A reader writes:
Yes, it is true that doctors—and not just male doctors, and not just doctors—don’t take women’s pain seriously. I have vulvodynia—the skin of my vagina is so painfully sensitive that even the lightest touch feels like pureed habaneros—and I also have vaginismus—my pelvic floor muscles seize up constantly to prevent penetration. I’ve had vulvodynia and vaginismus as long as I can remember, but it’s been a long, awful road to be taken seriously, much less get diagnosed.
When I was a teenager, my mom took me to the doctor to see if anything could be done for my debilitating menstrual cramps. The doctor gave me a pelvic exam. I didn’t know what a pelvic exam was, so I didn’t know what I was agreeing to, if I agreed to it at all. The doctor stuck her fingers up my vagina and started feeling around, and I was in unimaginable pain—worse pain than the menstrual cramps that were so painful I couldn’t even walk. I was in agony. More than that, I felt violated. I had been raped.
My mom and the doctor were puzzled that the exam upset me so much. They thought it wasn’t a big deal that it hurt, or that I was upset; they just thought that it was because I’d never had sex before and didn’t know what it felt like. I cried all the way home, all afternoon, and into the evening.
My mom offered to take me shopping.
My experiences with doctors did not improve. For years I avoided gynecologists and any other doctor who needed to examine my private parts. I pleaded my way out of all the pelvic exams I could, and the ones that I couldn’t avoid felt like rape, with terrible pain and violation.
As a young adult, I started dating a guy. I told him about my problem, and he couldn’t understand why I didn’t just go to the doctor. “You just go to the doctor and they fix you, right?” He could not understand at first that the doctors would always want to give me a pelvic exam and that pelvic exams felt like rape, and that I had panic attacks even thinking about seeing a doctor about this problem. Even when I told him in exactly those terms he couldn’t understand. In his experience, DOCTORS + FIGHTING SPIRIT = SUCCESS!, and so if you’re not overcoming your medical problems, it’s probably because you haven’t seen the right doctors or you’re not trying hard enough. The idea that the medical system could be stacked against a person was completely outside his experience.
Eventually he understood, but it took a lot of fights. Even now, he only understands it intellectually; he doesn’t really understand what it feels like. The only people who really understand me are my friends with chronic illnesses.
Eventually, I started seeking treatment for my problem, whatever it was. I was in grad school, so I only had access to the student health system. My experience was pretty bad. I’d make an appointment for women’s health and I’d see the nurse practitioner. I’d rehash and relive my awful history of vaginal pain, she would perform an exam (more pain, more feelings of violate) and then conclude that the problem was all in my head and send me to behavioral health services. I would see a counselor there, I’d rehash and relive my awful history of vaginal pain, and she would conclude that it wasn’t in my head—it was a physical problem—and then send me back to women’s health.
This cycle repeated multiple times over a period of years, with me taking months between visits to work up the courage to go.
Eventually I saw one nurse practitioner who referred me to a doctor at the medical school who did research on women’s pelvic pain. There was an eight-month wait for an appointment. When I finally saw the doctor (I suffered panic attacks the night before and had to bring a friend to the appointment for moral support), she was able to diagnose me with vaginismus and vulvodynia.
IT WAS SUCH A RELIEF TO BE TAKEN SERIOUSLY BY SOMEONE WHO ACTUALLY KNEW WHAT THEY WERE DOING.
The prognosis wasn’t great—use topical anesthetics to numb the skin pain, then gradually learn to relax and relax the muscles through physical therapy—but it was an incredible relief to know there was finally a doctor in my corner who understood me.
Then I moved.
Finding a new doctor was agonizing. I asked my old doctor if she could refer me to someone, but the doctor she mentioned wasn’t even taking new patients. More anxiety, more panic attacks.
Eventually I worked up the courage to ask the doctor who wasn’t taking new patients if she could recommend someone else in the area. She gave me a name. I made an appointment and my boyfriend came along … not just for moral support, but because doctors are much more likely to hear “STOP!” if it comes from him instead of me. This doctor was also excellent, thankfully. But I’ll be moving in another year, and I don’t know what I’ll do then.
I can’t even begin to tell you how much damage this whole string of bad experiences has done to me. Most of it has come from my abysmal treatment at the hands of the medical system instead of my actual medical problems.
I don’t trust doctors. I don’t trust that doctors will listen to me or believe me. I don’t trust that they’ll stop if I tell them to stop because they’re causing me pain. I don’t trust that doctors will be competent. I have severe anxiety around everything even tangentially related to gynecological visits. The very idea of tampons makes me woozy.
I need to take isotretinoin again but I’m afraid that the doctors won’t believe me that I’m not having sex, don’t want to have sex, and have no plans to have sex. Many dermatologists have blanket policies that you have to be on two forms of birth control even if you’re not having sex, but the only option open to me other than abstinence is condoms. I have contraindications against using hormonal birth control, and something like a diaphragm or an IUD is out because it requires contact with my vagina.
I have severe anxiety around pregnant women and young babies; I can’t stop thinking about how if I got pregnant, I’d have to go to an OB/GYN, and how degrading that would be, and how much agony I would be in. My new doctor thinks I might have PTSD, but I haven’t tried to get diagnosed or treated because I haven’t found a doctor I trust enough yet. And I can’t have biological children—not because I couldn’t get pregnant, but because I don’t trust doctors.
If there’s a happy-ish ending to this story, it’s that my then-boyfriend, now-fiancé, is still with me. He’s very supportive, coming to all my doctor’s appointments, and supports me when I want to go at my own pace. He’s sad that he’ll probably never have vaginal sex with me, but he still wants to be with me no matter what.