PFD without trigger points & success of Stanford protoco

[Kevin814]

I'd like to know whether it's possible or likely that I have pelvic myoneuropathy if I have pelvic pain but no trigger points in my pelvic floor. I have seen a physiotherapist who specializes in the pelvic floor; she has done biofeedback and rectal palpation of my pelvic floor muscles. My biofeedback results are normal, and all I have is one very mild trigger point (I felt little more than tension when the physio applied pressure on it).

I have read A Headache in the Pelvis, and my symptoms fit that of pelvic floor dysfunction--which I suppose is the same as pelvic myoneuropathy--extremely well (see information below). A month ago, my urologist told me that it's a toss-up between interstitial cystitis and pelvic floor dysfunction. We have basically dismissed interstitial cystitis, since my symptoms are really quite atypical of IC. Yet now my physiotherapist doubts that it's PFD. What am I supposed to think?

The only explanation I can think of are that my physiotherapist couldn't access certain muscles of my pelvic floor rectally (the ones that contract during orgasm, for instance) and thus could not assess them. Is this possible?

I was also wondering what the success rate of the Stanford/Wise-Anderson Protocol has been. I hear only positive things, such as 90% of men having pelvic floor tension (and I assume that all can be to some degree cured by the Stanford/Wise-Anderson Protocol). Could I just hear if there's anyone there who has been unsuccessful on it?

Thank you very much for your help. I have included a more detailed description of my symptoms below; I would truly appreciate your insights and observations. Also, I hope I can direct someone to answers about his own conditions, as I've been reading about chronic prostatitis / chronic pelvic pain syndrome for more than a year.

Best,

Kevin

SUMMARY OF CONDITIONS

Age: 19

Symptoms:
-Started last May: urinary urgency would wake me up in the mornings. No major events that I can think of took place before the onset of conditions
-Has progressed to chronic urinary urgency/frequency
-Pain in prostate/base of penis/around pubic bone/bladder, too
-Mild discomfort, but no notable burning during urination
-No back pain, no pain during defecation
-Pain has gotten better since the end of school year (I was urinating up to six times an hour during the evenings)
-Typical day now includes at least ten voids, all of which are urgent. Something like this (in mL):
300, 100, 50, 75, 50, 25, 50, 25, 25, 25
-Nocturia is very rare, although sometimes the urge to urinate will wake me up before my alarm clock in the morning.

Pain is aggravated by:
-Sexual activity: this is the big one. After being sexually active, I'm in serious pain, and each time I am it takes longer to recover. The pain occurs after (often the day after), but not during, sex.
-Holding in urine
-Mental stress (flare-ups occur during stressful events such as exams)
-Evenings
-The connection with food is improbable: I haven't noticed any marked change in conditions based on my diet, although I think coffee makes it worse. I have noticed no hypersensitivity to cranberry juice or alcohol, a fact that makes me lean away from seeing it as interstitial cystitis.

Pain is reduced (though not eliminated) by:
-Urinating (although I often have to go again quite soon afterward)
-Aleve (naproxen) (I've noticed that it usually takes a few days on Aleve (naproxen) for the conditions to get better)
-Pyridium Plus
-Hot baths (at least when I'm in the bath)
-Valium (2 mg, 2-3x a day)

In-office test results with urologist:

-Urine flow is normal, not weakened.
-Bladder is emptying completely
-Digital rectal exam revealed no inflammation of prostate
-No tenderness in abdomen

At first, the urologist thought it was prostatitis and spent months putting me through the full gamut of antibiotics, to no avail. He then did a cystoscopy without hydrodistension. The conclusion: normal urethra and prostate, no bladder lesions. The urologist did remark, however, that my pelvic floor muscles are tight.

In-office test results with physiotherapist (specialist in perineal reeducation):
-Rectal palpation revealed some tightness in trigger points but nothing remarkable.
-Outside muscles (core muscles of back and hips) that connect to pelvic floor, however, are rather tight/imbalanced/weak. Last year I had a sacroiliac dysfunction, in which one side of my hip slid up.
-Have done Kegel exercises and diaphragmatic breathing to temporary improvement (last week, no urgency in morning for four straight days).

[hodologica]

Normal rectal EMG (biofeedback machine) results doesnt necessarily mean no PFD (says Wise himself).

The SP can fail to help people, not uncommonly. It has helped some people lacking trigger points who do have PFD, which is noted in AHIP. I think I remember that AHIP says that such patients were "very tight" in the PF but I am not sure.

A uro says youre pretty tight, a PF PT says youre not that tight - I'd find another PF PT for a 2nd opinion if I were you.

no inflammation of prostate

But how about tenderness?

Last year I had a sacroiliac dysfunction, in which one side of my hip slid up.

Search this forum for "pelvic joint dysfunction" - thats just an idea, I really dont know the charecteristics of that. I think various alignment issues can cause pain syndromes... I know zero about them, I think Mark knows about them tho...

[webslave]

David Wise has a very poor opinion of over 97% of PTs in this area, and especially female PTs who 1) are too tentative in their palpations inside the male pelvis and 2) generally have fingers too short and weak for the job.

[hodologica]

You can email Wise for referal to one of the very few PTs he says he might see himself if he needed PF work. There are not many of them and you might have to travel. I would at least not rule that out if I were you.

[alprost]

Many of my symptoms are similar to yours. I was told by 2 seperate PT's that I had no more trigger points in my pelvic floor. Someone else checked my pelvic floor and found several towards the front of my pelvis, around the pubic bone and prostate, an area thet neither PT checked. Pressure on these TP's recreated many of my symptoms. There is no easy answer here, but I would suggest seeing a physio who is reccommended by Dr Wise. This may noy be easy, but I think it is your best option.

[Guest]

Hey all,

I wes taught by my PT how to do self massage of the levators. After I do so, by applying pressure, a bit of stretching, and moving around in a circle I normally can pee without the muscle spasm/lock up at the beginning that I normally get. However, I also get the small spams while and after I'm doing this massage. Does that mean I'm on the right spot? How often can one do this, I've been doing it every other day, or very lightly on the days that would be a day that would be skipped. Unfortunately, the benefits dont last the whole day. Has this been the general finding with the internal massage.

SS

[Kevin814]

Thank you for the quick replies. Some very interesting points were brought up.

I am in fact seeing another physiotherapist. She's an expert in PF as well, and noted the same things. But she's in the same school of thought as the other one (and not an expert on Wise), and has shorter fingers, for that matter. So who knows. I'm intrigued by the notion of different areas of the pelvic floor. Is it accurate to say that my urologist--who was doing a cystoscopy--and my physiotherapist--who was doing rectal palpation--were talking about different muscles? If so, is it possible that one was tight while the other was normal? That would certainly explain a lot: I have no rectal pain, but lots of pain associated with urination and orgasm.

Which leads into hodologica's question about tenderness of the prostate: in fact, three days ago I decided to try some self-administered pelvic floor treatment. After pressing down on my one "trigger point," I decided to try a very gentle and brief prostate massage, as I had heard it might help. It didn't hurt at the time, but the next two days I was in pretty darn serious pain. Does that set off an alarm for anyone?

Alprost, I'm interested in finding out more about your experience with the muscles near the pubic bone. As I have mentioned, I have long suspected that the problem is in a different, harder-to-reach area of my pelvic floor. What I find odd is that my PT wouldn't check there. (And, for that matter, that my urologist didn't check my pelvic floor a year ago, considering that it's pretty quick and easy to do. But that's a whole different kettle of fish.)

I sent Dr. Wise an email. If I can't get to someone that Dr. Wise recommends, would it really be all that dangerous for me to look for trigger points in those other areas myself? I suppose I could find a happy medium by asking my PT to check there; what do you all think? Thanks once again.

Kevin

[hodologica]

Read this, twice, before you decide whether to continue along those lines of self-treatment:
viewtopic.php?t=661

Yeah, there are a zillion different muscles in the PF. Literally its something on the order of thirty, if I recall.

After pressing down on my one "trigger point," I decided to try a very gentle and brief prostate massage, as I had heard it might help. It didn't hurt at the time, but the next two days I was in pretty darn serious pain. Does that set off an alarm for anyone?

I'm not saying the 2 days of pain necessarily means you achieved any benefit (i have no idea, but I really doubt it does) - nor am I saying you should continue to do PF stuff on yourself - but delayed short-term aggravation of pain does occur with internal PF work. Its the norm.

If you attempt self-treatment, then, - aside from all the other risks discussed in the thread linked above - you won't really know if its working. Which theres a good chance it won't be, since PF stuff takes skill and knowledge, and those PF PT's werent able to find much they could treat, so clearly your PFD, if you have it, is at least a bit harder to get at than average. Bottom line, I recommend the other plan - seeing a PT from the Wise list.

[MastCells]

David Wise has a very poor opinion of over 97% of PTs in this area.

This is a big problem. If psychologist David Wise has a very poor opinion of 97% of the PTs in this area, and we don't know who the 3% he approves of are, then we all either have to go through an expensive and time-consuming process of finding out who the competent PTs are, or just give in and fly to Wise's clinic for treatment.

[webslave]

Yes, that does seem to be the implication, more or less. But if you've tried everything else without avail, and have the money, how bad is it to do just that?

[hodologica]

Actually, I get the impression that most or almost all people who email Wise to ask about his PT short-list get a response very quickly. I did. I think he even included his own phone number in case I had pursuant questions! Seems like a hell of a nice person (as others have reported).

I decided to try one more local practitioner before going to Stanford or travelling 600 miles to see the Wise-approved person, and that local practitioner turned out to be quite good enough, at least in my case (which I dont think was very complex - at the time of treatment I had just one TP, tho apparently a relatively big one).