I may have developed PGAD - Persistent genital arousal (male)

[kendis125]

Hi,

I am freaking out for the past couple of days. I have been having IBS for more than a year, but not so bad for last couple of months.

Since sunday I needed to go really badly to toilet, but I postponed it to monday. So, eventually on monday I went, not sure if poop pushed on my nerves or something, but maybe that triggered it?

However, I also have urethritis that I am treating with autovaccine, started month ago. I take it for 10 days and then 20 days not. I am nearing the 20 day cycle and will start taking it tommorow. Maybe this is something I am feeling because of urethitis? I felt stabbing/cutting pain in my penis on monday.

Anyways, I have been having problems since tuesday. It started happening on bus ride in the morning, since then I have been feeling each day more and more aroused sexually, I feel like my whole penis shaft is very hypersensitive in a sexual way, and I keep getting those surges of feelings where for no reason get something like "almost orgasms"? I feel this sometimes when I just walk, or when I sit, or when I am on a bus.

Masturbation doesnt relieve it at all, hell, I tried masturbating like 8 times yesterday and all it did is make it worse. It was never enough. It is certainly not solution. And I know I am not horny because I do not think about anything sexual and I feel it randomly. However, after masturbation I also felt swelling/burning pain somewhere between my intestines and bladder. Maybe my prostate is inflamed?

So, this is day four since this started and it is driving me crazy. I almost feel like crying. I cannot even go out, sometimes those feelings get so strong that they become totally overwhelming and I do not wish them to overcome me and finish myself off in public like a creep. Stopping them is however extremely difficult.

I wish and hope that all of this is only in my head and is happening because I focus on it, but I fear that it might not be. That is what I am trying to tell myself, that it is only in my head. I am extremely terrified that life as I know it is finished.

Please, what should I do? Does it sound like PGAD? Or have I started feeling those surgres/hypersensivity because I felt it once in bus on tuesday and since then I have been focusing on this? Or could it be result of urethitis or could it have been that need on monday to poop triggered it ?

I am seeing a GP on monday,on tuesday urologist and in week and half a neurologist.

What do I need to get tested for please to rule PGAD out?

 

[JanAtheCPA]

What do I need to get tested for please to rule PGAD out?

This is not a question we can answer here because we are not medical professionals.

The focus of the work we do includes getting people to stop describing the lengthy details of their physical symptoms, and start referring to their symptoms in the most generic and simplest way possible while learning how to think psychologically instead of physically, based on the theories of Dr John Sarno, who has written several very well-known books on the subject of psycho-physiological disorders.

You have posted uncomfortably intimate details of symptoms but there is no indication that you have done any research regarding the purpose of this forum. I understand that this could be desperation, but I have to be honest, it also occurs to me that there are people who might derive something from doing this. As you can see, your post has not attracted any replies in over a day, which means that other people are steering clear. As a forum moderator, I felt I needed to address both possibilities.

Here's the suggestion: go to the main page of our wiki at tmswiki.org and start reading about TMS, then post again. If you want to discuss symptoms, do it as generically as possible, keeping it to only a couple of words, such as "possible PGAD" or "urethral pain". No details! This is a habit you need to develop IF you are dealing with the mindbody condition we call TMS - but you won't be able to say that this is possibility until (1) you complete your medical exams and (2) you know what TMS is.

It's also possible that you have mental or emotional problems that are beyond the scope of this forum, and I would seriously advise, in addition to being checked out by medical professionals, that you please also seek immediate psychotherapeutic help.

 

[NicoleB34]

i've had this, it's the worst symptom i've ever felt. It was like a mix of arousal and throbbing electricity. it's one of the hardest pains to have and not freak out. first off, dont panic because you'll feed the pain. I know, easier said than done. When i flare these days, i dont analyze it any more. i dont obsessively think things like "will it be gone by the weekend? was it worse today?" Instead, i try to say to myself "yeah, it sucks, but it doesnt matter why it's flaring...it will calm down. maybe tomorrow, maybe in a week. but it will. just trust that. it's not dangerous even if it is unpleasent". Then i try to do everything i'd normally do as if i wasnt in pain.

PGAD is a subset of pudendal neuralgia, and PN is almost always TMS. There's a reason pelvic pain conditions like interstitial cystitis, IBS, etc. tend to cluster together. Some doctors call the whole group of conditions under the name "chronic pelvic pain". It's because many of those lower pelvic organs share a similar nerve network, and if the brain ramps up the sensitivity of one pelvic location, it can very easily "jump" to a nearby structure. I know i made it sound more clinical, but there is a very strong brain component in all of pelvic pain. Some doctors will call this central sensitization, and people here will call it TMS. It's all pretty similar and mind/body techniques can really help.

 

[Dorado]

PGAD is a subset of pudendal neuralgia, and PN is almost always TMS. There's a reason pelvic pain conditions like interstitial cystitis, IBS, etc. tend to cluster together. Some doctors call the whole group of conditions under the name "chronic pelvic pain". It's because many of those lower pelvic organs share a similar nerve network, and if the brain ramps up the sensitivity of one pelvic location, it can very easily "jump" to a nearby structure. I know i made it sound more clinical, but there is a very strong brain component in all of pelvic pain. Some doctors will call this central sensitization, and people here will call it TMS. It's all pretty similar and mind/body techniques can really help.

I agree.

 

[Deleted member 8261]

I really don't think you need to get tested. You just have to have acceptance. It is a symptom of TMS and it will pass. Try not to focus on it and just live your life normally. It will go away and likely it will jump to some other location. Sending you so much love!

 

[westb]

i've had this, it's the worst symptom i've ever felt. It was like a mix of arousal and throbbing electricity. it's one of the hardest pains to have and not freak out. first off, dont panic because you'll feed the pain. I know, easier said than done. When i flare these days, i dont analyze it any more. i dont obsessively think things like "will it be gone by the weekend? was it worse today?" Instead, i try to say to myself "yeah, it sucks, but it doesnt matter why it's flaring...it will calm down. maybe tomorrow, maybe in a week. but it will. just trust that. it's not dangerous even if it is unpleasent". Then i try to do everything i'd normally do as if i wasnt in pain.

PGAD is a subset of pudendal neuralgia, and PN is almost always TMS. There's a reason pelvic pain conditions like interstitial cystitis, IBS, etc. tend to cluster together. Some doctors call the whole group of conditions under the name "chronic pelvic pain". It's because many of those lower pelvic organs share a similar nerve network, and if the brain ramps up the sensitivity of one pelvic location, it can very easily "jump" to a nearby structure. I know i made it sound more clinical, but there is a very strong brain component in all of pelvic pain. Some doctors will call this central sensitization, and people here will call it TMS. It's all pretty similar and mind/body techniques can really help.

Very helpful summary and a good reminder of how to deal with flares - always useful, at least to me @NicoleB34. Thanks. I have the IBS/rectal spasm and IC symptoms and I've always believed they were linked, even before learning about CS/ TMS. It really does come back to acceptance, trust and soothing, along with the inner work.

 

[NicoleB34]

Very helpful summary and a good reminder of how to deal with flares - always useful, at least to me @NicoleB34. Thanks. I have the IBS/rectal spasm and IC symptoms and I've always believed they were linked, even before learning about CS/ TMS. It really does come back to acceptance, trust and soothing, along with the inner work.

the timing is great because i'm not in a horrible PGAD flare mixed with pain, and i suspect it was caused by a stressful event at work. I do sometimes struggle taking my own advice when i'm in serious pain. Right now, the thing that honestly saves me when i'm having a horrible flare that meds cant dull (yes, i still occasionally take extra meds in a time of crisis since the nature of my job doesnt allow for many days off. we have to be able to function in society after all) but in an acute flare, a TENS unit can be a life saver. I dont know if you own one, but these days you can get them off amazon (dont bother with the types that allow tons of electrodes, 2-4 is fine and easier to deal with). When i have bad rectal pain, i find that the TENS takes almost 100 percent of it away, but only while it's on, and it can be annoying to walk around with electrodes stuck to you, but anyway, for rectal pain, putting one electrode right on top of the strongest point of pain (in my case, just inside the butt cheek, you'll need to remove hair btw!) and the second (you need at least two for the machine to work) somewhere else like the sitbone or sacrum. The rectal branch is really close to the surface so i find it works best for rectal pain. Perineum pain is harder to treat because the nerves are deeper. Same with urinary pain, i havent had luck with the unit because of nerve depth.

For PGAD, it depends where you feel the sensations. if it's deep in the perineum or urinary tract, then the TENS may not help, but if it's the tip of the penis, then i find that the TENS unit can scramble the nasty signals pretty well. You'll have to put one electrode as low on the pubic bone it can go, pretty much at the beginning edge of the genitals, then the other electrode by the sitebone or sacrum. Again, you'll have to remove hair! this method of putting the electrode at the bottom of the pubic bone can block some of the signals of the dorsal pudendal branch which controls genital sensation. I'd say it takes about 50% of the icky feeling away. Seriously consider a TENS if you can. It's not always miraculous, but sometimes it is.

 

[directorguy]

I don't think what the OP is talking about is pudendal neuralgia or TMS. I found this thread by searching for PGAD and did want to add my 2 cents because I believe this to be a much rarer condition which I'm trying to get answers on myself.

For PN or TMS there needs to be pain. And for me at least, there is no pain, just an incredibly irritating sensation of needing to climax constantly. It's absolutely not a joking matter, it's very real and very difficult to live with.

I just wanted to say of the original OP, I feel your anxiety over this. I am also experiencing this issue and as it appears to be so rare, is often misunderstood or thought to be some kind of joke when we try to cxplain it.
There is a very interesting article on the British Medical Journal site which appears to describe the issue more clinically here:
https://www.bjmp.org/content/persistent-genital-arousal-disorder-male-case-report-and-analysis-cause (Persistent genital arousal disorder in a male: a case report and analysis of the cause | British Journal of Medical Practitioners)

Although in that patient's case, they appear to give some weight to a vasectomy that he had prior to onset of the condition. I never had any such operation and I am otherwise a very healthy male in his late 40s.
They believe it could well be psychosomatic, but for me, the sensation is definitely physiological and appears to come from within the perinium.
In my case, I don't think I have PGAD because I don't meet all the conditions of the definition of it:

The working definition of PGAD is as follows:
1) Persistent physical arousal in the genital area
2) in the absence of conscious thoughts of sexual desire or interests
3) associated with spontaneous orgasm or feelings that orgasm is imminent and
4) the symptoms not diminished by orgasm.

In my case, the symptoms are diminished by orgasm for a period of around 30 minutes, which gives me enough temporary relief to hopefully fall asleep (the much-intended outcome for me personally).
I think 'physical arousal' mentioned in their definition is vague and may not necessarily interpret as 'having an erection' - Having the highly irritable sensation is enough to satisfy that definition.

Also, I'm not sure I agree with the statement, "feelings that orgasm is imminent" - It's not that I feel it is imminent, it's just the very irritable sensation of needing to climax constantly... (Obviously when you don't want to or are not thinking thoughts that should make you feel that sensation in the first place).

I'm looking for help wherever I can find it. It's getting to the point where I can only go to bed when I'm extremely tired. Even then I lie awake for 2 hours devoid of the sensation before the sensation starts to intensify. Nothing, nothing at all will relieve it. I will then have to deal with it for the next 2 hours+ before falling asleep finally around 6 or 7am. I sometimes give up and bring myself to ejaculate, which then provides that magic 30 minutes where, if I'm lucky, I can get to sleep. If not, it will intensify again and the only respite is round 2.

I've tried music, I've tried getting up in my dreary state and walking around the house, I've tried routines, I've tried no caffeine - You name it, I've tried it over the years.

Problem is - Our condition is so incredibly rare, I doubt anyone can help us.

 

[Cactusflower]

@directorguy
TMS is not just a pain “thing”. It can be strange neurological type symptoms POTS, exhaustion “diagnoses”, urinary frequency, tension, CF/ME, anxiety, insomnia, eye twitches, swelling, skin issues, dry eye..
You name it, it could be TMS. Why, because TMS is not about pain, it’s about emotions, mindset, personality…
I suggest looking at the free programs available here, there are two, you can choose one: tmswiki.org (scroll down), and if you have not yet read The Divided Mind, you might want to pick it up. It will help you realize TMS is about more than pain, and it might help you in your search.

 

[JanAtheCPA]

They believe it could well be psychosomatic, but for me, the sensation is definitely physiological

That's the very definition of every symptom or any symptoms brought on by the TMS brain mechanism.

All physiological sensations are generated in the brain, even though they feel completely physical - ie "real". This is a scientific and neurological FACT.

You can educate yourself about how sensations are created and how the brain can be retrained to reduce them by reading about the phenomenon of phantom limb pain. The pain coming from a limb that no longer exists is just as real to those individuals as your symptoms are to you.

Our forum is devoted to this particular understanding. Doing the work we do here requires acceptance of this basic fact. The Divided Mind is the book that got me started on a completely different path.

 

[Bonnard]

I wish you and the OP well. The symptoms you're describing and the effects on day-to-day life seem daunting. Hang in there!
There were a few things that came up for me--reminders of things that seemed promising at first, but they pulled me away where I wanted to go---took me away from freedom from symptoms.

I don't think what the OP is talking about is pudendal neuralgia or TMS....

I urge caution in saying something is not TMS because our understanding of TMS has greatly expanded on the groundbreaking work of Dr. Sarno, and it continues to expand. While we don't give medical advice (more below), I think (just my opinion) that we should also be careful about ruling out TMS for others. Mind-body symptoms are so tricky and can show up in so many different ways for different people. It's easy to see something and say, "That looks exactly like TMS." I think it's much harder to say something is not TMS for someone else.

.... Problem is - Our condition is so incredibly rare, I doubt anyone can help us.

This is classic thinking for folks struggling with TMS symptoms. My situation/symptom is different and I'm not going to be able to find help here or anywhere. This gives strength to the physical distraction and can keep us away from the needed work to get relief from the symptoms. In my case, I had one unusual/rare diagnosis along the way, and I fell into this thinking for a time.

.... There is a very interesting article on the British Medical Journal site which appears to describe the issue more clinically here:

https://www.bjmp.org/content/persistent-genital-arousal-disorder-male-case-report-and-analysis-cause (Persistent genital arousal disorder in a male: a case report and analysis of the cause | British Journal of Medical Practitioners)....

Since we're not doctors, you definitely won't get any medical advice or medical commentary on this forum (as mentioned above in the post from @JanAtheCPA.

Reading medical journal articles can be risky b/c we're not reading them within the context of the larger medical literature, or with a medical background to fully understand them. And, if we go that full route, we're going heavy into the medical nature of our condition, which I think can take us away from the solution. I saw this a ton with Covid when friends/family were reading the medical literature themselves and coming up with their own answers.

Thanks--relating and just trying to point out some paths I took that didn't get me to a better solution...Wishing you well on finding a way out of these crazy symptoms! Take care.

 

[JanAtheCPA]

I think (just my opinion) that we should also be careful about ruling out TMS for others.

100% agree with this statement.

 

[Balen]

This is not a question we can answer here because we are not medical professionals.

The focus of the work we do includes getting people to stop describing the lengthy details of their physical symptoms, and start referring to their symptoms in the most generic and simplest way possible while learning how to think psychologically instead of physically, based on the theories of Dr John Sarno, who has written several very well-known books on the subject of psycho-physiological disorders.

You have posted uncomfortably intimate details of symptoms but there is no indication that you have done any research regarding the purpose of this forum. I understand that this could be desperation, but I have to be honest, it also occurs to me that there are people who might derive something from doing this. As you can see, your post has not attracted any replies in over a day, which means that other people are steering clear. As a forum moderator, I felt I needed to address both possibilities.

Here's the suggestion: go to the main page of our wiki at tmswiki.org and start reading about TMS, then post again. If you want to discuss symptoms, do it as generically as possible, keeping it to only a couple of words, such as "possible PGAD" or "urethral pain". No details! This is a habit you need to develop IF you are dealing with the mindbody condition we call TMS - but you won't be able to say that this is possibility until (1) you complete your medical exams and (2) you know what TMS is.

It's also possible that you have mental or emotional problems that are beyond the scope of this forum, and I would seriously advise, in addition to being checked out by medical professionals, that you please also seek immediate psychotherapeutic help.

I know is old but your comment is kinda rough imo.I a am male and i suffered alot in last 3 years .I also have Pgad and this is a demon.You should be more gentle imo.I know what mind can do , what pure physical problems can do.I had a horrible surgery ( a pituitary apoplexy that damaged me badly for life ).Be more gentle please.
With respect

 

[Balen]

i've had this, it's the worst symptom i've ever felt. It was like a mix of arousal and throbbing electricity. it's one of the hardest pains to have and not freak out. first off, dont panic because you'll feed the pain. I know, easier said than done. When i flare these days, i dont analyze it any more. i dont obsessively think things like "will it be gone by the weekend? was it worse today?" Instead, i try to say to myself "yeah, it sucks, but it doesnt matter why it's flaring...it will calm down. maybe tomorrow, maybe in a week. but it will. just trust that. it's not dangerous even if it is unpleasent". Then i try to do everything i'd normally do as if i wasnt in pain.

PGAD is a subset of pudendal neuralgia, and PN is almost always TMS. There's a reason pelvic pain conditions like interstitial cystitis, IBS, etc. tend to cluster together. Some doctors call the whole group of conditions under the name "chronic pelvic pain". It's because many of those lower pelvic organs share a similar nerve network, and if the brain ramps up the sensitivity of one pelvic location, it can very easily "jump" to a nearby structure. I know i made it sound more clinical, but there is a very strong brain component in all of pelvic pain. Some doctors will call this central sensitization, and people here will call it TMS. It's all pretty similar and mind/body techniques can really help.

I don t agree here.Many times Pn is real and Pgad is real also , but most of the time is mixed especialy if you have Ocd like me.I have pure physical problems and i feel Pgad for me is more mental but not only.I met many people with Pn by entrapment , many Pgad induced by antidepressants or annular tears on back etc.Pgad is a deamon that few doctors have any ideea.I want to try Dr Sarno methods i feel my body and mind gave up.I suffered to much.I barrely survived a pituitary apoplexy 3 years ago but damaged me badly.I had horrible pure physycal symptoms and also Pgad after i stopped Zoloft ( is one of the many causes of Pgad ).My ocd don t help Pgad at all but for some Pgad is pure physical trust me.Some had annular tears got surgery and are cured....for me is meds stopping , Ocd and also prolly a back problem.My Mri don t look good at all but clearly after so much sufference i have central sensitization

 

[Balen]

I don't think what the OP is talking about is pudendal neuralgia or TMS. I found this thread by searching for PGAD and did want to add my 2 cents because I believe this to be a much rarer condition which I'm trying to get answers on myself.

For PN or TMS there needs to be pain. And for me at least, there is no pain, just an incredibly irritating sensation of needing to climax constantly. It's absolutely not a joking matter, it's very real and very difficult to live with.

I just wanted to say of the original OP, I feel your anxiety over this. I am also experiencing this issue and as it appears to be so rare, is often misunderstood or thought to be some kind of joke when we try to cxplain it.
There is a very interesting article on the British Medical Journal site which appears to describe the issue more clinically here:
https://www.bjmp.org/content/persistent-genital-arousal-disorder-male-case-report-and-analysis-cause (Persistent genital arousal disorder in a male: a case report and analysis of the cause | British Journal of Medical Practitioners)

Although in that patient's case, they appear to give some weight to a vasectomy that he had prior to onset of the condition. I never had any such operation and I am otherwise a very healthy male in his late 40s.
They believe it could well be psychosomatic, but for me, the sensation is definitely physiological and appears to come from within the perinium.
In my case, I don't think I have PGAD because I don't meet all the conditions of the definition of it:

The working definition of PGAD is as follows:
1) Persistent physical arousal in the genital area
2) in the absence of conscious thoughts of sexual desire or interests
3) associated with spontaneous orgasm or feelings that orgasm is imminent and
4) the symptoms not diminished by orgasm.

In my case, the symptoms are diminished by orgasm for a period of around 30 minutes, which gives me enough temporary relief to hopefully fall asleep (the much-intended outcome for me personally).
I think 'physical arousal' mentioned in their definition is vague and may not necessarily interpret as 'having an erection' - Having the highly irritable sensation is enough to satisfy that definition.

Also, I'm not sure I agree with the statement, "feelings that orgasm is imminent" - It's not that I feel it is imminent, it's just the very irritable sensation of needing to climax constantly... (Obviously when you don't want to or are not thinking thoughts that should make you feel that sensation in the first place).

I'm looking for help wherever I can find it. It's getting to the point where I can only go to bed when I'm extremely tired. Even then I lie awake for 2 hours devoid of the sensation before the sensation starts to intensify. Nothing, nothing at all will relieve it. I will then have to deal with it for the next 2 hours+ before falling asleep finally around 6 or 7am. I sometimes give up and bring myself to ejaculate, which then provides that magic 30 minutes where, if I'm lucky, I can get to sleep. If not, it will intensify again and the only respite is round 2.

I've tried music, I've tried getting up in my dreary state and walking around the house, I've tried routines, I've tried no caffeine - You name it, I've tried it over the years.

Problem is - Our condition is so incredibly rare, I doubt anyone can help us.

Would love to chat in private my friend.I am also a male and i think we can help eachother.I sent you a private message