PGAD - persistent genital arousal disorder

[Amarant]

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.

In 2007 i had two kidney surgeries and I think it's the point were it all started. After that I noticed that i started to leak a pre-ejaculate when I'm aroused. I found that very strange, because it happened never before. But I thought it wouldn't be a problem.

After that, I think, I had some days or weeks where the PGAD was really strong. But it was never permanent. The symptons were:

- Tickling in the penis
- A lot of unwanted erections with a lot of pre-ejaculate.

But I was always able to "masturbate it away". After an orgasm it was always better and after 3-4 days it was completely gone.
In Summer 2019 it started to get really bad, and since then I have these symptoms constantly. They don't go away anymore. Orgasms feel very strange and I have no satisfaction after an orgasm and it feels "unfinished". The only reason I masturbate is to get rid of the erection which lasts about an hour before my penis gets hard again and start leaking pre-ejaculate. And even after an orgasm I'm leaking so much pre-ejaculate... Where does all this stuff come from?
If I don't masturbate the erection lasts for 2 to 3 hours. After that they usually go away for some time but will come back. Sometimes they are back after 5 - 10 minutes.
Luckily i have no pain at all, this would be the absolute worst...

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!!!!

[sadie]

Amarant
I am heart broken for you. u are at the start of your journey to get help so dont waist time suffering, take your 1st step to get a Dr. ... the only doctor that I know who sees men for this is Dr Conway in NH but there may be more. But give him a call, as his office is great n very compassionate. Thats all I have as I don't understand the medical hows n why's and just know I could feel every sad issue u shared in your post, and I will pray for you tonight . HOPE U CALL DR MARK CONWAY MONDAY TO START NETWORKING . HOPEFULLY THIS TIME NEXT YEAR THE 4TH of July OR SOONER YOU WILL HAVE SOME INDEPENDANCE FROM WHAT YOU ARE DEALING WITH NOW. ...I AM USING COMPOUNDED 20% ( UP FROM 10 A YR AGO ) IT MAY HELP WITH YOUR TICKLING OR BURNING IF U EVER GET THAT TOO . I SLEEP W FROZEN ICE BOTTELS BETWEEN MY LEGS INSIDE OF A FOOTIE, and 20% lidocaine, you may want to try that. . Stress makes it way worse n lyrica and Lexapro help a lot. But before starting meds you may want Dr Conway to see what your symptoms are before masking them w meds. You did not mention if you were on meds. Antidepressants should help derail pain and pgad symptoms from going to your brain, but it's a doubled edged sword ...as most people on it, find it effects orgasums in a negative way. But if it stops unwanted arousal in your case then you will not need to have an orgasum, which can give u some peace until you and a Dr get a game plan. It's weird that it started after kidney surgery and that kind of history n info will be very helpful I am sure. Sending hugs so sorry all the best u are in my prayers. Sadie

Ps my signature below, sounds like nothing worked , but talk to any one that knows me ..sure I am a pgad time bomb at times, and there are areas of my body like my tail bone which experiences arousal like feelings 24 /7 ( I use hot jel patches ther) but had it not been for meds and surgery and this forum and all the suggestions and validation, I would have detonated ten years ago .

Just watch out for benzos , they should only be prescribed for 4 weeks or so in most cases. I was on them from 2006 during onset of PN ( not pgad at that point) until about 2013 and it took over 5 years for my neuro transmitters to reconnect after discontinuance . THe GABA in my CNS is now damaged in its a long story but question the drugs , amounts and durations of each. use ASKAPATIENT.COM to see what other are saying about each med. AGAIN ...U GOT THIS ... Best of everything n let us know how u are doing ...your post can help other men like yourself.

[sadie]

Amarant
This is an add on to above post...forgot to add that You may want to put in the search bar on the top right hand corner the word's" Pudendal nerve block" to read other patient's experiences with pudendal nerve blocks.

It's often used as a diagnostic tool and if he suggests a PNB you may want to check to see what kind of steroid is used. I do not think he uses depo medrol but you may want to check into that as it is used off label for nerves I believe.


I will not give medical advice but will tell u I had burning from an injury to the Prudential nerve in 2006 and I took Amytriptyline for 4 years at a fairly high dose to manage the burning and was able to work .....but in 2010 the drug caused dystonia and the burning return because I had to come off but tiitrated very very slowly .

A doctor who was not doctor Conway prescribed 2 pudendal nerve blocks. after the 1st one I started feeling extreme arousal and anal itching but it later stopped but I was to medicated to realise it was the block ( I was on Valium for dystonia ticks ... n with drawing from clonazipam and was in a Pharmaceutical freefall)....anal itching and arousal from first PNB were 2 things I had never felt before even after coming off the amitryptyline or b4. I only had the burning return which felt like acid. However After the 2nd PNB all hell broke loose and I had a arousal in the anus , clitoris , labia minoria and majora and to this day I still suffer from PGAD . So use that search bar ..it really helps. GOD BLESS SADIE

[Nicolette2020]

Hi Everyone,

I am so glad to have found this forum. I am 50 and have pudendal neuralgia as a result of scar tissue from several c-sections and it seemed to kick off after I did egg donation 13 years ago. Maybe the IV drugs triggered it. No-one seems to have any answers for me. My pain was under control with tramadol, gabapentin and amitriptyline but about 2 years ago I started to experience a numb clitoris. This seemed to last about 6 months before the pain started. At first it was only a few days a month and I found that ' seeing to it' gave me some relief. However the pain continued to intensify and more frequently and now it is worse than ever. I seem to be having the worst pain most days and ' seeing to it' only makes it worse. There is no relief afterwards and within 10 mins the pain is as bad as ever. I wish i could get it removed because the constant searing throbbing all day long has me in tears and feeling hopeless. I haven't told my GP about it because I am so embarrassed and i have read that there is very little knowledge or understanding from the medical profession. Lately I have been using tiger balm and it's the only thing that works. It does cause irritation but the searing pain goes away long enough to send me to sleep. I have tried numbing gel, numbing spray, higher dose of gabapentin and nothing helps. I only just told my husband about it, a man whom I can tell anything to normally. I can't imagine the pain being any worse and don't understand why it's suddenly ramped up to this level. I am in UK and think I should go down the private route if I want a nerve block. GPs just throw different meds at you and I don't think I can cope with this much longer. Thank you for reading.

[sadie]

Nickcolette2020,
I did not want you to go unloved so I am sending this ....
Your post follows mine so I can't add anything else. But if you search SADIE in search bar on home page you can read my posts on pgad and the things I must have to cope, like expensive compounded 10% lidocane and sm ice bottles covered in footies etc. I am heart broken you are having this nightmare. I have written all I know in various posts here and.... I too think this site continues to save lives , if not sanity. You mentioned cutting" it all "off or something like that. .. if it were only that simple...I WOULD PERSONALLY SAY NO TO THAT as the nerve signals will just send to that area regardless of what is removed. In medical research, I read a paper where the Dr discussed this being done to a woman and it did not stop the arousal and pain etc in that area. .. and i imagine just made it worse I believe because now there is a psychological component of the loss of the clitoris. Maybe you can take screen shots of posts from pgad and woman n men with vigina n penis area pain n numness here and show to Dr and husband n let them keep n read. Violet wrote a nice piece on this in one of the news letters attached to this site ....June 2013 I think . Go to home page , left column at bottom NEWSLETTERS click n select the 2013 news letter . Print out and give that to them too. Support is KEY . Keep us posted I will read your post again to make sure I did not miss anything. GOD BLESS HUGS SADIE WHERE DO U LIVE MAYBE SOME ONE READING CAN SUGGEST A GREAT DR IN YOUR AREA.

[Balenul]

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

Violet who is Jeannie ?

[Violet M]

Jeannie ran a forum for people with PGAD but I don't know if it's still going. I haven't kept in touch with her.

Violet

[Balenul]

Jeannie ran a forum for people with PGAD but I don't know if it's still going. I haven't kept in touch with her.

Violet

Tbh....even if stopping Zoloft started Pgad for me i really think all Pgad cases have nerves involved....i had and have 2 years of huge urinary urethral symptoms

[Violet M]

I think nerves are involved too. Not sure what the exact mechanism is - maybe different for different people.

[Balenul]

Thanks Krissy. Yes I agree that the correct PT is really important and am glad you are able to see Amy -- she has an excellent reputation. Would love to know the name of the herb Dr. Echenberg uses.

Hi Violet,
When I see Dr. Echenberg next, I will ask him the name of the herb.
Krisssy

Even if is 12 years old...what herb ? Pgad is driving me crazy