LS? VVS? Both?

I saw my OB/GYN on Tuesday. I let her know that the T salve didn’t work so now I was using an herbal salve, which seemed to keep flare ups at bay (for the most part), but didn’t stop the pain.

She recommended physical therapy to treat the levator ani muscle spasms and prescribed clobetasol propionate (clob) for the lichen sclerosis (LS).

I pushed her on the pain issue and she prescribed lidocaine gel as well.

When I asked her why my pain seemed to be more localized (in the vestibular area) she mentioned something along the lines of muscle spasms causing a variety of issues, then went on to ramble about her daughter’s piriformis muscle spasms causing numbness in her legs and how that freaked the good doctor out. And, by engaging my sympathies…she evaded further questioning.

I have a love/hate thing going on with that sort of interaction.

I hate it because she’s the supposed expert and she’s not listening to me…So she’s not giving me the answers I’m looking for.

I love it because I’m compelled to seek out more information on my own, learn more about how my body works and often uncover some alternatives that my doctor hasn’t prescribed, like herbal remedies and other over the counter meds.

I learned the levator ani muscle is more specific to the rectal area and the muscle surrounding the vaginal vestibule (where I’m feeling pain and tightness), is the bulbocavernosus muscle (as can be seen in the Gray’s anatomy pic: here).

What’s not clear is whether the bulbocavernosus is considered a portion of the levator ani or if they’re separate muscles…

So when my doctor talks about treating levator ani spasms, I want to make sure that therapy addresses the bulbocavernosus area as well.

Another thing I learned is that LS and vulvar vestibulitis syndrome (VVS), while nearly identical symptomatically, are actually different pathologies. Unfortunately, neither is easily treatable nor curable.

Judging from my symptoms, I think there’s a distinct possibility that I have both LS and VVS. And there’s a possibility that other factors are in play, like inflammation of the Bartholin glands.

Armed with more information…yesterday morning I emailed my doctor to get a bit more clarification about the anatomy and to confirm whether my symptoms are just LS or LS/VVS…

I’m still waiting for a response…

I hope that’s because she’s a busy lady and emailing takes time…and well thought-out answers take time. I hope she didn’t evade my questions when I had some face time with her because she simply doesn’t know. I need answers. I need to believe that what she’s prescribing will work.

In the meantime, I’ve joined an LS on-line group, and thus far it's an excellent resource for information. Many women who post say that clob can work wonders, which makes me optimistic about that. It's sad that there has to be such a list, but I'm so thankful to find some community support at last...what I've been dealing with has been extremely isolating.

Thus far, the best thing is reading the "success stories", I'm looking forward to writing one of those soon...