PGAD - persistent genital arousal disorder

[AmberK2016]

Hello Violet,

I do have an inkling of what started it. I've always had a weird habit to hold my pee and use my kegel muscles in order to do this. Sometimes I would hold my pee in to the point that I would begin to leak, and then I would relieve myself. This has been going on for years ever since I was a young kid, but this sensation I'm feeling now only started after I held my pee in to the breaking point in early January. It sounds really stupid but it's just something I've done often without thinking too much into it. I've tried ice, and that seems to help. However I've also tried vagisil and it doesn't make the sensation go away entirely. It's more of the anxiety that I get that makes it hard for me to sleep, but I always have the fear that it will get worse and it makes my anxiety go through the roof.

[Violet M]

Well, it's understandable that it makes you fearful. I was freaked out too when it happened to me and I couldn't sleep very well either. Even if nothing takes away the feeling completely, I think it's important to at least try things to dampen it while you are searching for the right treatments.

My guess is you have some pretty tight muscles if you are doing kegals. I think the PT evaluation will give you some valuable information. Be sure to ask them to press along the course of the pudendal nerve to see if you have any tenderness there.

Violet

[AmberK2016]

Yes, I've been considering that it's more than likely tight muscles, because I've tried to hold my pee again in the same fashion and it makes it feel worse, so definitely not doing that again. When I was also given pelvic exams, the speculum part hurt so bad I could barely stand it, and I've been told that I should only be feeling discomfort at the most. Is it possible that could mean I have tight muscles too? And thank you very much for your advice, I'm having a hard time being in the right mental state right now so it's relieving to know I'm not alone.

[Violet M]

That's true, the speculum shouldn't cause that much pain. That pudendal nerve innervates the lower 1/3 of the vagina and it runs between the muscles that make up the vagina on either side so a pelvic exam can really irritate those pudendal nerves. The difficulty is in determining whether the muscles are tight causing the nerves to be irritated, or whether the nerves are irritated from something like the ligaments impinging on them and the irritated nerves cause the muscles to go into spasm. For me it was the ligaments impinging on the nerves. Hopefully your PT will be able to help you figure that out.

I forgot to mention that you can freeze water balloons and insert them vaginally to numb things when you are trying to go to sleep. It's a little intense when you first put the balloon in so you may have to slide it in and out a couple of times until you adjust to the cold but it can really help numb things up and help you sleep. At least it did me. Some people have suggested you need to be careful of frostbite when you use ice which makes sense. I never had a problem with it but just be aware of the possibility and be careful.

You could also ask your physician for a prescription for valium suppositories to insert vaginally. Some people just insert valium pills which is cheaper. It is a muscle relaxant and can help to relax the pelvic floor muscles.

Violet

[AmberK2016]

How did your PT determine that it was your ligaments causing the problem? Was an MRI used or something along those lines? And yes, I was sore down there for a day or two after each pelvic exam, so that probably didn't help. I will see about the ice being inserted, and I also bought Heal Pelvic Pain by Amy Stein, although I haven't heard of anyone using it for PGAD. Would you happen to know if anyone has benefitted from that book?

[Violet M]

Hi Amber,

I haven't heard of anyone using the book for PGAD so I can't say for sure. If she recommends stretching in the book that would be my only caution because if you do have a nerve entrapment, stretching can actually make things worse. I was stretching on the advice of a PT who was not knowledgeable about PN and it pushed me over the edge into full-blown PN. Later a different PT diagnosed me correctly.

There are several ways I know it was the ligaments.

1. The PT who diagnosed me with PN did an exam and said my pelvis on the right was hypermobile. She had me lie down with my right side on the edge of the table. When she pushed down on the pelvis it basically fell of the table. She was shocked and said my pelvis was hypermobile.
2. A chiro who tried adjustments said my pelvis wouldn't hold an adjustment for more than 5 minutes because the ligaments were chronically strained. This was consistent with my history of weightlifting.
3. When Dr. Antolak gave me a nerve block, he said that it was difficult getting the needle through the ligament. (It has to go through the ligament to inject the fluid near the nerve.)
4. When Dr. Bautrant did my PNE release surgery he said my ligaments were hardened and sclerosed. Having the ligaments cut and shaved away has allowed me to return to a great quality of life.

I did not have a pelvic MRI and back then they weren't doing the 3T MRI -- at least not that I knew of. I had an MRI of the lumbosacral area and lumbosacral plexus but those were OK. I think it's good to have a pelvic 3T if you can but they aren't entirely accurate for a diagnosis of PNE.

Violet

[AmberK2016]

Violet, thank you very much for your advice. It's scary to me that there's a chance that I have PNE, as I am not near any surgeons/doctors who actually know about it. I am hoping that it is just tight muscles, but I can't be sure. My symptoms come and go for the most part, so would that be an idicator that I have PN and not PNE? I hear for PNE the symptoms are constant.

[Violet M]

Hi Amber,

I can't say for sure but hopefully it's PN and just tight muscles. Distinguishing between PN and PNE can be difficult so I think the best strategy is to start with conservative treatments like PT and if you are lucky it will work for you.

Wishing you the best as you sort through this.

Violet

[Pcgonza2]

Hey coz69x,

Your story sounds super familiar to mine. I also have had recurrent infections which were supposed to be “treated” but who knows if they ever were completely. Since I stopped treating them I kept on having urinary symptoms and slight pgad sumptoms (only what felt like slight arousal). My urethra however has never stopped throbbing, or burning and it’s been 5 months. I went to a neurologist who diagnosed me with pn (although I’ve never had pain with sitting) and make me get two nerve blocks. I’m not gonna lie the nerve blocks helped a bit but I still get the burning in my urethra. Funny enough I went to a urogynacologist who ended up telling me I tested positive for a uti, again.... so I’m wondering if this is the same uti i previously had in 5 months but it’s now more strong. My question to you is what kind of medication were you taking and how long were you taking it for. I’m a strong believer than my sysmptms have to do with a uti despite of what the doctors say. I say this cause no one has been able to help me with the burning or uncomfortable feeling down there so I’m wondering wether I should take the antibiotics for my uti for a lot longer than the prescribed 7 days. Please let me know what you think! Thank you

Paola

[Carla]

I can happily tell you that I have full remission and my PGAd is gone.

Please excuse, that my english is not so good, because I am from Germany, but I think nevertheless all of you would like to know how it came to this point.

I suffered since three months of this condition and at first I was horrified, because not many german websites exist about this and in the international websites I only found comments, it was uncurable. But I can tell you, it is

I have tried many meds, there were many visits at different hospitals and doctors and many examinations (MRT Head, MRT Pelvis, Blood, Hormones, Pudendal Block etc. pp) but nothing was found, what explained the symptoms (arousal, unwanted orgasms, pain, anxiety).

But the symptoms were there, I did not imagine them and had a husband and a psychiatrist and neurologist, that believed me.

THe causes that could have been in my case war:
a bicycle accident
driving on a bycicle
the menopause
i took opipramol and stopped suddenly
i took estrogen and stopped suddenly
iron defiency (is known bei restless legs to be)

So as you see, too many causes to really know what caused the PGAD / Restless Genital Syndrome.

Nevertheless I started therapy, after trying many, this is successful and lead to full remission:

3 times a day Pregabaline / Lyrica a 50 mg (morning, midday, evening)

30 mg Duloxetine (Cymbalta) shall bei 60 mg in the morning in two weeks, beccause
At the moment I take 75 mg Venlafaxine (Effexor in english?), because I must first withdrawal that, when I have done this I will take 60 mg Cymbalta)
I think Cymbalta is responsible for most of the success.

Iron
1 tablet per day for my iron defiency

Magnesium Orotat (i dont know how this is called exactly in english)

Keltican forte (is this only in Germany availabe, it is Vitamin B12, folic acid and UridinMonoPhospat (dont know what this is called in english) and it helps the nerves to heal, could also be good for pudendal neuralgia.

Then tablets with a combination of all Vitamin B-Types (Called Vitamin B komplex ratiopharm in Germany)

It took a while, before it worked, luckily I had no side effects but obstipation, which I could do something against .
But you must be careful, because some of the meds have suicide danger as a rare side effect, so tell your relatives about this, that they watch you a little bit. ANd in some patients the side effects begin,, before the good work starts, so be patient.

I can sleep with some valerian tablets and with a little bit seroquel, which I will reduce to the valerian soon.

I can give you no health advice, because I am no doctor, but I can tell you now I am happier than I have ever before felt in my life, because the Cymbalta helps also for my depressed mood.

Wish you all best of luck and soon to fell well again.