WELCOME

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

Symptoms:

• 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).

Magnesium Supplementation for Improved Neural Activity

Based on the article below, I contacted my internist and am trying it out. I am taking 1,500mg/day of Magnesium Gluconate. Magnesium comes in many different chemical forms, each on has different dosing requirements. Although I am generally into self-help, THIS IS NOT SOMETHING TO TRY ON YOUR OWN WITHOUT TALKING TO YOUR DOCTOR. My dosage at 1,500mg/day is quite high and I will take a test 3 weeks from now to test my magnesium levels. I figured it is worth a try as it can improve muscle relaxation and decrease nerve pain.

Magnesium for Pain Relief

Clinical experience, as well as research in nerve pain conditions such as pancreatic cancer, has shown that magnesium can be an effective treatment for pain. Although it is clear why magnesium can decrease muscle pain (it makes muscles relax), why it would help nerve pain was less clear. A new study on rats to be printed in The Journal of Physiology confirms our clinical experience that magnesium decreases nerve pain — while also pointing to how it works.

A major mechanism of pain is the excessive stimulation of a brain chemical called “NMDA.” The few medications that help decrease and balance this pain-carrying neurotransmitter have the downside of causing significant side effects. Magnesium seems to settle down NMDA without the toxicity. The upside of magnesium is that is very inexpensive (pennies a dose). The downside is that it hasn’t yet made it through the FDA approval process.

The good news is that you don't have to wait for the FDA. Magnesium can be found in supplement form at most health food stores.  And magnesium oxide, though not as well absorbed, can also be found for about a nickel per 500 mg tablet.

For an especially powerful effect, the magnesium can be used intravenously, and is an important tool used by most holistic physicians (including those at the Fibromyalgia and Fatigue Centers). Many holistic physicians use IV magnesium to eliminate an acute migraine headache. It has even been shown to ease the incredibly severe nerve pain that can sometimes be seen in pancreatic cancer. It is also very helpful for settling down fibromyalgia pain, which has a muscle and nerve component.

The authors of the study suggest that magnesium deficiency can be a major amplifier of pain. Because of food processing, most people are magnesium deficient.  If you have pain, taking magnesium each day can start to decrease these deficiencies as well as the pain, after just several weeks — while also leaving you feeling more energetic. (If you have kidney problems, do not use without your physician's OK.)

Vestibular Pain and the Pudendal Nerve

The pudendal nerve enervates the genitals and if it is compressed, it can create genital pain. This is an excellent video that does a better job explaining the location and function of the nerve than other media http://www.youtube.com/watch?v=nfZCYSeWbcE by becool19571, a pudendal nerve surgeons.

This was presented at a conference that discussed related topics:
http://webcasts.prous.com/ICSIUGA2010/html/1-en/template.aspx?section=7&p=7,13067#