Edit: I WAS CURED AFTER 22 YEARS! I had a vestibulectomy Dec. 2016. The recovery was easier for me than having sex ever was. It took about 5 weeks. I have included my recovery photos. Look for the blogpost "I'm Cured!" and "My Vestibulectomy".

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. My hope is that my obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."

Persistent Genital Arousal Syndrome

Persistent Genital Arousal Syndrome sounds awful to me and is the flipside of being in a state of lack of sexual arousal and aorgasmia that I associate with pelvic pain. But it, too, is associated with pelvic pain and pudendal neuropathy. Pudendalhope.info is a new resource to me that my mom found. The information below came from here and can be found in full (I only excerpted the symptoms) here: http://pudendalhope.info/sites/default/files/PGADNewsletterJune2013.pdf


• A constant feeling of being on the verge of orgasm, with our without genital engorgement.

• Spontaneous orgasms (including numerous spontaneous orgasms that may come in waves).

• Shocks that cause a feeling of painful mini-orgasms.

• Inability to sleep or concentrate on normal activities due to the constant feeling of arousal.

• Spontaneous arousal awakening the person from sleep, this may be associated with sexual or non-sexual dreams and awakening with painful orgasms.

• In women, a feeling of vaginal penetration.

• In women, a feeling of sexual arousal in the clitoris, labia, and vagina (in one or all of these areas) that may be accompanied by excessive vaginal wetness.

• Males may have spontaneous unpleasant and unwanted erections with ejaculation.

• The arousal is not relieved by one or more orgasms.

• The arousal may be accompanied by pain or itching or both.

• The arousal may be accompanied by a constant feeling of needing to urinate.

• The arousal may be increased by sitting or by stimuli that
would not normally be associated with sexual excitement
such as vibrations while riding in the car or from loud music.

• Sexual thoughts or non-sexual stimuli may cause a
feeling of electricity or buzzing along the course of
the pudendal nerve.

• Sexual feelings in other areas of the pelvis such as the
anal area, low back, groin, or thighs.

• Extreme sexual arousal feelings with engorgement
(feeling like you might explode).

• Throbbing or “sexual” toothache in genital area
(may just be on one side).

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