PGAD - persistent genital arousal disorder

[Krisssy]

Thanks Krissy. Yes I agree that the correct PT is really important and am glad you are able to see Amy -- she has an excellent reputation. Would love to know the name of the herb Dr. Echenberg uses.

Hi Violet,
When I see Dr. Echenberg next, I will ask him the name of the herb.
Krisssy

[Kate]

Hello
I have just joined this forum as I believe i have PGAD. Im seeing many doctors with of course little understanding of my symptoms. They thought it might be vulvudynia so they put me on a mild antidepresent. which has helped with the pain but not the arousal feeling. Im aware that some antidepresents can cause pgad but i had it along with the pain before taking them.
Im feeling hopless & have moved back in with my parents & have stopped work. The feelings of arousal are overwhelming. There are more & more days where i feel like not waking up as im terrified of the life ahead of me.

Panadiene forte doesnt seem to help with the arousal either.

I guess im just writting to vent & to people that know what im going through

Thank you

Kate

[carolynm]

Oh, Kate...this is the most disturbing symptom of PN. Have you been officially diagnosed? Do you have many of the other symptoms of PN?

I was crying into the night with this torture. Neurontin has helped me greatly. Since getting to a high dose of this drug I have not had the arousal feelings.

Believe me, I know where you are right now and no one should have to suffer this way.

Use lots of ice (I would double-bag it in a ziplock and put it directly on my clitoris)....and try to get the appropriate treatment. Start with the Dr's & PT's on the home page, and easily enough print out some info on PN and bring it to your doctor. You can tick off the symptoms as they apply and as for the drugs you need.

YOu can PM me anytime I would be happy to give you any information and emotional support you need.

Im so sorry
cari

[Kate]

Hi Cari

No I havent been offically diagnosed with anything yet. Its a very long story but i started to do research myself as I was getting nowhere. I had pain in the vagina & also pulsing clitoris. After looking up I found the disorder that most of my symptoms fit into which was PGAD. This of course was very hard to accept as I dont know what set it off in the begining.
Im from Melbourne, Australia & had to contact people in the US for some support. There was a doctor that had seen 1 or 2 cases of this that was in Perth Australia so I contacted her. She advised me to go on Endep a mild antidepressent which after 4 weeks has eliminated the painful symptoms but what im left with is far worse. I get a few good days where the arousal is there but I can get through it. Then on the bad days its horrible, I dont even feel like living if this is what I have to live with. That may sound dramatic but im 29 & feel like my life is over.
Its so difficult & distressing to get through my days when the arousal is constently there.

Im seeing a pelvic floor physio soon. But basically I have no other help. Im always crying & its so upsetting for my parents.

I dont know enough about PN to know if thats what it might be. Or what set it off.

Im just feeling pretty helpless & the moment & not sure where to turn for understanding of my condition.

Thank you so much for your kind words Cari & thank you for listenting to me when Im in this horrible state

Many Thanks
Kate

[calluna]

Hi Kate - we've been there too.

Meds that are documented as helping this condition are citalopram, or escitalopram, and also tramadol. Also some benzodiazepines, if you read through this thread you will find more details including links to published papers.

For me, tramadol did the trick. In the meantime, keep going with the ice. And have you had the opportunity to try lidocaine? Instillagel has helped people, and both lidocaine patches and lidocaine cream work too.

Endep I believe is a trade name for amitriptyline - this is a tricyclic antidepressant which is used for pain relief - that's for neuropathic pain. The usual meds don't work at all for nerve pain.

Don't give up, this can be controlled although it may take some trial and error to find what works best for you.

[carolynm]

Kate,
There are a couple of people here on the site from Australia; if you post on the Welcome Center I'll bet you will hear from them. I know there is a specialist there somewhere who deals with PN. The unfortunate truth is most of us have had to travel long distances to get the help we need. Do you have the pain with sitting? If you do, my bet is that you have PN.

I'm thinking about you...
cari

[carolynm]

Kate,

On the HOME page I see a pain doc in East Melbourne and one in Fitzroy Victoria....you do have some resources!!!!!!!!!!!!!!!! yay!!!!!!!!!!!

[Kate]

Hi Cari,

No there is no real pain when sitting. Before I went on the mild antidepressent there was pain in the vagina.
So now im just left with the arousal feeling. Lucky me!
Thank you for all you help, its nice to know there are people out there willing to offer any assistance they can & thank you calluna also.
Im taking the list of medication to my next doctors apointment.

Did you have any muscle spasms in the vagina as well?
I wish i could get a proper diagnois, I think I may just have PGAD on its own. I know there is a doctor in the US who is reasearching it at the moment. He has asked women to send in a specific MRI to him because he sees a trend with the ones he has seen already.

Thanks Again

Kate

[carolynm]

Kate,
I've never had any vaginal symptoms....that being said there are people who have. Please keep us updated with your appts, etc. Take the PN info to your dr. and tick off the symptoms you do have vs. the ones you don't. Now you have me interested about PGAD on it's own; I didn't know it was a disease unto itself so I will be doing some google-ing tonight on that.
There are those drug choices that were mentioned. Please don't think your life is over. Something is sure to help.

cari

[Violet M]

Kate, I went through a stage of pudendal neuralgia where all I had was PGAD -- no pain even with sitting. Yes, it can cause muscle spasms in the vagina -- that was actually the worst part of it for me because I could not get to sleep because of the spasms. I understand the feeling of not wanting to live some days. Just to give you some hope -- I am 99% cured of this dreadful problem and I take no medications now. So please continue to seek help until you obtain the right treatments. Have you contacted Dr. Vancaillie and Sherin Jarvis in Sydney yet?

I know one gal who had PGAD with throbbing before surgery and I think her MRN showed that there was a bulging blood vessel proximal to her ligmamental grip at the ischial spine along with a pudendal nerve entrapment. Her PGAD was relieved by surgery to release the compression. I have another friend whose PGAD was mostly cured by surgery -- her nerve was entrapped at the ligamental grip also.

In my years of researching PGAD I believe there can be different causes and I think that pudendal nerve entrapment is just one of the causes. So you may be on the right track -- especially given the fact that you do not have a history of taking anti-depessants before this hit and that you have a history of vaginal pain relieved by Endep.

I hope the physiotherapist you will be seeing knows about pudendal neuralgia. There are different types of PT -- some helpful and some harmful for this condition. If she recommends pelvic floor strengthening exercises such as kegals or anything else that increases your pain she is probably not the right one for you. If you have a nerve entrapment, stretching can also be detrimental. It's what pushed me over the edge into full-blown PNE. So be careful and follow your instincts with PT.

I would be interested to know the name of the physician who is seeing a trend with MRI's. Do you know what they are seeing on them?

I agree with Cari -- ice is great!

Take care,

Violet