Welcome!
Welcome and Hello!
My name is Jeannie Allen aka Jean Lund as I am among other things a free-lance writer. I reside in Ventura, California and work in the film industry in Burbank. I founded this support group in November 2006 for women who suffer from Persistent Sexual Arousal Syndrome (PSAS) which is now known as PGAD or Persistent Genital Arousal Disorder.
PGAD is an unwanted, intrusive, non-sexual arousal of the clitoris. While male priapism has been known for many years, clitoral priapism has been largely ignored apparently because we are women! There is no known confirmed cause or cure to date. The origin could be physiological such as a neurotransmitter that has back-fired in the brain or it could be caused by holding extreme stress in the muscles of the low back, hip flexors and outer pelvic area. The muscle tightness then presses on a nerve, possibly the pudendal, causing a tingling sensation, similar to when ones arm or leg goes to sleep after pressure has been applied too long. Inflammation of these areas is also involved. The nerve tingles and runs to the clitoris building a crescendo much the same as during sexual intimacy and a need for release via orgasm. Once the release has been given, the crescendo begins again building pressure which can be painful since orgasms cannot be reached constantly while living a normal life (such as at work, school or around friends and family). And just to clarify; women are not having orgasms all day and night as has been exaggerated by the media. Most wait for privacy and hold out as long as they can until they feel like they are losing their minds from the distraction and feelings. Women have tried everything they can to get it to stop, including nerve medications, stop smoking cessations, anti-depressants, anxiety medications, ice packs, and even more desperate measures such as surgery on the pudendal nerve and electric shock treatment to the brain all to little or no avail. Many have thought of suicide because they feel they would be better off dead then living the rest of their life with this ongoing problem.
I founded the original support group on Yahoo groups in 2003 when there were only 5 known cases of women with PGAD. Shortly after, I was asked to do an interview for the Boston Globe and out of my own desperation to find help I said yes. Because of that interview the support group grew far beyond what I ever could have imagined as women discovered a name for what was happening with them. At first I was very surprised then quickly realized that this is not as “rare” of a condition as it has been labeled. Because women say they have never told anyone and have been quietly suffering, the reality is PGAD is a “silent epidemic.” The response to the interview created just enough fire in my soul to become the advocate for the disorder. I have continued my advocacy not only to offer a safe place for sufferers via online support groups but also to help educate doctors, nurses and all of the medical community so that we will no longer be dismissed with the notion that the condition “does not exist”.
Quite a bit of progress has been made over the years. Since 2003 we have drawn the attention of the media which has helped a great deal in spreading the word. We’ve been included on 20/20’s Medical Mysteries twice, Truth Be Told, the Trya Banks show, The Doctors, Discovery Health Channel as well as an International one hour documentary. Most recently I was asked to be a guest speaker at Fairfield University in Connecticut to a classroom of psychotherapists which was the most rewarding experience since I began my advocacy work. Numerous interviews have been given to magazines and newspapers through-out the world with the result of it reaching more women who still had no name for what they were living with. Now there is also an International support group based out of the Netherlands.
More and more doctors are becoming aware with some putting their thinking caps on trying to help by various treatments. But there is still much work to be done because there is still no known cause and no magic pill. While there has been a small research study done at Rutgers University under Dr. Barry Komisaruk, PhD which has proven the disorder is “not all in our heads” the real problem is that more grant research funding is desperately needed so the research can continue in the states and we continue to be turned down! There has been a two year research study in the Netherlands that has also confirmed PGAD is real and has some interesting results—enough that they will continue research.
My goal in creating the support groups was to give women a safe place to network with other women and the courage to speak out. It is my hope that this lends each member enough strength to take the discussion outside these walls to their spouses, significant others, family, close friends and to every doctor they see. I have also provided the tools needed by having information posted that can be printed and carried to doctors, and links to information on other web sites. I want women to hold their heads high and feel a sense of relief knowing that we have not done anything to cause this disorder. That we are not freaks of nature; that we deserve to have our normal lives back! And I want the medical community to take their head out from under the sand and help us achieve that goal as soon as possible.
Empower yourselves ladies!
Kindest Regards–
Jeannie
