Comments and Personal Stories

A Woman's Story: PSAS

I have a condition called persistent sexual arousal syndrome (PSAS), a sexual dysfunction that manifests as sexual arousal that occurs apart from any of the physical or psychological stimuli that trigger normal arousal. As its name suggests, the feeling is, for many women including myself, unrelenting. It fluctuates only in degree of intensity. Orgasm not only does not relieve the feeling, it actually exacerbates the sensation: after only a few moments or minutes of relief following orgasm, the sensation returns.

PSAS has, at various times, and depending on its intensity or my situation, interfered with my work, my marriage and my psychological wellbeing. I was in health care, in a profession where errors are unacceptable and could have dire consequences. When I was confronted with PSAS, I needed to learn how to focus on my work while all the time being distracted by a sensation over which I had no control and that wouldn't go away. I would come home from work exhausted. I felt as if I were working two jobs: one was my real job, the other was suppressing acknowledgement of this physical sensation in order to get on with my real work. Even my exercise and leisure activities hung under the cloud of PSAS.

Because PSAS was made worse by orgasm, my interest in sex declined and my physical relationship with my husband suffered. To make matters worse, for a long time I could not even achieve orgasm despite the sensation of constantly feeling on the "edge". In depression, I began to pull away from my relationships with people, and at one point I told my husband that if I knew there were no possibility of getting better, I would consider suicide.

When the problem first occurred, in 2001, I had recently stopped taking an SSRI antidepressant. In my extensive search through the Internet at that time, I used every imaginable search term I could think of, but found nothing written that matched what I had. There was not even a name for it. In desperation, and at my husband's urging, I mustered the courage to talk with my gynecologist, being as careful as I could to describe to her exactly what I felt. She clearly had not heard of anything such as this, which I realized when she was dismissive of me, suggesting that, compared to her other patients, I was "lucky" to have this problem. This was one of the most devastating encounters I'd ever had with a doctor, and yet she topped this at my next visit when she suggested I should see a psychiatrist because the problem was all in my head. I found another gynecologist instead.

Not long after this disappointing episode, my husband called me at work one morning, telling me he had news that I wouldn't believe. There was an article in our local paper about other women with this problem, and there was a name for it. Hallelujah! Sometimes, the luck of time and place opens up doors. In this case, the door that opened up for me led to an online support group specifically for women with PSAS.

Upon discovering this support group, I went from thinking I was a freak of nature to becoming part of a small community of women who have what I have and have had similar experiences as mine. This was a revelation for me and helped me to begin to cope with PSAS. Furthermore, because I was exchanging information about my PSAS history and reading posts from other women with the problem, the language of PSAS became easier to use. I became able to talk to other family and friends about my condition, getting the support I needed to cope further with PSAS. Significantly, belonging to this online community emboldened me to speak to all my doctors, not just my gynecologist. Orgasm and clitoris were no longer four-letter words.

If ever again I feel rebuffed or belittled by a physician, I know I can depend on the PSAS board members to be empathetic. Every member of the board has had at least one unfortunate experience with a physician. Most had a similar experience in that their doctor couldn't be bothered to deal with or even acknowledge a problem he or she had never heard of. I, myself, felt that one or two doctors were embarrassed by my description of my symptoms of PSAS (I only wish they knew how I felt, having to describe it). When I gave one doctor the newspaper article to read, he focused on the sensational bits and didn't read the article all the way through, drawing conclusions about me that were unfounded. At the least, PSAS has certainly confounded all of the doctors I've told. Only one doctor, my "replacement" gynecologist, questioned her colleagues and learned that one of them had had a patient with a condition that could be described as PSAS. My personal care physician latched onto information published in a journal article about PSAS in order to verify that PSAS was a bona fide medical condition.

Since my PSAS seems to have arisen in conjunction with stopping a neuropsychiatric drug, the underlying problem for me, I thought, might be neurological, not physical or hormonal. In other words, the cause of PSAS could very well be in my head, as the first gynecologist suggested, but not the psychiatric problem she implied. I had learned that the onset of PSAS in a significant number of other women on the board was also coincidental with stopping an SSRI (a class of antidepressants). This further knowledge made me feel justified in thinking that there was a strong connection in my case. Because of this likelihood, I was not compelled to try some of the therapies that other women on the board had tried. I felt that the best approach for me was to work with a neurologist. I was further convinced of this upon talking with my friend's husband, a psychiatrist who is extremely knowledgeable about neuropsychiatric drugs and who was able to give me several treatment suggestions. Without the PSAS board and the input of an expert, I may not have come to this conclusion. My biggest frustration with the group is seeing how easy it is for some women, in their desperation, to be swayed by one person who thinks she has found the answer to PSAS. Nearly everyone will jump on the bandwagon if someone thinks she has the answer, and other voices get drowned out. For most of us, the underlying cause of PSAS is unknown. Despite this, there have been women who rushed right into undergoing a treatment as extreme as surgery or other invasive therapy, only to be disappointed because the treatment failed. This was compounded by some physicians who specialize in a particular procedure and who will make the same diagnosis of everyone who comes to see them, a diagnosis that they swear their treatment or procedure will help. This also sets the stage for treatment failure, because, clearly, not everyone with PSAS has the same cause. Much has been written in TWSHF about getting second opinions, especially for surgery or other invasive procedures.

As on all online support groups, there are times when arguments start and the fur begins to fly, or when members use the board to send personal communications back and forth and the posts become very chatty. On the other hand, much of the information I've gotten from the board has been invaluable and has helped me make a case for myself with my doctors. I've read about all the many therapies that have been offered to women with PSAS and have seen what has or hasn't worked. The links are posted on this site, including members' experiences, doctors' names, and suggested treatments for the various physiological or neurological problems thought to be at the root of PSAS. We have been fortunate to have had physicians log onto the group and give us further ideas and insights into the possible causes and treatments of PSAS. Finally, and perhaps most importantly, there is the real support one feels in a community of people with the same interest.

- Anonymous