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."

Imaging of the Pelvis and Nerves

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.

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.
UCSF has a machine and I have a referral there. She immediately offered this to me, as well as, a regular MRI of my sacrum and localized nerve injections, so that's all good.

Now for the "shaming" of previous doctors:
1. I have had multiple MRIs that imaged the pelvis. I thought the pelvis included my, um, pelvis, but it only looks at the vertebrea of T5 and above, not S1-S5 which is where the nerves of the sacrum are located. S2-S4 is where the pudendal nerves originate. So this imaging of the pelvis that I had was a useless and confounding diagnostic. I needed imaging of my sacrum. Imagine the loss of time, frustration, and expense. But wait, there is more.

2. Dr. Hah made this suggestion because in the two previous injections I had at Stanford the doctors wrote in my medical notes that they had trouble finding "the physical landmarks" to be confident that they had hit the pudendal nerve. Maybe it they had imaged my sacrum they would have been more successful. And here is the second thing that makes me mad, my doctor at the time DID NOT TELL ME that a reason why it failed is that they likely hit the wrong location.

3. No one has offered me an MRIN. The "N" stands for neurography and this test will show where the nerves go once they exit S2-S4. Admittedly, it is a technology not commonly available, but I live in one of the best places for medicine and it has never been offered. All I have to do is drive up to UCSF which is 20 minutes from my home to have it done.

It is so frustrating to realize that possible progress has been delayed by poor doctor communication or follow-through. It is impossible as a patient to be as discerning as someone with a medical degree and yet that is where we with vestibulitis often find ourselves.

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