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Persistent genital arousal disorder (PGAD)

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spidey   
spidey

ADMIN NOTE An international list of doctors who address Persistant Genital Arousal Disorder (PGAD) http://www.psas.nl/en/lijst.asp

 

Tips and tricks for self-care http://www.psas.nl/en/tips.asp

 


 

I've been reluctant to talk about this subject because it makes me feel dirty and disgusting.......

 

Many people report sexual side effects while on antidepressants or after discontinuation. The most common complaint is lack of libido. Not so common is what I am currently experiencing which is known as "Persistent Genital Arousal Disorder." It has been linked to Restless Leg Syndrome. I had this whenever I would miss a dose of Effexor. My genital area would begin throbbing and pulsating and the only relief was round the clock stimulation. I would get maybe 30 minutes of relief followed by more "demands" for release. Now coming off of Cymbalta I feel this again. There is no known cure that I am aware of. I can't imagine living out the rest of my life in this state. Everyone that wishes their libido would return: be grateful it has decided to take that route as opposed to this one. This can be best described as Chinese water torture. Many people have killed themselves over it. If it doesn't go away or at least improve (and if I can never again take any med to silence it) I'm afraid I might be tempted myself. I think I'd prefer being paralyzed from the waist down.

 

Here is an article explaining:

 

 

http://www.ncbi.nlm.nih.gov/pubmed/18224549

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alexjuice   
alexjuice

I can understand your hesitance to discuss this but I think you made the right decision to talk about it. I am very sorry to hear about this problem. It sounds like a very terrifying and psychologically torturous thing to experience...

 

If I were you I'd try to take things one step at a time. There is no sake in making plans for what you will do after everyrhing has failed because everything hasn't failed yet.

 

I know of many things which 'have no cure' that have been cured and I don't find these cures miraculous. In my experience I'veI found that when a medical authority says there is no cure she usually means 'the cure is very difficult for me to learn and not that profitable either' .... Of course I don't intend to imply the problem is easily solvable but I think it's important to conserve hope and reserve judgment as we as people are often surprised.

 

HUGS to you.

 

good luck,

Alex

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alex   
alex

Spidey, you are a very young person, that is good on one hand, because you WILL heal from all this torture, and leave it all behind.

On the other hand, because you are so young maybe you don't have enough experience or the "tools" to deal with the terrible ordeals that life brings to us sometimes.

English is not my native language, so forgive me if I don't express myself in the right way.

What I am trying to say is that there is no limit to our endurance potential;we don't know how strong we are until something like this terrible process (W/D) appears in our lives.

I am a 60yrs old man, who started dealing with psychiatric issues at the age of 15, 45 years ago!!And I have been through a lot!! believe me.

5 years ago I was thrown into the dephts of the most horrific major-anxious deppresion, and I endured this terrifying condition for 9 months without medication!!

At the end I gave up and started 150mgs Effexor.Now, I am living the hellish consecuences of all this process.

There is no doubt, that all my suffering, including those 9 months of agony and my long story of suffering had giving me the tools to cope with this ordeal in maybe a better way.

I really didn't know how strong I am.

I know is not easy, it is very painful; I'm dealing myself with a sexual disorder due to the exposure to this poisons: premature eyaculation.

Very frustrating..never have before.But I am dealing with it; some days better, some days worse.

I really believe in the power of the spirit, hang in there.

Maybe a mild natural sedative like Valerian root could help...??

 

My spirit is with you.

 

Alex is right, Drs.cannot say the last word for anything.

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annelle   
annelle

Hello Spidey,

 

I think it is very brave of you to post about this disorder. I have been searching for this on this site and on Google, and although I am very sorry that you are going through this horrible experience, I could not help feeling a little happy to hear from someone else who knows about this condition first hand.

 

I think I have this problem to some degree, from what I can tell not as bad as you are describing, but enough to make me feel close to suicidal from time to time when it is at its worst.

 

My problem is maybe a little different, because I get the worst feelings in my breasts, especially around the nipples. I must confess I am not 100% certain that it is in fact PSAD that I am experiencing - for a long while I thought it was dysesthesia or parasthesia, and maybe it is.

 

But since it feels like my nipples are being constantly stimulated, I have been wondering if it was PSAD. I do have some tingling in my genital area as well, but that is easier to cope with for me. Maybe age has something to do with that - I am 60.

 

I know if you are female, as I am, but if you are, I think you will understand that the feeling of constant, ongoing nipple stimulation is very very unpleasant.

 

I can imagine that you must be feeling very bad and desperate at times, but hold on - as Alexejice said - you never know the future and when things may improve. 

 

So try to hang in there!

 

I wish you all the best!

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annelle   
annelle

Hello again,

 

I forgot to mention that this problem first started about 3 months after I stopped taking AD (escitalopram) after a much too quick taper, which it why I am positive that it is part of the withdrawal syndrome I have been experiencing for about 8 months now. I have never felt anything remotely similar to this.

 

But we have to believe that it will all get better, and I truly believe that.

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Rhiannon   
Rhiannon

Spidey, I don't have this problem, but a number of people on this forum have reported various kinds of sexual dysfunction associated with SSRI use and withdrawal, and sooner or later (usually later, unfortunately) it gets better. I hope the same will be true for you. I'm so sorry for your suffering.

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cassidysmile   
cassidysmile

HI Spidey, 

I also have this condition and have had it for 7 years after going off of lexapro. I'm a 36 year old, otherwise healthy female, happily married with 2 young children. This condition came on suddenly and for several weeks I would try to "relieve" the feelings but it would come back with a vengeance and was unrelenting.  Eventually, I stopped giving into the torment of the constant arousal/pressure/pain and ignored it. Easier said than done but eventually it became more tame. I work full time as a nurse so my job helps to distract myself and focus on helping others.  I have been able to live somewhat of a normal life with flareups every several months which usually can last for days to weeks but then subside. .Please don't give up hope because the one sure thing about this condition is that is different for everyone. In the last 7 years, I have seen more and more women/men reporting this condition, more articles written and several doctors trying to find a cure. There is a support site that is helpful as well where you can see what others have tried that helps them. The hardest thing to deal with condition is the fact that most people have never heard of this and when the media focuses on "persistent orgasms" , they immediately think this is not a problem. What they don't realize is that many women, including myself, don't have orgasms all day. It's more like having a full bladder or impending orgasm that never happens( ALL day and All night) If they really took two seconds to really think how that would feel, then this condition would be taken more seriously. 

 

Keep positive, try to deal with this day by day and know there are others who are here to support you.

 

Best,

Cassidysmile

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spidey   
spidey

Thank you Cassidysmile :)

The way that you describe it is exactly how I feel. Whenever I have to go to the bathroom, lay or sit down, exercise too aggressively, and am stressed it intensifies. It does feel more like pressure and extreme sensitivity than anything else. "Doing something" about it just makes it worse because I am agitating the area further. I seriously hope that in my lifetime they find a way a way to cure nerve damage, not just subtly "treat" it with more drugs.

 

I also have a constant buzzing in my legs and twitching since being overdosed on Cymbalta. Do you experience an issue with restless legs yourself?

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cassidysmile   
cassidysmile

I too hope they find a cure and I'm also not willing to take more medications (except for klonipin which helps to lessen the symptoms) for fear of making it worse. .Im working with a doctor in the states that is hopefully going to get a research grant to help find a cure . To answer your question regarding restless leg...no, I don't experience that but many women on the support site complain about it.

The three main sources of relief for me at least are abstinence  (until the symptoms subside), distraction and meditation (to help focus my energy elsewhere and not on the symptoms). I have accepted that this is my life right now but I won't let this condition define me. I am strong and young and have viewed this problem as another roadblock that I must overcome and how i cope with it will define me...I have no other choice but to live strong for my family and myself.

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MaryKA   
MaryKA

Spidey (thank you for bringing this topic to the forum) and Annelle and Cassidismile, I had PGA definitely as part of my sudden w/d from SSRI citalopram. It started about 3 weeks after going to zero with my wanting to put my hands between my legs. Then the disbelief that orgasm did not 'work'.

 

So I got back onto the Cit as quickly as I could.

 

Then there was another week or so of needing to go to the loo twice as much as usual -- I didn't want to have too much stimulation so I wee'd whenever I felt I had to to remove the pressure on whatever nerve it was being stimulated.

 

I carried on like this, frequent urination and also an ache in my womb, like 'dull' period pain. It stopped with my period. I've been so much calmer since then. But I'm heading up to my second period during w/d ... :unsure:

 

PGA is terrible, the archetypal stuff for a 'comedy sketch' but really really not funny at all. I don't know what to say... I'm so sad for anyone having this. How can this sort of thing happen with coming off a AD (SSRI in my case), so that we are put in this situation that comes up so frequently here but yet it is not on the 'drug notes'?

 

You know, we should try not to feel dirty. It could be more a sign-of-the-times thing than us being ourselves: I in my brief time of desperate need used a fantasy or two, a bit more extreme than my normal, but nowadays there are so many images and portrayals of behaviour, etc. that it's difficult to dissect one's own feelings from outside influences (and I'm in my forties...., what about our kids??).

 

All to say, I found PGA really difficult to live with and to learn to live with. Ha! I had it for only 10 days....

 

Wishing all who have or have had this a very deep calm and relaxation and peace.

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Rhiannon   
Rhiannon

Thank you all so much for courageously bringing this topic up and sharing about it.  This is something nobody should have to be dealing with and feeling alone with it.

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mammaP   
mammaP

I couldn't believe what I was reading on this topic. This is something I've experienced too and had no idea it was a condition

or that it was related to drugs or withdrawal. I felt disgusting. You live and learn! Pharma has a lot to answer for  :angry:

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Iggy131313   
Iggy131313

Just to say that I was reading through a timeline of someone who had recovered fully and she said this

 

''I was more sexual on paxil, but when I came off all hell broke loose, even walking could set me off, my body was craving dopamine''

 

so it sounds like she had a version of this also but is fully recovered...it could well be that this is a symptom, like pssd that can resolve over time, but its not something that people talk about very much

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johnson   
johnson

Hi Spidey,

 

I too had this problem 3 months after I stopped taking 5htp. It was very very uncomfortable and very excruitiating every single day and every single minute. It's been almost 4 months since and I can tell you it has improved along with my other fuctions. I also have problems with feelings of frequent urination all the time and that has improved as well. I too had restless legs and a whole wack of other issues. Please see these links below.

It has further information on what you are possibly going through. It seems to affect both males and females. I'm a male in my thirties.

 

http://www.psas.nl/en/doktoren.asp

http://www.ic-network.com/forum/showthread.php?60023-Uncomfortable-Arousal-Urination-Sensation-in-Urethra

 

Good luck.

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Iggy131313   
Iggy131313

I feel I have this also, my akathisia feelings have gone and been replaced by this, Im very very scared of it, thanks jonson for saying you have had some remission from symptoms, are you male or female?

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cassidysmile   
cassidysmile

PGAD is not a sexual arousal disorder. Its unwanted, unrelenting, genital/pelvic pressure/pain/ arousal unrelated to any sexual desire for sex.. The best way I can describe it is having a full bladder and can't pee.  that constant pressure which can cause arousal that is persistant even during sleep...

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MaryKA   
MaryKA

Thank you, Johnson. The first link certainly struck a chord with me. (The second was probably talking a different language about the same thing.)

 

Which has spurred me into not delaying any longer my digging out this link from an email to me by Audrey Bahrick who I contacted when I was in distress a month ago:

 

'persistent genital arousal has sometimes been reported as associated with SSRI withdrawal. Not much is known about it. Sandra Leiblum is the leading researcher and scholar on the condition (I do not know her). Here is a link to an article about the condition: http://www.bashh.org/documents/2428.pdf'

 

what a b*****r these drugs are....

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Iggy131313   
Iggy131313

this is the exact quite from the person who has fully recoveed from a severe withdrawal syndrome
 
I was one of those who became more sexual, while ON Paxil. When I withdrew, all hell broke lose. I won't get into the specifics, but walking could set me off. If didn't take much at all. I think my body was desperate for dopamine. Hell, I had movement disorders, so I know dopamine was badly depleted.
 
It sounds to me like a variation of pgad dont you think? It really could be more common than we think.
 
Jonson, sorry, I see you said you were a male, can I ask if your pgad was a feeling of irritation or if you experienced constant errection? 

Edited by Petu
fixed text

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johnson   
johnson

this is the exact quite from the person who has fully recoveed from a severe withdrawal syndrome

 

I was one of those who became more sexual, while ON Paxil. When I withdrew, all hell broke lose. I won't get into the specifics, but walking could set me off. If didn't take much at all. I think my body was desperate for dopamine. Hell, I had movement disorders, so I know dopamine was badly depleted.

 

It sounds to me like a variation of pgad dont you think? It really could be more common than we think.

 

Jonson, sorry, I see you said you were a male, can I ask if your pgad was a feeling of irritation or if you experienced constant errection? 

 

 

Hi Iggy,

 

Mine was more that I felt as if I was always close to ejaculating or orgasm. My penis/genitals were always constantly tingling and throbbing. I had problems getting an erection, feelings frequent urination and just felt extreme anxiety in my lower extremeties and felt extremely sensitive. I also had restless legs. Sitting down definately made things worse.

I mean I guess what I was experiecning and still am to a certain extent is probably not actually PGAD but I had some of the symptoms of PGAD for sure. For me this was ongoing on a daily basis non stop. I felt the need to masterbate to get relief but in most cases relief was very temporary as in 20-30 minutes then the symptoms would actually get worse.

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Iggy131313   
Iggy131313

Jonson, so this had imrpved for you? is it much much better?

 

was it gradual? and what do you have now with this symptom?

 

I definitly have this and its scaring me

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Iggy131313   
Iggy131313

quote from a Doctor in London, I have also emailed him...but this is a quote from an internet article

 

'I see around 20 women a year with this condition, it may be as common as one in 100 we just don't know.

'Sometimes it may resolve on its own, there is no cure but there are a number of ways to manage the symptoms such as meditation and pelvic floor exercises along with pain medication for the patient.'

 

Im hanging onto the ''sometimes it may resolve on its own'' so there is a chance

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MaryKA   
MaryKA

Johnson. Iggy, how long did these feelings last? Months? Weeks? Days? What stopped them?

 

For my answer to my own Q, I had a couple of days in the first couple of weeks after going too quick to zero (see history) -- which of course I wasn't worried about -- and then the third week after zero was increasingly so, accompanied with a realisation that not all was right. And what stopped them was reinstating 1/4 dose (for the extreme arousal) and 1/2 dose (for the urge to urinate).

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Iggy131313   
Iggy131313

mine have recently started 17 months after a CT and 12 months after an adverse reaction, I am on 0.48 citalopram and my symptoms of pgad are getting stronger every day

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johnson   
johnson

Johnson. Iggy, how long did these feelings last? Months? Weeks? Days? What stopped them?

 

For my answer to my own Q, I had a couple of days in the first couple of weeks after going too quick to zero (see history) -- which of course I wasn't worried about -- and then the third week after zero was increasingly so, accompanied with a realisation that not all was right. And what stopped them was reinstating 1/4 dose (for the extreme arousal) and 1/2 dose (for the urge to urinate).

This started 3 months after I stopped taking 5htp. It has been going on for the last 4 months. Only very recently in the last 3 weeks or so has it finally

started to let up a bit. I am finally getting a bit of relief down there, the urge to urinate all the time has gone down a bit and I feel a bit more relaxed down there as well.

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alexjuice   
alexjuice

It's amazing so many people have experienced this type of syndrome after stopping medication.

 

This is such a personal and sensitive topic I can understand how it doesn't get spoken of openly very often. Has anyone spoke to a doctor or alternative practitioner like an acupuncturist, chiropractor, nutritionist and so on and so forth? Has anyone learned of any interventions to alleviate some of the suffering?

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Iggy131313   
Iggy131313

does everyone else here have the feeling of needing to urinate? i dont have that part

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Iggy131313   
Iggy131313

This is killing me, its unbearable, and also very scary as all the sites say no treatment etc and that this is a permenant condition...BUT alot of the poeple have tried loads of drugs etc we need to look at this from our point of veiw - ie - from a protracted cns injury point of veiw...

 

having had akathisia alot during my withdrawal I can say for sure that its the same feeling, for me, at least, its akathisia in the genitals, unbearable....so if it IS akathisia (and many reports of pgad link it to restless legs) then how do we treat akathisia?

 

1) do not further stimulate the nerves that are in restless distress...therefore it makes sense to me that although the drive to ''do something about it'' is strong that we should try to not give in, I know how hard that is, trust me, but surely we would be further aggrivating nerves that are already ina  state of high aggitation? the drive and compulsion to ''do something about it'' is the same as the drive to move with akathisia so its almost imporssible not to give in, but I think we need to try,

 

2) No further drugs, as we know drugs and certain suppliments on a hyperaroused cns causes bad reactions, so perhaps the women who have had this for years have taken loads of drugs to try to 'treat' this condition, but paradoxically aggrivated it.

 

I know cassisysmile on here has not taken any further drugs apart from the occasion benzo and hers has improved over the years, most women say its progressive and gets worse, but cassidysmile stopped giving into the drive to 'do something about it' and avoided more drugs, we should follow her lead in this.

 

Cassidy if you could tell us if yours was 24/7 at the start? and then did you start to get windows (times of no sysmptoms) or was it always on and off for you? Mine is 24/7, 24/7 with no breaks.

 

and give us some information on what you did at the onset of this condition im sure that those of us here is great distress would be so grateful..

 

Cassidysmaile you also say you take sleep meds, is that the benzo? or something else?

 

also we have to cling to the possiblilty that what we have is a psudopgad caused by the chaos of protracted withdrawal and it could resolve in time, I pray to god this could happen.

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Iggy131313   
Iggy131313

another theory we could use is the dopamine theory, IF this was possibly the bodys way of trying to increase dopamine levels vis the orgasm then once again I belive abstaning from ''sorting it out'' would be of great importance...

 

this is only speculation of course but if the brain was trying to correct dopamine levels by using the orgasm and we provided it with the dopamine by 'reliving' the problem then the brain might continue to use this method as it ''worked'' and when it sent out sigals for dopamine (pgad symptoms) we provided it, it may reset to doing that all the time, perhaps if we do not provide dopamine via that 'method' then the brain would be forced to find alternative ways to heal.

 

Third Theory

 

thihs of course is the one I hate, and it pertains as stated above in Spidys post to Nerve damage.

 

If this is indeed nerve damage, which is possible then we are left with few options, of course it could be that if the nerve is not too badly damaged it could repair itself to some extent, however fish oil may be of great benefit, as myelin (the protective sheils around nerves that provents its death) is made of omega 3 fats.

 

Lots of acounts of women with condition talk about a remitting relenting pattern before the condition becomes non stop, this would be the time where repair is trying to take place, if we took high doses of omega 3 perhaps we could assist the repair in taking place....

 

Hoowever it would be interesting to hear from cassidysmile to whether symptoms were 24/7 for a while before moving into a windows and waves pattern, this would suggest healing as we know.and the women who talk of it becoming constant we dont know if they have added more harmful drugs into the mix.

 

we also dont know how commen this is in withdrawal, one lady has contacted me to say she had this for a short while during withdrawal and it went away, however hers was relived after ''sorting it out'' so its not quite the same as the unrelenting stuff we seem to be going through.

 

quite hionestly I have no desire to learn to live with this condition, none at all.

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Iggy131313   
Iggy131313

ok, heres another theory...

 

I know from speaking to CS, that her symptoms went away during prgnancy, 

 

here is somehting I found onlinr

 

when you are pregnant you start to produce alot of this stuff

 

Prolactin (PRL), or Luteotropic Hormone (LTH), is a protein consisting of peptide hormones, which regulate immune and endocrine functions within the human body.

Production and secretion of Prolactin

MRNA and DNA genetic structures govern how amino acids secrete peptide hormones into the blood stream for cell synthesis into the nucleus, which are then used for biological function. Prolactin is one of the peptide hormones released by the pituitary gland from the anterior, or adenohypophysis lactotrope cells, stimulating mammary glands. Prolactin is also secreted by cells in the breasts and uterine lining or endometrium (decidua).

A guy who wrote a paper on Pad (I will link to it) said this

 

4. Endocrine Associated PSAS - characterized by minimal or absent refractory phase after orgasm 

or by chronically elevated sexual arousal due to a hormone related disorder. Women in this category 
would have PSAS beginning at the time of menopause, or would have increased PSAS symptoms during 
a specific phase of the menstrual cycle (usually for a few days before the onset of the menstrual period).
The three hormones which may play a role in PSAS are progesterone, prolactin, and oxytocin. 
A few women appear to be over-sensitive to the arousal effect or to the lowered orgasm threshold effect 
of Progesterone, suffering from PSAS symptoms premenstrually, during early pregnancy, or while on 
progesterone medication. One of my patients had constant sexual arousal and multiple spontaneous 
orgasms when treated with progesterone to reduce the risk of a miscarriage in the first trimester of 
pregnancy, but her PSAS resolved entirely when the progesterone medication was discontinued. Dr. 
Riley (via Dr. Leiblum’s paper) published a case report of a woman with a diagnosis of PSAS who had 
uncontrollable arousal and masturbation for a few days before each menstrual period, but no symptoms 
of PSAS during the rest of her menstrual cycle. The premenstrual phase is the time when natural 
progesterone levels reach their peak, followed by a steep decline. Several other types of premenstrual 
dysphoria are well known, and all seem to be related to the progesterone level. Fortunately, control of 
progesterone levels and progesterone cycling is medically relatively easy. If this type of PSAS is 
related to progesterone physiology, a number of treatment options would be available including 
noncyclic oral contraceptives, late follicular phase estrogen patches to reduce luteal progesterone 
production, or even progesterone receptor blockers such as RU-486. 
Another hormone, Prolactin, has recently been shown to maintain the refractory and relief phase after 
orgasm. Men have a larger release of prolactin after orgasm, which seems to reduce arousal, erection, 
and orgasmic capacity for several hours after orgasm (i.e. the “refractory phase”). Women typically 
have a delayed or lowered prolactin release with much smaller and shorter refractory phases and 
therefore are capable of multiple orgasms, but usually achieve relief and resolution after one to five
orgasms. A prolactin release disorder could play a role in some women with PSAS. An absence or 
deficiency of prolactin would lead to continued sexual arousal with minimal or no relief after each 
orgasm. These women may have a very short refractory period lasting for a few seconds to a minute or 
so, followed immediately by another rapid build up of sexual arousal. If minimal or no prolactin surge 
is released from the pituitary at the time of orgasm, or if the prolactin hormone receptors are absent from 
pelvic organs or brain centers, then these women would have no relief or resolution of pelvic 
congestion. This potential cause of PSAS is speculative, but would likely respond to prolactin based 
therapy. Some medications will dramatically increase the release of prolactin from the pituitary gland -
an example is Domperidome which is normally used as an antinausea drug. Whether these medications 
will also increase the prolactin surge after orgasm is uncertain, but if so they would be useful in the 
treatment of PSAS. Researchers are currently developing more powerful drugs to specifically enhance 
or block prolactin receptors in diifferent tissues, and when commercially available these new medications 
could be even more effective. 
Oxytocin is the other hormone released in large quantities from the pituitary gland at the time of orgasm, 
causing contraction of tiny muscle cells in the breast and generating a sense of relaxation or calmness in 
the brain. It is conceivable that an absent or diminished surge of oxytocin would minimize or prevent 
resolution of pelvic congestion, or the subjective feeling of relief. Women with oxytocin deficiency 
may experience very short refractory periods after each orgasm followed by a rapid return of intense 
H Page 3 of 5
 

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Iggy131313   
Iggy131313

ok so now tying togather the dopamine and prolactin therories

 

The neurotransmitter (dopamine) also contributes to lactation by regulating the release of prolactin

Read more: http://www.livestrong.com/article/505147-dopamine-pregnancy/#ixzz2YYatg5nE

 

So if the dopamine transmitter is responsible for regulating prolactin then it all ties in together, taking more antids will just deplete dopamine levels further thus making the problem even worse, but think most women with pgad are aware of this, what we dont know of course is if the issue could be a lack of dopamine (it seems it could be as I said it feels the same as akathisia to me, which is a dopamine issue, most say, as are most movement disorders) or is te neurotransmitter not working right?

 

If the transmitter was broken then CS would not have felt fine during pregnancy, but as her dopamine levels and therefore prolactin levels were raised she experienced no symptoms during this time, other women experience an onset of pgad during prgnancy, this all points to dopamine being the main culprit.

 

In my eralier days in withdrawal I smoked some pot which took away my akathisia, but then it came back stronger....this is talking about the ''sorting it out'' issue, yes the pot took away my akathisia, but then my body had terrible rebound from that causing worse akathisia, if I continued to smoke pot I would just be exaserbating the issue,

 

whats everyones opinion on what I have said?

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Iggy131313   
Iggy131313

not to promote drugs but I wonder if anyone has tried a short course of abilfy for this...

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Altostrata   
Altostrata

I don't believe you can figure this out by mapping various receptors to various sensations.

 

Psychiatric drugs are hormonal disruptors and withdrawing from them causes hormonal disruption as well.

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Iggy131313   
Iggy131313

there does seem to be a link between prolactin and dopamine though, although I know Im not going to figure this out but Im in such distress I have to do something

 

Prolactin is a bit different from all other pituitary hormones. In most cases, production of pituitary hormones is normally turned "off," and releasing hormones are sent to stimulate the pituitary when more pituitary hormones are needed. In the case of prolactin, however, prolactin secretion is generally turned "on" unless the hypothalamus secretes the prolactin-inhibiting hormone dopamine to turn prolactin production "off." Dopamine travels from the hypothalamus to the pituitary in a small network of veins called a venous portal system. Anything that interferes with this fine network may prevent this inhibitory message from reaching the pituitary gland. The result is that the pituitary will produce too much prolactin. In some cases this overstimulation induces the overgrowth of prolactin-producing cells, and a small pituitary tumor (adenoma) is the result.When the hypothalamus sees high prolactin levels, it manufactures more dopamine, trying to get prolactin levels back to normal.

Unfortunately, if the message doesn't get through, the pituitary continues to produce and release prolactin. Meanwhile, the high levels of dopamine in the hypothalamus can block the release of another hormone, GnRH, which is necessary for normal ovarian function.

Read More http://www.ivillage.com/what-normal-prolactin-level/4-n-139205#ixzz2YZ0NC8qv  

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cassidysmile   
cassidysmile

This is killing me, its unbearable, and also very scary as all the sites say no treatment etc and that this is a permenant condition...BUT alot of the poeple have tried loads of drugs etc we need to look at this from our point of veiw - ie - from a protracted cns injury point of veiw...

 

having had akathisia alot during my withdrawal I can say for sure that its the same feeling, for me, at least, its akathisia in the genitals, unbearable....so if it IS akathisia (and many reports of pgad link it to restless legs) then how do we treat akathisia?

 

1) do not further stimulate the nerves that are in restless distress...therefore it makes sense to me that although the drive to ''do something about it'' is strong that we should try to not give in, I know how hard that is, trust me, but surely we would be further aggrivating nerves that are already ina  state of high aggitation? the drive and compulsion to ''do something about it'' is the same as the drive to move with akathisia so its almost imporssible not to give in, but I think we need to try,

 

2) No further drugs, as we know drugs and certain suppliments on a hyperaroused cns causes bad reactions, so perhaps the women who have had this for years have taken loads of drugs to try to 'treat' this condition, but paradoxically aggrivated it.

 

I know cassisysmile on here has not taken any further drugs apart from the occasion benzo and hers has improved over the years, most women say its progressive and gets worse, but cassidysmile stopped giving into the drive to 'do something about it' and avoided more drugs, we should follow her lead in this.

 

Cassidy if you could tell us if yours was 24/7 at the start? and then did you start to get windows (times of no sysmptoms) or was it always on and off for you? Mine is 24/7, 24/7 with no breaks.

 

and give us some information on what you did at the onset of this condition im sure that those of us here is great distress would be so grateful..

 

Cassidysmaile you also say you take sleep meds, is that the benzo? or something else?

 

also we have to cling to the possiblilty that what we have is a psudopgad caused by the chaos of protracted withdrawal and it could resolve in time, I pray to god this could happen.

MY symptoms were much worse in the beginning...24/7, severe symptoms for several weeks...to allieviate the symptoms, I avoided prolonged sitting , distraction!!, I work full time so that helps to distract myself, I avoided all sexual activities(which i find make it so much worse, it aggrevates the symptoms), I also tried tramadol (mild pain med)...It was trial and error...whatever made it worse, i avoided. my md tried to put me on lexapro which made it worse, tried gabapentin after seeing a vulvar specialist with no effect. Luckily it started to subside somewhat after several months...no symptoms at all during my second pregnancy (thought I was cured) but several weeks after I delivered...symptoms came back (I was not on any medications at that time). I

Current meds: klonipin as needed, ambien/melatonin for sleep

Dr. Barry Komisaruk isworking on getting a research study to find a cure...he has looked at many pelvic MRI and found tarlov cysts...google his research. 

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MaryKA   
MaryKA

Thank you Iggy and Cassidy and Alto, it's the individual that counts, not the theory!! All one needs is the evidence ... mmm, MRI do cost a bob or two ...

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Altostrata   
Altostrata

Iggy, I must ask you to stop posting half-digested and misinterpreted pseudo-scientific material "although I know Im not going to figure this out but Im in such distress I have to do something."

 

We urge people to think constructively about their symptoms, your posts tend to be discouraging with no basis but your own pessimistic view of your condition.

 

You seem to spend your time combing the Web for factoids supporting your most dire fantasies, then post them here. This site welcomes good information. You have no idea what the information you post means. The quality of your theories is poor. They are not welcome.

 

"Im in such distress I have to do something" -- meaning scaring other people and making yourself the centerpiece of distress. Stop this immediately.

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