Comments and Personal Stories

Persistent Sexual Arousal Syndrome: One Woman’s Experience

The name of the author is withheld by her request—TWSHF.

We probably all have had at least one experience of not being taken seriously by a physician. I find there is almost nothing more frustrating. Probably because of my numerous and unusual medical problems, I have had this happen many times with different doctors. I have had this experience with two serious diseases, one a bladder cancer, the other a brain tumor. At various times I have had to advocate for myself in order to be diagnosed or treated. Often, it has taken persistence, including screening many doctors until I finally found one doctor who would take my symptoms seriously. “It’s nothing,” coming from a doctor, is not always reassuring, especially when the doctor can’t tell you what “it” is.

But what about symptoms that are difficult to discuss? About two and one-half years ago I developed symptoms that embarrassed me to death to describe to anyone but my husband. It took all my courage to approach my gynecologist and tell her that I was constantly feeling sexually aroused (the actual words I used were, “I feel like I am constantly on the brink of having an orgasm”), and that sex didn’t make the feeling go away. The doctor’s response? "Half my patients would love to have what you have." What could I say to that? I felt belittled and left her office feeling a bit hopeless. The next time I saw this gynecologist, I brought up the same complaint. This time she told me that there was nothing she could do for me and that I needed to see a psychiatrist. At that point, I left her office feeling angry. Shortly thereafter, I found a new gynecologist.

When I first told my new gynecologist, who is my current gynecologist and who practices at a large teaching hospital, about these symptoms, I still had no medical vocabulary to use. I stumbled through a description of my symptoms but this time was met with a very different response. While this new gynecologist had never heard of the symptoms, she took me seriously right from the start. She suggested a month-long trial of an antidepressant that is sometimes given for nerve pain. Even though the symptoms aren't felt as pain, it seemed to me, a pharmacist, to be a reasonable approach. At least it gave both of us time to evaluate the situation and to see if something simple would help. This very positive experience with my gynecologist gave me courage to tell my neurologist, who also took me seriously.

Not long thereafter, I learned through an article in the newspaper that there was a name for my symptoms, Persistent Sexual Arousal Syndrome (PSAS). I was able go online and find more information about this, and copied it for my gynecologist and neurologist. I was even finally able to tell my primary care physician, a man, by first handing him the paper with a description of the symptoms. The first words out of his mouth were, “We need to set up a psychological evaluation for you,” but by then I knew enough to know that there were possible physical causes of this problem. When I told him this, suddenly he, too, took the problem seriously.

Why do so many doctors respond differently to problems outside their realm of their understanding than they respond to problems with which they are familiar? In each instance when I had an unusual complaint, all I wanted the physician to do was listen and then respond as he or she would respond to a patient with a familiar symptom or syndrome, that is, ask when the problem started, how often it occurred, what I've tried for relief, etc. When your problem is in your genitals (for instance), you don’t want to be told that it’s in your head!

For more information on PSAS, TWSHF recommends the following sites:

Persistent sexual arousal syndrome: a newly discovered pattern of female sexuality.
J Sex Marital Ther. 2001 Jul-Sep;27(4):365-80.

Leiblum SR, Nathan S
Persistent sexual arousal syndrome in women: a not uncommon but little recognized complaint
Sexual and Relationship Therapy. 2002 Vol. 17, No. 2: 191-198.

Leiblum SR
Arousal disorders in women: complaints and complexities
Medical Journal of Australia. 2003 Vol 178: 638-640.