I stepped out of the metaphorical medical closet this spring, increasingly voicing my experience with various pelvic pain conditions, including endometriosis and adenomyosis, for which I had surgery this past summer. Earlier this week I dove deeper into the “face your fear” waters with my second surgery of the year. This time it was for a condition known as vulvar vestibulitis/vestibulodynia (VVS), something I've lived with from a young age.
Like the other conditions, this one is extremely painful, restricting things like clothing options, biking, walking, sitting, standing and intimate relationships. Genital burning, tearing, and knife-like stabbing are all common sensations. It can be provoked (brought on by touch) and unprovoked (existing just for the hell of it). Muscle spasm (vaginismus) can often be a secondary reaction to it, adding pain on top of pain in an unrelenting cycle. Also like the other conditions, VVS is not well studied or understood, is often misdiagnosed, dismissed, and can take years for someone to finally recognize it.
In my case, after a decade of struggling I brought my own research to my doctor who was then able to confirm it. Later, in 2004 I learned about this surgery (vestibulectomy) in an issue of Good Housekeeping, surprisingly enough. At the time, I was relatively newly married, a broke college student, and equally intrigued and terrified. Should I do this? Could I do this? If not now, someday? Would it work for me? What if I tried and it actually made things worse instead?
Soon after, I found a specialist who was very familiar with VVS and we tried everything from drugs and creams to physical therapy and even botox injections (it’s not just for face-lifts!). Surgery was still an option, but the questionable statistics kept me from moving forward.
I despaired, ignored, rose above, fell again. Life moved on, but at the same time I stood stalled in the same place. Finally in the spring of 2017 it was as if someone whispered directly, "Okay, Angela. You've had enough now... It's time. You've got this." When even a month before I would have still said no to it all, I was suddenly *flip-the-switch* ready to take on so much chronic pain with surgeries I'd been gathering knowledge about over the previous decades.
While adeno and endo can be hard for people to talk about, being that they are conditions tied to the reproductive system, I’ve pretty much gotten over that. While I don’t want to embarrass anyone, I talk about it with those who are curious. I have a wealth of knowledge to share and I want others to find accurate answers sooner than I did. Keeping mum makes finding answers that much more difficult. What’s worse, it makes it seem like there are no answers to be found. From the inside, I know that silence is the killer of hope. For the sake of others, I am determined to somehow, in some way, speak.
However, with VVS, I find sharing to be more difficult. When I started sharing about some of my other conditions, I wondered if I would ever be able to share about this. I believe that extra hesitation is because the other conditions are more internal. We don’t see them, so they almost become hypothetical in discussion. “What kind of surgery did you have?” can be responded to with a vague and single word: abdominal. This time a more authentic response would be “vulvar and vaginal,” language that in our current culture would leave many blushing or even cringing. After growing up thinking “vagina” was a dirty word, it’s taken time for me to shift my thinking from shame toward acceptance of my own existence. I’m getting there. And I’m determined to get there, because being okay with my own body and experience…whether broken or whole… will allow me to be of more help for others who are still searching for answers in the dark. As with my last surgery, I don't know if this is the final piece to the puzzle, but if nothing else I hope it will have been a step in the right direction. Either way, I'll be reporting back for those who are walking parallel journeys. Good luck to you, warriors.
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Poem: An Impossible Kind of Magic
I awoke,
starch sheets against the rub
of a crackling paper gown,
the shuffling of a nurse nearby.
Eyes still closed,
I let the tears rise
and spill
silent yet speaking
decades of tender fear.
"Dear," she asked,
love on the tongue,
"are you in pain?"
I shook my head, eyes still closed
against the medicated blur
outside of me. "No,"
I whispered with a quiver.
"What is it?"
Grief swirled, hope
mixing in like caramel. The idea that relief,
an impossible kind of magic,
might be in sight...Neverland on the horizon.
"I finally did it," the only words
she heard. My happy thought,
so many new beginnings.
