Health Organization for Pudendal Education

Violet M wrote:GM, did you get up to at least 1800 mg of neurontin? It's typically not considered effective for pain at lower doses. What about an antidepressant such as cymbalta or amitriptyline? Sometimes one of these along with lyrica or neurontin are more effective than either by itself.

No, I think the maximum dosage of Neurontin was 300x3, so quite short of the level you mention. I grew frustrated at a language barrier with the doctor prescribing it and stopped taking it due to the side effects. Perhaps a mistake, in hindsight. I was prescribed Cymbalta and took one pill but experienced a very unpleasant reaction to it -- I felt as though I were walking around in a complete fog for the next few days and vowed I wouldn't take it again. Perhaps stubbornly, I've had an opinion that the problem is something that can't be corrected with a pill, and so easily grow frustrated at the medication. I will ask my new doctor for his thouhts on revisiting Neurontin or Lyrica.

HerMajesty wrote: GM15 to me it sounds like you have some very inflammed nerves and whether the pelvic floor dysfunction is cause or effect, PT would probably be a great place to start. When you say standing seems to tighten your muscles more, it sounds like you need some muscle retraining. You might have been tensing the pelvic floor as a means of muscular support when doing workouts, instead of using muscles that can really handle that load. It sounds like you use those same muscles habitually to support yourself, even when just standing.

Thank you for your detailed thoughts on this. Yes, I am quite sure that this is the case and that I have been tightening the pelvic floor muscles for quite some time and at all times. I think I have been tightening the glute muscles, as well. I isolated at least one instance where I know I tighten those muscles, and the effort of not doing so felt completely foreign and quite difficult.

HerMajesty wrote: While your symptoms are different it sounds like you might have the same issue of weak core muscles, which are muscles often ignored in workouts but really necessary to support the body without injury.

I know this is the case, too. One of the physical therapists who worked with me had me do some basic exercises and saw that my core was extremely weak. I'm sure that the ab muscles you describe are probably in near atrophy from disuse while the pelvic floor muscles and perhaps glute muscles are completely overstrained.

HerMajesty wrote: Since sitting and standing are both problematic, have you tried a kneeling chair? I got one mail order from walmart for less than $100.

I have not tried this but would like to investigate further. Do you happen to have a link to the kneeling chair you ordered, or anything similar?

helenlegs 11 wrote: Only other point about the kneeling chair, which I have (a cheap one from e bay) I really thought it would be ideal BUT it does put a strain on my (worst side) SI joint as the 'load' seems to go straight to that point which is right next to my constantly painful spot in the piriformis. The seat did me no good what so ever but for the price of the cheaper varieties, it may be something to try GM. . . .You can have mine .

I would be interested in seeing this chair, too, just for comparison purposes. Do you happen to have a link to it, or a similar chair? Thank you for the information.

This is exactly the same design as mine except the steel (looking) bits are wooden http://www.google.co.uk/products/catalo ... J0BEPMCMAE
Helen

I'm pretty sure this is the one I bought:
http://www.walmart.com/ip/Steel-Frame-E ... r/10778732

When you said,

"I am quite sure that this is the case and that I have been tightening the pelvic floor muscles for quite some time and at all times. I think I have been tightening the glute muscles, as well. I isolated at least one instance where I know I tighten those muscles, and the effort of not doing so felt completely foreign and quite difficult."

The first thing that popped into my head is that you might get a lot of benefit from biofeedback, which could train you to relax the pelvic floor. I never got biofeedback myself so I'm not quite sure where to access it. I think some PT's might do it; and I know somebody near me who is getting pelvic floor biofeedback from a urologist...My impression is that any practitioner who recognizes the benefit of biofeedback can buy the necessary equipment, so trying to access it is kind of hit or miss. If you search the term on the board, you might find out more info about how to access it. But it sounds like such a deeply ingrained habit, while strengthening the core muscles is important, it is probably equally important to be trained to relax everything else.

Thank you both for the links to the chairs. I look at those and can't figure out how they work, but I will definitely research it and probably buy one to test out at home to see if it would be practical for use in the office.

HerMajesty wrote: The first thing that popped into my head is that you might get a lot of benefit from biofeedback, which could train you to relax the pelvic floor. I never got biofeedback myself so I'm not quite sure where to access it.

I had read a bit about Biofeedback but will try to find out more and see if it is offered by anyone in my area. I think simply helping me to train to relax those muscles would be of a huge benefit. I really think I must be constantly tensing them but I can't figure out how to stop doing so.

A follow up question on the topic of relaxing muscles, are there medications that could be useful for this purpose? I think I've read about Valium on this forum but would that help me at all to relax the muscles in the pelvic floor (and any other tense muscles in the area such as hamstrings or glutes)?

What about other treatments like acupuncture or deep tissue massage? Are those worth investigating?

Thanks again!

Deep tissue massage was part of my pelvic floor PT treatment. I think if there's a pelvic floor PT in your area who does it, that's better than getting it done at a massage therapy place because they should know specifically what to do so as not to aggravate your condition. Not to mention, unlike traditional massage therapy it is covered by insurance.
I use valium and it has been very helpful. I have not used accupuncture but from what I hear it is helpful but you have to keep going back so it gets expensive.
Here's the issue: Pelvic Floor Dysfunction, by definition, means that your pelvic floor muscles are short, tight, and spastic. they need to be lengthened and relaxed. All the treatment options you mentioned above will help to do this, but they are really no match for chronic unconscious voluntary contraction of the muscles. That habit is too antagonistic to the effects of the therapies and you probably will need to be trained out of it before any other kind of therapy will lead to long term relief. Short term, those therapies might be helpful because if they bring temporary pain relief, you will not be contracting your muscles even more in response to pain. But it sounds to me from all the info you've given, like your PFD is not just a pain response but the way you are used to holding your body in the absence of core muscle strength.

Here's a random web page I found by googling "kneeling chair' on images, to show you a pic of somebody actually sitting on one:

http://officechairadvice.com/ergonomic/ ... chair.html

lol since our household is religious and the one I grew up in was not, this was the conversation with my Mom when she first saw the chair:
Mom: What is that?
Me: It's a kneeling chair.
Mom: Is it something you use for praying?

Thanks for that. It seems like the butt area still makes a degree of contact with the base in that set up which may not help me all that much. Ideally I could try it before I bought one.

I will ask the doctor about Valium, too. It's at least worth investigating.

If there is a "back store" near you such as Relax the Back, they will almost definitely have one for you to try. Sometimes the large office supply stores have them set up to try out too. While it contacts the butt area, your weight is almost all on the area contacted by the knee pads and on the backs of the thighs at the edge of the chair. But as you can tell since Helen and I don't use ours, they are worth trying before buying.

Do get into the habit of starting on a low dose of any drug and building a toleration for it. Valium will most likely knock you out if you start on your prescribed dose. I started by cutting my tablets to 2.5mg. Now I can take 10mg without feeling it at all, but I would still rather break my pills in half and take 5mg 2 or 3 times per day, than take 10mg twice a day as prescribed. I only take 10mg if I know I am going to need to sit for an extra long time.

GM,

Just catching up on this thread. 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.

HM, nice to see you back on the forum, and I'm delighted to hear of your successful surgery. Do keep us posted!

Take a look at these GM for an idea how the kneeling stool set up works http://www.backinaction.co.uk/kneeling

helenlegs 11,I was clicked the site you provide, But I cann't find the goods I want , Can you provide another site?