PGAD - persistent genital arousal disorder

[Nesssieee]

Hey everyone I've recently been diagnosed with PGAD and I was just wondering if you've heard of it being caused by stopping birth control pills? I don't have any pain just constant arousal. Any ideas if that could be related to pn? I had a local anaesthetic injected into the nerve to no effect so I don't know if it is that. Any suggestions on how to deal with this would be gratefully accepted. Feeling very positive that there is an answer to this.

Thanks

Nessie

[Laurina]

I wasn't on the pill, but my GP had put me on Premarin and Progesterone because of my menopause symptoms. The specialist who treated me said that "it was interesting" that my arousal symptoms started 6 months after being on them; she did not say that it was the cause, but she asked me to discontinue the medication as it was increasing blood flow to an area that already had too much. I would not be surprised that the pill can be a factor.

There is an important online survey going on right now for women who suffer from PGAD. I invite you to participate, as the more women who do, the more accurate will be the findings. Here is the link: http://pgad.sexlab.ca/

[Nesssieee]

Forgot to say that I also suffer from stress and anxiety. Do you think my pgad could be a stress response and response to me coming off the pill? I'm back on the pill so hoping that might have an effect. As I said I only suffer from constant arousal but I don't think it's as bad as some people have on here. My Dr reckons it's just a response to all the changes in my body and that it will go away as quickly as it came on! Any ideas of the likelihood of that?

Laurina has yours gone away since you stopped the medication?

Unfortunately I don't qualify for the survey

[whatislife]

Oh thats a good point i forgot to ask. So like Nesssieee said is it caused by stress and anxiety because I developped this 3 weeks ago and I was still in school back then? This past week I talked to many doctors that said the same thing that it could be your body changes and it will go away soon, so I'm not sure at all. I'm very hesitant to get a specialist because maybe It might just be a phase

Glad to see a survey being made on this though . (Though its female only...)

[Laurina]

Hi Nesssieee,
Stress and anxiety usually make the symptoms worse, and it is harder for them to settle down. Just stopping the Hormone Replacement therapy meds was not enough to reverse the condition; the specialist explained that since I had been like this for a year at the time, my brain and spinal cord had rewired differently now - her job was to get things to rewire to as normal a state as possible.
Treatment included taking Lyrica, applying anesthetizing gel to the affected area, going for PT and doing 3 sets of nerve blocks to the sacral and pudendal nerve - this all confused the brain as it was sort of short-circuiting that misfiring from the irritated pudendal nerve. It took a while to get better; it was a lot of work - home physio exercises for an hour a day and cultivating a positive attitude. I have now been symptom-free for well over 4 years.

There is hope for this condition to improve, but it seems that the earlier one gets treatment the less time the disorder has to set in a very hard-wired pattern.

Wishing you the best as you try different things to change things.

PS - Some women and men found that if they sat less during the day, their symptoms were not as bad.

[Nesssieee]

Hi Laurina

Yeah I thought stress and anxiety made it worse!! I've been getting therapy for stress so that's why I think my symptoms haven't been as bad. I've only had this for a week so at the start of said week I started taking the birth control pill again and to be honest I've felt the symptoms lessen in the past few days so I'm hopeful but not getting my hopes up to high just in case. I've got a very positive attitude so I'm convinced this is going to get better for me. It's completely changed my outlook on life even in the past week of this happening to me. I believe that for me it's a hormonal thing and that with a change of diet and more excercise things will improve. I really do believe this is a stress response so if I can get in control of that, my symptoms will improve to.

My symptoms have pretty much turned from being unbearable to background noise with just a few bad spells within a few days so I'm really hoping this is a very positive sign. I honestly think that a bit of positivity helps a hell of a lot as well.

Did you have any side effects with lyrica? And can I ask what anesthetising gel you used?

I'm determined not to let this get me down and control my life. There's going to be a positive outcome.

[Laurina]

Stress management is so very important to this type of disorder so one does not panic. I'm glad you have taken initial steps on your own, and they are easing your symptoms.

With Lyrica, the hardest side effect was daytime sleepiness. As I got used to a higher dose, it didn't bother me.

Anesthetizing gel I used was 5% xylocaine ointment which my doctor prescribed. Some pharmacies have an over-the counter product called EMLA which is very similar. It must be applied 5-7 times a day to have a cumulative effect.

Love your positive attitude!!!!

[Leah]

Hello guys! I found this on my hunt to find out what I'm currently dealing it. Basically I am not sure if I have PGAD or not.

I had the following symptoms for 6 months so far:
-Constant arousal without any sexual stimulation, I could be sitting down watching television and be so aroused that I'd be forced to move around to prevent an orgasm. Sitting is pretty bad but when i walk around its fine. Also it does not go away, even after orgasm.

Many of the symptom i put up match with many articles I have read on this. The only reason I'm not sure is that it might not be PGAD is the fact that in the media there are so many videos of people saying they get 100 orgasms in one hour. I don't get any unless I trigger it or if i sit for atleast 1 hour in one position. I don't think i had one for a month so.. Could this be PGAD ?

I'm hoping I find some clue on what it is because It beens 6 month and I been on no medications and its so hard to live with

[Laurina]

Hi Leah,
If your arousal is unwanted and unprovoked it probably is PGAD. Those TV shows or newspaper articles talking about 100 orgasms an hour are often a misrepresentation of what a sufferer might have said in an interview, but to sell more newspapers guess what gets printed? I do not recommend media interviews as the editors get the final say on what is published, and not the person being interviewed.
Also, most women and men who have the disorder do not have 100 unwanted orgasms an hour or a day. Some women have reported having several in the whole day. However, most report that they feel like they are on the edge of an orgasm and have no spontaneous ones. Sitting makes that sensation worse, as well as stress.

Have you decided to go medication-free by choice, or are you still looking for an initial visit with a specialist?

Also, there is an online survey presently available for women who suffer from this disorder, and I encourage you to participate as everybody's experience is different in dealing with this. We can learn a lot from one another.
Check the link: http://pgad.sexlab.ca/

[Leah]

"Have you decided to go medication-free by choice, or are you still looking for an initial visit with a specialist?"

By choice yea, I was hoping over time it would heal. Mostly I was in denial, first thing i did was google my symptoms and it lead me to PGAD and i read it was not curable, then I never looked back into it again until today (6 months span).