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Persistent genital arousal disorder brings woman agony, not ecstasy

SPRING HILL — On the edge of a well-to-do neighborhood, where lofty stucco homes come with pool cages and smooth lawns, a woman awoke in a faded white ranch house curtained by overgrown oaks.

Gretchen Molannen, 39, donned white capris, a loose fuchsia top, sneakers. She brushed her teeth, sat gingerly on the edge of her couch and tried to ignore the tingling pressure between her legs.

The sensation was akin to sexual arousal. But this was far from the pleasurable feeling that people associate with sex. It was not triggered by love, or lust for the boyfriend who would soon arrive to drive her to an appointment. It was unbidden and unwelcome. Over the previous 16 years it had turned her from an outgoing young woman with an active romantic life into a hermit, forced to masturbate for hours for just a few minutes of relief.

This is the point in Gretchen Molannen's story that invariably makes people snicker, or wince, or make jokes like: "I wish my wife had that." That one came from a doctor.

Our bodies betray us in so many ways, as anyone who has endured a chronic illness knows. One day you're a mom and a lawyer and the next you're lying in a dark room, rigid with a migraine. But no one laughs at you for that. Rupture a disc and you'll get sympathy and paid time off work. Most people with cancer aren't ashamed to tell their parents they need chemotherapy.

 

• • •

 

On this morning, Gretchen knew that she would have to find the words to tell her story in public. She needed to convince a judge that this condition, among its many disastrous consequences, had destroyed her ability to work.

She had zero income. Her parents were dead (they'd gone to their graves thinking she was a lazy failure). To save her from losing the house she inherited, a boyfriend had paid her tax bills.

Desperate though she was, Gretchen still found it hard to imagine how she would tell a man in a black robe about her days, cocooned inside her bedroom with hunched shoulders and a vibrator. Would he snicker too?

Gretchen closed her eyes and prayed. She prayed that the judge would believe her. And she prayed that for the few minutes it would take to make her case, her body would just leave her be.

 

• • •

 

"I had such a different life before this thing, this beast, took over," Gretchen said.

She was sitting on a dusty black couch in the middle of her cluttered living room. Beanie Babies and Frasier videos and bottles of nail polish crowded the coffee table.

It is the same house she lived in when she was 12, when her parents moved to Spring Hill from Wisconsin. She had grown up taking piano lessons and singing in the church choir. She was a high school honor student. She earned a bachelor's degree in Spanish at the University of South Florida and spoke French and German, too.

In November 1996 she was 23 and thinking about a career as a translator. She had a new boyfriend. He was older than she was and her parents disapproved. But she loved him.

Then one day, almost as if a switch had been thrown, she felt sexually aroused. And it didn't stop. It was there when she drove a car, at dinner with her parents, when she shopped for cleaning supplies.

"I was terrified," she said. "I couldn't get unaroused. I didn't know what to do."

There had been no accident, no surgery, no life-changing event to explain it. She wondered if this was some sort of female problem like menopause. Something her mother had neglected to tell her.

As a child she had been molested for years by a neighbor. He had called it her punishment for being bad. Did that have anything to do with it?

The only relief she could find was masturbation, something she abhorred. Gretchen had been raised a Lutheran and she did not believe that God would want her to do this. But to get any relief, she needed to do it almost constantly.

It took months, but she got the courage finally to tell a doctor. "Usually it's the opposite problem," Gretchen said the doctor, a woman, told her.

The doctor recommended ice packs, cold compresses, a milk bath — because it might be soothing — and abstinence. Gretchen ignored the throbbing for eight weeks, but it didn't go away.

 

• • •

 

She struggled to keep even the most menial jobs. She sold sterling silver jewelry, took messages for a medical answering service, monitored alarms for an alarm company, answered phones at a tanning salon. But at each job, she was spending so much time alone in the bathroom that it affected her performance, and even when her bosses didn't complain she convinced herself everyone knew and she couldn't live with the embarrassment. By 1999, she'd given up on working.

Gretchen no longer wanted to have sex. Orgasms had become work. And even mild physical affection just made the symptoms worse.

Though she avoided consummating her relationships, she still wanted to be attractive to men. So she turned to plastic surgery, something she could control.

Gretchen is petite, about 5 feet 2 with green eyes and medium-length brown hair cut into bangs. She decided her nose was too big and her breasts too small, so she got a nose job and size D breast implants, all paid for by a boyfriend.

She didn't get outside the house often, but she made the most of the opportunities that presented themselves. She met one man after he called her number by accident. She met another man when she was buying cold medicine. A third responded to her ad on Craigslist. Seeking someone into trench coats, rainy nights and romance was the headline.

She was careful to explain her situation on the first date. No use leading them on. But inevitably, they would pressure her and the relationships would fail.

Boyfriend No. 1: "His needs were building up."

Boyfriend No. 2: "He ended up begging me for a year."

Boyfriend No. 3: "He didn't understand. I'd take care of it while he was sleeping."

Gretchen has sex with her current boyfriend about four times a year. "Even though it will lead to hours of hell afterward I still want to try to have some intimacy and warmth there," she said.

Without telling her family the real reason, Gretchen went to a urologist, a gynecologist, a gastroenterologist, a neurologist, a reproductive endocrinologist, a psychiatrist. She underwent diagnostic procedures involving tubes and cameras. She tried hypnotherapy and prescription drugs.

She went online for answers, but her research kept pointing to sex addiction — which was not her problem.

Over time the repetitive motions took a toll on her body. She developed interstitial cystitis, an inflammation of the bladder wall, and urethritis, an inflammation of the urethra. One doctor said the pain in her wrists and hands was carpal tunnel syndrome. Another said she had obsessive compulsive disorder.

She experienced angry outbursts and thoughts of suicide. Through all this, her parents, who had had such high hopes for her career, couldn't understand why she had never moved out of the house.

Then, in 2007, more than a decade after her ordeal had begun, she happened to be watching a 20/20 episode with her mother. On the TV, a woman with wavy red hair, about Gretchen's age, was speaking.

"I was masturbating in the morning, in the afternoon, and at night," said Heather Dearmon of South Carolina. "I would be crying because nobody wants to do that all day long."

Gretchen watched her mother. On her mother's face, Gretchen saw curiosity, not derision. She wanted desperately to explain that this was why her life had derailed. But she couldn't say it out loud.

The experts on the show could. They even had a name for it.

 

• • •

 

Persistent genital arousal disorder was first identified in 2001 by Sandra Leiblum, a noted sex therapist and professor of psychiatry at the Robert Wood Johnson Medical School in New Jersey.

In the Journal of Sex and Marriage Therapy, Leiblum described women of all ages who were "physically but not psychologically aroused."

There was the 36-year-old mother, with three kids under 6, who had to stimulate herself to orgasm in sets of six. The 81-year-old whose arousal had begun six years earlier, following a hysterectomy; she had exhausted her husband, who had a weak heart.

Some had developed the syndrome after taking antidepressants. One woman said it started after a bad fall. Others traced it to childbirth or the onset of menopause.

"When your every waking hour feels as though you are in the middle of sexual intercourse that never comes to a satisfying end, it is a very terrible feeling," a 53-year-old woman wrote.

The rare syndrome, which doctors estimate affects thousands of women, seems to violate one of the basic elements of human sexuality: our ability to control our sexual lives. In essence, it makes desire irrelevant, stripping away all psychological pleasure from sex and leaving only the mechanics of arousal.

No single area of the brain is responsible for sexual response, and much is still unknown about the process. But when the vagina or the clitoris is stimulated (the clitoris alone has 8,000 nerve endings), sensory impulses travel up the spinal cord to the sensory cortex, a thin band of nerve cells that straddles the brain like a set of earmuffs. The brain interprets the sensations and issues new commands, producing increased heart rate, more blood flow, a lubricated vagina.

Could a glitch in this loop generate the symptoms?

"It's most likely some kind of nerve dysfunction, but we don't know why," said Leah Millheiser, director of Female Sexual Medicine at Stanford University Medical Center in California. She has a dozen patients with the disorder.

Gretchen now knew she wasn't a freak. But that didn't make living with it any easier.

 

• • •

 

On Aug. 15, Gretchen followed her disability advocate into a long, narrow hearing room at the courthouse in St. Petersburg.

Administrative law Judge B.T. Amos, a white-haired veteran of the court system known for being no-nonsense, sat behind his raised pedestal bench at one end.

Before the hearing, Gretchen asked her advocate, Raquel Asuncion, if she could use the word "self-injury" for "masturbation" — she had found that even saying the word triggered a response. The judge said no, Asuncion told her.

Gretchen's low voice quavered as she answered Asuncion's questions.

"First, I'd like to apologize for the embarrassing nature that you have to listen to," Gretchen began, looking at Amos. He didn't meet her gaze, staring instead at his computer.

"I call it the brain scream to try to describe to doctors. That my brain tells me that I have to compulsively sexually stimulate myself . . . and I have a certain number of minimum climaxes I must reach before my brain will calm down."

"How many?" Asuncion asked.

"A minimum of eight."

The judge looked at his computer.

The questions went back and forth in this matter-of-fact way and then, after a half an hour, Asuncion said she was done.

"Thank you, ma'am," the judge said.

 

• • •

 

One day at home, a few weeks after her hearing, Gretchen described her condition:

The arousal won't let up. It will not subside. It will not relent. One O-R-G will lead you directly into the horrible intense urge, like you're already next to having another one. So you just have to keep going. I mean, on my worst night I had 50 in a row. I can't even stop to get a drink of water. And you're in so much pain. You're soaking in sweat. Every inch of your body hurts. Your heart is pounding so hard . . .

"You have to ignore it, Gretchen. YOU DON'T HAVE A CHOICE. STOP NOW. Just let your body calm down. Many times, I've tried that. I'd be as far as in the bathroom, going in for my reward shower. I'm done. Now it's time to clean up and relax. And I'd look at myself in the mirror and there it is again. And I'd throw myself on the floor and cry.

"Men don't understand it. They don't care. They think it's hot . . . When I describe it to men, I tell them, 'Imagine having an erection that does not go down, that feeling of just before it comes out, all day, all night, no matter how many times, no matter how much you've destroyed the skin on your penis.'

"It won't let you calm down. You can't go to sleep. You think you are going to have a heart attack. You think you are going to die."

 

• • •

 

Doctors don't agree on the cause of the disorder, and that has left many of them uncertain about treatments.

Research by behavioral neuroscientist Barry Komisaruk of Rutgers University in New Jersey indicates that for some women it may be caused by something called a Tarlov cyst, a tiny fluid-filled lump that attaches to genital sensory nerves where they enter the spine. Cutting the cyst away from the nerve risks causing incontinence, he said, but he wonders if deflating the cyst might work.

In June, Dr. Irwin Goldstein, director of sexual medicine at Alvarado Hospital in San Diego, who treats 200 women with the disorder, was part of a team that implanted a kind of pacemaker in the buttocks of a retired high school English teacher.

The device was attached to one of her genital sensory nerves. If she wanted the arousal to stop, she turned the electrical impulses on with a transmitter. If she wanted to have sex with her husband, she could turn it off temporarily. It worked. It also cost $68,000, most of which she paid for by cashing out part of her retirement plan.

Dearmon, the South Carolina mom Gretchen saw on 20/20, said she managed her condition for years by taking the antidepressant Paxil.

"Then the Paxil quit working for me," she said. "I've had two different nerve blocks done."

Nothing had worked until recently when she had Botox injected into her clitoris, which, she said, has made the condition "more manageable."

One woman went further. She chose to have her clitoris removed — and discovered it made no difference.

Gretchen has been prescribed antidepressants and Ambien, a sleeping aid, which she has at times paid for with Medicaid but most often with private donations. But her lack of medical insurance makes treatment for the condition that has destroyed her life financially impossible.

One day last March, Gretchen duct-taped the pool hose to the muffler of her car. She turned on the ignition and sat there while a Three's Company episode played on her DVD player. The carbon monoxide gave her a pounding headache. She spilled out of the car.

Three weeks later, she put on a bathing suit and went in the bathroom and sliced open her wrist.

"I don't really want to do it," she said recently. "But it helps me calm down. It helps me to think about the possibilities to stop the suffering."

 

• • •

 

In early September, Gretchen walked down her driveway to her mailbox. In it, she found the judge's decision.

Although the claimant has severe impairments, they do not meet the criteria of any listed impairments . . .

The documents also referred to her mentally disabled brother who was no longer in her care. At one point, because she had no other options, her brother's Social Security disability check had supported both of them. The judge said Gretchen was seeking disability for "pecuniary gain."

Gretchen sat down in the driveway and cried.

 

• • •

 

Gretchen's lifeline right now is her boyfriend, the one she met on Craigslist. They have broken up several times. He said that he loves her, but she worries that she can't count on him to pay her bills forever. She owes property taxes on her house this month and she doesn't have the money.

Gretchen has appealed the judge's decision, though her attorneys have dropped the case. She has sent emails to businesses asking for a free MRI to determine if she has a Tarlov cyst and a nerve scan to see if there is damage.

"I know that God wants more out of my life than having me testing out suicide methods, constantly crying and abusing myself," she said.

A few weeks ago, Gretchen pulled out a helium tank, strapped a plastic bag over her head and gulped in the gas. For a few moments, until she ripped off the leaky bag in frustration, Gretchen felt like she had some control over her body.

Leonora LaPeter Anton can be reached at lapeter@tampabay.com or (727) 893-8640. Times researcher Natalie Watson contributed to this report.

Persistent genital arousal disorder brings woman agony, not ecstasy 11/30/12 [Last modified: Monday, April 15, 2013 4:55pm]

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