PGAD - persistent genital arousal disorder

[Violet M]

Hi Cintapoppy,

It sounds like you have pretty much educated yourself on this topic so I'm not sure there is much more I can add to what you have already said and what nyt said, other than "Welcome" to the forum. Glad you were able to find us.

I have heard many PN patients say the pain/symptoms move around so you are not alone there. Nor are you alone in feeling isolated. I felt incredibly isolated when I was going through the worst of PN but the good people who ran some of the early PNE forums were what kept me alive.

Over time you will eventually find what works for you to keep the symptoms at bay. I hope you will be able to get your life back.

All the best,

Violet

[Cintapoppy]

Hi Violet, there is one question which i can't figure out, how does one know whether its entrapment or neuralgia? Maybe its not a straight forward answer or maybe you could point me to the info. Thank you and I hope you keep well.Cintapoppy

[Violet M]

That is the 6 million dollar question around here. There is one publication I know of on the subject. http://www.pudendalhope.info/sites/defa ... iteria.pdf
I did not fit all of the criteria mentioned in that article though. The pain (especially PGAD) woke me up and night and interfered with sleep, unlike what the article says. One big indicator was the fact that with internal myofascial release or an internal pelvic exam the course of the nerve at the ischial spine and along alcock's canal was very painful and could cause a flare-up for days afterward. Also, my history of exercise and ligament strain pointed toward a ligament impingement. Pain being much worse on one side was another indicator. I tried many conservative therapies before opting for surgery and none of them were very effective. I guess it was sort of a process of elimination.

So, no, there is no straightforward answer but I think there are some things that could point toward a likely entrapment.

Violet

[Rowie]

Hello all,
Is it possible to have PGAD caused by PNE but experience no major pain, just arousal?
I had my little boy 4 weeks ago and there has been no change to the PGAD, it's maybe building a bit again now my pelvic floor can spasm freely again. I'm being referred back to the specialist now for tests now that I'm not pregnant. I think they will have no idea where to start. I'm not sure what has caused this for me but I find it strange there is no other pain.
Does it perhaps indicate that there is a different cause?
Thanks for any ideas.
Rowie

[Laurina]

Rowie,
You are absolutely correct - sometimes there is no actual pain with PGAD just the discomfort of arousal.
The doctor who is treating me views "unwanted arousal" as low level pain as the pudendal nerve is irritated and misfiring, thus sending the wrong kind of signals. She treats the disorder as a chronic pain issue with medication like lyrica and does nerve blocks.
I shall send you a PM with more info.
Laurina

[Violet M]

Rowie, I went through a phase where I had just PGAD with no pain. I don't know if it means there is another cause but in my case it was PN.

Congratulations on your new baby. I'm wishing you all the best in finding a solution to get rid of the PGAD.

Violet

[LindseyD]

Hi Violate, so you are saying because the internal massage caused you a terrible PN flare for days afterwards that it could suggest pn entrapment? That is how it happened to me . I now have pn pain but also deal with pgad... I had some clitoral issues a little before but this spring after those internal or I had it a lot.... and nvr went away.

That is the 6 million dollar question around here. There is one publication I know of on the subject. http://www.pudendalhope.info/sites/defa ... iteria.pdf
I did not fit all of the criteria mentioned in that article though. The pain (especially PGAD) woke me up and night and interfered with sleep, unlike what the article says. One big indicator was the fact that with internal myofascial release or an internal pelvic exam the course of the nerve at the ischial spine and along alcock's canal was very painful and could cause a flare-up for days afterward. Also, my history of exercise and ligament strain pointed toward a ligament impingement. Pain being much worse on one side was another indicator. I tried many conservative therapies before opting for surgery and none of them were very effective. I guess it was sort of a process of elimination.

So, no, there is no straightforward answer but I think there are some things that could point toward a likely entrapment.

Violet

[Laurina]

Hi Lindsey,
If PT was causing you flare after flare, that was defeating the purpose of teaching you how to relax your pelvic floor... After just one such flare, my PT said we would have to relax my pelvic floor by something other than internal work. So, she focused on my breathing and did manipulations to help open my chest more, which at the same time relaxed my pelvic floor.
In your case, I would probably consider seeing a top notch pelvic floor physical therapist, who won't just rev up your nervous system, but knows a variety of tools to calm your tight pelvic floor muscles.
Best wishes as you journey forward.

[LindseyD]

This was a top notch one. It was when I saw dr. Robert Echenberg in PA last spring. She was supposed to be one of the best.

[Laurina]

Sorry that the PT you saw was unable to help you. They do not have all the same training or skill set, as it depends a lot on the state and what they allow in training programs and if the physical therapist keeps current with most recent techniques and treatment protocol. Best wishes as you journey forward.