PGAD (persistant genital arrousal) Please help.

A new symptom appeared over the weekend, I am wanting to know if it's related to my lyme or if it's a different issue altogether.

Suddenly one night, I felt (I'm sorry if this is TMI, i'm very embarrassed by it) an intense tingling sensation in my groin and pelvic region / genitals. Almost as if I am about to orgasm. This feeling has persisted constantly for 3 days now. It is extremely intense and nothing seems to make it go away. I have missed multiple days of work because of it.

I am a male, but only found this issue affecting women when I looked online. My doctor had never even heard of it, I went to the ER and they found nothing wrong. There is very little information online other than this potentially could last forever, which I am not prepared to deal with.

Does anyone know if this has ever happened to someone with diagnosed lyme? It's terrible, I want it to stop so badly.

First of all, I'm so very sorry.

Considering Lyme and Bart both hit the nervous system pretty hard, I don't see why it couldn't be a reason for this. And there are documented cases: www.mentalhealthandillness.com/Articles/SexAndLymeDisease.htm

And just because it's mainly women being diagnosed with this, it only means that more men are likely embarrassed by admitting it, not that it's not happening to men. The other thing to consider is that in men, another term is being used : "others consider the syndrome of priapism in men to be the same disorder" /en.wikipedia.org/wiki/Persistent_genital_arousal_disorder

goo.gl/7V6OAU "Persistent Genital Arousal Disorder: Characterization, Etiology, and Management"

I have no idea if this is relevant but I experienced exactly what you've posted about - good description, a tingling, nerv-ish familiar "agitation" that would not go away. I am female and this was a couple of years before I knew I had lyme & co. I later was able to deduce that I was taking too much maca powder, which I was taking for its adrenal support and mineral and energy benefits. It is also prescribed for sexual health (so, now I know what will help me with my low labido!)

Not knowing what was causing it--and showing absolutely no interest in finding out (ugghhh...MDs...) one MD put me on an androgen reducer. Androgen is typically assumed to be a male hormone but of course, men and women share a lot of hormones. I was also experiencing hair loss and a little acne (the hair loss was actually from a hypothyroid condition, which wasn't addressed and the acne turned out to be a rash) so the MD decided it was too much male hormone. I took Aldactone (Spironolactone) for maybe 6 months.

I regret that entire situation and now worry that I screwed up my hormones. I started gaining a lot of weight after that.

Anyway, my suggestion is your sx might be due to the weird neuro issues w/ bart, perhaps. Or simply be a shift in hormones, very common w/ lyme & co treatment. Do you have an LLMD?

-p

Do you have an LLMD?

-p

I would try either a Papain or Bromelain type enzyme. I'd stop eating meat for a few days and evaluate dopamine and prolactin levels. I'm not sure how I'd do that, but I would sure try. Tyrosine or Tryptophan may either help or hurt your condition. I'd try one if it were me. From the little I've read, your condition troubles me.

Hi Storch, Im sorry to hear about your experience. I just want to chime in and say what you might be experiencing is some sort of high inflammation in the area from lyme or co's. Over the last couple months I have been experiencing something similar (although I am a female), I read it can happen to males as well. At one point I thought I had the persistant arousal syndrome also! Mine has let up some *thankfully* but I was very freaked out in the beginning of what the cause was as it was so uncomfortable and frustrating. I literally couldnt sleep for a couple days and laid in bed with an iceback down south to try and get some relief(although that didnt help much). All in all, it may be high inflammation from the infections being in either the bladder and causing bad irritation to surrounding area's/or nerves (possibly the pudendal nerve).


I can give you some remedies I have found to at least take the edge off if you think it may be related to that if you think that may be a possibility.

Please dont psyche yourself out too much thinking it is the persistant arousal syndrome as you dont know for sure and stress only heightens things and makes worse esp if you dont know for sure that it is even that ya know. Lyme & co's can cause some CRAZY things to go on with our bodies that is for sure :-/

Hope you find some relief soon

-Courtney

Hey Storch, personally I would try to think hard what changes I made to my routine leading up to this. Any new supplements or diet changes? If so, eliminate things one at a time and see if it helps. Something may have just been thrown out of balance.

If you didn't make any significant changes, I would take an approach similar to what Georgia Hunter outlined above.

You're not alone man, we are all here with you. Stay strong and have faith, you will beat this thing!

On a side note, many of our negative conditions are a direct result of methylation issues. As we age, either hypo or hypermethylation create imbalances in our biological pathways and correcting these imbalances can often lead to better health. Your condition may be a neural issue with hypermethylation involved.

Studies have shown that the epigallocatechins in green tea can decrease DNA methylation and it's cheap and easy to try.

Betaine has shown to decrease methylation (although it's a methyl donor). I can't wrap my head around that one.

Tryingtosurvive said...
St0rch, you have PGAD as do I for the past 6 years. I am just now finding out it's likely I'm Lyme positive. The relation between the two makes sense. Look for PGAD support group on Facebook. They are lifesavers!! It's going to be hell, I won't lie. I would start by being on no ssri's and getting a lumbar MRI checking for tarlov cysts. Also look up Dr. Goldstein in California. He's amazing. Hope this helps!

As you may have noticed, you are responding to a thread that's over two years old. The original poster (St0rch) was last seen on this forum in May 2017. Just FYI.

If you're interested, you could click on St0rch's name and find the user's e-mail address, if you want to contact them that way.

haha I did not notice the date either