Help in Vancouver BC

[Paco]

I was wondering if anyone knew of a practitioner here in Vancouver BC who was sympathetic to chronic prostatitis / chronic pelvic pain syndrome people and their painful condition. I have been dealing with this for many years but have pretty much reached the end of my rope. My GP has sent me to see a surgeon on two occasions. He performed a sigmoidoscopy each time and announced that everything was fine and that there was nothing he could do for me. I tried to discuss this condition (CPPS, Levator ani syndrome) with him but I got the feeling that he was more interested in "real" problems like Crone's disease etc. On the second occasion he was actually quite annoyed that I was there. He must have torn a strip off my GP because the next time I went to see him (the GP), he asked me if I liked having my butt examined, as if I was some weird anal fetish freak. I haven't gone back to see him (the GP) in over a year and have just been trying to cope with painkillers (tylenol 3) and pot. I'm so sick of having to deal with the constant pain and the discomfort of all the associated problems. (IBS, difficulty urinating, epididymitis etc). I'm fed up with having to take drugs (legal or not) and just wish this %#@*&%(*#% condition would go away. I'm tired all the time and trying to work and keep on top of all the day to day things "normal" people do seems overwelming. I've become a hermit and don't want to even think about socializing or trying to find a girlfriend. Not with the baggage I'm carrying around. I can't afford to go to California to have this treated as it would not be paid for by my insurance or government health care. I've tried to go easy on the painkillers but at this point I'm just starting to gobble them down, anything to stop the THROBBING PAIN THAT NEVER GOES AWAY!!!

[Richie]

First spend some time reading in the "success stories" section.

Stress = chronic muscle clenching = pain to neurologically connected areas of the pelvis. Your stress is actually making the condition worse.

Read a book called, "A headache in the pelvis" by David Wise. Try to relax.

Not sure painkillers are the answer since your problem ulitimately stems from stress and the resulting effects on your muscles.

I hope this helps start you out.

I am not a Dr. and this is not medical advice.

[webslave]

Watch out for marijuana (the "pot" you reference in your list of remedies). If I remember rightly, others have found that it makes things worse, not better.
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[LightningTree]

I'm sorry your GP resorted to the 'you must be crazy' routine. Many doctors fall into that trap.

In any case, you need to find a compassionate GP, one can sort through your anxiety and pain and get to the facts about your condition, and not be intimidated by egotistical surgeons.

[Paco]

Thanks to those who have responded to my posting. You are very kind. I have read Headache in the Pelvis. I would like to implement the procedures Dr. Wise suggests but the most important one I believe, at least in the initial stages of treatment, is the myofascial trigger point massage. The muscles in my rectum are rock hard. Especially the sphincter muscles that are constantly clamped shut. I know there has to be some tension there for obvious reasons but the degree of tautness I am experiencing is off the chart. There is no way I can consciously relax them. Believe me I have tried!
This has probably been an issue for me for most of my life. However, not ever knowing what normal is because I can't physically change places with someone else to compare, I just soldiered on until it reached critical mass about seven years ago. I need to have these muscles physically relaxed as Dr. Wise does with the procedures he details in his book. This would allow me to focus on the other part of the problem, the predisposition I have to unconsciously tense or clench the pelvic muscles as a reaction to perceived stress. The dilemma is that there are no practitioners here in Vancouver who know anything about this that I know of. This is why I have resorted to this posting in case there might be others in this part of the world who have gone down this road and can give me some contacts here so I can begin to heal myself as others have. My GP had me on clonazepam for about five years but the side effects got increasingly worse until I could no longer tolerate them. Codeine takes the edge off and the pot provides a distraction, but neither help all that much beyond allowing me to barely cope with this horrible condition. It's a terrible shame that our society has such a stigma about things that happen "down there". I feel utterly alone as it is impossible to discuss this issue with anybody outside the anonymity if the internet.

[SickofCP]

Paco,

Save up to go see Dr. Wise. Northern California is not really that far from Vancouver, so you could even drive there. Just a tip on costs of the trip:

- Your insurance may cover psychologist expenses. Dr. Wise is a psychologist and his receipt for the relaxation training may be partially covered by your insurance as a result. Check to see how much you are coverred for.

- Your insurance may also cover some of the physical therapy, for which you will get a separate receipt from the PT.

- Any costs that are not covered would be considered medical expenses, provided you could get a doctor note that says that the treatment was not available locally. Change GPs, because yours sounds like he was very unsympathetic. A new GP, should be willing to write such a note. You could bring the AHIP book to show him. Saying that the treatment is not available locally (which you KNOW is true), will allow you to deduct all travel expenses (car, plane, hotel) as medical expenses in addition to the cost of the clinic. As you know, only medical expenses above 3% of earnings are deductible for federal taxes. I am not aware of BC tax rules, since I live in Ontario.

Think of it as a vacation. Many spend much more money on vacations. And if you are in pain, then a vacation is a waste of money anyways.

Take care