Thursday, April 2, 2009

Thoughts from Anna Rose, Part 2

This is the second post in my series about a sexual pain disorder and my journey towards a cure.*

"If sex hurts," reads the ad in my college newspaper, "It could be vulvar vestibulitis." Next to the text is a serious and intense-looking young woman who may or may not actually have vulvar vestibulitis.

I do not have vulvar vestibulitis, even though sex hurts. I saw the doctor the ad is for. He had a million dollar grant to research the disorder, and was so excited that he diagnosed me before I walked in the door. But his cures didn't work for me. After the lidocaine cream, which burned, and would numb me rather than allow pleasure, his next idea was tri-cyclic anti-depressants--an old generation of drugs that wasn't great at curing depression, but worked for physical pain. Its side effects include heart palpitations. Some people get depressed on them. If that didn't work, he offered surgery: Amputate the affected tissues. My instinct told me these ideas were unnatural and drastic, and I left his practice.

Vulvar vestibulitis is "an unexplainable inflammation of the vulvar vestibule," more commonly known as the vaginal opening. (The whole external part of a woman's reproductive system is the vulva. The vagina is only the opening.) I think the word vulva is beautiful and powerful. Fun fact: The only two human tissues that are identical under a microscope are the vestibules of the vulva and the mouth.

Next, a resident who didn't even look at my vagina (or any other part of my vulva) diagnosed me with vaginismus. As these disorders go, it's common, as is vestibulitis. But it's totally different. With vaginismus, the muscles of the vagina perceive--for whatever reason--an incoming object--penis, tampon, speculum--as a threat. When muscles feel threatened, they clench up. With constricted muscles, embracing even a desired penis can be terrible. Doctors have had a lot of success treating vaginismus. Patients use a dialator, and slowly, slowly teach their muscles to stretch enough to accept a penis (tampon, speculum). Physical therapy and massage therapy also help. I've heard great stories about cures from vaginismus. I do not have vaginismus.

I saw a doctor of Chinese medicine about my crippling lower back pain, and mentioned my sexual pain. He said he'd cured someone with the same problem, by giving her a homeopathic yeast medication. Her yeast glads were overactive and enlarged. In just three treatments, she felt fine. He gave me six injections in my inner labia. Yeah. My yeast glands, as it turns out, were already fine.

I went to a naturopath who said I might actually have interstitial cystitis. My dad, a kidney doctor, had suggested that the symptoms of vulvar vestibulitis and interstitial cystitis are so close that a diagnosis may depend on the type of doctor you see. This doctor put me on an elimination diet--a diet where you exclude foods that are potential irritants for three full weeks. If the symptoms go away, you add the foods back one at a time to see which one is the culprit. My list was about 40 items long: Most of my favorite fruits and vegetables, anything fermented (cheese, vinegar, soy sauce, alcohol), caffeine, and so on. And elimination goes as as far as this: There is alcohol in vanilla extract. If there is vanilla extract in a cookie, I couldn't eat the cookie. It made me insane. I do not have interstitial cystitis.

Sometimes people suggest that I have sexual trauma in my past. If I did, I might have female sexual dysfunction: After an episode of violence or coercion, the brain's response to sex changes. It becomes terrified, and often develops vaginismus: A fear response to a penis. In one case, a woman who was molested as a little girl suppressed the memory, along with all sexual interest whatsoever. As a physically healthy adult, she was unable to become the least bit aroused, physically or emotionally. She saw a psychologist who helped her reveal and work through her trauma. She's fine now. I've thankfully never been attacked, and do not have female sexual dysfunction, or any psychological disorder.

I also happen to know that my disorder is not curable by acupuncture, Qi Gung, hypnotherapy, or chiropractic, even though I know these to be successful and legitimate healing systems. In fact, I want to stress that all of the methods listed above have worked for other people. If you're on your own journey for a cure, I recommend trying out any of them (just get your doctor to check your yeast glands before they inject you. Biggest mistake of my life.)

Three years after my first diagnosis, my dad talked to an old doctor friend of his who specializes in urinary and sexual pain (don't ask me why it took him three years). His degree is DO, Doctor of Osteopathy. DOs can do anything MDs can do, but look at the body in a different way; they see it as on system. For example, my father studies the kidneys. He once tried to interest a dental school in helping him with a study of the links between gum disease and kidney disease (because if you swallow something, it ends up in your kidneys). Anyway, this doctor's first question was, "Do you have lower back pain?"

The morning after my thirteenth birthday, I woke up with lower back pain so bad that I couldn't sit comfortably, or stand for more than a few minutes.

His second question was, "Do you have foot pain?"

When I was sixteen, I developed foot pain so intense I couldn't walk without wanting to cry.

"Oh, this is easy!" he said. I have pelvic floor dysfunction. It's a disorder that occurs because standing upright is a relatively new stage in evolution--much like having mouths too small for wisdom teeth. Up till recently, the pelvic floor was a wall, which has far fewer responsibilities, and is sometimes too weak to be up to the job. Five problems commonly arise: Pain in the lower back and feet, pain during intercourse, and bladder and bowel problems. I'm thankful that my bladder and bowel work fine (for the record), but sometimes I wonder if they could have helped me get diagnosed sooner.

Because diagnosis meant relief. My doctor, a stocky man in his eighties with a big smile and a handlebar mustache, who always wore shorts to the office, treated me with a simple, side-effect-free technique called strain counter-strain (also called positional release therapy). Pressure is put on painful areas that shouldn't be so sensitive, and limbs are gently folded around those spots until a position is found that makes the spot more comfortable. The position is held for ninety seconds, until the brain realizes it likes this better. It's an incredible tool. The doctor of Chinese medicine I mentioned before told me that my back pain was probably due to the places on my feet that I put more pressure on. He taught me to walk properly, but the method never became habit. I had to think about it with every step for months. After my first treatment with strain counter-strain, my feet landed on the floor properly.

My doctor retired, and I've moved around quite a bit for the past few years, so my relief has been spotty, and always beyond my reach. But I'm finally settled enough to stay with one healer and see results. I'm in physical therapy, learning techniques that relax my tense, hyped-up muscular system and acclimate my hurting areas to greater amounts of pressure. I'm getting massages, which I think helps psychically as well as physically. Little by little, in tiny steps, I'm getting better. I'm less afraid of sex.

This is by no means an exhaustive list of disorders. I am not a medical professional of any sort. I would love to point you to Internet sources, but I haven't found good ones. The only piece of advice worth repeating from any website I've ever seen is this: Be your own advocate. Do not take the first solution offered if it doesn't feel right. Don't expect your doctor to know what they're talking about, or to have explored all the options. Painful sex is not covered in medical school. See different kinds of doctors, because different specializations offer different solutions, and something that worked for another patient may not work for you.

Don't stop with MDs. They only offer one perspective, and not necessarily the best. My experiences have led me to believe that some doctors, often older men, are proud and unwilling to admit they're in unfamiliar territory. Explore your options, keep an open mind, talk to lots of people, and be your own advocate.

When I first heard that, I thought it was one lonely-ass prospect. But you are not alone.

Anna Rose

*If you have chronic pain during sex, and you know you are not a victim of violence, you should see a doctor.


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