PGAD - persistent genital arousal disorder

[Violet M]

Quickly, I can try to answer your questions -- you can send me a private message with your questions if you want. On this forum, we focus primarily on PGAD caused by pudendal neuralgia so I can't really say much about PGAD related to mental or psychological problems. My PGAD was not related to psychological problems at all, it was related to nerve damage.

Violet

[JasmineUK]

I'm new here, have been loitering, and I just want to share my story. My PGAD has gone.

So basically my PGAD symptoms started when I was pregnant and continued long after the baby was born.
Let's bear in mind I NEVER had a spontaneous orgasm but I was always aroused down there with a slight burning sensation accompanying it. Months passed and it wasn't getting better. In some ways it actually got worse. I had Restless Leg Syndrome as well. Depression and anxiety took over and I became a mess.

I called on a Sexual Health doctor in London (as I live there) and he said I was a classic case for PGAD. I am hypermobile, so when I became pregnant, my pelvis may have over stretched. I remember huge pain in my pubic bone mid-pregnancy and he says THIS bruised my pudendal nerve. As well as being hypermobile, I suffer from anxiety disorder, so that made the pain/sensation more heightened.

He prescribed Amitriptyline and told me to go to a Women's Physio and practice mindfulness.

Personally I found mindfulness too difficult and the physio only helped a little bit. Hey, maybe I haven't done it enough yet. My last resort was to try Amitriptyline... and guess what? One month after starting it and my PGAD had COMPLETELY disappeared. I've been on it for ages now and I'm well aware I'm probably only masking the sensation and haven't cured it... but for me that's enough... as hopefully the nerve can heal now without me feeling it doing so.

So for anyone who got PGAD in a similar way to me... tell your doctors to try Amitriptyline or a similar drug from 10mg to 70mg. 30mg worked for me.

Thank goodness for that drug. It might not work for everyone, but in my circumstances it has relieved me 100%.

[Violet M]

Well, I think it's great that amitriptyline is keeping you PGAD-free, even if it is masking the symptoms. As long as you aren't having side effects it seems well worth it and like you say, maybe the nerve is healing. Thanks for posting your story.

Violet

[Laurina]

Jasmine, I'm so happy for you, that your symptoms have stopped! This will be encouraging for pregnant women who develop the disorder.

Thanks for sharing!

[Katybug]

I got pgad from taking 10 mg of nortriptyline w Gabapentin for chronic pelvic nerve pain. It helped the pain somewhat, but did not make me drowsy at all. The pgad was so bad I had to go off it.

[Violet M]

Thanks for the info, Katy. I have never heard of those 2 drugs causing PGAD but it just goes to show there is always a first for everything. When you went off the drug did the PGAD go away?

Violet

[Krl410]

I've been in a pretty good place regarding this awful health issue. Found a good doctor and have been on gabapentin which has helped a lot.
This may be a stupid question but I thought I'd ask anyway. Are probiotics okay to take in regards to pudendal neuralgia or pgad?
Thanks in advance

[Violet M]

I can't see any problems with taking probiotics. I have taken them for years.

Violet

[Belle]

Greetings, I am new here and really need some advice and support. I've been suffering from what I believe is PGAD for the last two weeks. My anxiety is out the roof! The problem is I'm also currently working and living in W. Africa without decent medical access. I've been living on the internet looking for a diagnosis. I'm not sure if my symptoms are being caused by PN or PFD. Initial symptoms started in early September when I thought I had a yeast infection (wasn't a typical yeast infection - no discharge), but I self-treated and the itching never went away. It was more of an internal type itch (under the skin of the labia and clitoris- felt like something crawling). I would also get random stabbing pains inside the vagina. I even told the doctor that it felt more like a nerve issue. He seemed to think I was a little nuts. This lasted for two months unresolved. I was able to get tested (swabbed) a few times, but every test came back negative for yeast or bacteria. I was also tested multiple times for a UTI with negative results. Two weeks ago the itching basically disappeared and this new arousal symptom just began. The arousal is not from the clitoris, but deep inside the vagina. It also feels like my legs are a bit weak and the bottom of my feet get sort of an internal nervous itch. I noticed bending over/squatting and sitting in certain positions really sets the feeling off. I normally can find some relief after a few minutes by laying flat on my back with my knees up. It also helps a bit if I push or keep pressure on the vagina (no masterbation). Urinating also relieves the arousal feeling for a brief period. I'm terrified that these symptoms will only get worse and that I won't be able to seek any relief. Would anyone know if this sounds like it's related to PN or an issue with my pelvic floor? I know I must travel back to the U.S. to see a specialist for a diagnosis. My husband is not very supportive and feels that this is all in my head, as I've had anxiety issues in the past. He won't even look at the articles I've printed for him. I do feel my anxiety might have even caused this. I've been given Xanax by a doctor here, as it relaxes me and has helped the symptoms subside a bit. She wants to put me on Lexapro, but I'm hesitant to do so until I'm examined in the U.S. and receive a diagnosis. Thank you for listening, as it made me feel better to reach out to folks who understand. I'm so sorry you're all suffering with this horrible illness.

[Violet M]

Hi Belle,

It can be difficult to distinguish between PFD and PN because often one causes the other but I will say your symptoms sound quite similar to what mine were at the beginning of pudendal neuralgia. There was a stage I went through, where I just had an itchy feeling without pain and then developed PGAD without pain. Eventually it was a combination of PGAD and pain. If you try to do some vaginal myofascial release yourself (internally with your finger) does it flare up and cause pain or does it feel similar to relieving tight muscles with massage? If it feels like you are releasing tight muscles and it brings some relief then maybe it is just tight pelvic floor muscles. However, the fact that you are having stabbing pains and that the pain is related to certain positions sounds more mechanically related than due to just anxiety and tight muscles, but I could be wrong.

I'm sorry your husband isn't being very supportive. I seriously doubt this is all in your head. So many of us have heard that or similar theories before when nothing could be further from the truth. Please keep your courage up, believe in yourself, and seek out the medical treatment that you need.

Violet