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."


Showing posts with label nerves. Show all posts
Showing posts with label nerves. Show all posts

Home Electrotherapy LOVE

I have been meaning to write about this for a long time. I love it! It sends a electrical buzz between the two electrodes, which you place along tight muscles or painful nerves. For tight muscles, it will flex and release them mildly and get them in a non-tonic state (I have written about tonic muscles in another post) so they start firing. For nerves, the buzz blocks the pain. The Omron model below is what I recommend. It costs $60 and includes the device and the electrode pads. Replacement electrode pads are $15. The pads get about 150 wears. Very worth it for the blocking or relieving of pain. I have had it for 3 years so the longevity is good.

Pudendal Nerve Decompression Surgery

I am going down to consult with Dr. Michael Hibner in Phoenix to have a vestibulectomy or a surgery to free the entrapment of my pudendal nerve. Turns out, a video of him performing the surgery is on youtube. Pudendal Nerve Decompression Surgery

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.

Imaging of the Pelvis and Nerves

UPDATE:
My imaging came back with a big surprise: my pudendal nerve is healthy, but my sciatic nerve (different from using the term "sciatica") is dysfunctional. I see this as a pretty great development because more doctors know and treat the sciatic nerve. The rest of my bones, ligaments, and muscles are in good shape (also great news). This was what the MRI from UCSF showed. The machine was called a Tessla 3 (as opposed to the less defined images from the standard Tessla 1.5)

If you read below, you'll see that when I wrote this post I was excited to see the new doctor at Stanford. The rest of the story is detailed in a blog called "Shame on You Dr. Hah". The title says it all.

ORIGINAL POST:
I saw Dr. Hah a pelvic pain specialist in the Stanford pain department. I have been doing a ton of research on pubmed.com which publishes abstracts of research and concluded I needed an MRIN. The "n" on the end stands for neurography and until I did the research, I didn't realize there was a way to image the pathway of nerves.

More on Pelvic Anatomy

These are much more complex than the other two posts and may make your brain hurt. They focus on the muscles and fascia that sit above the pelvic diaphragm:
http://www.youtube.com/watch?v=49yeRmj3cIo
http://www.youtube.com/watch?v=7fZfpNJHQTM


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#