Suicidal thoughts ... Most women with PGAD have at one time or another considered suicide.
The devastating symptoms and debilitating effects on normal daily functioning... No treatment available, nor any prospect of
adequate treatment in the near future!! Ignorance, rejection and misunderstanding... A disease appealing to everybody's imagination and often exposed to public ridicule by the media. In particular Internet and even ridiculed by family
Not taken seriously by (company) doctors, medical specialists, health insurance, social security etc.... with dramatic consequences. Not formally recognized by the medical community (World Health Organization).
Be labeled with a mental disorder and be treated as such.
Desperation, isolation and hopelessness ...
How 'lonely' can that be?! How much 'loneliness' can one bear...
Suicide as a solution to end the pain. For two of my fellow sufferers it was the only way out...
August 16, 2012: My dear friend Nicole Baas took her own life...
After struggling with PGAD for more than 30 years, she told me she was planning to commit suicide. She was very determined. We were very close and always had deep and long conversations.
I have not been able to prevent her from ending her life. Nicole was only 51 years young....
-Rest in peace my dear friend-
December 1, 2012: Gretchen Molannen, 39 years old, was found dead in her home...
'Woman featured in Times story about sexual disorder commits suicide'
Source: 'Tampa Bay Times'
A woman who was featured in a Tampa Bay Times story that dealt with a rare sexual disorder was found dead of suicide late Saturday at her home in Spring Hill, according to the Hernando County Sheriff's Office.
Sheriff's officials did not provide details about how or when Gretchen Molannen died, but she was last seen alive Thursday at 11:30 p.m. Records show deputies responded to a suicide call about midnight Saturday night.
The Times received emails from two of her friends confirming her death and lamenting that she wasn't able to get the help she needed.
Molannen, 39, suffered from persistent genital arousal disorder, a debilitating condition marked by continuous sexual arousal. Women who have the disorder are physically but not psychologically aroused.
Many must masturbate for hours for just a few minutes of relief. Some doctors believe the condition is caused by a nerve malfunction.
Molannen struggled with the disorder for 16 years. For the first 10 years, she had no idea what she had and suffered in silence. She tried to work, but the condition affected her job performance and she was unable to keep
steady employment after 1999. She lived in Spring Hill with her parents ó both now dead ó and never told them what she was going through. In 2007, she saw a woman talk about the condition on the TV program 20/20 and finally
realized what she had.
Molannen sought help from numerous medical professionals, but many had never heard of the condition. She couldn't afford the tests or treatments that have worked for some sufferers.
She said the condition was so debilitating that she attempted suicide at least three times during the past year.
"I know that God wants more out of my life than having me testing out suicide methods, constantly crying and abusing myself," she said in the story that was published on Tampabay.com on Friday and in the Times' Floridian
magazine on Sunday.
The Times found Molannen on Craigslist in early 2012; she was seeking help from medical professionals. She had no income and had filed for Social Security disability benefits. Her request had been rejected.
She wanted someone to give her a free MRI so she could prove her condition to a judge.
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."
After publication, the Times received several offers to help Molannen, from both legal and medical professionals. Two women called, saying they had a similar problem and hoped to talk to Molannen about it.
The story was also shared on a support group for women with persistent genital arousal disorder and many of the women responded. (For more information on the support group go to www.psas-support.com.)
"Wow, you are awesome, Gretchen," a woman named Jill wrote. "You have suffered so, may God bless you for sharing your story that was difficult to read let alone live."
Times staff writer Tony Marrero contributed to this report. Leonora LaPeter Anton can be reached at firstname.lastname@example.org or (727) 893-8640 .
If you need help
If you are considering suicide, call 911 or 211 to reach the nearest crisis center or toll-free 1-800-273-8255 to reach the National Suicide Prevention Lifeline.