PGAD - persistent genital arousal disorder

[calluna]

This is not an unusual symptom for people with PN, but it is not much discussed - I think this is because it is embarrassing. We need to get past this, I think! There is some confusion about what to call it, as well. Hyperarousal technically means something else entirely. What I am talking about is an uncomfortable feeling of sexual arousal, without any sexual desire. It can be very difficult to deal with.

I have found that tramadol seems to suppress it - at least, I have only had this symptom when I've not been taking tramadol, and every time I've had an episode of this symptom, it has subsided about 20 - 30 minutes after I take tramadol. The other thing that helps is using a lidocaine patch, but I can't wear that all the time - it is 12 hours on, 12 hours off.

I've been wondering what I can do about this symptom. I don't want to be taking more meds than I need. The GP whom I saw this morning is going to ask about it at the next practice meeting - he has the idea that I could try one of the antidepressants that has the side effect of preventing sexual arousal. I suggested trying to find the lowest dose of slow release tramadol that suppressed the symptom, and he says yes, that's another alternative. So they are going to discuss the various possibilities, and decide what to do next. I am fine with this - although with regard to preventing sexual arousal, I certainly don't want to go from one extreme to the other!

However - I also thought that I would do some asking, myself, because there is a considerable knowledge base here on this forum - lots of people who know lots about PN, and who know about this symptom.

So - what have you found helpful for this symptom? Ideas? Suggestions? Comments? How many of us have this symptom?

[calluna]

There is a proper name for this, I have found. PGAD - persistent genital arousal disorder.

I have found only one paper about it - here. They mention daily treatment with clonazepam, 0.5 - 1.5mg; or tramadol 50mg, or oxazepam 10mg. They don't specifically say, but from context those last two would seem to be used prn. Benzodiazepines, hmmm I think I'd rather have the tramadol.

I've also found another forum - here - but it is $25 for membership. I think I'll stay here! I do think we need to get past the embarrassment factor. Not easy though.

[carla10]

Hi Calluna, I think Gabapentin helps me. I am also on Tramadol for pain but when i tried to wean myself off gabapentin as i tohought it did not help with the pain those nasty arousals came back. So i am currently on low dose of gabapentin just for this reason.

all the best

[Karyn]

I'm so sorry you experience this horrendous symptom. I can only imagine what it must feel like and how upsetting it is. The closest thing I had to this symptom, was the sensation of a sharp nail or needle being stuck directly in the center of my clitoris. No, nothing arousing about that what so ever.

[calluna]

Carla - that's interesting about gabapentin. I did not have any episodes whilst I was on gabapentin either - but I was taking tramadol all the time. So who knows, maybe the gabapentin and the tramadol were both acting to suppress.

There is a page of references with that other forum, with links to some more papers. Pudendal neuropathy is mentioned many times. Things identified as helping are :-

tramadol prn;
various benzodiazepines, either on a daily basis or prn;
lidocaine prn;
nerve blocks;
TENS.

L-arginine, MSM, vitamin D, magnesium, physiotherapy, and antihistamine are also mentioned. There is anecdotal evidence of two Australian doctors recommending 5gm of L-arginine daily for 6 months, and getting either symptom relief or resolution. But it is just anecdotal, and we don't know what else was going on by way of medication or circumstances.

I can vouch for tramadol on a daily basis and lidocaine prn (5% plaster) myself. Plus there is the possibility of gabapentin helping too. So we've got several options for dealing with this already, it is at least nice to have choices!

I think that if my surgery doesn't sort this out, I'll be chasing nerve blocks after that. TENS for this strikes me as inconvenient to say the least - although if you didn't know about the other options, or wanted a drug-free answer, it would seem like a good idea I am sure. In the meantime, I shall mention all this to my GP when I go back in a couple of weeks. I don't mind going to a benzodiazepine or tramadol prn. I am not so keen on a daily benzodiazepine. And I am really not keen to go on citalopram, which was the anti-depressant suggested by the GP. That seems to be a bit off the wall.

Karyn, you are right, it is indeed very upsetting.

[Violet M]

Calluna, I think you are right that we need to get past the embarrassment of discussing PGAD because it's a medical condition/disease and nothing more. The only reason I talk about it though, is because I know how badly other sufferers need support and advice. It was one of my earliest PN symptoms and by far the worst symptom I experienced. I had severe burning pain and knife-like pain also but neither were as bad as PGAD. Thank God, I am 99% cured of this symptom since having PNE surgery.

Before surgery, I took an SSRI antidepressant (lexapro) that took away about 75% of the discomfort. The problem was I had to see a psychiatrist in order to get a prescription for it because none of my other docs were comfortable prescribing SSRI's. The psychiatrist didn't have a clue and actually wondered to the therapist as to whether I was a nymphomaniac. I can laugh now but at the time it wasn't very funny because between PGAD and PNE I wasn't getting much sleep at night and could hardly eat. Clonazepam was another helpful drug -- I was unable to get to sleep without it. Over time you can develop a tolerance to it so I think it should be taken on a PRN basis rather than around the clock.

I used to be a member of Jeannie's forum, the one you linked to above. There were quite a few women on that forum who thought their PGAD was the result of discontinuing SSRI's but I knew that wasn't my problem because I had never taken an antidepressant before. I was one of the few people in the group who believed that nerve damage/irritation might be the cause of PGAD symptoms. Eventually I got tired of being a lone voice for PN/PNE on the forum and I just didn't fit in there because having surgery for PGAD was not looked on favorably. I noticed it's still not on their list of treatments that you copied. If I had listened to them, I would not have had PNE surgery and I would probably still be living in torture. But in fairness to Jeannie, I think she truly does care about people and is trying to help. I just did not agree with her approach.

I also did not like the media coverage some of the women were agreeing to. It was far too sensational -- things like "Woman has 800 spontaneous orgasms a day". Believe me, there were some in the media who took that and ran with it!

I tried a TENS unit before surgery. I think it made my symptoms twice as bad. So, obviously, what works for one person may not work for another.

I noticed that in the treatment list you copied from Jeannie's forum, nerve blocks were listed as one of the options. Here are my thoughts on nerve blocks and PGAD. For starters, nerve blocks can cause PGAD. I know one women who developed severe PGAD from steroid nerve blocks and it has not gone away yet. There are others I know of who developed PGAD temporarily from nerve blocks but eventually it subsided. I think nerve blocks can be a valuable tool for diagnostic purposes but I would go for a Hollis Potter MRI before I would go for a nerve block because there are no risks of getting worse.

If you are a person with PGAD lurking on the forum reading this thread, I just want you to know that you are not a freak, it's not all in your head, and there are treatments that can help. So keep your head high and keep searching for answers.

Violet

[calluna]

Violet, thankyou so much for posting! So much helpful information there. (And what a nasty experience with the psychiatrist!)

So my doctor's idea about citalopram would seem to be not 'off the wall' after all, then. Lexapro is escitalopram, closely related to citalopram, which is an earlier drug. So that goes on the list as well!

Thankyou particularly with regard to the information about nerve blocks, that certainly does make me think again. It sounds like a dangerous option, when there are other treatments available without that risk.

You are absolutely right about PN on the other forum. It is mentioned many times as a cause for the symptom, but then nobody takes that line any further. Reading some of the links, I kept thinking - but that is PN, surely! - and yet they just went straight past it. Sadly, some prime examples of PN going undiagnosed, I think. Although I haven't seen any of the media coverage myself, I have heard about it. Unpleasant, to say the least.

My whole reason for this thread - by the way, maybe I should change the title? And include PGAD, now we have a proper name for the symptom? - my whole reason for this thread was to try to get past the lack of discussion - and lack of information - with regard to this symptom. It is a particularly nasty thing to have to deal with, and talking about it is even more embarrassing than talking about the pain. And nobody seems to know how to treat it! Things that help seem to have been discovered purely by accident. I had hoped that by sharing information, we could all gain - and it does seem that is happening. At least, I have gained! - I now have several treatment options to talk about with my doctor. And I hope that other people will be helped as well.

By the way, I was somewhat worried about talking to my GP about this, even though the doctors at the surgery did know about PN, and have been very helpful and supportive. Even after 3 children and numerous gynae surgeries, it is still possible to be embarrassed....... Anyway. He was certainly surprised. Puzzled too, with regard to treatment - he had never heard of tramadol being used for this - and interested, with regard to finding out what to do. But I was not met with disbelief, he was kind and very supportive.

So I would echo what Violet says - if you have this symptom, there are treatments that will help. Don't be afraid to go to your doctor.

[nyt]

I feel for all of you who have PGAD. I had it for a very short time after my long disability insurance carrier made me perform a 2 hour physical evaluation. I woke up the next morning with the PGAD symptoms. First time I cried because I woke up in so much pain and my right leg was so weak my husband had to help me get dressed. The crying was more from frustration, that I had gotten my symptoms under reasonable control and then had to do tasks of pushing, pulling, climbing stairs, etc. and it just set me back. Then the whole new PGAD was just the icing on the cake. It did finally go away several months later, thank goodness. I do have alot of stabbing feelings in my clitoris and have very decreased sensation to touch.

[Amanda]

Thanks Calluna for raising this sensitive subject

I have tried Tramadol which made me even more loopy than other drugs before....!!!
The only thing that works for me is to ice the area 24/7....it works for me to cool off those hot sensations.
When I dont have access to ice when away it drives me mad to be honest....I think its the worst form of torture..aching yet so painful.

[calluna]

Hello Amanda - have you had the opportunity to try lidocaine? I have some 5% lidocaine patches which can be cut up into pieces as needed. Not very convenient, but effective. And what about some of the benzodiazepines suggested? If you haven't had the opportunity to try these things, they might perhaps be worth a shot?