Health Organization for Pudendal Education

Thanks for the welcome. My drug cocktail which I've developed for myself over the years and really seems to take the edge off is as follows: Effexor ER, birth control pills and magnesium in the mornings. At bedtime Amitriptiline 50mg, Tizanadine (muscle relaxer) and more magnesium. I'm going to speak with Dr. Weiss about adding in Cymbalta since I've heard so many people say it is part of their regimine.

Suzy,

Welcome to the forum. I'm sorry you've been suffering so long and haven't been treated respectfully at times. I understand as I have gone through some similar experiences but I'm happy to say I'm mostly cured of PGAD. I also had very tense pelvic floor muscles before PNE surgery. Do you have any idea what might have started this for you? Was there an accident, injury, surgery, excessive exercise, etc. or did it just start out of the blue?

As I understand it Dr. Weiss uses a combination of physical therapy and nerve blocks and that he does not use image guidance for nerve blocks but rather uses his finger to determine where the pain is and where to guide the needle. Most PNE docs prefer to use some sort of image guidance. I know that some patients have been uncomfortable with Dr. Weiss's approach and have reported that he gives more nerve blocks than the typical series of 3. Some docs feel too many nerve blocks can damage the nerve.

I think it is reasonable to try several blocks and a bit of PT but at some point, you have to ask -- what is causing those muscles to go into spasm and try to figure out the root cause rather than just treating the symptoms. Part of that is based on your history and the state of your pelvic structural integrity. My view of nerve blocks is that they can be important in determining your diagnosis. We rarely hear of patients getting permanently better from them. We occasionally hear of people getting permanently worse from them. If you are ever going to consider PNE surgery, most PNE surgeons will require a series of 3 blocks but may require that some of them be done by their team under image guidance -- so that is something to take into consideration.

I hope this sort of answers your question. I've not been to Dr. Weiss so I cannot speak from experience but am just relaying what I have read from reports of other patients over the 8 years I've been moderating the forum.

All the best to you,

Violet

I emailed the Pain Clinic last night. Today I went for a walk, and when I came home there was a phone message saying my appointment with Dr Gordon will be October 1st.. FINALLY a date I can actually wrap my head around, instead of the abstract concept that "someday" I'll have an appointment!

When I saw you had posted on this I was hoping to say WOOHOO!! turned into more of a wooyoo but at least you do have a date.

Yes, it's nothing compared to the (almost) 7 months I've been waiting.. It's "only" 8 weeks!

One month today, one month today.. Counting the days next.. then the hours!

Wow, can't believe you've had to wait so long. Hang in there, DES!

Violet

Two more weeks.. I'm hangin' in there!

What do I need to bring to Dr Gordon to familiarize him with PGAD if he isn't already? I know he's a neurologist, perhaps he's not 'up to speed' on PGAD..

Apparently my doc has sent over my MRI, GTM, and ultrasound results & I'll have to take my current meds with me.

Would it be helpful or annoying to take a brief history of what I feel has contributed to my PN/PNE? I know there are factors that contribute to it, but have no idea whether or not to "blame" this condition on them, including several falls on ice, an unfortunate 'girl riding a boy's bike' accident, horseback riding, bike riding, stress.. Well, you get the idea! I don't have dates for any of these because they are all a part of growing up, & you never think later down the road they'll be of any consequence, but looking back on them as a whole, I think to myself 'How would I NOT have PN or PNE??'

Apparently Dr Gordon will do a pelvic exam, but he's looking for areas of pain/entrapment/irregularities in the nerves, not so much what the internal female structures are like. He also does a GTM (the Qtip test), which I endured with my own doc last year. I'm expecting to be in some pain for at least a few days afterwards.. I'll have my 'slush-buddies' when I get home, so hopefully that will help..

Anyone else have anything to contribute/comment on? I think forewarned is forearmed.. Thanks so much in advance!

Whoohooo! Just noticed this is my 100th post! Small things amuse small minds..

Hi DES,

Well, you made me laugh. Don't look at how many posts I've made. It's embarrassing.

Seriously though, you could take Dr. Hibner's article http://www.pudendalhope.info/sites/defa ... Hibner.pdf which mentions persistent sexual arousal as one of the symptoms. He also cites another article that you could probably find the abstract to on pubmed.

Violet

Thanks so much Violet. I've printed Dr Hibner's article to take with me, and I believe I may have that other article already. If not, I know where to get it again.

I appreciate the help and the DMs I've received from some ladies here.