This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi

Just wondering if anyone else was suffering from pelvic pain which has been attributed to MS and if they have had any luck with treatments.

I am PPMS (10 years) and have been experiencing bouts of excruciating pelvic pain for the last 2 years. The doctors have gone down the prostatis road and I have had all the relevant tests which have not come up with any conclusive results apart from a slightly enlarged prostate. The urologist said that my symptoms were atypical for prostatis due to their episodic nature.

The pain sessions last about 30 - 40 minutes and are usually related to either needing to urinate or post urination. They can also be exacerbated by other factors such as cold and anxiety. From what I have read I have a dyssynergic or "conflicting" bladder combined with a "small spastic bladder" but tests have shown that urinary retention is normal.

Initially the pain would come as I was falling asleep and I had great success with Sativex which dulled the pain and sent to me to sleep really well. However the pain sessions are coming throughout the day and night now, and usually occur before or after urination (but there do not seem to be any hard and fast rules)

I have an appointment with my GP coming up to discuss the problem and see if we can decide if it is prostate or MS/bladder in origin and look for other treatments.

Any advice would be very much appreciated.

Many thanks

Will

Have you been tested/treated for urinary tract infection? Could the urologist make a cystoscopy? After 2 years of suffering I guess you can "request" at least something like that? Biopsy?
Urinary tract/pelvic pain "I" experience is due to a compression of the tract; due to a "wheelchair bound" state; loss of muscles, tissues in the butt and the only thing I can do is alleviate the pain and/or the compression. If I lay down for 3 days it all disappear; but I can't...
Urologist should come with something; 2 years is long time with "a pain in the a**" - and I speak of experience.

Hi Algis

Sorry to hear you've been experiencing similar problems.

I had a cystoscopy (not recommended!!), physical prostate examination and massage, ultrasound scan and numerous blood tests, none of which showed any obvious problems.

Until recently, the Sativex was making things tolerable and, as there do not seem to be any confirmed treatments for non-bacterial prostatitis, I was "putting up with it" (the way I do with my PPMS!).

However, as things have got so much worse and there is doubt regarding the prostate origin, I have persuaded my GP to explore other avenues ie the MS/Bladder issues.

Cheers

Will

PS Have enjoyed your posts over on the CCSVI forum

Will: I remembered of a Lady who had excruciating pain in her urinary tract and as you (prostate aside) nothing could be found; bacterial or inflammatory or whatever. I will try to remember who she is and if I recall well; she use a TENS (trans cutaneous electrical nerve stimulation) to reinforce and exercise her pelvic muscles with good success.
I'll be back when and if I can contact her, be well

Algis

Thanks Algis

I have only managed to find one reference in Google dating from 1988 from Spain where carbamazepine was used successfully:-
http://www.ncbi.nlm.nih.gov/pubmed/3340424

Havn't coughed up the fee for the full article yet but will do if I don't have any luck with my GP.

@Will: I looked the Carbamazepine way (wiki), it spark back "neuropathic pain" which I believe is what I was thinking of; a pain who has no real source; except nociceptors going berzerk.
In any case; this goes way beyond my experience (and definitely far away from my expertise) so you may want to ask an expert about that.

Be well and hope to see soon good news from you;

Algis