Monthly Archives: September 2011

Dragon-Slaying

My official diagnosis was vaginismus, or severe tightening of the vagina that makes sex incredibly painful or even impossible. For me it was a chicken-and-egg question: there was no way to know whether it was already happening before my surgery or whether the surgery indirectly caused it. Dr. C believed the latter, saying the surgery likely gave me a subconscious fear of sex; my physical therapist said it was a moot point. Women with vaginismus often go years without getting treatment because so few doctors know how to remedy it. Many in the medical community feel that vaginismus is strictly emotional and write it off with a “prescription” for sex therapy. I was lucky enough to have a doctor who believed in a holistic approach: Dr. C made me an appointment with a physical therapist who works exclusively with women’s health, listed home remedies and simple exercises that are proven to help, and suggested I see a university psychologist. She encouraged me to think realistically but hopefully: “Physical therapy will take longer than a pill,” she cautioned. “But if we can train your muscles, we can completely eradicate the problem.”

The idea of physical therapy was odd to me. What was the therapist going to do, massage my lady parts into submission? Mini nightmares (cue Jaws theme music) edged into my mind at random times of yet another medical professional getting involved with my uncooperative body. But in October 2010 I entered the physical therapist’s office half an hour before my appointment and filled out the obligatory paperwork. When Penny came out to greet me, I knew I’d made the right decision. She was a leftover hippie, sporting chunky jewelry and au naturel brown and gray hair. Penny is originally from San Francisco but had found a home in our own Virginian hippie oasis. She took me back to her therapy room, closed the door, and said, “What am I going to help you with?” And with that, she stole my heart. She was so confident, so compassionate, and so ready to help.

I told my story…again…rather dispassionately by now. My optimism had waned over the years, and I was starting to believe that, as Dr. B had warned me in the counseling room, “Some women just don’t care for sex, and it’s possible you are one of them.” Penny listened patiently, nodded, and said, “I can help. We’re going to get your insurance to cover this, and we’re going to train your muscles to relax. When you relax, the pain will subside. You might have some vestibular vulvodynia, especially since you still have scar tissue, but if the muscles stay calm, you probably won’t notice it.” So once more, I crawled up into the stirrups. Penny explained every move she made, locating tense and less tense areas, making a sort of map for treatment. The next appointment, she hooked me up to a biofeedback machine that used color-coded graphs to show us exactly which muscles succumbed to spasms, when, and how intense. Because of the information the machine provided, I began to differentiate my pelvic floor muscles, feel when they tensed, and learn how to release them. Tensing had become such a habit that I realized I was holding them tight even when it didn’t make sense—while studying, for example, or while driving.

Penny also taught me generalized relaxation techniques. As you might imagine, going through a master’s program away from my family-and-friends support system while dealing with sexual dysfunction and increasing marital difficulties was pretty stressful. We found that as I employed Penny’s global relaxation techniques, I was better able to manage the tensing of my pelvic floor due to stress. Over the next few months I spent hours and hours in Penny’s therapy room, practicing deep breathing, intentional muscle relaxing, and pelvic floor strengthening exercises. For her own part, Penny used the biofeedback machine, manual manipulation—the weirdest-feeling pelvic exam you can imagine, and strain-counterstrain techniques on my lower back (which is connected to pelvic floor muscles). Strain-counterstrain was my favorite. It’s a muscle-relaxing method in which you find a tender and/or ticklish muscle—in either case, it’s tensed—and apply pressure for 60-90 seconds until the muscle melts like butter. Although I had never had back pain, I felt so good after strain-counterstrain sessions.

I saw small successes every step of the way. After just a few sessions with Penny, I started noticing when the spasms happened, and I was able, gradually, to mitigate them and then stop them altogether. Next, I was able to start using tampons, which had never been possible. Then, I made it through an entire exam with Dr. C with absolutely no pain whatsoever. Finally, when Penny had to use certain instruments during manual manipulation, I stopped having spasms. Granted, I had to be present in the moment, focusing on my pelvic floor muscles and their movements…but for the first time, I wasn’t having any spasms at all. That was the first moment of my life that I felt true confidence in my body. Maybe—maybe—there would come a day when it didn’t feel broken. Maybe there would come a day that sex would be enjoyable. Maybe I would one day feel womanly and feminine and even…did I dare say it?…alluring. For the first time, all of this seemed possible. At this point, no sex of any kind had been a part of my life for several months, but with the possibilities there, I started feeling a sense of pride in my body and decided it was time to lose weight. And that is exactly what I did.

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The Dreaded Stirrups

There are a number of reasons I consider my time at the University of Virginia a gift, but near the top is Dr. C, even though she represents hours and hours of having my feet in the stirrups. Not only did Dr. C extensively research the symptoms I described, but she also called doctor friends and colleagues who are specialists in the field of female sexual issues. After spending hours on my case, she took time to explain to me in precise, comprehensible terms what my body might be doing and gave me a choice of treatment options without pushing me in any particular direction. Two diagnoses were possible, and we had to decide which it was before we could design a viable treatment plan.

The first possibility—the one we were both hoping it wasn’t—was vulvodynia. Vulvodynia is chronic vulvar pain, and there’s no cure. The pangs can be anywhere from dull to crippling, and they attack you as you drive, swim, run after your children, wash clothes, and everything in between. Naturally, while sex intensifies the pain, it’s more or less always there when vulvodynia is the culprit. The “treatments” are pain management programs, not cures, and many of them are, quite frankly, creepy. One commonly invoked method is a topical ointment featuring capsaicin, the active component of chili peppers. Chili peppers. That’s right: we’re talking feeding puréed chili peppers to my lady parts. Like, literally spicing up my sex life. The idea behind capsaicin—which, by the way, is every bit as much of a skin irritant as you’re imagining—is that you shock the nerves. Eventually, the nerves will calm themselves when they get over the pain spike. It seemed like thinly veiled, sarcastic masochism to me. “You think you’ve got pain right now? Wait’ll you feel this, dollface.” Cue the chili peppers.

Another treatment possibility is a vestibulectomy. I will explain as gently as possible. A vestibulectom-ist (that is not a real word) excises the really egregiously painful tissue in the vaginal vestibule, scooping out all the skin and tissue with the overactive nerves. To re-cover the excised area, a vaginal extension is performed, pulling vaginal skin forward over the area and securing it. Women, are you crossing your legs yet? The short version is that the surgery pulls out painful skin and covers it back up by using your lady parts like a rubber band sewn in place. The problem with this treatment—I say that as though there’s only one—is the formidably low success rate. As in, 50-60% according to most doctors. I’m sorry, but if you’re going to stretch my lady business, I’m going to need a higher chance of success than eh, maybe.

Other less invasive options are practiced. Dr. C offered me tricyclic antidepressants, for example. They are meant to affect the mental patterns of pain your brain creates. Despite how desperately I wanted to be cured, the idea of using antidepressants to alter receptors in my brain just so I could enjoy getting frisky seemed like regret waiting to happen. I did use Lidocaine, a topical numbing agent, for a while. But you might imagine the (viable) complaints my husband had about numbing ointment. Plus, it worked about as well as I imagine the chili peppers would. So Dr. C and I decided to rule out vulvodynia and assume my pain was vaginismus instead.

Unlike vulvodynia, vaginismus is not chronic. It is vaginal pain triggered by certain activities or movements. Also unlike vulvodynia, the pain is muscular rather than nervous. While vaginismus is certainly the root of much dysfunction and emotional and physical pain, the splendidly good news is that muscles can be trained in a way that nerves cannot. So if vaginismus is the problem, it is possible to be completely cured by working on the muscles.

I am happy to report that my problem was in fact vaginismus, correctly diagnosed for the first time by Dr. C in October of 2010. We were finally, after two and a half years, on the right track. As I left her office, I could feel it—hope.

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Killer Ovaries

In August 2009 we moved out of state for me to go to school. Part of my scholarship was 100% coverage for any services provided by the health clinic, so within a month of our arrival, I made an appointment with the university gynecologist. I wanted answers and figured that starting all over with a new doctor might occasion them.

Words cannot express how grateful I am for the incredible health insurance the university provided me and the amazing doctors who helped me. Dr. A was my first doctor at the university, and he listened patiently to my story. He promised me we’d find an answer. When I’d finished giving him all the pertinent details, he began asking me some questions—how much energy did I have, what were my eating habits, what was my typical menstruation cycle. Answer by answer, we elucidated the constellation of symptoms and their probable cause: polycystic ovarian syndrome (PCOS). It explained so many of my body’s abnormalities. In order to verify the diagnosis, we checked my thyroid, blood sugar, and hormone levels. Just as Dr. A suspected, the culprit was PCOS. He referred me to Dr. C, a specialist at the university in female reproductive disorders.

Dr. C gave me tons of information on PCOS. She explained that the catalyst for my sugar cravings and low energy was insulin resistance, which often accompanies PCOS. Additionally, my hormones were imbalanced, causing irregular periods and other embarrassing problems. Gone untreated, Dr. C told me that PCOS would likely lead to diabetes and perhaps eventual death from it. Despite the enormity of my frustration with my body and the severity of the issue, I still struggled with the decision to start Metformin. For one, a family member of mine had experienced serious problems as a result of taking it. But also, I didn’t like the thought of being on a medication for the rest of my life, especially at the age of 24. After a few weeks of serious thought and prayer, I filled the prescription.

The first six weeks I was on the drug weren’t my favorite days. Metformin causes nausea, painful cramps, and trapped gas, to name a few. I started on the lowest dosage possible and still felt awful. Every time I had to increase the dosage, the symptoms redoubled. But after I’d paid my dues—about ten weeks in—I started seeing a genuine difference in the way I felt. I dropped 10 pounds almost instantly and found it much easier to lose weight even after that, having regulated my insulin imbalance. I had more energy. My menstruation cycle regulated. I felt better than ever, truly. I felt well, healthy. It seemed, honestly, like everything had improved. Except my sex life.

Oddly, the one thing I’d gone in for answers about went unaided. It wasn’t Dr. A’s fault or Dr. C’s fault. It was simply that hormones and insulin and cysts were apparently not causing my dysfunction. When I mentioned this to Dr. C, she said, “It’s so odd…Normally, women with PCOS have a higher sex drive and lower occurrence of dysfunction, due to elevated testosterone levels. We’ll figure it out, Amie. I promise.”

She meant it.

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