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Persistent genital arousal disorder (PGAD)

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Rbvdk
8 hours ago, Hopefull said:

Hi Rbvdk,

Sorry to hear that you are still struggling with the PGAD symptoms.

I think that spasms are part of PGAD.

I used to get it a lot at the beginning and I used to get it also when I would cut down on Mitrazapine.

It went away for a while,  until the beginning of November,  when I switched to Rameron SolTab, which is exactly the same thing, made by the same company,  only generic.

I am still experiencing it,  and frequent urination. 

I think my brain is adjusting to the tiny amount of Mitrazapine and the spasms are part of the WDS.

I know it will settle down eventually. 

Please don't feel disheartened,  the PGAD symptoms will eventually go away. 

It takes a while.  Even when you become symptom free,  occasionally you might experience very mild, arousal feeling,  until it eventually goes away. It is part of the healing process. 

You will also experience flare ups along the way,  and you have to be careful with the suppliments.

I avoided fish oil, magnesium and wearing jeans,  tight clothes,  because it would flare it up.

I found that burning feeling really uncomfortable and painful.

Do a sit bath in a cool water with a little bit of salt, it can help to ease the discomfort. 

It will go away,  so don't feel disheartened. 

Avoid triggers, and symptom free days is a sign that you are healing. 

Flare ups are part of the healing process and gradually it will become less and less. Hang in there and you will see that I am right. 

 

Take care,

Hopefull. :)

 

 

 

 

 

Hey thanks for replying:) Sorry you're still experiencing it, it sounds like the spasms you're getting is maybe the last of your PGAD flare up, like it's so minor/faded out that there isn't even arousal anymore which sounds like a good sign. :) I haven't been taken any supplements for a while but I'm not sure if I should now. My PGAD is confusing and worrying because it started off very tiny in August with literally just small 2 second waves literally maybe 3 times at most in the month, although one time when I was anxious I felt it for about an hour. Then it calmed down completely until October where I had strong and long flare ups but I'd have huge gaps inbetween either hours or days. Now this month I was hit with the worst PGAD feelings I've felt so far and I'm feeling it almost 24/7 which I've never experienced before. I'm worried about why I'm getting worse like It feels more like a gradual progression rather than a flare up. :( Sorry about sounding negative, I'm feeling so confused and scared right now but your reply really helped. :) Do you know what triggers it? I know my anxiety triggers it big time but most of the time I'll just wake up with it and it'll flare for a few hours and then calm but spike up throughout the day for seemingly no reason - although evenings are usually much better except for lately where I can't seem to even get an hour of being truly symptom-free anymore. :(

phew sorry this is long and negative, I'm so grateful for your replies I've been feeling pretty scared and alone in this and honestly talking to someone who's been through it and recovered almost completely is what I really needed.

Take care !:)

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ChessieCat

Thought it would be a good idea to copy this post by cathyfrench here:

 

11 hours ago, cathyfrench said:

Hi India,

 

Thank you for your kind message. I agree with you that psychiatry can be extremelly dangerous and SSRIs are strong medications that shouldn't be given  so easily. Unfortunatly I noticed that most doctors i saw in my PGAD and tinnitus Journey don't know the side effects and the withdrawal side effects of benzos and antidepressants so instead of helping you withdrawing they give people more and more psychotropic drugs making them worse instead of being better because they mistake withdrawal symptoms for psychiatric symptoms.

 

Istill have PGAD and tinnitus unfortunatly. it has been 20 months now that I coldturkeyed Xanax and was put on the antideprrssant SSRI Sertraline.  When I was on sertraline and 6 months after stopping it, I used to have an hyperactive bladder and a urologit told me that he has many patients with an hyperactive bladder that are on antidepressants. Thanks to pelvic physiotherapy, I don't have an overactive and painfull bladder anymore (alongside with a non acidic diet and I take aloe vera)but I still have PGAD.  My PGAD is really mild now and it is really not as bad as before (the first months after stopping sertraline were hell). I am at the end of my Xanax tapper (I was put back on Xanax after my sertraline,risperidone and Anafranil short experience) and I think Xanax was making my PGAD worse,now that I neraly stopped it,my PAGD flare are not as strong as before.  I am the patient of a very good pudnedal nerve specialist who has several patients with PGAD (but I am her first with a PGAD caused by an antidepressant). She gave me tens (ankle and auricular tens), physiotherapy. I go to acupuncturer and I did some auriculotherapy. For my specialist my PGAD is caused by an sympathetic nervous system to active (basically the autonomous nervous system is ill) and a parasympathic nervous system that is too quiet. I have belly breathing exercices and tens to try to stimulate the vagus nerve and in return it stimulates the parasympathetic nervous system and quiets down the parasympathetic nervous system. It helps. I also got ganglion impar nerve block to quiet down the genital nerves in nerve and it also helped. I also use ice to quiet down the flare and the overactive sympathetic nerve.

 

I read Mad in America and I found their articles really good.  The website Riysk has also run a series of articles on PGAD and there are some petitions organised at the moment to have sexual dysfunction and PGAD written as a side effects from SSRIs and SNRIS on these medication's safety notice in the US and in Europe. One petition was sent to the FDA and another one to the European Medication Agency. https://rxisk.org/wp-content/uploads/2018/06/JRS745-1.pdf.

 

Good articles onPGAD

https://rxisk.org/pgad-clitoridectomy-or-ect/

 

I hope yo will get better.

 

Take care

 

Cathy

 

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Hopefull
On 12/18/2018 at 6:31 PM, Rbvdk said:

Hey thanks for replying:) Sorry you're still experiencing it, it sounds like the spasms you're getting is maybe the last of your PGAD flare up, like it's so minor/faded out that there isn't even arousal anymore which sounds like a good sign. :) I haven't been taken any supplements for a while but I'm not sure if I should now. My PGAD is confusing and worrying because it started off very tiny in August with literally just small 2 second waves literally maybe 3 times at most in the month, although one time when I was anxious I felt it for about an hour. Then it calmed down completely until October where I had strong and long flare ups but I'd have huge gaps inbetween either hours or days. Now this month I was hit with the worst PGAD feelings I've felt so far and I'm feeling it almost 24/7 which I've never experienced before. I'm worried about why I'm getting worse like It feels more like a gradual progression rather than a flare up. :( Sorry about sounding negative, I'm feeling so confused and scared right now but your reply really helped. :) Do you know what triggers it? I know my anxiety triggers it big time but most of the time I'll just wake up with it and it'll flare for a few hours and then calm but spike up throughout the day for seemingly no reason - although evenings are usually much better except for lately where I can't seem to even get an hour of being truly symptom-free anymore. :(

phew sorry this is long and negative, I'm so grateful for your replies I've been feeling pretty scared and alone in this and honestly talking to someone who's been through it and recovered almost completely is what I really needed.

Take care !:)

Hi Rbvdk,

How are you?  Any better? 

I am still experiencing spasms,  but less frequently. 

You ask what triggers flare ups, for me it was supplements, even magnesium, anxiety, stress in general,  driving,  sitting,  walking, tight clothing,  scented bodywash.

You will heal but for some people it takes time.

 

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Rbvdk

Thank you both ❤️ Sorry for the late reply. I've been doing better since late December. I do a lot of things to try and keep the PGAD quiet/away and I had my first ovulation and period without any flare ups! My triggers are similar and I do my best to avoid them: stress, anxiety, sugar, car rides, sex (worst). But at a cost I'm house-bound. 

 

My doctor also said my problem was a hypersensitive nervous system. He believes me that it was caused by withdrawing and has been researching medication-induced PGAD. It totally makes sense to me because I have other problems that sound like a hypersensitive nervous system (I assume - I've never googled it so I'm not sure). Like tinitus, extreme emotions, hypersensitivy to certain foods (caffeine, sugar, onions), head zaps during periods and/or colds (still after 10 months since withdrawing!!), CONSTANT earworm, nightmares, problems regulating temperature, diarrraha, weird bladder and urethra sensations after peeing, possibly other things I've forgotten. I worry the most about the head zaps because it makes me feel like I'm still just at the beginning of the withdrawals, is that what it means or is it possible to have them 'till the end?

 

Hope this helps, and I hope you're both doing well. Thank you again. :) 

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Altostrata

Came across this paper today. Suggests PGAD might be caused by muscle tension, which is common in withdrawal, and a therapy to reduce the tension resolved PGAD. (In a pregant woman, however, hormonal changes and physiological changes might be involved.)

 

Link downloads pdf.

 

http://www.psas.nl/artikelen/2009PGADTali.pdf

 

Physical Therapy Treatment of Persistent Genital Arousal

Disorder During Pregnancy: A Case Report

Talli Yehuda Rosenbaum, BS, PT

Inner Stability, Ltd-Urogynecological Physiotherapy, Bet Shemesh, Israel

DOI: 10.1111/j.1743-6109.2009.01654.x

 

ABSTRACT

Introduction. Persistent genital arousal disorder (PGAD) is described as the spontaneous, intrusive, and unwanted

genital arousal in the absence of sexual interest and desire. Whether the etiology of this disorder is essentially central

or peripheral is unclear; however, a presenting symptom may be persistent engorgement of genital erectile and

vascular tissue.

 

Aim. To describe a case of a distressed 27 year old pregnant woman with symptoms consistent with PGAD, and the

intervention leading to the resolution of symptoms.

 

Methods. A patient with symptoms of PGAD was assessed. Information regarding this condition was offered. A

manual therapy treatment was provided to decrease muscle hypertonus near the pudendal nerve, and a home

intervention was suggested.

 

Results. Complete resolution of symptoms per patient’s report 1 week later.

 

Conclusion. Treatment with pelvic floor manual therapy directed at the pudendal nerve may provide safe and

significant relief from PGAD symptoms in a pregnant woman patient.

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Rbvdk
On 2/27/2019 at 3:38 AM, Altostrata said:

Came across this paper today. Suggests PGAD might be caused by muscle tension, which is common in withdrawal, and a therapy to reduce the tension resolved PGAD. (In a pregant woman, however, hormonal changes and physiological changes might be involved.)

 

Link downloads pdf.

 

http://www.psas.nl/artikelen/2009PGADTali.pdf

 

Physical Therapy Treatment of Persistent Genital Arousal

Disorder During Pregnancy: A Case Report

Talli Yehuda Rosenbaum, BS, PT

Inner Stability, Ltd-Urogynecological Physiotherapy, Bet Shemesh, Israel

DOI: 10.1111/j.1743-6109.2009.01654.x

 

ABSTRACT

Introduction. Persistent genital arousal disorder (PGAD) is described as the spontaneous, intrusive, and unwanted

genital arousal in the absence of sexual interest and desire. Whether the etiology of this disorder is essentially central

or peripheral is unclear; however, a presenting symptom may be persistent engorgement of genital erectile and

vascular tissue.

 

Aim. To describe a case of a distressed 27 year old pregnant woman with symptoms consistent with PGAD, and the

intervention leading to the resolution of symptoms.

 

Methods. A patient with symptoms of PGAD was assessed. Information regarding this condition was offered. A

manual therapy treatment was provided to decrease muscle hypertonus near the pudendal nerve, and a home

intervention was suggested.

 

Results. Complete resolution of symptoms per patient’s report 1 week later.

 

Conclusion. Treatment with pelvic floor manual therapy directed at the pudendal nerve may provide safe and

significant relief from PGAD symptoms in a pregnant woman patient.

 

That's so interesting, to be honest I would be so relieved if it was just muscle tension (there's so many theories of how meds give you PGAD but they're all so scary and complicated). I've been doing so badly this month I can't even walk or think anymore without it flaring, it happened so suddenly and I'm always aware of mental and physical triggers but this was for no reason. It reminds me of the head zaps and how they are triggered just by thoughts or movement. Maybe it's subconscious/withdrawal stress tensing my muscles badly again? 

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Rbvdk

Hi, I hope I'm ok to post this here but after reading what Cathy said again (she also said this in a PGAD group I'm in on Facebook) she said PGAD might be an autonomic neuropathy. Apparently it's progressive but you can have moments of it being quiet or gone but in general it gets worse. I'm worrying a lot now, since mine was so mild at first and then got worse, was a bit quiet for a couple of months and then worsened even more. I hope this doesn't scare anyone else but I really want to know everyone's thoughts on this. Could this be the same for other withdrawals too?

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BfromNJ

So I think the vaginal issues I have may be pgad.  I'm beside myself today.  It's a never ending loop of misery.   This came about just two days ago.  After a bout of some kind of restless leg issue.  That got better but this appeared.  I am meditating, deep breathing, trying to distract but it's too much to deal with.   Last med reduction was 6/5 gabapentin .  I'm beside myself.  Can anyone else tell me if they do actually relieve themselves?  Maybe tmi to ask but I just felt like I had to.  Do you do so or fight it?  I find orgasm too stimulating on my nervous system, but I didnt know what else to do.  And I cant stop going to the bathroom.  This has to be the worst symptom yet.  If this is all while still even on meds I hate to see after im off all of them.  

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johnson
On 7/13/2019 at 12:42 PM, BfromNJ said:

So I think the vaginal issues I have may be pgad.  I'm beside myself today.  It's a never ending loop of misery.   This came about just two days ago.  After a bout of some kind of restless leg issue.  That got better but this appeared.  I am meditating, deep breathing, trying to distract but it's too much to deal with.   Last med reduction was 6/5 gabapentin .  I'm beside myself.  Can anyone else tell me if they do actually relieve themselves?  Maybe tmi to ask but I just felt like I had to.  Do you do so or fight it?  I find orgasm too stimulating on my nervous system, but I didnt know what else to do.  And I cant stop going to the bathroom.  This has to be the worst symptom yet.  If this is all while still even on meds I hate to see after im off all of them.  

It will eventually calm down with time when you stop the pills. Same with the frequent urination symptoms as well. Both will calm down and go away eventually.

 

Relieving yourself only makes it worse. Try taking warm showers, go for a relaxing walk outside with nature. That stuff will help get your mind off of the pgad symptoms and give you a break from the torture.

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BfromNJ
15 minutes ago, johnson said:

It will eventually calm down with time when you stop the pills. Same with the frequent urination symptoms as well. Both will calm down and go away eventually.

 

Relieving yourself only makes it worse. Try taking warm showers, go for a relaxing walk outside with nature. That stuff will help get your mind off of the pgad symptoms and give you a break from the torture.

Thank you for the reply.  So difficult these things that come with these meds.  And I'm on three so I have a long way to go.  Not even sure which one is causing it or if it's withdraw.  

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BfromNJ

can someone tell me what doctor I should start with to see?  my gyno?  A neurologist?  Just rule out anything physical.  

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BfromNJ
3 hours ago, johnson said:

It will eventually calm down with time when you stop the pills. Same with the frequent urination symptoms as well. Both will calm down and go away eventually.

 

Relieving yourself only makes it worse. Try taking warm showers, go for a relaxing walk outside with nature. That stuff will help get your mind off of the pgad symptoms and give you a break from the torture.

I see though that it is both caused by the meds themselves and withdraw.  I started to have restless type leg issues first, very bad, coincidentally after a bike ride (something I rarely do, it had been years previously) . the restless leg issue came on the same day.  that abated and the next day I came up with this horrible thing.  I cant help but wonder if that bike ride aggravated some nerve. 

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johnson
6 hours ago, BfromNJ said:

I see though that it is both caused by the meds themselves and withdraw.  I started to have restless type leg issues first, very bad, coincidentally after a bike ride (something I rarely do, it had been years previously) . the restless leg issue came on the same day.  that abated and the next day I came up with this horrible thing.  I cant help but wonder if that bike ride aggravated some nerve. 

It's not caused by riding a bike. I remember the day before I got pgad I was running outside in the cold and then got pgad the next day. I actually thought that running out in the cold could have caused it. But that's nearly impossible. However when it happened my mind was all over the place and I had no idea what was going on with me. So I came up with all these crazy ideas as to what possibly could have caused it. If you feel that bike riding may aggravate it then maybe stop for a while. But it's definitely not the cause of it.

 

Just try and relax. The restless legs will eventually go away as well.

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BfromNJ
18 hours ago, johnson said:

It's not caused by riding a bike. I remember the day before I got pgad I was running outside in the cold and then got pgad the next day. I actually thought that running out in the cold could have caused it. But that's nearly impossible. However when it happened my mind was all over the place and I had no idea what was going on with me. So I came up with all these crazy ideas as to what possibly could have caused it. If you feel that bike riding may aggravate it then maybe stop for a while. But it's definitely not the cause of it.

 

Just try and relax. The restless legs will eventually go away as well.

the restless leg did pass.  and was replaced with the awful misery.  :(  cant even wear pants.  I am going on a cruise sunday and all I can think of is how am I going to deal with this?

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