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Persistent genital arousal disorder (PGAD)

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Broken   
Broken

Your 23, how exactly is it too late for you?

 

Make an appointment with a pelvic floor physio and find out if your're suffering with a similar problem, you'll never know until you make the enquiry.

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Broken   
Broken

I get that your tired really I do but isn't it worth looking into? I think it most certainly is.

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Ashbash30   
Ashbash30

Have any of the women on this forum tried taking birth control pills to help with PGAD symptoms? Thank you in advance.

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luv2knit   
luv2knit

Hi, Ashbash! Just my opinion, but I would think messing with the hormones artificially during withdrawal would be a very bad idea. I am (well) past menopause, but as it is, most seem to experience greatly increased symptoms at the time of their monthly cycle. Also, a great number of us are very sensitive to medications and supplements (and some even foods) during withdrawal. Like I said--just my opinion. Perhaps someone has a different viewpoint(?)

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Ashbash30   
Ashbash30

Hi everyone :) This is the third time I'm posting this, bc I kept putting it in the wrong section.. :/ But has any of the women on this forum taken birth control pills to help with PGAD symptoms? Thank you :)

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Ashbash30   
Ashbash30

Thanks luv2knit ! I reposted it in the Symptoms and Self Care section.. Take care :)

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Broken   
Broken

Yes I did find this helpful but had to stop on the account that I was starting to develop tiny man breasts.

 

It was a little alarming to say the least, however it was helpful when I found myself without milk for my tea.

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btdt   
btdt

Hi everyone :) This is the third time I'm posting this, bc I kept putting it in the wrong section.. :/ But has any of the women on this forum taken birth control pills to help with PGAD symptoms? Thank you :)

 

No I did not take birth control pills to try and fix it. I was really sick off and starting about 2 years before I seen a neurologist with the head drops and foot dragging I kept getting sick with increasing frequency.  By the time I got to the foot dragging head drops stage I had been making the rounds to different clinics and hosp some of the best in my province so I am told.

 During these trips I had my hormones checked 6 times in 6 months all but 2 of those hormone tests came back with a different meaning... stage .. one I was pre menopausal one I was per pubescent one I was post menopausal one I was pregnant two of the others were repeats of one of the above I just don't recall what ones were repeated.

 

There was certainly something going on with my hormones and we see different things reported by other many on effexor for instance have very early menopause for some reason, that one stick in my memory. 

I was taken off effexor by the neurologist cymbalta was tried I couldn't take it mirapex was tried I could not take it lyrica was tried I could not take it.. about all drugs from then on were a problem for me I tried to go back on effexor and it came right back up my body simply rejected it. 

I had extreme periods on effexor to the point I had an ovary with cysts removed... (listed side effect of Effexor btw) after the surgery no change... my gyno then added a hemophiliac drug along with iron to keep me going.  I was not a fan of the new drug and took it very rarely. The ovary was removed in 2004 I stopped Effexor in 2007... so for years before and after the surgery I had extreme periods.  My last period was a month long in Aug 2007 I quit effexor Nov 2007.  I could not take any hormone replacement then or ever because of a drug reaction to birth control when I was 18 that caused a stroke. A small one called a TIA I heard since that term is used where there are no effects after but I had effects that lasted a couple of years. 

 

How effexor affects hormones I can't say but it does something. 

 

One more thing along these lines when I was on paxil a short time my doc tried to talk me into taking progesterone I may even have tried it... cause something was off in my blood work .. as I recall a short try of progesterone did not work whatever she was trying to fix my body was having no part of it .. I think may estrogen went up.. what we did not want given my history. 

 

Sorry broken for adding woman things to you thread but it may be important to some other woman out there. 

peace all

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westcoast   
westcoast

I found two case studies of unexpected relief from pgad, though both employed risky, even objectionable treatments. One case is a woman who apparently had PGAD all her life, unrelated to psych drugs. While on Chantix her PGAD went away until 2 weeks after she DC'd. A second time on Chantix gave the same result. Here's full text:

http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2008.01210.x/full

 

ABSTRACT

 

Introduction.  Persistent genital arousal disorder (PGAD) in women is associated with feelings of persistent, spontaneous, intrusive, unrelenting, and unwanted physical arousal in the absence of conscious thoughts of sexual desire or sexual interest.

 

Aim.   To report the case of a 49-year-old woman with lifelong PGAD who was recently prescribed varenicline for smoking cessation and who subsequently experienced amelioration of PGAD symptoms.

 

Methods.  Patient self-report and literature review. Written consent was obtained from the patient.

 

Results.   Abatement of lifelong PGAD symptoms occurred within approximately two weeks each time varenicline treatment was initiated. PGAD symptoms returned in approximately 2 weeks each time treatment was suspended.

 

Conclusions.   Varenicline is a partial agonist of the α2β4 subtype of nicotinic cholinergic receptor. Its unique pharmacological action stimulates a small amount of brain dopamine release while antagonizing the ability of nicotine to stimulate much larger dopamine release. Genital sexual arousal is controlled in part by the action of hypothalamic and limbic dopamine systems. Based on the mechanism of action of varenicline and the observation of its effectiveness in this case, we hypothesize that: (i) central hyperactive dopamine release is an important component in the pathophysiology of PGAD in this patient; and (ii) use of varenicline resulted in lowering of this hyperstimulated central dopamine release. Objective testing of varenicline's safety and efficacy in the treatment of other women with PGAD is suggested. Korda JB, Pfaus JG, and Goldstein I. Persistent Genital Arousal Disorder (PGAD): A case report in a woman with lifelong PGAD where serendipitous administration of varenicline tartrate resulted in symptomatic improvement. J Sex Med 2009;6:1479–1486.

 

 

In this case the PGAD was a withdrawal effect and ECT got rid of it, but not forever. (abstract only; contains Dr. Korda's email addy.
http://onlinelibrary.wiley.com/enhanced/doi/10.1111/j.1743-6109.2009.01421.x/
 

 

oanna Beate Korda, MD, Department of Men's Health and Clinic of Urology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany. Tel: 001-40-428 03 5056; Fax: 001-40-42803 4734; E-mail: korda@gmx.net

ABSTRACT

Introduction.  This is the second case report of a woman with bipolar disorder type I who noted the onset of persistent genital arousal disorder (PGAD) symptoms after abrupt cessation of paroxetine. With the worsening of PGAD symptoms, she developed severe depression and suicidal thoughts, resulting in her undergoing electroconvulsive therapy (ECT) as management.

Aim.  To describe a case of PGAD and develop hypotheses to explain the beneficial actions of ECT on PGAD based on 4 years of ECT administration.

Methods.  Patient self-report after obtaining consent, as well as literature review.

Results.  After the fourth ECT, the patient's PGAD symptoms abated serendipitously. She was placed on ECT on demand for the treatment of her PGAD. With each ECT treatment, PGAD symptoms immediately disappeared, relapsing slowly over time until the next ECT was administered. The patient has, thus far, received a total of 30 treatments of ECT. Side effects continue to be minimal and include brief short-term memory loss, headache, and muscle aches.

Conclusion.  ECT is known to induce cerebral excitatory and inhibitory neurotransmitter changes after acute and chronic administration. Sexual arousal is stimulated by the action of hypothalamic and limbic dopamine, noradrenaline, melanocortin, and oxytocin, and inhibited by serotonin, cerebral opioids, and endocannabinoids. Based on the patient's bipolar disorder, the mechanism of action of ECT and the observation of ECT effectiveness on her PGAD, we hypothesize the following: (i) bipolar disorder led to central hyperactive dopamine release, an important component in the pathophysiology of her PGAD; (ii) central serotonin deficiency after selective serotonin-reuptake inhibitor (SSRI) withdrawal resulted in a lack of inhibition of sexual excitement; (iii) ECT resulted in lowering of the hyperstimulated central dopamine release; and (iv) ECT led to an increase in sexual inhibition by stimulating serotonin activity. Further research in the central control of sexual arousal is needed. Korda JB, Pfaus JG, Kellner CH, and Goldstein I. Persistent Genital Arousal Disorder (PGAD): Case report of long-term symptomatic management with electroconvulsive therapy. J Sex Med 2009;6:2901–2909.

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brassmonkey   
brassmonkey

These, however, are one off cases that are self reported, so I would not give them much credence.  Also considering that Chantix comes with a lot of baggage of its own, including side effects and WD to rival anything we are already trying to get off of I don't think it is a good idea to recommend either of these procedures.

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JackieYoung   
JackieYoung

I feel a glimpse of what you're going through. I went cold turkey about a month ago and have noticed that I've been "excited" more than usual.  I get that intense build up and just need to attend to it.  It feels like a blessing to me but I can imagine how distracting it would be.  I know you posted this a couple years ago but I just wanted to respond and I'm hoping your body has adjusted and that you're ok now. 

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Petunia   
Petunia

JY, It sounds like what you are experiencing is a return of your libido after stopping your medication, rather than PGAD. There is nothing good about a constant unpleasant, unwanted, overwhelming sensation which can't be relieved.

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Broken   
Broken

Update! Kegel exercises, including reverse kegels are not appropriate for the treatment of PGAD and hypertonic pelvic pain. You need to find a good physiotherapist with a sound understanding of the condition and knows how to treat it appropriately.

 

If you're unfortunate enough to experience PGAD or chronic pelvic floor pain chances are this is a result of a hypertonic pelvic floor wether triggered by an antidepressant or not. I'll post a link below to a clinic in the states who helped me find an experienced physiotherapist in my area.

 

http://www.pelvicpainrehab.com

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Broken   
Broken

These, however, are one off cases that are self reported, so I would not give them much credence. Also considering that Chantix comes with a lot of baggage of its own, including side effects and WD to rival anything we are already trying to get off of I don't think it is a good idea to recommend either of these procedures.

I would echo this.

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LoveandLight   
LoveandLight

Broken, I don't have this condition so I'm not sure what I'm doing over here but all the info is great and your generosity in sharing I'm sure will help someone!

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Broken   
Broken

I hope it won't be required but if it is I hope it will L&L.

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Broken   
Broken

I have since had physio from an amazing pelvic floor physiotherapist. All the work is carried out internally, no kegel excercises! I have had significant relief after 6 sessions, his prognosis is that it will most likely be 6 to 8 months of treatment before I'm symptom free.

 

I took Nortriptyline briefly which only served to complicate matters, symptoms have returned. I'm also tapering off valium which I would imagine will be problematic.

 

It's a little convoluted and disheartening that after making some real progress I've regressed somewhat thanks to another antidepressant.

 

You think I'd learn my lesson but alas I continue to repeat the same mistakes time and time again.

 

Learn from mine please!

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reachingforthestars   
reachingforthestars

I think i have this now... It started yesterday. Have anyone here have had this and got rid of those symptoms later? 

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Celeste   
Celeste

Hi Reaching. I had this in earlier WD and it went away with time.

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SelmaLady   
SelmaLady

I think i have this now... It started yesterday. Have anyone here have had this and got rid of those symptoms later? 

Yes.  I had this for a few months and it went away. 

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Futurerecovery   
Futurerecovery

I have sent Prof. Melcangi a few questions. He told me that "they are not presently working on this matter". He says that the questionnaire was probably translated by a patient (he only made the Italian questionnaire). He also says: "Thus, only to explain you that this is a general questionnaire only to have (in case we may work on it) already some information."

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Hopefull   
Hopefull

Anyone that has been affected by SSRI induced PGAD and I have counted at least 20 people on this forum , just know that you are not alone.

This symptom is not "rare"! 20 people experiencing this symptom from an SSRI's is alarming. When a doctor tells you it is "rare", what a load of BS.

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Pearlsky   
Pearlsky

I've been off SSRIs for five months now and am still struggling with PGAD which I never dealt with anything like before. My experience with the sensations and arousal are very similar to everyone's. This started two months into withdrawal - February - and was at its worse the third month - March. I, too, considered suicide over it, but I knew I really didn't want that. (At that time, I was going through a horrible depression which thank goodness hasn't gotten that bad again.) Improvement has been very gradual and sometimes seems at a halt. I recently stopped satisfying it the main way I was because it added undue stress and frustration. I am currently working on stopping other ways of satisfying the desires. It's not easy, and if I'm not careful, they come right back. It takes a conscious effort to focus on other things.

 

As I'm still struggling with control over my thoughts, it's almost impossible not to think of myself as a horrible, sick person when symptoms arise. It is not like me to go into deep sexual fantasies, and when I don't bother managing the triggers(because I don't always think about it), this can easily go on the entire day. My main triggers are inadequate sleep, lack of exercise, and going to the bathroom. I feel sick for saying all this, but this was never me and since my mind is usually in a blank state, I blame myself and can't figure a way to think differently.

 

About the sensations, I have the full bladder feeling a lot. When my bladder gets too full, I experience sharp pains that last for days and never go away completely. It's terrible. Not to mention my pelvic floor is weakened and is an extreme discomfort. I fear that I have damaged myself somehow by holding my pee and masturbating too much. I deal with much frustration as nothing will ease the desires and I feel like I have lost my purpose in life. This is disgusting and I would rather be doing anything other than this.

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passenger   
passenger
On 3/7/2017 at 5:31 AM, Hopefull said:

Anyone that has been affected by SSRI induced PGAD and I have counted at least 20 people on this forum , just know that you are not alone.

This symptom is not "rare"! 20 people experiencing this symptom from an SSRI's is alarming. When a doctor tells you it is "rare", what a load of BS.

 

Hi, Hopefull. I have been suffering from arousal symptoms / feeling the need to pee all the time / burning symptoms for over a month now.  I suspect my condition may have been triggered by Zoloft, as my symptoms cropped up about two weeks after being on the med (50 mg for one week, 100 mg for one week). I also had a UTI at the time, though I'm not sure if the UTI was actually causing the symptoms in the first place, or if the symptoms lead my doctor to suspect a UTI, which then prompted further testing and the discovery that I indeed had a (mild) UTI. My symptoms didn't seem UTI-esque to me at the time, so I was surprised when it turned out I had one. Perhaps I had had detectable bacteria concentrations for awhile at that point, but not to the level of an actual infection? I read that many people can discover that they have "secret UTIs" through advance testing, when in reality it's just normal concentrations of bacteria that can be construed as a UTI if need be, through confirmation bias.

 

Anyway, I quoted your post because I'd like to know how the 20 people on this site are doing, and what helped them with their SSRI-induced PGAD. I have been very hopeless lately, and I'm tired of going to bed each night feeling uncomfortable and miserable, even if I accomplished a lot during the day. My experience with PGAD is wore than any depression I've ever experienced in my life. 

 

My hope is that this will eventually go away. I want to trust and believe in my body, but right now that's pretty hard to do. It would be nice to know what specifically helped you, and other people who's PGAD was caused by an SSRI, rather than an injury or local nerve damage. Additionally, I want to know whether most people with SSRI-induced PGAD go into symptom remission eventually. I know that you did, from reading your posts. Has that been the case with anyone else that you know?

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Hopefull   
Hopefull

Hi Passanger,

I am really sorry to hear that you are going through this. 

It really is disheartening and I completely understand. 

Prior to taking Zoloft,  have you taken SSRI'S in the past? 

The reason I am asking is because I had a bad reaction to Zoloft and I have never taken an SSRI. 

There have been cases on this forum where people developed PGAD symptoms from SSRI'S as they were coming off it. One lady was on Citolapram and developed PGAD symptoms as she was tappering.  As soon as she reinstated the symptoms went away. 

For me it happened after taking 3 Zoloft tablets. 

We are all different,  and it happened to you 2 weeks after. 

This is an indication that you are sensitive to Zoloft as it is causing a chemical imbalance in the brain. 

How long have you had PGAD symptoms? 

I understand how depressing and devastating this can be.

I never felt so helpless and hopeless as I did then. 

But please remember that the brain does repair it self , it took a while for me. 

I don't have the symptoms any more,  but I did have a variation of it as I was coming off Mirtazapine.  A lot of spasms and twitching.  I think that Mitrazapine was probably masking it too. My doctor put me on Mitrazapine after Zoloft reaction,  but I was having issues on higher doses and infact suppliments and other things would bring up the symptoms. 

My advice to you is to try and avoid taking any supplements.  Keep things simple.  To realive burning pain, do a cool sit bath and add a bit of salt.

Try to avoid wearing tight clothing,  until things calm down. 

Don't loose hope!  I know how hard that is. I went through it snd so can you. 

I am not better than you. We all have it within our selves to get through hardship. My unty get UTI's and she took D-Mannose suppliment. It helped her and she has taken antibiotics in the past. You can get it from the Health Food shop and it is a simple sugar.  Google it.

It comes in a poweder form.

You could possibly add it to the sit bath.

Obviously speak with your GP and a Naturalpath.

You will heal and recover too.  Just take one day as it comes.  That is whatI had to do.  I am not sure how the others are doing.  Search PGAD and it should come up with PGAD symptoms and self care.

Like you I had a need to constantly pee.

I had a test done and I had no bacteria. 

It happened after taking Zoloft.  I had a really bad burning sensation for a long time.  Are you able to sleep? 

 The one thing that I found helpful was accupuncture.  It received the symptoms a bit. I did not have the treatment all the time. 

Take care and feel free to message me anytime.  You will get through this. 

Hopefull.  

 

 

 

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cathyfrench   
cathyfrench

Dear Sipdey,

 

I am suffering from PGAD since coming off Sertraline in May this year. I was only 3 weeks on the drug and it was my first antidepressant ever. You can see my story in the introduction forum. I suffer from constant arousal, over active bladder, heavy pain in my lower belly and parts, constant lubrification and swelling in the private parts. It sounds like what you had. I am looking for reassurance that things will improve and I see that you suffered from this disorder in 2013. I hope you don't mind me asking about how you are doing. Did the PGAD went away eventually ? I am not taking any anti depressant at the moment but i am on Xanax. I hope you don't mind that I sent you this message and I hope you can reassure me.

 

Thanks a lot for your help

 

Cathyfrench

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