In another support group a dr said to avoid antibiotics if there is no evidence of infection. I think there is no consensus.


Fri Jan 22, 2016 9:59 am
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Joined: Wed Nov 11, 2015 9:21 pm
Posts: 17
Post Re: My experience
Hi Jay, I just started seeing a pt (only 2 weeks in). So far the results I get only last for a hour or so and the pain in the perineum comes back. But my hope is with continued therapy this will get better. How long was your initial pain/symptoms before they started to go away/come back? I'm currently 5 1/2 months into this.


Wed Feb 03, 2016 7:49 pm
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