PERSONAL EXPERIENCES OF WOMEN WITH PSAS

PSAS: A Personal Experience

"My case was complicated because I actually had PSAS plus hypogonadism. Despite a lifelong history of depression, giving me another antidepressant to try, and then another, just delayed the ultimate diagnosis and frustrated me even more because my symptoms were exacerbated by antidepressants. I finally threw away the last prescription the psychiatrist wrote and went off all psych meds. Depakote was recommended and it proved a good choice but a totally different idea than another antidepressant. I suffered from no real orgasms for fully two years, having been orgasmic all my 24 years of married life. I suffered from constant PSAS for over a year and I became so desperate I was ready to end my life, not from depression but just from an unwillingness to continue such a low quality existence. The symptoms were 24 hours, seven days a week, without any relief to speak of and no one had a clue. My wonderful husband tried his best and tried his best but it was never enough. My youngest son's last year of high school passed, and it should have been a wonderful year. I had to spend an obscene amount of time alone in my bedroom just trying to get some kind of relief. Thank God I had the fortitude to not want to ruin his graduation by killing myself and making things even worse. I am a professional and I had to go to work without much or any sleep for literally days on end. In the end, things are working out. It has been an absolute nightmare but it is ending."

Quality of life with PSAS

"Although the problem with priapism has been lessened by my recent embolization, it has returned and is still of enough magnitude and intensity to disrupt my life. It continues to rule my life and I schedule my work and personal life around my physical pain and discomfort. It is still difficult to concentrate, focus or achieve what I would like to both at work and at home. It has led to a renewed problem of depression and angry outbursts that is affecting my personal relationships. It interferes with my getting adequate sleep and I overeat or eat poor foods which causes me to gain excess weight. I avoid situations and people when I have the priapism rather than risk a disastrous encounter and tend to spend more time laying in bed watching TV which I don't really enjoy doing. It is also causing problems with pressure on my bladder at varying times and bowels during sexual relations. I have begun to contemplate suicide again because I cannot imagine living like this for the rest of my life and indeed cannot. I appreciate everything everyone has done or tried to do for me, but I need a permanent one hundred percent cessation of the priapism in order to have sufficient quality of life."

Symptoms of PSAS

"In 1999 I started having strong urges, pressure and the need for orgasm after surgery for bladder cancer and brain surgery. Orgasms started spontaneously and constantly without any stimulation. To this day I have throbbing orgasms and extreme pressure to relieve them all the time. I get relief after urinating and moving my bowels for a short time. Sitting is the worst position, sitting in a car is awful. We have tried Lidacaine, Neurontin and muscle relaxers, all to no avail. This has controlled my life for the past few years. I get so blue sometimes, I don't want to go out. Sitting in a restaurant with friends does not give me any pleasure because of the throbbing. I've spoken to all my physicians and no one has any help for me. I can cause an orgasm by the simple act of gently moving my leg up and down and that gives five minutes of relief."

Struggling with the symptoms of PSAS

"I was constantly feeling overwhelming sensations of sexual arousal, which were purely physical and not accompanied by romantic or sexual fantasies; basically the need to have repeated orgasms that was never relieved by normal orgasmic experience. I could have one after the other and within minutes feel like I never had one in the first place. There didn't seem to be any sufficient number of orgasms I could have to make the sensation go away. I was completely insatiable and it was DREADFUL!!! I'm on disability for chronic lyme disease and am not currently working, so I would spend day after day masturbating and showering and masturbating and showering. I was so uncomfortable I thought about jumping off the roof just to make it go away. I sobbed on an almost daily basis. I went on birth control pills that really helped the PSAS but gave me a cluster migraine that lasted 2 and a half months so I had to go off of them. A few weeks later the symptoms returned so I started using Synaral nasal spray that helped somewhat (but not enough) and really screwed up my orgasms. I stopped taking trazodone 2 days ago (which I had been taking for years for sleep), and the problem seems to be getting better, so maybe the trazodone was the main cause. I'm not entirely symptom free yet."