When I first started writing about my struggle with vaginal pain, I mentioned that it felt like one of my greatest fears was materializing: that I am stuck with this unprovoked pain forever. Seven months later, the pain and inflammation persists. So yes, for now I am living in tandem with one of my greatest fears. Some days, or hours, it still feels as awful as it sounds.
And yet. Ever since I hit a new emotional low-point this past November, something very subtle began shifting. In tiny momentary miracles, I've started to palpate the presence of a gift-beyond-measure tucked deep, deep inside this painful fiasco. (That is to say, when I'm not trying to annihilate the shit out of the pain!)
A couple months ago, five months into this mess of physical pain, around Thanksgiving, I was bumping up against the darkest, grizzliest, most profound despair I've ever experienced, the kind that made me persistently think I didn't want to live anymore, if this is what my life was going to look and feel like. Those words may be hard to read, but trust me, they are much harder to feel. When I started this blog, I made a commitment to myself that I wouldn't mince words. No matter how scary, I would name that which we are usually too terrified or ashamed to name. So yes, a large part of me wanted to die.
It turns out that this is not an unusual feeling for those who struggle with persistent vulvo-vaginal pain, which I discovered when I finally dared to take a peek at Naomi Wolf's recent book, Vagina: A New Biography. I still have a hard time with most of the book because it requires me to read about women with healthy, happy vaginas, and all the things they can do with them. It makes me angry and jealous. But thankfully, for those of us with hurting vaginas, Wolf includes a chapter called "The Traumatized Vagina".
There's even a section called "Vulvodynia and Existential Despair"! In it, Wolf interviews Nancy Fish, a therapist who works with patients in gynecologist Deborah Coady's practice in New York City. Wolf claims that Coady's is the "foremost vulvodynia practice in the United States". Fish has also suffered from vaginal pain.
Fish says that all of the women she sees are depressed. "Most of my patients have had suicidal ideation." …"Any time there is any kind of problem in the vulvovaginal region, it affects your whole sense of self. A lot of women feel crazy for feeling that their whole sense of self is involved with the vagina, but I tell them they are not. Having pain or discomfort in that part of your body is not like having pain in another part of your body."
This excerpt, in which Wolf continues to question Fish, resonated deeply in me:
"What does it feel like for women to never be able to use their vaginas in a healthy way?" "They don't feel they are whole." "In a different way than an amputee?" I kept restating the question because I wanted to be sure I was isolating 'vaginal grief' from general physical grief. "Yes", she affirmed. "While I was going through my journey with vulvodynia, I also had a lateral mastectomy. That was a piece of cake compared to this."
Wow. Needless to say, there is something profoundly validating to hear that I'm not the only person for whom vaginal pain has turned completely upside down and shaken all the happy bits out of me.
Having struggled with depression for most of my adulthood, I've always promised those closest to me, that should I ever feel in true danger to myself, I would seek help. So when this recent despair started occupying larger and larger chunks of psychological real estate, I proved to myself that I care enough to do what it takes to stay safe.
For the first time in my life I began to seriously research residential treatment. Living alone when you're going through something like this takes inordinate stamina. Ultimately, for the right reasons, I decided to stay put, and instead to increase my once weekly therapy appointments with a therapist who specializes in trauma, to three times per week. This wise move, among others, seemed to help stop the emotional bleeding, so that I began to feel safer and better contained.
Since that time I've continued to refine my resources. I now feel like I have a solid team of support between my medical providers (mainstream and alternative), therapist, and a lovely mind-body healing coach. So while the physical pain persists, I FINALLY feel like I'm swimming in the right healing pool. Amazing how a short little word like "trauma" can be such a profound game-changer. I'm learning things about myself and my life that are blowing my mind. You might have noticed I'm acutely self-aware. Honestly and arrogantly, I thought I knew pretty much what there was to know about myself. But, the things I'm learning now make me feel like a kindergartner in the school of personal-growth. It's kind of astounding. And dare I say, exciting.
The other night a friend called something "a humble brag", in the context of describing an irritating acquaintance. I'd never heard the expression but I knew exactly what it meant. (I love those succinct expressions. Ironic, coming from the least succinct writer ever.) So this may sound like a humble brag but so be it. Since the beginning of my ordeal seven months ago, people have called me brave for fighting so hard, despite the pain and depression. It's never felt like bravery to me. Just desperation to get well. If you felt like the very center of your being was in constant pain, you'd be searching just as hard.
But here's what I do see as brave (nothin' humble about this brag): In the past couple months, since hitting my newest rock bottom, I've committed to having faith that I can heal. This is one of the bravest decisions I've ever made. It requires hourly, daily, and sometimes minute-by-minute effort and dedication to resist the siren call of despair. In the circles of vagina pain, this is VERY counter-cultural thinking.
There's a whole lot of evidence to support the idea that I have this thing called "vulvodynia" and it must be managed imperfectly forever, but not healed. There's also a whole lot of fucking evidence trying to seduce me to believe that I could, in fact, end up as one of those women who lives with this pain the rest of life. And the longer the pain persists, the more tempting it is to believe that gloomy prognosis. Add to the mix that my track record for being hopeful kinda sucks, and we've got a mighty powerful foil to faith. It's REALLY scary for me to hope, because I've tried it on many times, only to be crestfallen.
The great irony about learning how to have faith and hope for a better future, is that it requires us to accept and be present to what is here right now. Damn you, zen-y acceptance. So my biggest work right now is learning how to live again, with the pain in hand. And that is exactly what I'm doing these days. Fuck, is it hard.
So if you see me riding my big-girl scooter down Centre Street (the most comfortable form of transit since it doesn't require me to sit on my pelvic nerves) or sitting and laughing on a couch at a party, please know that it takes great courage and resolve for me to be doing these things. Please know that I'm in the midst of what is proving to be a long excavation, in hopes of unearthing the mysterious gift(s?) that whispers to me from a place I can't even locate yet. Send me your love, will you? And I'll send it right back to you, because I'm certainly not the only one out there sifting and sorting and daring, trying to find my way out of pain into light.