WARNING: Graphic content and unbridled misery. This post is not for the faint of heart, nor those offended by use of anatomically correct terminology.
A year has passed since your botched surgery. Although you are “healed” in the sense that everything looks okay, a fiery pain continues to plague you. It still hurts to pee, to sit, even to wear underwear. Worse, however, is the psychic pain, the raw, unbridled, homicidal rage roiling just beneath the surface of the mask you wear day in and day out. You live with it for more than a year, hoping against hope that one day you will wake up and it will be gone, but in the deepest recesses of your mind, you know that it will not. One day, the volcano within erupts and you can no longer contain the rage and frustration. You make an appointment with your gynecologist.
He is a short man, shorter even than you, but he is a kind and lovely soul. His demeanor is always calm, measured and soothing. He greets you like an old friend, hears your anguished plea for help, and once again, examines you. He finds nothing out of the ordinary, but he believes you when you describe your pain. He doesn’t think he can help you, but he will find you someone who will. You have a choice of three major medical centers in other cities; you choose the one that’s easiest to get to and has a reputation as an excellent women’s health center. “Give me a week and I’ll find someone for you.” The next day, the doctor surprises you by calling you at work to let you know that you have an appointment the day after tomorrow. You thank him profusely and fill out a request for time off. Your big-headed boss knows better than to refuse.
Your husband takes the day off to take you to your appointment. The doctor is head of the department and has extensive experience in ladies’ plumbing problems. He takes a complete gynecological history. As you are describing your brush with death and your surgical disaster, he stops writing and stares. When you come to the end of your history, he apologizes to you, on behalf of the entire medical profession, for failing to give you the care you needed and deserved. Relief floods through you. He is taking you seriously. He instructs you to undress and put on the gown on the exam table. He will be back with the nurse in just a few minutes.
You put on the gown and sit up on the edge of the exam table. When the doctor returns, he helps you to arrange yourself with your feet in the stirrups. As he begins his examination, you gasp in pain. He apologizes and explains that while this is painful, it’s necessary. You try to relax, but the pain is impossible. You grit your teeth and the tears flow, soaking your long hair. He can see no inflammation, but he can tell that the natural elasticity is gone as a result of the mass of scar tissue. He believes he knows what’s wrong, but he performs one more test to confirm his diagnosis of vulvar vestibulitis. You have no idea what this is, but you’ll have to take his word for it. He has not seen a case like yours resulting from surgery and he wants a second opinion to make sure he’s correct. He arranges for you to see a specialist an hour away. She is a bit of a celebrity doctor, and has appeared on national television in discussions of women’s reproductive health issues.
The new doctor confirms the diagnosis with a procedure that uses black light to highlight the inflammation. You have it, in spades. At least now you know what’s wrong, even if you have no idea what to do about it. You no longer doubt your sanity. When you return for treatment, your doctor discusses options. There is, at this time, no effective treatment for the condition, although there are some things that may help. He writes you a prescription for a low dose anti-depressant to help deaden the nerve impulses and perhaps relieve some of the pain and mentions a promising experimental therapy. It sounds gruesome, but if it will help, you will try it.
The experimental therapy involves a series of multiple corticosteroid injections into the affected area. He does three rounds of these injections over a six month period. Each time, he injects the steroid with lidocaine in a circular pattern around the vaginal opening, the vestibule. The pressure from the injections is painful, but once the lidocaine begins to work, you don’t feel much. Unfortunately, when it wears off after a few hours, the resulting pain is so intense that it makes you throw up. After the third round, when you feel no measurable relief, you give up in despair. You never return for further follow-up. Your rage toward the surgeon who butchered you threatens to spin out of control.
Not long after your last visit to the doctor, your father dies. He has been ill for some time now. You flew out to see him the year before when he had pneumonia and they thought he might die then, but you have not seen him since. Although unsurprised by his passing, it still sends shock waves through your already battered psyche. You were his favorite, his little princess. You assume the mantle of the perfect victim. You ask yourself “why me?”, and you wait around each day expecting the other shoe to drop. Five months after your father’s death, it drops with a terrific crash. Your 11-year-old son attempts suicide and ends up in the hospital for 10 days. His mostly absent father attributes all of his problems to you. You could almost believe him, except that your son’s issues began with his arrival in this miserable world.
Shattered psychologically, emotionally, mentally and physically, you are a mess, but also a great little actress, with your pasted on smile and pretend good humor. Inside the façade, you are crumbling. New physical issues appear. You have gained nearly 40 pounds. Your muscles hurt and you are so fatigued that it’s all you can do to drag yourself to work and fix dinner. A host of other symptoms follow, and finally after six months of this new misery, you see your internist. She decides that you must just be depressed, and by golly, you have a lot of reason to be, so take these pills. After the doctor leaves the exam room, a nurse comes in very briefly and says, “Don’t say I told you this, but I think you have fibromyalgia. You should see a rheumatologist.” Oh, yippee, another new “thing.”
Over and over, you ask yourself what awful thing you could possibly have done in a previous life to deserve all this sh*t.
(to be continued)