Health Organization for Pudendal Education

hi believe you can get help with this problem with a GOOD TCM [traditional chinese medicine ] practioner , it is a symtom discussed in TCM
Worth a look if it can be resolved naturally , it means your body is out of balance ,probably the meds causing the imbalance
cheers

Has anyone read the book 'A User's Guide To Staying Healthy: A Comparison of Hypersexuality and Persistent Genital Arousal Disorder' by Jo Burns?

I read on Amazon that it's mostly a compilation of articles from Wikipedia.. Wondered if it would be worth getting?

I haven't heard of the book. I would be very interested to know if there is anything about the pudendal nerve/pudendal neuralgia in it.

Violet

At $22.95, it's a bit expensive for me, but maybe somebody on Amazon will have a used copy..

Monday's finally my appointment with Dr Gordon. I'm dreading the thought of the pain I might have to endure, but if it brings me some answers and a treatment plan, perhaps it'll all be worth it. My anxiety causes my PGAD to spike, so I was more than distracted by it Saturday. I'll attempt to get my anxiety under control Sunday, and hopefully if (when??) I get anxious on my way to the clinic, it won't take too long to get it back in hand again.

My appointment with Dr G went well.. Or better than I expected, I guess.

He did a complete history on me, asked about my meds, my pain levels, my arousal.. We covered a lot of ground before he did the examination on me..

Since I've had previous sexual abuse, I found it very considerate of him to offer to bring a nurse in, which I declined.. He also told me before doing anything what he was going to do. He said he'd consulted with about 15-20 PGAD patients before me.. I'm happy that at least I'm not his first.

The pelvic exam itself was fairly uncomfortable. I have a lot of sensitive areas, and many that just plain hurt. He did external and internal palpations and I'm more sore on the right side. He finished the exam by poking around externally with a toothpick.. My hubby said 'I hope he didn't take it out of his mouth, flick a piece of chicken off of it, then do your test!' That part almost sent me through the roof. I thought at first he'd used a pin or a needle..

Back in his office, he'd brought in a resident to sit in on our discussion. The resident had never heard of PGAD, but seemed interested in looking it up..

Dr G will be booking me for an MRN (if I'm not mistaken), that test with the electrode 'down there' and referring me to 'Mindfulness' classes with another doctor. He talked about upping my Cymbalta for a month's trial, but since I'm managing my pain okay now, we'll leave that option open for the future. He briefly glossed over physiotherapy, but didn't go into any detail on it. He said if none of the tests he's ordering tell him anything, he may recommend a nerve block.

Likely it'll be a month or more before I get these tests lined up and started. I'm grateful for some stepping stones across the river now, instead of feeling like I'm just treading water..

Hi DES,

Just wondering if Dr. G has had any success in treating the other PGAD patients he's seen. Did he say anything about whether he thought yours was due to pudendal neuralgia?

I guess you have started another waiting game now but hopefully not nearly as long as the last one. I know in my case mindfullness training would not have done anything to help but I guess it's worth a try. Maybe it helps some people. I would definitely ask to try PT if he will order that for you. You might want to call his office and see if he will go ahead and order it for you so you can get started on it sooner if it's something you are interested in trying.

Best,

Violet

Thanks, Violet! I had a ton of info tossed at me while I was there, so I'm going to take some time to sort it out, since my mind was in a tizzy with anxiety. I never thought to ask him what his success rate was with other PGAD patients.. He DID ask me if 'this was it' & I got no better, how would I feel.. Well, I'm hoping for some sort of relief & hope to get better, so I let him know that. Does that sound like he's maybe not too hopeful?

I will see if he'll recommend me for PT. I as of now, I have no idea what is covered by our healthcare system & what isn't. I'll make myself a list & call or email..

After finding my painful/sensitive areas, he did say it wasn't all in my head, so perhaps he'll agree with my own doc that it's pudendal neuropathy.. I sure felt quite a few areas that were sore/tender, & I know my arousal isn't something I'm making up! After waiting so long for this appointment, I sure hope they can do something for me.

HI DES,
Glad you got in to see Dr. G. He has a good reputation and explained to my doctor that in most cases some type of pudendal pain was involved.
Being knowledgeable in neurology, he might prescribe something to calm an irritated pudendal nerve.
In Ontario as in most provinces, physical therapy is not covered; you usually need a prescription for pelvic floor physical therapy to get an appointment (from a GP or a specialist).
One very knowledgeable PT when it comes to pelvic pain is Carolyn Vandyken in Cambridge; seeing her for an initial assessment wouldn't be a bad thing, even if you end up seeing somebody closer to you later. She has treated several cases and I know 2 women with this specific disorder who are currently seeing her.
PT was certainly beneficial for me, I am doing much better.

Laurina wrote: PT was certainly beneficial for me, I am doing much better.

Laurina, did you have PGAD too or just pain? I know one woman with primarily PGAD who is considering seeing a PT but is concerned about any physical contact right now. If she knew there were other women out there who had primarily PGAD and were helped by PT I think it would give her morale a real boost.

Violet

Hi,

Perhaps this is not the right place to bring this up but my issue was possibly similar?

I'm male. Before I got the massive burning/stinging on my penis, I was getting increased erections for no obvious reason ( I'm not a young man). I mentioned this to the nurse during a visit to my GP. That was the system: first the nurse then the GP. There was also a trainee nurse there that day. Now they had no answer for my 'case' but as they left the room I heard them cracking a joke about it. As in -what are you complaining about. I wasn't. Given the weird things happening to my body at the time I just thought it was perhaps relevant.

So my question is there an equivalent 'disorder' in men in terms of pudendal nueralgia? It's not there now. In fact I can't have sex as it's far too painful for weeks afterwards.

Any ideas?

Cheers Jackson