Friday, December 07, 2007

PGAD. EGAD! Another Syndrome/Disorder, Whatever!

Just when you thought it was OK to call Restless Leg Syndrome (RLS) a "real" medical condition that affects mostly women, here comes another syndrome (no, disorder! whatever!) besetting women: Persistent Genital Arousal Disorder or PGAD. And Paxil may help treat it (you can read Ed Silverman's post "Persistent Genital Arousal Disorder - A Pill, Please" to find out more about that).

At first, when reading Ed's post, I thought this was about a condition affecting men. I've heard that men think of sex about once every 4 seconds. I'm sexually aroused right now just writing about this stuff. And no, I'm not talking about "priapism," which IS a real medical condition affecting men (who may be taking too much Viagra).

Nope. It's not about male persistent sexual arousal, which is a normal state for us guys (and we don't need no stinkin' pill for it either!). It's about women, some of whom need to masturbate repeatedly to deal with PGAD. One woman claims to have rejected her husband because she "treasured any time she was not feeling aroused." Maybe less masturbation would help?

This story was picked up on, which used the image shown here (above) to illustrate the story. I find it oddly disturbing, don't you?

I'm thinking this story is part of the opening PR/marketing salvo by the folks at GSK, the drug company that manufactures and markets Paxil, as they collect clinical data to support a PGAD indication for the drug.

GSK, you recall, is the same company that brought us Requip for RLS! Coincidence? I think not!

Right now, the Requip ad agency may be hard at work coming up with the Paxil/PGAD TV DTC ads that may take a page or two from the Requip/RLS ads. Here's my concept of the storyboard.

[Woman looks up into the camera. Ominous, mysterious music in background.]
"It was so frustrating. Like an urge I couldn't satisfy.
[Cut to woman in bed next to man -- assumed to be her husband. Woman is wriggling under the sheets with her hand down her pajama bottoms.]
"Night after night, strange feelings of arousal in my genitals kept me from falling asleep."
[Woman angrily tosses sheet up and over her male companion -- as if HE were to blame -- and gets up out of bed.]
"I had to get up and really masturbate when all I wanted to do was get out of this awful relationship!"
[Cut to woman in kitchen with a friend who shows her an "independent" article in Woman's Day magazine about "Persistent Genital Arousal Disorder". She sees the article and it is as if a light went off in her head.]
"I had PGAD - Persistent Genital Arousal Disorder!"
[Etc, etc; her doctor confirms it; symptoms worse whenever her husband WASN'T AROUND or at night when she was dreaming about OTHER men (or women, who knows!).]

[Cut to profile close-up of doctor's lips moving.]
"And then he said something else. PAXIL!"
[Background music changes to pleasant tune, very soothing. Side effects; etc., etc.]

[Cut to final scene. Woman riding bicycle with very hard, narrow seat down a country lane.]
"Thanks to Paxil, PGAD is not a problem any longer. Riding my bike also helps. And I got rid of my loser husband!"
[Fade to black.]

Let the hate comments come in!


  1. Lisa Van S12:03 PM

    Loved your analogy

  2. Anonymous12:23 PM

    Hey, watch what you say about RVS! It's a serious medical condition that affects X million American adults each year. And my dog died from it.

  3. Anonymous5:36 PM

    Which celebrities do you think will do the ads?

  4. Anonymous7:50 AM

    Yet again, life imitates art. This time, I'm suing GSK for patent infringement...

  5. I had never heard of PGAD until last week so I doubt it is a common condition, assuming it even exists. The opposite condition is much more of a problem and is a common side effect of SSRIs.

    Can you comment on that idiotic TV commercial for the Cypher stent, if you haven't already? I can just see heart patients asking their doctors to put in a Cypher stent as they're heading for the cath lab.

  6. Anonymous9:41 PM

    Exscuse me I deal with this condition and by the way I hate attention focused on me it is the most embarassing condition I have ever faced and it is because of doctors who would like to believe it's all in our head is why many woman don't come out. I would love to have relief even if it means no havy sexual pleasure for the rest of my life.


    The Riverside village was hot
    Hence, men always fought
    All tried to cool the heat
    But fell flat on thier feet
    Knight GSK rode the PGAD horse & got caught

  8. Anonymous6:30 AM

    Those women are called nymphomanic. Nothing new.

    SSRI are well-known to cut down libido, hence the idea to treat such condition with Paxil.

    Problem is women with such condition rarely complain about it...surely not their husband.

    You are surely right about companies looking to milk their drugs to the last drop though.

    1. Anonymous2:18 AM

      Funnily enough, the use of SSRIs has been linked to the onset of PGAD (which, by the way, is real-: try developing in when you already have OCD. This was enough to send me over the edge and suffer a nervous breakdown. I suppose the author of this article also thinks that was great fun.)

      It seems that the medication I was prescribed to help my OCD and depression created a new condition that only made them so much worse.

      Also, it's completely different to nymphomania. I've only ever slept with my current partner and the pain and discomfort I suffer- as a result of this 'made up' disorder- means I've felt unable to have sex for ages. I feel sorry for him but there's nothing I can do about it.

      The 'arousal' I get doesn't actually feel exactly like normal arousal- it's like a weird mix between arousal, needing to pee and a urinary tract infection. Similarly, the muscle spasms or 'mini orgasms' I sometimes have only partially resemble real orgasms and are accompanied by low level pain and high level physical discomfort. I also get a more painful version, which usually feels like a sharp pricking sensation but sometimes resembles a burning sensation or muscle cramps (the muscle cramps are particularly painful.) I actually prefer the prickling and burning feelings (as long as they aren't too painful) because they provide greater relief from the uncomfortable congested feeling (which is horrible.)

      I wanted kids but I'm now so grateful I don't have any because i can't control when the sensations happen (they happen randomly) and the thought of them coinciding with bath/ nappy changing time makes me feel sick.

      I've had a number of tests done which indicate (a) that I have excessive blood flow in my pelvis and (b) I have cysts on one of my ovaries. I'm due further tests but I keep hoping that one day I'll be cured of this. Until then, goodbye to my dream of having children.

    2. Anonymous5:26 PM

      Don't worry about the redneck trolls.
      I also have this condition, and even some doctors are ignorant enough in 2015 to simply ignore me.

  9. Anonymous2:41 AM

    Typical male response to a serious female health issue. It seems funny at first blush, but to someone living with this problem, or someone support such an individual, it's no laughing matter. It probably is a cash-grab on the drug companies part, as there really is no treatment yet, but Paxil did help somewhat.

  10. Anonymous12:34 AM

    This is post is very upsetting. So you think all women complaining about this disorder are making it up? you think there is no such disorder? I have this and it is very disturbing and painful. Imagine living your life 24 hours a day feeling like you are in the middle of having sex! It is not funny or desirable. People with PGAD, are not thinking about sex- don't want to have sex- it has nothing to do with sexual desire!!!- yet your genitals are constantly aroused. You can't concentrate on anything, you sit around praying and thinking of ways to get the feeling to stop but nothing works. I am hopeless because I can't find any help, crying at my computer because there is nothing to help this disorder and then I come across this asshole. It is painful and I feel like I am going insain, and having sex doesn't help it so if Paxil does than give me some please.

  11. I never said women were making it up. It's just fun to imagine how pharma marketers will advertise the treatment.

  12. Anonymous12:19 PM

    When you "have fun" with some issues surrounding a disorder, it can be difficult for people who suffer from it, particularly when it is a poorly understood disorder, to recognize just precisely what the real target of the "fun" is. Maybe because there just isn't any fun to be had (for them).

  13. Reese7:33 PM

    John Mack,

    I suffer from this disorder and it is frustrating and never-ending. It can be nightmarish and leave me huddled in a pile on the floor, sobbing. When few hours of relief finally do come, my genitals feel kicked, bruised and tortured.
    Your article sounded like the ravings of a man who is ignorant, rude and jealous. Do not project your own sexual insecurities onto your readers through deplorable, pompous joviality… it is very unbecoming.
    However, I am appreciative to you for one thing. I miraculously found a cure for my Persistent Genital Arousal Disorder…. I glanced at your picture.

    John… worry about your own genitals and stop envying and giggling about ours.

  14. I must say that most of the negative comments I have received so far misses the fact that I am poking fun more at how GSK might handle the ads for this condition than the condition itself.

    In fact, I believe most DTC ads actually depict women in a negative way.

    First of all, the ads for PGAD treatments will most likely imply that many more women suffer from this condition than is supported by the evidence. That generates an impression of women in general rather than a very small subset of women.

    Currently, the impression of women I am getting from most DTC ads are that most women suffer from depression in ads -- I see very few ads of men suffering from depression -- have mysterious, hard-to-define syndromes -- and they are battered-looking, suffering creatures who really really need help from a pill!

    Is this the image that women want to relate to?

    Yes, I know there are women out there who DO suffer from these conditions. I'm just objecting to the way that women are objectified in DTC ads!

    In contrast to most women in DTC ads, most of the men I see in these ads are strong and vibrantly alive -- even ED sufferers are young, viral, sexy men with great looking women partners who are HOT for them!

    So, for PGAD, I see an image of a woman printed in a major newspaper objectified as a cartoon vagina and she doesn't look happy (BTW, I did not create this image). Other women in other DTC ads also do not look very happy.

    There is one exception that may prove the rule: the ad for Amitiza -- this woman has a medical problem, but it's not detracting from her attitude and there is a positive feeling as she goes about her life.

    DTC advertisers: let's stop depicting women as victims!

  15. Anonymous3:16 AM

    It's called Cougar mode, idiots! Women get this at a certain point in their lives. It just happens, so read something inspirational in a positive way, exercise, and if worse comes to worse, put an ice pack on your crotch...

  16. Anonymous10:28 AM

    Don't give up your day job ---you'd never make it in Hollywood as a screenwriter!

  17. Anonymous7:31 AM

    I appreciate any attempts to expose the money-grabbing drug companies. But I abhor the sexist, mysogynistic tone of this blog, which implies that PGAD is a figment of "neurotic" women's imaginations.

    As someone who suffers from this condition, I can assure you that it is not. It is intrusive, uncomfortable and embarrassing - and not something that I can tell people about, as evidenced by some of the ignorant comments to this blog.

    I've been fortunate to find an email forum of other sufferers. It was wonderful to find that I'm not alone, or crazy, or a "nympho", as someone has implied.

    It takes a while for conditions such as ours to be recognized by the medical profession - look at the way ME sufferers used to be treated.

    PGAD is not funny. It's like a serious itch in a private place that you can't scratch, and if you do, it only makes it worse.

    I wish that you could experience it for just a day. That would shut your mouth and perhaps transfer your blog to a more constructive direction, such as finding a cure.

  18. My question as a biochemist is simply: Why are only women afflicted? The exclusive presence solely in the female population warrants further study and is a bit perplexing.

    I have a feeling that any drugs which dramatically elevate prolactin and destroy sex drive (mu-agonist opioid compounds) would probably relieve the disorder. Because of dependence and elevating tolerance, some of the milder ones like Buprenorphine (Suboxone) or Tramadol may be the only ones effective on a longterm basis. Tramadol, with its SSRI action, may have additional utility in alleviating symptoms.

    And, no, I'm not with big pharma, I'm a university student.

    1. Anonymous9:26 AM

      Apparently it isn't only women who suffer from it. I've read about men who suffer from arousal- like symptoms without actually having an erection. From what I understand, GGAD isn't actually connected to 'sex drive or libido.'

      The rest of this post is basically for anyone who might be interested in hearing from someone who actually suffers from PGAD symptoms.

      Strangely, many cases of PGAD have been linked to the use or sudden cessation of SSRI medication. It has long been established that some types of antipsychotic medication cause neurological disturbances, which present as tremors similar to those experienced by people with Parkinson's disease. Some PGAD specialists think that SSRIs can cause similar neurological problems in the pelvic region.

      I have depression and OCD, which I've suffered from for most of my life and I suspect my symptoms might have been triggered by suddenly withdrawing from an SSRI antidepressant (which turned out not to have been the best of ideas...) I'm now on Venlafaxine (an SSNRI) which suits me much better but I the Depo Provera injection seems to have done the most to alleviate my PGAD symptoms.

      Tests have indicated that I have an excess of blood in my pelvis and I may have polycystic ovaries. I'm currently awaiting more tests to investigate the possibility of pelvic varicose veins. Of course, I can't say for sure that my medication caused this condition but it does seem a strange coincidence...

      Another common cause of PGAD is Tarlov cysts on the spine (which I don't have.) Again, this might be linked to the use of certain types of medication.

      For me, PGAD arousal feels in some ways similar to, but not exactly like normal arousal. I sometimes use the analogy of having your arm tickled in a nice way (which I love) and it's 'resemblance' to persistent itching (which, as an eczema sufferer, I don't love)- both feel 'tickly' but one is nice and the other isn't. Finally, the 'arousal' is usually accompanied by varying degrees of pain, a feeling of irritation/ soreness and congestion, which is really uncomfortable.

    2. Anonymous5:32 PM

      There have been plenty men diagnosed with same disorder. Simply the first few women came first, because I can imagine with the presence of physical ejaculations, it's even more embarrassing for men to admit to. Do your research.

  19. Anonymous9:15 AM

    wow John Mack,
    you are a brave man to leave so many of those nasty remarks from woman on your blog!

    I am a woman and I did not feel the least bit offended by the point you were making John. But I was quite put off by the rubbish some of those woman posted as comments... I wonder if those nympho dykes really have PGAD or if they can finally submit to being nymphomaniacs that are in a sour relationship.

    If they really aren't suffering from Cougar mode... then they should post the email address or forum where other true suffers can get some relief.

  20. Anonymous6:36 AM

    I re-read your comments to some posts, and I take it back...unless you're being coy, you do seem to anti-big p;harma, and with that I'd right there behind you.

    Seroiusly, though I myself have this sickening disorder, and i"m a's ruining my whole life; I can't think straight w/constant desrie on my, I apoologize for the a hole remark...just to set it straight......

    1. Anonymous5:33 PM

      Desire? This disorder is purely physical, there is no metal desire attached to it. You might just have extreme sexual thoughts, that's all.

  21. Anonymous6:38 AM

    And althogh you're right about TRAMADOL does help some, as soon as tolerance is built, it's a fleeting answer...hell, I Have serious bone disease...and am on more potent narc's (that don't have the SSRI) ocmponent in it however, many people whem coming off the ssri, is when the Restless Genital SYndrome started; it's etiologly...for other's like me it was surgery, and sitll other's car accidents and pregnancies.

  22. Dear anonymous,

    Thank you for your comments. I hope you do not mind that I did not post your first comment, which you seem to be amending here.

    I am not really anti-big pharma. I am anti pharma marketing that pushes the envelope.

    I often blog about pharma developing drugs for conditions that may not warrant the diversion of R&D funds from other, more life-threatening diseases.

    I suspect that PGAD is another example of a disease created by pharma marketing people. Of course, there probably are people who have symptoms of PGAD and it would be great if they could just take a pill every day to be relieved of them. Pharma should just stop marketing these conditions as if many more of us suffered from them than is actually the case. They are just trying to boost sales, not help people.

  23. Anonymous11:40 PM

    Just came across your blog after searching PGAD because of a TV show on discovery health. Any idea how many women are thought to have the "disorder" or condition? Before I jump on your band wagon that GSK is inventing another disease that is rare or non-existent to boost sales, There are a few flaws in your argument.

    1)Hard to believe that they (GSK) would choose these symptoms to "convince" women that they have a disease. Seems real straight forward to me.
    2)You may be underestimating the intellectual might at GSK, they are not going to pursue a market opportunity that does not have significant potential. If it doesn't exist GSK would not waste their time and money.
    3)The dirty marketers don't make the call on what products or disease states they can push on people, the researchers and medical people have to study these things for years (and get approved by the FDA - costing millions) before the profiteers even get a shot.

    Lastly do boosting sales and helping people have to be mutually exclusive? Is it possible there is a win-win help people and make money?

  24. Anonymous8:42 AM

    Just wanted to respond to the coments posted by the ignorant people who label women with PGAD as 'nymphamaniacs' etc.
    Have you actually bothered to do any research at all on this condition?
    Many women with this condition actually find that their sex drive (that is, the desire to have sex as opposed to the physical feelings of arousal) lowers as a result of the condition.
    Also, for those who feel 'jealous', can you imagine the distress of feeling aroused whilst having to deal with certain situations (eg attending the funeral of a loved one, facing an important job interview, or watching your kid and his friends play football)? I'm sure that some of the people who suffer from this condition must have experienced similar situations (again I must stress that the physical sensations associated with PGAD is often completely SEPERATE from the desire to engage in sexual activity. An attack can occur at any time and does not go away just because the sufferer no longer wishes to feel 'aroused').

  25. Anonymous9:16 AM

    I just ran across this and I'm sorry that Mr Mack sees certain comments taking issue with what he wrote as a hate comments, as though he can brush it off and not even consider the hurt he caused. Those who suffer from this do not see it as a laughing matter and it has been very difficult for women to even "come out" and speak about it. It is believe far more people suffer from this but will not say so for that very reason. By writing "male persistent sexual arousal, which is a normal state for us guys" implies the author's bias, ignorance or both.
    To one commenter-no, it is far different than nymphomania. In fact, it is much more similar to priapism--a "real medical condition," as the author acknowledges. Ironically, drugs like Paxil have actually caused PGAD in some women (and men). Of all things, Reglan (which induces prolactin) has been more helpful, but only for some and not a cure.
    But, to be fair, Mr Mack, would you please write a few mocking commercials for cancer, autism and spinal cord injuries (which has be known to cause PGAD)? Then I'd feel comfortable knowing you aren't singling out PAGD and that you truly are just mocking the drug companies in that "equal protection" kind of way you so futilely imply.

  26. Dear anon: I think putting PGAD on the same level as cancer, etc, is ludicrous. You may have PGAD, but it is far from life-threatening.

    My humor regarding this condition has to do with my vision of how this condition and women who suffer from it MAY be portrayed by pharma marketers on TV and in print. Many drug ads tend to portray women in a negative manner -- as passive, weak victims, whereas men are portrayed as active and strong (eg, recent Viagra ads).

  27. Anonymous5:24 AM

    Regarding PGAD being far from life threatening, please tell that to my friend who has considered taking her life a few times due to it. She developed PGAD at age 40 following a spinal cord injury. The bones healed, but the nerve damage caused this "whatever" (as your title refers to it). She cannot drive, sits rarely and has been unable to live life the way she use to. She talks to very few about this and I am honored that she trusts me enough to be an occasional shoulder for her to cry on. It is because of her accident that I have read up on this disability.

    Life altering can be life threatening. But, why argue over semantics? That's a straw man argument.

    To be fair, feel free to take cancer out of the equation and write up a mocking piece on spinal cord injuries. That would certainly apply. Never mind that a uterine cancer survivor developed this after her hysterectomy (possible nerve damage and/or hormonal imbalance).

    You did make your point about how the media portrays women. We have no disagreement there. Considering that insurance covers viagra, yet some of those same companies won't cover birth control is testimony to a skewed approach this country has towards women's health. Look how long it took for a woman to speak on national television about the details of her sexual assault experience.

    My point, however, is your lack of sensitivity and understanding of PGAD is shown by your other comments, including your reply. While you may have appealed to some who wish to laugh and mock the victim with you, awareness and understanding of this disability is tough enough to come by--as is the much needed research to cure it. It's posts like yours that further a victim's reason to suffer in silence.

    That said, I do hope a cure is found and that the only concern is how to advertise it. Perhaps the best approach is the straight forward one-novel thought.

  28. Anonymous10:21 AM

    To Chris,

    I doubt this comment will reach you, but I'd like to thank you for your thoughtfulness. You are right. Prolactin has helped some PGAD sufferers-not all. The problem is, there is not a prolactin pill. Reglan, ironically, induces prolactin. The problem with Reglan is the potential side effects (tic disorder, Tardive Dyskinesia). I think there might be a Prolactin inhalant. I don't know if that is very effective.

    There are a few men who claim to have PGAD. Though, many have compared PGAD to the male version of priapism (though not immediately life threatening). Some women do experience extreme pain.

    As for SSRI's, they've been known to cause PGAD in some women and worsen it for others. It's probably not the best path to explore.

    I would think a meeting of the minds in neurology (a neuropathy component seems to exist) and endocrinology might be warranted if ever funding for research is available. My friend developed hers from a seriously spinal cord injury.

    There are still many societal road blocks to jump as Mr. Mack has illustrated. Like RLS (thought to be neurological), PGAD is mostly a female health issue and not taken seriously.

    Again, I don't think this comment will reach you. I hope you got your required degree(s) and are involved in a project that is quite rewarding to you and to medical science. Minds like yours are a blessing. Thanks for your interest and consideration.

  29. I do understand what your saying about marketing but I would like to bring to your attention to the fact that some women who are on here trying to find help for themselves may be feeling on edge and silly disturbing comments on here may just push them over this disorder is very real and doesnt not only effect the quality of the womens life but also their husbands and most importantly their children and I believe that there is not very much being invested by pharma companies and maybe thats because their drugs may be the cause rather than the cure but who knows I honestl;y wish people in this world would show some empathy because maybe if they did they would start investing time and energy to bring some positivity on this subject and help rather than hinder because they would invest billions if men had the condition they couldnt have men walking round with condition would they.

  30. Unfortunately, this blog is NOT a forum for patient support -- it has a very narrow focus on the world of pharmaceutical marketing. I will, however, support any blog YOU may have that IS a patient forum on this specific topic. Feel free to publish a link.

  31. well its probably just aswell that people did not come here looking for support most people with the condition probably just stumbled on this I know I did I was actually trying to find out if any big companies had started investing in research and this site came up so I just checked in but I may take you up on your offer .


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