Health Organization for Pudendal Education

I just replied to your reply to my PN and IC question thread.

Good to read more here as well as your story Larry 195555

Bathsheba wrote:He also prescribed 50 mg. noritryptiline, as well as physical therapy to loosen up the right side of my pelvic myofascia, which is tight and painful, probably pressing on the pudendal nerve.

I personally would recommend you stick to that physical therapy to release the tight and hard tissue and muscles in the pelvic region. Been doing physical therapy for 3 weeks now to loosen up the pelvic muscles and tissue and am seeing results.

Good Luck!

Update:

Unfortunately, the PT didn't help. The PT said after 3 months that she couldn't help me. To quote her, "The muscles in your pelvis will not relax until the nerve settles down. There is nothing I can do to help you as there is nothing wrong with your musculature other than the muscles reacting to a damaged nerve." She gave me a TENS (?) unit to try which caused horrible pain. When I told her this, she said that this reaction was proof of a severely damaged pudendal nerve.

The CT guided nerve blocks stopped after 2. The second one was a total failure with my whole crotch dead and loss of continence for an hour. Now I am worse than ever unfortunately, having to increase my Lyrica and use ice packs almost constantly. I don't know what could be causing this other than the last injection as I am not DOING anything other than short trips to grocery store etc. on a cushion. Otherwise, I am flat on my back.

Dr. Marvel was an expensive waste of time and money ($600 for a 15 minute exam, plus his sidekick Dr. Richard charging $1,000 per shot...). Now I am worse, not better. What next, I don't know as no neurologist seems to be interested or knowledgeable about this condition. Dr. Dellon is nearby but he seems like a self promoting quack, claiming cures which are not substantiated and charging unconscionable amounts for his services. It's good to make people aware of this condition, but Dellon is just too much....

Bathsheba,

I don't know where you live, but if you're close to the Canadian border you could consider taking a trip to Cornwall, Ontario, where Dr. Kirk Andrew has been having a lot of success treating various pelvic neuropathies with extracorporeal shockwave therapy (ESWT). A number of forum members have taken the trip or are scheduled to to do (besides me, there's Surfsup, PNMom, PelvisStressly and Mystoryhurts) with mostly successful results. If you want to read more about it, just type "Cornwall" or "Dr Andrew" in the search box above, or contact any one of us.

I'm sorry to hear that PT was not helpful for you, but that seems to often be the case with true nerve entrapment. Best of luck in trying to find a solution to ending your pelvic pain.

Good luck with whatever you decide to do Bathsheba. You obviously need some intervention sooner rather than later. Lernica's suggestion is something I am personally interested in, although it is totally impractical for me at the moment. Unfortunately it is a costly venture, but a good step before ever considering more invasive surgery. Dr Marvel was very wrong to even suggest that his blocks were to be the ultimate answer to your problem.
I hope things start to take a turn for the better for you.
Helen

Hi Bathsheba,

At least your PT was smart enough to realize PT wasn't helping. I had the same problem -- the nerves were what was causing the muscles to go into spasm.

I'm sorry the nerve blocks haven't worked out so well for you. I'm not a huge fan of nerve blocks as I have heard of too many people having problems afterward but unfortunately for anyone considering surgery most of the surgeons require them before surgery. Deciding whether to go for surgery is an agonizing decision though. Do you have health insurance that will cover any of the costs you have incurred so far and if so, might they pay for you to visit an out of network provider?

Violet