“I remember lying on the bathroom floor thinking what’s wrong with me. I didn’t have a way to talk to anyone about it. And so I didn’t. It was my secret, private pain.” (Click here to see Callista tell her story.)
Physical therapy isn’t uncommon, but most people have never heard of pelvic floor physical therapy. It involves having your insides massaged through your most intimate opening. The strangeness of such an activity is tempered by the strangeness of your predicament in the first place: your vagina hurts. It has always hurt. You’ve tried everything to overcome this unwanted sensation. Years of denial. Employing mind over matter techniques. A “fake it ‘til you make it” life motto. Lots of therapy. When none of that worked, you employed more insidious strategies – drinking, drugs, full body detachment. Along the way, you’ve infused this cocktail with plenty of self-loathing, guilt, overwhelming sadness, and, increasingly, a sense of total despair. As the downward spiral of chronic pain strengthens its grip on your psyche you watch life pass you by: another friend getting married, another baby on the way, another house warming party. The moment of Rock Bottom comes over the course of many years, and many failed relationships. And this is how you find yourself lying on an examination table, with a doctor’s hand all the way inside your vagina, massaging the walls of your pelvic floor.
There is nothing remotely sexual about this experience. First of all, my physical therapist, Dr. Pamela Morrison, is incredibly professional. She is warm, compassionate and listens to me extensively before we begin the physical exam. Secondly, to be honest, nothing having to do with my vagina has ever felt very sexual. I do not have any pleasure sensations linked to this area of my body. Ask me to describe it in three words? Burning. Stabbing. Throbbing.
The confusion this elicits is endless. I have a sex drive, I like men, and I want to be sexual. I hold on to the idea of what sex “could” be like, or “should” be like, or even, in times of true optimism, what it “will” be like. Over the course of my 33 years I have never relinquished this hope, this desire.
Dr. Morrison is encouraging. “I think I can help you,” she says after our first meeting, “but you have to be prepared to do the work.” Over the course of six weeks we use biofeedback and massage to help my vaginal muscles learn how to behave normally, how to relax. I begin checking in with my pelvic floor often, and usually I find it is clenched protectively. I work on relaxing it and things improve ever so slightly.
More than anything else, the growing sense of awareness and acceptance is changing my relationship to the pain – and to my vagina. The pervasive feeling of helplessness surrounding a taboo topic is falling away. I finally have a vocabulary with which to talk openly about my problem, and talking is very cathartic. I’m done hiding now. I walk around New York City telling anyone who will listen.
At the six-week mark, Dr. Morrison says to me “you’ve come a long way, but you have more than a muscular problem.” She refers me to Dr. Andrew Goldstein, head of the Center for Vulvovaginal Disorders, and I schedule a consultation for a few weeks later.
Home the next day for Christmas, I’m sitting in the dining room with my mother while the rest of my family chats and laughs in the living room. I weep as I share my story with her for the first time. She wraps her arms around me as I sob and consoles me gently, “Little One,” she says, “why didn’t you ever tell me? You can’t do everything alone.” The topic has been broached, and in that moment so many walls between my mother and me came tumbling down. It is the true beginning of letting go.
A few weeks later, Dr. Goldstein is friendly and brisk as we review a lengthy questionnaire I had filled out prior to my office visit. I am tightly wound, equal parts hopeful and skeptical. Will he really be able to help me? Once we are in the examination room he does something no other doctor has done before – something so simple and ridiculously empowering, I am nearly giddy. He hands me a mirror and tells me that I am in control of everything that is about to happen.
Looking at your vagina isn’t all that convenient, and I’d even go so far as to say it can be slightly terrifying, but I’d be remiss not to recommend that every woman should spend some time with a hand mirror and her most precious self. I had the stunning realization in that moment that this thing was mine and that I was solely in control. That this part of me was beautiful and worthy of love. And as Dr. Goldstein performed the exam I had another revelation – the pain was localized, confined to a relatively small area around the opening of the vagina, aptly named ‘the Vulvar Vestibule’. He explained to me that I had been born with over 300 times the normal nerve endings at the entrance to my vagina. Instead of sending a signal to the brain that I was being touched, the nerves were instead telling my brain that I was being burned and stabbed. This condition is known as Congenital Neuroproliferative Vestibulodynia, which is a type of Vulvodynia.
And now for the moment of truth – what could be done about it? “Well, it’s really very simple,” he explained. “We remove the bad skin and replace it with healthy skin. After 6-8 weeks, you’ll be back to work. Within my practice the surgery has a very high success rate.” We go over the risks and the success rate among Dr. Goldstein’s patients, and also alternative options such as anti-depressants and hormone treatments. He explains that for me, these treatments may help as a “patch,” but could never correct the root issue. I am very emotional as we discuss treatment options. The surgery seems extreme, expensive, and almost logistically impossible. “Do you want children?” he asks bluntly, and more tears ensue. “Yes,” I manage to choke out. “Then you shouldn’t wait too much longer. Go home, take it easy today and think about it. Talk it over with friends and family. And don’t stay away too long.”
I leave his office feeling conflicted. On the one hand, I am elated to have a diagnosis. On the other hand, I can hardly conceive of how to tackle the surgery. I schedule the procedure for the coming December, just under a year away. I spend the year working towards my goal.
After the procedure, my mom drives me home and I spend the next eight weeks lying low. It’s one of the snowiest winters on record, and I feel like a caterpillar in my cocoon, waiting, changing, transforming – not just physically, but emotionally as well. I go through a very dark period, but as I begin to heal, a great hope surges through me and begins to burn steadily. I feel different. As the wound heals and the pain from surgery subsides, I can feel that the burning ring of fire is gone entirely. After two months, when I use a mirror to finally scope out my new little butterfly, I am amazed to see that although my vagina isn’t exactly the same, it is still beautiful. At my post-op follow up, Dr. Goldstein inserts two fingers into my new vagina I sit up incredulously – there’s no pain! Suddenly, tears of joy run down my cheeks and cover my face.
It’s been 18 months since the surgery and I am thrilled to report that I am completely pain free. If I have learned one thing throughout this process – and thankfully, I have learned many things – it’s that speaking up about something that is bothering you is always a step in the right direction. My advice to anyone struggling with a similar issue is to never give up. Stay active and engaged in the process as you follow your path to wellness. There will not be a magic bullet, and the surgery is not for everyone. You may have to try many things but each thing will lead you one step closer to your solution. Remember that the body and mind are deeply connected. Nurture your mind, heart, and soul. Practice radical self-acceptance for where you are now, knowing that as you travel you will learn that there are many, many other people who share your pain. And you will meet many people who are willing to help you along the way. I have always loved this quote by Rainer Maria Rilke and often remind myself of it when I grow discouraged: “Let everything happen to you. Beauty and terror. Just keep going. No feeling is final.”