On Saturday Gretchen Molannen, 39, was found dead in her home of a suicide. It was not the first time she had attempted suicide. She had tried before, at least three times - to suffocate herself, slit her wrists, and to give herself carbon monoxide poisoning.
Molannen's suicide came just a day after the Tampa Bay Times wrote a feature about her and her rare illness. Called persistent genital arousal disorder, a name coined in 2001 by Sandra Leiblum from the Robert Wood Johnson Medical Center in New Jersey, Molannen said that she was in a near constant state of physical but not psychological arousal for the past 16 years. The only way that she was able to relieve herself temporarily was through masturbation - but the condition meant that she needed to do so for hours. In court, she said that she needed to bring herself to orgasm a minimum of eight times a day. At her worst, she masturbated 50 times a day.
Sexual arousal is not controlled by any one portion of the brain, which is part of the reason persistent genital arousal disorder is so difficult to treat. It is also not yet completely understood. What scientists do know is that, in women, when the clitoris or vagina is stimulated, it sends signals up the spinal cord to the sensory cortex, which produces increased blood flow and heart rate, among other symptoms. Researchers believe that the condition may be caused by a glitch in this system, though there is no consensus.
She described the condition as "this beast" to reporters. It left her unable to work. Once she'd had a promising future, hoping to be a translator after graduating from the University of South Florida with a degree in Spanish. She gave up on the idea of having a job in 1999.
The condition meant that she never wanted to have sex due to severe pain, and the constant repetitive motions made their own impact on her body. She was diagnosed with interstitial cystitis, or bladder wall inflammation; and urethritis, urethra inflammation. One doctor said that the condition had caused carpal tunnel syndrome in her hands; another said that she had obsessive compulsive disorder.
Molannen searched for a cure. She underwent endless diagnostic procedures with their tubes and cameras. She tried hypnotherapy and pills. Nothing worked and, even it had, Molannen had no income. An effort to get the state to recognize her disability was unsuccessful; a judge wrote that Molannen was only concerned about the money.
Just as doctors do not agree on a cause for the condition, so too do they not agree on treatment. Barry Komisaruk from Rutgers University in New Jersey believes that the problem for some women may lie in a Tarlov cyst, a fluid-filled lump that attaches to the spine where it meets with the genital sensory nerves.
Another doctor, Irwin Goldstein from the Alvarado Medical Center in California placed a pacemaker in one woman that she could turn off and on to control the arousal. She says that it worked - but it cost $68,000, well out of reach for Molannen.
Right before her suicide, the Tampa Bay Times sent Molannen a copy of the article for final edits. She wrote:
"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."