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December 7, 2012 3:13 PM Subscribe
On November 30, the Tampa Bay Times published a sympathetic profile of Spring Hill, FL resident Gretchen Molannen: "Persistent genital arousal disorder brings woman agony, not ecstasy." Her condition, also known as PGAD, is a rare sexual disorder (not recognized by the DSM,) 'characterized by spontaneous, persistent, unwanted sexual arousal unrelated to feelings of sexual desire.' The Times reported that Ms. Molannen's condition had virtually destroyed her personal and professional life and led to several suicide attempts. One day after the article was published, she successfully committed suicide.
The first link in this post describes Ms. Molannen's suicide attempts, which some may find disturbing.
CBS News: Gretchen Molannen's suicide spotlights debilitating effects of persistent genital arousal disorder.
Ms. Molannen was able to identify her condition after watching a 20/20 report several years ago.
The second Tampa Bay article mentions an online PGAD support group. and gives an timeline of the newspaper's involvement:
The first link in this post describes Ms. Molannen's suicide attempts, which some may find disturbing.
CBS News: Gretchen Molannen's suicide spotlights debilitating effects of persistent genital arousal disorder.
Ms. Molannen was able to identify her condition after watching a 20/20 report several years ago.
The second Tampa Bay article mentions an online PGAD support group. and gives an timeline of the newspaper's involvement:
Molannen agreed to tell her story in July. The Times interviewed her for a total of 10 hours, about half in person and half on the phone. In August, she went before a disability judge for a second time. He later rejected Molannen's disability claim and she gave that rejection letter to the Times.
Last week, after the story had been written and edited but before it was published, it was read to Molannen word for word. Several small details were removed at her request. Before publication, the Times thanked her over the phone and in an email for her help. She replied by email on Nov. 28:"Thank YOU for taking an interest in doing a story for me! I am flattered that you cared so much to want to help. I just hope this will educate people that this is serious and really exists, and that other women who are suffering in silence will now have the courage to talk to a doctor about it. If men have suffered with the shame of impotence or even priapism, now it's time for women to get help as well. Thank you for your patience with me and for devoting so much time to this. I'm sure your editor is very proud of your work and I'm excited to see my own story online."The Times tried to reach Molannen over the weekend by text, phone and email to see how she was doing. She did not respond. On Monday, her boyfriend sent the Times an email, saying she had committed suicide and the story "won't help her now."
The real story is, "Woman who resorted to a craigslist ad in a desperate attempt to afford a diagnostic MRI and who was accused of filing a fradulent disability claim and denied medical benefits and support and whose lastest suicide attempt over it all was just two weeks prior, finally succeeds in getting relief the only way she believed was available to her." The nature of the medical condition is irrelevant: this woman died of one of the most shameful and barbaric lacks of a medical safety net outside of the goddamn third world.
And it's nice the article got her some offers of assistance (too late) but no one should have to rely on winning the fucking human interest media story lottery to get basic care.
posted by availablelight at 3:28 PM on December 7, 2012 [191 favorites]
And it's nice the article got her some offers of assistance (too late) but no one should have to rely on winning the fucking human interest media story lottery to get basic care.
posted by availablelight at 3:28 PM on December 7, 2012 [191 favorites]
American morality seems to think this kind of thing is tolerable if we stop a few people from succeeding in making fraudulent disability claims.
For fuck's sake, I'd rather have the fraud.
posted by Drinky Die at 3:32 PM on December 7, 2012 [131 favorites]
For fuck's sake, I'd rather have the fraud.
posted by Drinky Die at 3:32 PM on December 7, 2012 [131 favorites]
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posted by limeonaire at 4:03 PM on December 7, 2012
posted by limeonaire at 4:03 PM on December 7, 2012
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posted by scaryblackdeath at 4:06 PM on December 7, 2012
posted by scaryblackdeath at 4:06 PM on December 7, 2012
That is so incredibly sad.
posted by mudpuppie at 4:14 PM on December 7, 2012 [1 favorite]
posted by mudpuppie at 4:14 PM on December 7, 2012 [1 favorite]
My heart aches for her. At least she is out of that living hell and at peace.
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posted by ottereroticist at 4:18 PM on December 7, 2012
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posted by ottereroticist at 4:18 PM on December 7, 2012
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posted by procrastination at 4:34 PM on December 7, 2012
posted by procrastination at 4:34 PM on December 7, 2012
Someone needs to get a few of these women and do lower spinal FMRI on them. They're focusing on the brain, which is wrong; some paraplegic men can be stimulated to erection and orgasm even though they can't consciously feel what is happening.
This is an extremely ancient mechanism; the neutrotransmitter NO whose reuptake is inhibited by drugs like Viagra does not seem to have any other purpose. (I also wonder if anyone has tried blocking the NO receptors for these women. Might not help, what with Viagra being of legendary uselessness for women in its intended role, but it's a thing to check. There is obviously a powerful and important mechanism here we do not understand at all.)
Whatever is wrong in this condition is wrong at the bottom, not the top, of the spine. And whoever figures it out might well be set to make a bundle fixing it for people who are broken in other ways.
And, of course:
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posted by localroger at 4:47 PM on December 7, 2012 [3 favorites]
This is an extremely ancient mechanism; the neutrotransmitter NO whose reuptake is inhibited by drugs like Viagra does not seem to have any other purpose. (I also wonder if anyone has tried blocking the NO receptors for these women. Might not help, what with Viagra being of legendary uselessness for women in its intended role, but it's a thing to check. There is obviously a powerful and important mechanism here we do not understand at all.)
Whatever is wrong in this condition is wrong at the bottom, not the top, of the spine. And whoever figures it out might well be set to make a bundle fixing it for people who are broken in other ways.
And, of course:
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posted by localroger at 4:47 PM on December 7, 2012 [3 favorites]
I read this story this other day, it was rough one. She was ashamed, so didn't ask for help. Then couldn't get help for the lack of decently available healthcare in the states. By then time help started to move in her direction, she commits suicide from the anguish.
It's a goddamn shame.
posted by Brandon Blatcher at 4:59 PM on December 7, 2012 [1 favorite]
It's a goddamn shame.
posted by Brandon Blatcher at 4:59 PM on December 7, 2012 [1 favorite]
Her condition, also known as PGAD, is a rare sexual disorder (not recognized by the DSM)
Why the hell would it be in a book of mental disorders? This is a physical malady.
posted by tzikeh at 5:06 PM on December 7, 2012 [8 favorites]
Why the hell would it be in a book of mental disorders? This is a physical malady.
posted by tzikeh at 5:06 PM on December 7, 2012 [8 favorites]
Let's add, for the sake of completeness, that her life was doubly fucked over by the US legal system: she was denied disability benefits after an utterly Kafkaesque and unspeakably humiliating spectacle in front of a "white-haired veteran" and (of course) "non-nonsense" administrative judge who didn't believe her story and ruled that she was in it for "pecuniary gain."
posted by blucevalo at 5:08 PM on December 7, 2012 [1 favorite]
posted by blucevalo at 5:08 PM on December 7, 2012 [1 favorite]
A paper just came out in the Journal of Sexual Medicine saying that PGAD might be a side effect of small cysts in the sacral spine. The idea being that these cysts are constantly pressing on the nerves in the genital region, thereby causing persistent genital arousal. Maybe a bit like sciatica? The abstract is here.
posted by feets at 5:49 PM on December 7, 2012
posted by feets at 5:49 PM on December 7, 2012
. What an unbelievably tragic story. The sheer, pathetic lack of empathy for Ms. Molannen is heartbreaking and maddening, all at the same time.
I know someone who once took a medication that caused him to be aroused for no reason at all; it wasn't like the condition that Ms. Molannen reported, but my friend told me that for about three days he felt the sensation of being sexually aroused without any stimulus, and the only way to relieve that sensation was to masturbate. He said it was a living hell - nothing seemed to make the sensation go away and he constantly had that "feeling" at a physical level, no matter what he was doing - driving, cooking , eating, trying to get to sleep, etc. He realized that his medication was causing it, and discontinued it. His problem stopped within the next 24 hours. I saw him on the day he stopped taking the problem med, and he was already a nervous wreck. How this woman lived through this for 16 years is beyond me.
Last, there is a special place in Kafka's Hell for administrative disability judges who make their decisions on "automatic". Damn that judge!
posted by Vibrissae at 5:58 PM on December 7, 2012 [9 favorites]
I know someone who once took a medication that caused him to be aroused for no reason at all; it wasn't like the condition that Ms. Molannen reported, but my friend told me that for about three days he felt the sensation of being sexually aroused without any stimulus, and the only way to relieve that sensation was to masturbate. He said it was a living hell - nothing seemed to make the sensation go away and he constantly had that "feeling" at a physical level, no matter what he was doing - driving, cooking , eating, trying to get to sleep, etc. He realized that his medication was causing it, and discontinued it. His problem stopped within the next 24 hours. I saw him on the day he stopped taking the problem med, and he was already a nervous wreck. How this woman lived through this for 16 years is beyond me.
Last, there is a special place in Kafka's Hell for administrative disability judges who make their decisions on "automatic". Damn that judge!
posted by Vibrissae at 5:58 PM on December 7, 2012 [9 favorites]
Also, "no one should have to rely on winning the fucking human interest media story lottery to get basic care" is definitely a moral we can get from this story; another moral is "woe unto you who have a 'sexual' ailment, unless it's one that can be cured with Viagra, because our clinical and scientific understanding of sexual issues is super rudimentary." If you type "orgasm" into PubMed you get 2875 hits. "Itch" gets you 17282. "Prayer" gets 488864.
Sorry to get polemical in an obituary thread.
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posted by feets at 6:00 PM on December 7, 2012 [19 favorites]
Sorry to get polemical in an obituary thread.
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posted by feets at 6:00 PM on December 7, 2012 [19 favorites]
What a nightmare. I wish when we heard about "overhauling entitlements" it referred to making it easier for people to get all the help they needed when they needed it and not the opposite.
Also I don't understand why disability decisions aren't made by doctors. I thought they were. I can't believe she actually had to go in front of a judge and say "I have to masturbate a lot". There had to have been a better way to frame that. Why was there no doctor explaining the toll this had taken on her life, and her suicide attempts?
posted by bleep at 6:02 PM on December 7, 2012 [10 favorites]
Also I don't understand why disability decisions aren't made by doctors. I thought they were. I can't believe she actually had to go in front of a judge and say "I have to masturbate a lot". There had to have been a better way to frame that. Why was there no doctor explaining the toll this had taken on her life, and her suicide attempts?
posted by bleep at 6:02 PM on December 7, 2012 [10 favorites]
Tzikeh, I lifted that note from one of the links in the post without really thinking about it. Was vaguely associating the DSM with general diagnosis of neurological disorders, but should not have. Did not intend to imply the condition was a mental disorder. You're quite right, it's not.
posted by zarq at 6:08 PM on December 7, 2012 [2 favorites]
posted by zarq at 6:08 PM on December 7, 2012 [2 favorites]
A paper just came out in the Journal of Sexual Medicine saying that PGAD might be a side effect of small cysts in the sacral spine.
She had already educated herself on this possibility. That's why she was asking local businesses on craigslist (where the journalist discovered her) if they would donate towards the MRI she couldn't afford and didn't have insurance for.
posted by availablelight at 6:20 PM on December 7, 2012 [2 favorites]
She had already educated herself on this possibility. That's why she was asking local businesses on craigslist (where the journalist discovered her) if they would donate towards the MRI she couldn't afford and didn't have insurance for.
posted by availablelight at 6:20 PM on December 7, 2012 [2 favorites]
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posted by Halloween Jack at 6:27 PM on December 7, 2012
posted by Halloween Jack at 6:27 PM on December 7, 2012
Sadly, the source of most policy is dead bodies. There's a casualty now, and so we've heard of it.
posted by effugas at 7:17 PM on December 7, 2012 [1 favorite]
posted by effugas at 7:17 PM on December 7, 2012 [1 favorite]
If you want to really bathe in your outrage about this consider: this was caused because grown adults still giggle and blush about peepees and jayjays.
posted by basicchannel at 7:18 PM on December 7, 2012 [14 favorites]
posted by basicchannel at 7:18 PM on December 7, 2012 [14 favorites]
If you want to really bathe in your outrage about this consider: this was caused because grown adults still giggle and blush about peepees and jayjays.
And also because most men -- including many men who make important decisions that affect women and their jayjays -- haven't the slightest goddamn clue about how jayjays work, but certainly never pause to consider that when opining or making rules about them.
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posted by lord_wolf at 7:29 PM on December 7, 2012 [23 favorites]
And also because most men -- including many men who make important decisions that affect women and their jayjays -- haven't the slightest goddamn clue about how jayjays work, but certainly never pause to consider that when opining or making rules about them.
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posted by lord_wolf at 7:29 PM on December 7, 2012 [23 favorites]
This woman's tragic tale, its' end anyway, seems most likely the result of reading of her own account.
We will never know for sure, but i empathize with anyone trying to get understanding for something they struggle with internally. I know very personally that often while you're trying to describe something you deal with, the shame and discomfort in even telling it and coping with the reactions afterwards.
I'm ashamed i even read this. Goodnight.
posted by phylum sinter at 8:14 PM on December 7, 2012 [3 favorites]
We will never know for sure, but i empathize with anyone trying to get understanding for something they struggle with internally. I know very personally that often while you're trying to describe something you deal with, the shame and discomfort in even telling it and coping with the reactions afterwards.
I'm ashamed i even read this. Goodnight.
posted by phylum sinter at 8:14 PM on December 7, 2012 [3 favorites]
Linked from the Wikipedia article, a 2004 British documentary called A Hundred Orgasms A Day: direct .flv link, flash player page, description
posted by XMLicious at 9:01 PM on December 7, 2012
posted by XMLicious at 9:01 PM on December 7, 2012
Wow. So sad. Poor woman- she discusses her issue with such honesty in this video. And she was so beautiful, what a waste suicide always is.
I am very disappointed by the glib "agony and the ecstasy" title of this story. It should just be called "the way our society failed to be democratic enough to offer healthcare to a sick person," but I guess that's too long and there are too many of these stories for that to be specific.
posted by kettleoffish at 9:23 PM on December 7, 2012 [5 favorites]
I am very disappointed by the glib "agony and the ecstasy" title of this story. It should just be called "the way our society failed to be democratic enough to offer healthcare to a sick person," but I guess that's too long and there are too many of these stories for that to be specific.
posted by kettleoffish at 9:23 PM on December 7, 2012 [5 favorites]
the neutrotransmitter NO whose reuptake is inhibited by drugs like Viagra does not seem to have any other purpose.
NO is an intrinsic mediator of parasympathetic vasodilation throughout the body. In fact, sildenafil (Viagra) was originally intended to be an antihypertensive drug. It just happened to have a very specific side effect.
Anticholinergics could conceivably have some utility in treating this condition. They come with a great deal of troublesome side effects, but if the alternative is severe enough to drive one to suicide, I'd say that puts the risk/benefit profile solidly in their favor.
posted by dephlogisticated at 10:28 PM on December 7, 2012 [1 favorite]
NO is an intrinsic mediator of parasympathetic vasodilation throughout the body. In fact, sildenafil (Viagra) was originally intended to be an antihypertensive drug. It just happened to have a very specific side effect.
Anticholinergics could conceivably have some utility in treating this condition. They come with a great deal of troublesome side effects, but if the alternative is severe enough to drive one to suicide, I'd say that puts the risk/benefit profile solidly in their favor.
posted by dephlogisticated at 10:28 PM on December 7, 2012 [1 favorite]
It's miserable to suffer through any condition that leaves you suffering but where medical professionals don't know what's wrong or how to fix it, but at least most of those don't come with sniggering judges and doctors. This sounds way worse.
Rest peacefully, Gretchen.
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posted by rollbiz at 12:14 AM on December 8, 2012 [2 favorites]
Rest peacefully, Gretchen.
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posted by rollbiz at 12:14 AM on December 8, 2012 [2 favorites]
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posted by spinifex23 at 12:41 AM on December 8, 2012
posted by spinifex23 at 12:41 AM on December 8, 2012
Dephlogisticated: but don't anticholinergics also have a tendency to induce delirium/psychosis? That's not really something you want to experiment with on suicidal patients.
Anyway, what a sad story.
posted by simen at 2:46 AM on December 8, 2012
Anyway, what a sad story.
posted by simen at 2:46 AM on December 8, 2012
Having been through a disability hearing I can assure you that you go in assumed to be a money-grubbing fraud and it's up to you to prove otherwise. While I realize there is plenty of fraud, there needs to be some recognition that not everyone is there for the cash, that they have real problems and don't deserve being treated as liars.
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posted by tommasz at 4:41 AM on December 8, 2012 [3 favorites]
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posted by tommasz at 4:41 AM on December 8, 2012 [3 favorites]
When I was working for a community mental health agency, I counseled a gentleman who had lost his arm while working as a logger. Though the man had worked for 30 years and lost his arm on the job, he was denied disability several times (!) and had to get a lawyer to try to get it to move forward. The amount of money wasted on the churn of hearing after hearing and paying lawyers who specialize in these cases is reprehensible. I swear if we gave the cases just a cursory once-over and gave most people benefits on the first go-around, the system would save money, fraud be damned. And we would certainly save immeasurably in human pain and suffering.
Rest in peace, dear lady.
posted by thebrokedown at 5:15 AM on December 8, 2012 [8 favorites]
Rest in peace, dear lady.
posted by thebrokedown at 5:15 AM on December 8, 2012 [8 favorites]
One of the bitter ironies here is that the judge effectively made sure she could never return to work when he denied her claim. Access to Medicare or Medicaid via SSI/SSDI may haven given her a shot at treatment that could make her employable. Motherfucker.
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posted by space_cookie at 7:00 AM on December 8, 2012 [1 favorite]
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posted by space_cookie at 7:00 AM on December 8, 2012 [1 favorite]
but don't anticholinergics also have a tendency to induce delirium/psychosis?
Delirium with anticholinergics is usually only a problem in the elderly and in overdose situations. In fact, a lot of psych drugs (e.g., antipsychotics, TCAs) have off-target anticholinergic effects. I'd want to try something that's relatively M3 selective, like darifenacin, to limit side effects. No idea if it would work, though.
Another thought would be to try a topical decongestant, like oxymetazoline, compounded into an ointment. But you might run into tolerance/rebound issues, which would limit it to only occasional use.
It's unfortunate, but when it comes to rare conditions with no approved treatments, all you can is throw stuff at the wall and see what sticks.
posted by dephlogisticated at 2:20 PM on December 8, 2012
Delirium with anticholinergics is usually only a problem in the elderly and in overdose situations. In fact, a lot of psych drugs (e.g., antipsychotics, TCAs) have off-target anticholinergic effects. I'd want to try something that's relatively M3 selective, like darifenacin, to limit side effects. No idea if it would work, though.
Another thought would be to try a topical decongestant, like oxymetazoline, compounded into an ointment. But you might run into tolerance/rebound issues, which would limit it to only occasional use.
It's unfortunate, but when it comes to rare conditions with no approved treatments, all you can is throw stuff at the wall and see what sticks.
posted by dephlogisticated at 2:20 PM on December 8, 2012
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posted by mosk at 3:16 PM on December 7, 2012