PGAD - persistent genital arousal disorder

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
sg300
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Joined: Sun Feb 01, 2015 11:39 pm

Re: PGAD - persistent genital arousal disorder

Post by sg300 »

coz69x wrote:Hi, I posted a few weeks back & I wanted to leave some positivity.
I am no longer pregnant, unfortunately however I am now on 600mg pregabalin & 50mg amitriptyline.. I am wanting to wean off.. I have been in treatment with a professor who looked at my urine under a telescope & he said I had a embedded UTI.. & this was not IC - I am now on treatment for that & my pgad is seriously reduced.
I am almost myself again.
X
Hi coz69x,
Great that you are experiencing a reduction of symptoms. Can I ask what the treatment for the embedded UTI is? Is it a course of antibiotics?
Summer70
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Joined: Mon Jun 12, 2017 6:30 pm

Re: PGAD - persistent genital arousal disorder

Post by Summer70 »

Hi everyone!

It's mad how many people have this problem yet it's still barely recognised?!? I have had PGAD since the end of 2012 when I moved house (stresss!!) I have been on and off SSRI citalopram for years for anxiety but have been off it again for 5 months..
tried Oxybutin (spelling?!? :roll: ) gabapentin & amitriptaline with no luck.. although I thought it was bad until I recently have had a mega flare up and I cannot bare it at the moment Its the same Or if not, worse than when it first began..I just want to go to sleep for a few months! Lol. So interested to hear from those who have been "cured" as such. Also trying to make an appointment with Dr D Goldmeier in london again!
Xx
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Violet M
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Re: PGAD - persistent genital arousal disorder

Post by Violet M »

Hi Summer,

I love that name -- makes me fell happy inside. :)

You wanted to hear from someone who is cured. I am pretty much cured. Once in a blue moon I have twinges of that same old feeling but I hardly ever think about it anymore. I do remember wishing for sleep back when the PGAD was bad -- just to get away from it. Do you ever have any pain, or just PGAD?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Krl410
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Joined: Sun Nov 27, 2016 1:47 am

Re: PGAD - persistent genital arousal disorder

Post by Krl410 »

After a few years of feeling like crap with the PGAD(off and on), I have heard great things about Dr. Echenberg in PA. It took a few months, but my insurance agreed to cover visits to see him for the next few months.
I'm really hoping he can help me.
Laurina
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Joined: Tue Dec 13, 2011 12:24 am

PGAD

Post by Laurina »

I came across a blog article that was really well-written:

https://tonic.vice.com/en_us/article/d3 ... iving-hell
Summer70
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Joined: Mon Jun 12, 2017 6:30 pm

Re: PGAD - persistent genital arousal disorder

Post by Summer70 »

Violet M wrote:Hi Summer,

I love that name -- makes me fell happy inside. :)

You wanted to hear from someone who is cured. I am pretty much cured. Once in a blue moon I have twinges of that same old feeling but I hardly ever think about it anymore. I do remember wishing for sleep back when the PGAD was bad -- just to get away from it. Do you ever have any pain, or just PGAD?

Violet
Thank you!

Mainly PGAD. I've had a huge amount of stress in the last 6 weeks including being vitamin b12 deficient which causes
Nerve problems as well and it's flared up again so much I can't bear it... after years I had kinda got
"Used" to it and I feel like I'm at Day 1 again :( it's so tough. Also when it's bad it's almost on your
Mind 24/7 and that's worse because good way of dealing with it I being distracted but it's almost
Too bad to do anything to distract myself!!' Sad!:( x
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Violet M
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Re: PGAD - persistent genital arousal disorder

Post by Violet M »

Is there anything that helps dampen the symptoms, like ice or lidocaine? I know one woman who uses salon pas patches to dampen the symptoms.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Summer70
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Joined: Mon Jun 12, 2017 6:30 pm

Re: PGAD - persistent genital arousal disorder

Post by Summer70 »

Violet M wrote:Is there anything that helps dampen the symptoms, like ice or lidocaine? I know one woman who uses salon pas patches to dampen the symptoms.

Violet
Nothing seems to be working, it's almost like stomach tensions from stress is making it worse it's very much like it was or worse even than when I first got it. Definitely struggling a lot at the moment, I had to take diazepam last night just to get some sleep! What was it that helped to cure yours? :)
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Violet M
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Re: PGAD - persistent genital arousal disorder

Post by Violet M »

I had pudendal nerve release surgery but my problem was clearly ligamental with pelvic instability and misalignment. The pudendal nerve was irritated by a hardened, sclerosed ligament. It's really important to give the doctors an accurate history, to get excellent clinical exams, and to rule out all the different possibilities of what might be the cause for you.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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passenger
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Re: PGAD - persistent genital arousal disorder

Post by passenger »

I've been reading up at psas.nl lately, and there was one specific quote that jumped out at me about PGAD that really alarmed me.

According to the "What Doctors Should Know" portion on this site (found here: http://www.psas.nl/en/doktoren.asp), PGAD is "...in most cases and to some extent, progressive. In the beginning (approx. the first 6 months) symptom free periods, lasting from a few days to a few weeks, are reported. In the phase following, there generally are no symptom free periods any more. An exception on this so far is a group of women who had similar symptoms during pregnancy or during a brief period after delivery. After which the symptoms have completely disappeared, to reappear in a later period (often around menopause). Pain symptoms generally develop later. Not every woman develops pain. In most cases the clinical picture stabilizes within one year after onset."

How true is all of this? I'm assuming this site consistently updates their information, but it's not like there are new PGAD studies coming out all the time anyway. Not to mention the fact that the patients most likely to be studied long term are the ones with recurrent symptoms. Perhaps there are people that never report their PGAD-symptoms because they come and go away within a short time frame?

I had hope that my PGAD symptoms (clitoral arousal, overall burning that seems to come from deep within the pubic bone, feeling like I have to pee all the time when I don't actually need to go) might go away eventually (and permanently), because they went away for 5 days, after I had experienced symptoms in my initial onset stage for about 12 days or so.

But I guess that's not possible. Everyone around me keeps trying to reassure me that I will get better, but it kills me inside to know that they are probably wrong.

I've gathered that my symptoms were brought on by either Zoloft (I had been taking it for ~two weeks when the symptoms emerged), or by a UTI (I tested positive when I first got checked, a few days after the PGAD started). Millions of people take Zoloft, millions of people get UTIs. I guess I'm just ridiculously unlucky. With all that I've read, it seems delusional for me to believe that it will even get better. It seems like I've read nearly every PGAD / pudendal neuralgia related resource on the internet, and all the signs point to a debilitating illness that will rob me of a life that I never got to live. I suffered from relatively severe major depression for most of my teens, and all I wanted was to be able to have fun and enjoy my life. Now I don't even know if I'm going to attend college this fall. I mean I'm planning on it, but I know I'm just living a lie to get me through each day.
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