Health Organization for Pudendal Education

Lernica wrote: Get thee to a pelvic floor therapist! There are lists of such therapists on the home page and yes, they do treat men! You will not be "wasting your time" on this route as the PT will be able to tell you right away whether your pelvic floor muscles are tight. Tight pelvic floor muscles can lead to a lot of pain (including burning) in the back, legs and buttocks. Valium is also a good idea. If you can get a Valium suppository, it's even better for tight pelvic floor muscles. The suppositories are custom-made at a compounding pharmacy with a prescription, and can be inserted in the rectum. If you have a tight pelvic floor, you will feel the pelvic floor muscles relax immediately, and you won't get so much of a "whoozy" feeling that taking an oral valium will do.

The assessment after seeing a pelvic floor therapist who performed an internal exam is that I have extremely tightened and tense muscles all throughout the area with many trigger points and that the muscles are going into spasm. The exam was not painful or uncomfortable (beyond the obvious) but I did see some reproduction of the symptoms. She feels that the muscles are in a state of chronic tension and that are essentially trained to be constricted like this. She cannot state specifically if it is the cause of my issues but it seems like a strong possibility at least from what I can tell. The doctor I've been seeing does not have enough knowledge on the pelvic floor muscles to prescribe anything like Valium, unfortunately, so I will need to locate one that does. The pelvic doctors in the area that I have talked to only see women.

Does the therapist think she can help you? I was told that it could take up to six months of weekly sessions to relax the pelvic floor with manual massage. The aim is to lengthen and soften the tight muscles.

My suppositories consist of Diazepam 10 mg. in a cocoa butter base. I insert them in the rectum once daily. There is no reason why your family doctor could not write the prescription. Then you just need to find a compounding pharmacist. Judging from what the PT found in your pelvis, it sounds like they could be very helpful to relieve your symptoms.

Yes, while not promising anything, she seemed to think she can help me.

Six months? Eek. Well, it would be worth it if it would provide relief, although I'm not sure what will happen in terms of insurance as I'm only allowed X number of PT sessions per year.

I suppose my next course of action will be to consult my GP to see if he can prescribe the suppository. I think there are compounding pharmacies in the area based on a Google search.

Just FYI, for me the suppositories were a silly idea. It was difficult to find a Doc who knew enough to prescribe them : They need to feel comfortable with the idea and also know what dose to prescribe or have a credible source to reference for dosage. Then, it has to be worth the trip to the compounding pharmacy and the extra $$, because if the insurance pays for it at all it will generally be with a higher copay. Then, you have to see if it really only absorbs locally or if it just goes systemic anyhow. I guess some people are "absorbers" and others are not. I am an "absorber". A half hour after I tried my 1st valium suppository, I was high as a kite. Oral valium gives me the same benefit, is much much much cheaper, and doesn't get me high because I started small and slowly adjusted the dose. I personally think that unless a person has cash to spare, the best thing is to start on the oral med and only try suppositories if the med is not tolerated orally. But if you can't tolerate the oral med, there is a chance you won't tolerate it in suppository form either.

I wanted to post to describe something that, upon reflection, may have been the first origins of this problem for me, to see if anyone has any thoughts...

Approximately 3.5 years ago, I had what I would describe as a sudden onset of symptoms which, looking back, mirrored the first symptoms for my current situation (which began just over one year ago). The symptoms back in 2008 seemed to start all of a sudden and I describe it as a strange 'flushing' or 'fluttering' sensation in the pelvis. At the time I believe I thought it was in the area of the scrotum but when I think about it now I suspect it may have been the pelvic muscles. I went to the doctor and he diagnosed it as an inflammation and prescribed anti inflammatory medication (Diclofenac, I believe it was). It cleared up after about two weeks and I thought nothing more of it.

When my current symptoms began over a year ago, the first stages were very similar to the symptoms in 2008: the 'flushing' and 'fluttering' sensation, specifically. I noticed it then, as in 2008, mostly when I shifted positions, e.g. bending or squatting down to pick something up, as my job often requires me to do.

I went back to the doctor who thought it again may have been some type of inflammation and prescribed anti inflammatory medication (Mobic). It seemed to get better but then got worse and is essentially the same now as it was after that brief period of relief. I do not experience the 'flushing' or 'fluttering' sensations any more, and haven't since the first stages.

Anyway, my point is that I am wondering if both incidents were the beginning stages of the issue and that it could have been related to pelvic floor dysfunction. In both cases I know that I was doing exercises and also tensing muscles improperly (as I do that almost instinctively but I am working to avoid). I was also under stress on both occasions and I believe stress can be a trigger for these problems.

Does anyone have any thoughts on this? Sorry for rambling but I'm wondering if there's something to it.

I don't have much time but I am with you on the stress as a trigger. Work was awful then my brother's health issues started and I actually used his as my reason for changing positions although it was really my pain. I have since found my way to a great position that is backing me through the past year and a half as my time at work wemt down then surgery out 3 months and just completed my third full time day ( 1 year post op). Best to you hope is alive.
Janet

I do think that the fluttering you describe is muscle action (I have a lot of it, in my legs as well as pelvis but it is also noticeable in my piriformis muscles, so I know it is muscle related, with me anyway. As Violet pointed out tho', is that the nerve telling the muscle to react or the muscle reacting to something else say muscle tension or slight relaxation. I would say it is related to the whole pelvic problem however. Quite a lot of people can probably relate to this 'movement'.
Helen

Hi,
I had nearly exactly the same symptoms as yourself. Burning when sitting. What worked for me was to find a PT with proven record of working on Pelvic Floor. I have been going for about 3months and my symptoms have improved dramatically. I was on diclofenac, paracetomol/codeine, cipro the lot, nothing helped. Now I am drug free and have days where I feel completely normal. You still have off days but on the whole am much better. The PT is uncomfortable at first but stick with it you will notice an improvement.

Steve, thanks for the reply. I was just looking at your thread and I agree that it sounds very similar. I am happy that you have found improvement and I hope to join you in that! I am currently seeking treatment from a PT who is experienced with male pelvic floor dysfunction and we will see where that leads. I think that my problem is that I am naturally tense and it is very difficult for me to relax, especially to relax muscles and even more so the pelvic muscles. I bought the "Headache in the Pelvis" book and have been reading it but the chapter on Paradoxical Relaxation is just very difficult for me to comprehend. I have been attempting to relax the area but find it almost impossible to differentiate the feelings of tension and relaxation. I think my surrounding muscle groups are also very tense, i.e. the hamstrings and Piriformis. Even as I sit writing this message I feel that my upper leg area is all tensed up and I can't quiet it down.

Hopefully the physiotherapy you are having will help. It will help you be able to differentiate the separate muscles I'm sure and then you will know where to target and release the tension.
Let us know how things go.
Take care,
Helen