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."


Anatomy of the Clitoris

Notice that even if you can't take direct clitoral touch, you can still get clitoral stimulation because the clitoris extends quite a lot on each side, located between the labia majora and minora.

A fun little video that's a drawing. Watch first to get oriented before...
https://www.youtube.com/watch?v=YhoSUoZ_uJ0

A cadaver video that shows the same area (it's not super-gross given it is a cadaver):
https://www.youtube.com/watch?v=h5Y7do2z-Dw



I Use This To Organize My Pills: A Programmable Medication Dispenser





This "spaceship" is how I organize my meds. It reminds when to take them with a beep that goes off at the times I program. The pills disk rotates so that it brings only the meds to take during one dose into the open slot. I take a lot of pills and I used to mis-medicate. I got this and am much more consistent. It is easy to program. It accommodates one to many doses per day. You can get it at epill.com and it comes in a variety of sizes. It is FANTASTIC.

Update November 26, 2015
After 9 years of good use, some of the plastic has broken and I am about to replace it. I got it originally as a Christmas gift from Dad. Now I know how much it cost: $385. Wow. He did a lot of research and concluded this to be the best. There are other machines that look like this that cost $70. I don't know about their durability. This one has done me well.

The company has now come out with a newer "Plus" version. The above model is known as the "XL" and is still sold. I am trying to figure out which to buy. 

Pain is a Loop

Just a short thought that I knew from books and have then been able to demonstrate in my own life: pain is a loop. Meaning, if there are many areas that aren't working right in your body or mind that cause pain, reducing one area may help the other areas improve. Easier said than done, right? But this may be something you want to "inventory" for yourself: "So, if I can't get the vestibulitis under control, is there another area that I can address?" Examples are:


  • Allergies
  • Hypothyroidism
  • Mood problems (in my case, Bipolare 2 disorder)
  • Nerve problems (see posts on nerve injections)
  • Bladder problems
  • Uterine problems
  • Constipation (see post on my technique)
  • Fibromyalgia
  • Stress
  • Unhappiness
  • PTSD
  • Mechanical problems with your body
  • Fear of sex


For me, the most surprising thing that has helped the vestibulitis is staying on a diet that avoids my food allergies. One food I am sadly allergic to is chocolate. Chocolate cake will make the burning more intense the next day. Has this cured the vestibulitis? No. But any action I can take is worth it. Interestingly, the allergist said that my allergies are low-level. But avoiding problem foods seems to avoid additional inflammation. UPDATE 7/1/2015: After one year not eating chocolate without significant improvement, I am eating it again.

I take Allegra (Costco sells it least expensively) twice a day. I am also on Singulair to help my asthma, but it looks like it also may push back on allergies in general. Other allergy pills and preventive measures are out there.

Biopsy of the Vestibule

For years no doctor would biopsy my vestibular skin saying it would only add to the trauma. Finally, I encountered a gynecologist who suggested it was appropriate. It is done in the doctor's office and consists of a lidocaine injection (the painful part) and then a 3mm "punch" that extracts a tiny amount of skin. One stitch that dissolves on its own. No pain afterwards. Easy peasy. The results came back as "minimally chronic inflammation." Unfortunately, inflammation is not well understood medically. I have added ibuprofen into the mix to see if that will help because it is an anti-inflammatory. I am also strictly following my allergy diet.

PTSD from Sexual Abuse

I have had people say to me that my vestibulitis is the result of past emotional trauma. In my case, sexual molestation as a child. I had dismissed this entirely because I know it is a true physical disorder. However, I am now looking into PTSD as a contributor.

When I was molested by a teacher in 4th grade, I had to sit on his lap many hours each day. In response, I contracted my pelvic muscles tightly to try to elevate myself off his lap and that may have begun a muscle pattern that I continue today. As I have mentioned in other posts, chronic muscle tightness can compress nerves and cut down on blood flow that keeps your vulva healthy.

I am reading "The Body Keeps The Score" which is excellent and focuses on the physical effects and the physical healing of Post Traumatic Stress Disorder. I am also considering doing EMDR - a therapy based in rapid eye movement to access and resolve trauma. I guess I am just posting this because after many years of dismissing this part of my history and saying that I was over it, I am now exploring the idea.