PGAD - persistent genital arousal disorder

[Violet M]

Just ran across this article.

https://pubmed.ncbi.nlm.nih.gov/35849889/

Another possible cause for PGAD I hadn't heard of before.

[sadie]

Do u think the imaging there were hers n do u have access to the entire paper as I wonder how long she had pgad n how bad b4 it resolved after correction... ty for posting this violet

[Violet M]

There is a free version of the article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9537246/

In the description of the images it sounds like the images are hers. I can't tell from the article how long it took to completely resolve but it sounds like there was a least partial relief right after the first treatment. This was an interesting comment in the article:

In the present case, we speculated that the patient's PGAD/GPD developed because of sacroiliac joint dysfunction, pelvic tilt, displacement and spasm of the gluteal and pelvic floor muscles and ligaments, and eventually pudendal nerve entrapment.

I wonder if there is anyone in the US who would be able to use the techniques described in the article.

[sadie]

Resetting of the subluxated sacroiliac joint resulted in complete remission of the patient's symptoms.

This was how she got relief but it's way over my head.. who does that and how? Right ? U got me.. ty violet

[Violet M]

Probably a manual therapist? You're right, it sounds a little complicated.

[directorguy]

Hello, I'm new to this forum and wanted to share my story. No doctor could help me so far. I am male and 34 years old.
..
I read a lot of men who have problem maintaining an erection or have pain. For me it is the opposite.
Are here any men who can relate this? I'm really desperate, because I think it wont go away anymore and I don't know what to do. I hate it so much!!!!

Hi Amarant - I'm male, 47 years old. My problem is related closely to yours, but is slightly different.
For me, the sexual arousal is not an erection, it's a nerve somewhere deep inside my perineum that causes the persistant (and highly irritable) sensation that I need to ejaculate.
The sensation is heightened during my drowsy period before sleep and is so irritable, won't allow me to fall asleep - I just lie there awake for hours begging it to leave me.
If I give in and then masturbate to ejaculation, I immediately have what I call a 'magic 30-minute window' of relief whereby if I'm lucky, I will fall asleep before the time's up.
If I don't fall asleep within that 30-minute window, the sensation returns and intensifies until I have to go a round 2 (or just put up with it until I fall asleep around 6 or 7am).

The sensation isn't just there at a pre-sleep stage, it's always there - I can even feel it within me now, it's just not affecting me as deeply as the point where I need to sleep.
Personally, I don't believe this is pudendal neuralgia - Because if I'm right (and please correct me if I'm not), for PN there needs to be pain. I'm not feeling any pain, just a terribly annoying sensation that won't go away.

I've never had any operation and am otherwise very healthy in body and mind. What I am learning is that it's a very rare condition - Whether that is because nobody talks about it (as it's embarassing), then maybe it could be more common than we think. Like you, I do experience erections that won't go away sometimes - But I wanted to stress that this isn't always the case, the main issue for me is that stupidly annoying sensation in my perineum. Please re-evaluate your condition and think about what the real issue is (for me, I can put up with erections - it's that sensation that's the issue).

There is an interesting medical journal article from 2013 here:
https://www.bjmp.org/content/persistent ... ysis-cause

Also a male, but they appear to give some weight to a vasectomy he had as being a potential psychosomatic cause. For me, like you, I'm still looking for answers.
I'm just not sure if PN is barking up the wrong tree yet.

[sadie]

Directory Guy

I am so sorry .. look on this sites dr list and see if you can get a dr and a diagnosis . As for pain as a symptom of pn... that is individual I think. My 24 hr arousal in right labia minora and clitoris is not pain it horrible and satanic but not traditiona pain. I have arousal in my tail bone SP from 17 pudendal nerve blocks that sometimes turns to pain. I am so sad for both of you men...and hope you get some Lexapro or Lyrica or both to help. I do not suggest a PNB. Do u know what started it and when .. start a diary . And if stress makes it worse that does not mean it's in your head as all the nerves connect to the CNS and that's your brain too . Stress makes mine worse. I am sorry I am not much more help or any at all but ... if you think you know when it started or what started it that may help your Dr get to the bottom of things. I understand about sleep n the 30min window. I use 16% menthol ( do not use anything on your body with out asking your dr I just am saying what stops the sexual seething after I manage the various areas usually not associated with arousal ) and i sleep w frozen ice bottle between my legs w a footy over it and pray to God when I am trying to get to sleep in my 30 min window. I hope you do not have to work. I could not possibly . Apply for disability asap as it may take a while to get diagnosis n treatment... it doesn't mean you have given up it means it will let you exhale while you get treatment . .. u can always cone off of disability when you are well. Hugs and prayers to all . Sadie

[Violet M]

Hi Director Guy,

What you are experiencing sounds so similar to what I went through in the initial stages of pudendal neuralgia. I didn't have much pain but I had that nagging arousal and it was worst when I was trying to get to sleep. I hardly slept for several months and it really messes with your head. Then I started taking ambien which helped, but later I was switched to clonazepam (klonopin) and I was able to get some sleep. Later, I also started taking an SSRI - first zoloft but then switched to lexapro because it had less GI side effects for me, and that helped dampen the daytime symptoms somewhat to where I was able to manage with the PGAD. My symptoms slowly progressed to include severe pain, but in the initial stages, PGAD was the main symptom. Just to give you a bit of hope - I am 99% cured of PGAD now and I don't take any drugs for it, and I know other people who got rid of it or found treatments to manage it. I was able to slowly wean off of the drugs about a year after pudendal nerve release surgery. Some people are opposed to drugs, and I understand that because I hate taking drugs, but they were a lifesaver for me when I was going through the worst of pudendal neuralgia. Sometimes there is some trial and error in finding out what works for you and you have to start and stop them cautiously - weaning on and off slowly for some of them.

Typically, least invasive treatments first are the way to go. Some people have success with the mindbody approach but it was completely ineffective in my case. Surgery is not for everyone, but if your history, clinical exam, and symptoms point toward a nerve entrapment, it is a treatment option for some people. With that said, there are a lot of diagnostics that you would want to pursue before zeroing in on a diagnosis of nerve entrapment because there are other potential causes of PGAD. Some of those diagnostics would include MRI's of lumbosacral, lumbosacral plexus, and pelvic areas. Make sure they check for tarlov cysts. If you can get the pelvic MRI with the Hollis Potter protocol that would be good. She's listed on this page https://www.pudendalhope.info/united-st ... icians/#NY but her protocol is used in various places around the US. Other diagnostics could include PT evaluation for any musculoskeletal anomalies and an internal anal exam to see if pressure exerted at the ischial spine by the therapist elicits any tenderness of the pudendal nerve. If your PT evaluation shows a tense pelvic floor, you could consider trying Botox although it might just be a temporary solution because it has to be repeated on a regular basis. You might possibly try a diagnostic nerve block - although I agree with Sadie that you would want to proceed with caution on nerve blocks. Prof. Robert cautioned against more than 3 pudendal nerve blocks - two at the ischial spine and one in Alcock's canal, because steroids can cause further nerve damage. Most PN doctors would not even consider a surgical option without at least trying a nerve block first though.

Anyway, I'm just brainstorming what some of the options are out there. Hopefully your healthcare professionals will be able to guide you to the right treatments and that you will find healing and relief.

Violet

[Lovepeps]

hello, i'm new here. I am a 51 year old woman who has been in menopause for 7 years. A few weeks ago I started experiencing pressure in my butt. the doctor said it was constipation and was given bags to make it easier to defecate. I also went to a pelvic floor physiotherapist and she noticed a lot of tension in my vagina and butt. My tailbone was also swollen. She has corrected this again. I have been free of complaints for 2.5 weeks, but on Sunday evening I noticed a sensation in my vagina and to the right of my clitoris. I was shocked by this and started Googling and came up with PGAD. then came a lot of fear. Very anxious. Didn't sleep. The feeling is still there and sometimes so intense that I don't know where to look. Touch is also sensitive. the only thing that gives me peace at the moment is oxacepam. Could this be due to an overactive pelvic floor? I also see an oncological psychiatrist because I had breast cancer last year. She also made a lot of sense to me. Do I really have PGAD now, can I still get rid of it?

[sadie]

Lovepeps
So sorry to hear all this. I too have had arousal to the rt of clitoris ... but mine is very wide spread. So i can imagine your horror. I suggest rubbing the area and or holding an ice cube directly there and after it melts add liquid 16% menthole. Then freeze water in a sm coke bottel so you can place that between your legs in a sox at night to relax ....i get 16% out of a container of ICY HOT ROLL ON if you cant get someone to remove the ball in top with a screw then use the cream ...see below

I used to use cream ICY HOT ADVANCED has 16 % of menthol but also has camphor .

I used that till i got a friend to remove the roll on ball on the stright menthol. At least that will get u started.

That drug you are on now is dangerous and is given to help people get off Alcohol. That is if i googled it right.

There are a lot of dangerous side effects? Y did he perscribe that? Is it for pain or aniety. If u do not wish to answer i totally understand ... i just thought if for blocking symptoms maybe 10mg of Lexapro may be considered.

The feeling in your anus could very well be attributed to your pudendal nerve as its function is Urination, defication and sexual function.

At different points and sometimes at the same time, I experienced the feeling of a broomstick up my rear end, itching and or arrousal. So yes i understand that feeling too.

So it looks like you did not have arousal on the right side clitoris, until you went to see the PT.

the PT could have done something internal to aggravate the pudendal nerve. Was the pt treatment internal or no?

What do u mean your dr gave u "bags " to help u go to bathroom. ?? Did i read the right?

What other drugs have you been on in the past 3 months?
And have come off of as you say you're only on one now. Any antidepresants etc...??

Have you had any surgeries or nerve blocks of any kind or injuries a fall in last 3 months.?

I will try to get back to you after you respond but mom is in nursing home and i am with her and i am fighting pgad daily.

As for your c pgad " i believe in time it will pass as it was prob a flair from the pt but will know more from your answers plus there are so many that know sooo much more about the body here on tjis forum. .. who will chime in as i am a novis and only know what i know from limited research and lots of 1st hand experience and just repied so you knew you were heard and it will be ok. Sadie night night tomorrow will be a new and better day my friend.