Editor’s note: Names have been changed to protect the identities of women in this article.
For Em, a 28-year-old woman in the Seattle area, the first time she had sex was on her wedding night. But it wasn’t the perfect night she was told it would be. It hurt.
When she sought help, no one took her seriously. She went to her primary care doctor, then to a gynecologist, and they just told her that she needed more lube.
“I didn't know how to say no, you don't understand. It hurts like hell,” Em said. “And so when I said it hurts and they'd blow me off, I'd be like, ‘Well, I guess they're the doctor. They know.’”
Em was officially diagnosed in 2014 with vaginismus, a disorder that causes pain with penetration. But she spent years being told that there wasn’t something truly wrong with her, that it was in her head, and continued to suffer with the pain.
“I think if I had seen the right doctor in the first few years, I could've recovered within a year or two,” Em said. “But because it went on so long and I thought if I just suffered through the pain, things will get better. That resulted in sexual trauma, which resulted in PTSD and now [my husband and I] are trying to go through that.”
What Em’s doctors didn’t know enough about was the disorder vaginismus, which is anything but “just in women’s heads.” Penetration of any kind, even with a finger, is painful or impossible. One common feeling is that anything attempting to penetrate is “hitting a wall.”
Vaginismus was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a sexual dysfunction in 1980, but its symptoms have been recorded as far back as 1547, and the name for it was coined in 1861 in a case report by J.S. Sims. The patient in this case reportedly had an “intensive reaction” to even the doctor’s “very slight touch” during an examination. While “screaming,” her eyes “glowing like mad.” Vaginismus is now filed as a “Genito-Pelvic Pain/Penetration Disorder” in the DSM 5.
Many women experience pain during their first attempts at penetration, whether that be in a medical or sexual context. However, it’s just as possible to develop it secondarily, even if it’s not the first time a woman has had sex, sometimes because of trauma or childbirth, and possibly even because of the effects of birth control.
But when sex hurts, many women don’t think much of it. They keep it to themselves. We’ve been taught to even expect painful sex, due to myths about virginity and hymen “tearing.” Seventy-five percent of women experience dyspareunia (pain during sex) at some point in their lives, and anywhere from 7-22 percent experience it persistently. Pain can be indicative of an infection, lack of arousal, or low estrogen levels, but when it’s persistent, it’s usually ascribed to these things, and not something bigger.
Medical providers don’t just disregard women’s pain when it’s pelvic. Studies have shown that when women report the same pain scores as men, they are less likely to receive opiates or other pain-relieving drugs. Women also tend to wait an average of 16 minutes longer than men to receive this medication. One of the reasons for this, among many others, is that doctors often believe that women’s pain is emotional, not physical.
For many people with vaginismus, the feeling of attempted penetration goes far beyond “hitting a wall.” It can create a burning or tearing feeling. The pain itself is often excruciating.
“[In the first couple of years of dealing with this pain], I was angry constantly, constantly, like a volcano in my chest that I couldn't contain. Sometimes it would come out in screaming, sometimes I would punch things and it was just sudden like, one second, I'm fine and then snap, I'm gone,” Em said. “I came to hate [my husband] and resent him for a long time. I blamed him for it. If he hadn't wanted sex from me, maybe I wouldn't have become like this. And ... I think that's still there a little bit. But you know, we were both young and stupid. We didn't know what we were doing. He didn't mean it. We're still really good friends.”
The crux of vaginismus as a disorder is the negative feedback loop of pain and fear that it creates. Initially, pain is caused by a spasm of the pelvic floor muscles around the opening of the vagina. This tightens the area in order to prevent penetration. When penetration is attempted, however, this “tightness” can cause intense pain. This pain reinforces the cycle; as the body begins to fear future attempts at sex, it preventatively tenses up as a defense mechanism.
Dr. Melanie Andersen, a gynecologist at UW Medicine, regularly sees patients for pain during sex.
“The definition [for vaginismus] that I tend to use with patients more often is just kind of some kind of aversion to vaginal penetration … So not necessarily always intercourse,” Andersen said. “Sometimes it's just with exams, sometimes it's with tampons.”
Jamie, a 29-year-old woman who lives in the Seattle area, has suffered from vaginismus since her freshman year of college, and vulvodynia almost her whole life, until recently. Vulvodynia is another chronic pain disorder, characterized by vulvar pain with no identifiable cause.
For Jamie, running, riding a bike, and any activity that caused clothes to rub against that area would bring ”random shooting pains.” When she first told a gynecologist about her symptoms, she was actually laughed at. For her too, it took years to get a diagnosis and eventually the treatment that would cure her.
“So I'd go to a medical practitioner, I'd mentioned vaginismus, and they'd be like, ‘Oh, “va-jizz-miss,” what's that?’” she said. “The second question would be, how does your husband feel about that? And I was like, ‘OK, OK, wait a minute. I'm the patient, my husband is nowhere to be found. Maybe ask me how I feel about it.’”
The divide between women’s sexual dysfunction and men’s is alarmingly wide.
“There're so many studies and so much funding [that] goes into treating erectile dysfunction and so little focused on women's health issues,” Jamie said.
Erectile dysfunction (ED) is a household name — Viagra is fairly accessible, even covered by insurance, and those experiencing ED generally don’t cite pain as one of their symptoms. Sexual dysfunctions that affect people with vaginas, especially those that actually cause pain, should be treated with the same weight that other sexual dysfunctions are, and not continually stigmatized and erased.
“I would say I probably heard about [vaginismus] at some point in medical school,” Dr. Andersen said. “There's so much overlap in the way that we talk about these things, whether it's like vulvodynia or a lot of just different terms. I think they are thrown out there and probably defined in some way in medical school but never in a way that is practical.”
Vaginismus does not have to be a chronic condition, there are many different kinds of treatments out there. While almost all of them take a lot of patience and work, there is something out there that should work for everyone.
“Probably one of the most helpful things I think is starting with pelvic floor physical therapy. We have really, really great pelvic floor physical therapists at the UW and so I've sent patients to them who really, it changed their life I would say,” Dr. Andersen said. “And it's not an easy process by any means, but it certainly can be very helpful for people.”
After many years of psychotherapy and pelvic floor physical therapy, Jamie spent two weeks during October at the Women’s Therapy Center in New York, and came out of it pain-free. For her, this means not only being able to have penetrative sex for the first time, but also signing up for a half marathon that she’s now training for.
“I've been with the same guy since my freshman year of college, and we’ve been married for three years. So we're finally able to have intercourse, like the ‘normal way,’” Jamie said. “I’m realizing now that I fretted so much about being broken and … I just feel like there's so much hype about penetrative sex in culture, that it’s the only way to have sex. But it's just amazing how sex is no longer a big deal to me. Like before the fact that I wasn't able to have intercourse was like a sign of my self worth or whatever. It's still kind of sinking in that this is my life now.”
If you’re experiencing pain during sex, the first step is talking to a doctor — a step that shouldn’t be underestimated. Advocating for yourself in a medical setting can be difficult, but searching for a doctor who will take you seriously is worth it. However, talking about sexual problems can be difficult even with friends, let alone medical professionals.
“It's painful. It's also really a private [thing] and it can cause just incredible amounts of shame, right?” Jamie said. “Like you know when you're younger, like just chatting about sex casually [if you’re dealing with something like this], it's really easy to like shrink down and kind of say, ‘Ha-ha,’ whatever, and join in. But deep inside you feel like you're terribly broken, you're never going to be able to relate.”
Whether or not you choose to exercise it, humans have a right to experience pleasure. The disorder of vaginismus reveals two biases present in our culture: First, that penis-in-vagina sex is the only “sex” there is for heterosexual couples. But it’s important to remember that penetrative sex is also not the only way that one can experience pleasure in a relationship, and many couples have rewarding sex lives while dealing with this disorder.
We’ve also been led to believe that men almost have a right to this kind of sex. After going public about her disorder through a Facebook post, Jamie received many messages telling her that her husband was a “keeper” for sticking with her despite their inability to have penetrative intercourse, a comment that overlooks her struggle with pain and trauma in favor of her husband.
“And the thing is, yes, I agree that he's a keeper because I picked him,” Jamie said. “But like the flip side of that was, ‘Oh wow, like he deserved to have sex and like you're keeping that from him.’ Not that I was so cool that he stuck around for so long.”
Vaginismus is a scary diagnosis. It certainly can make dating more intimidating and treatment can be intense, but it’s not a death sentence. With our culture’s placement of penetrative sex as an ideal, any deviation from that norm becomes seemingly unacceptable. More awareness is necessary about the diversity of ways that all types of people experience sex, as well as in women who experience pain regularly. Most importantly, the medical world needs to wake up and listen to women’s pain. This doesn’t have to be a scary diagnosis, and it’s possible for vaginismus to be recognized and treated in a compassionate, supportive way.
“[If you’re experiencing pain], it's not normal. It's not something you should just take,” Jamie said. “We deserve pleasure too, but at the very least we deserved to not be in pain. Advocate for yourself. You're worth it. And also it usually takes longer than we want it to, but there are ways to make it go away.”
Reach Co-Special Sections Editors Charlotte Houston and Alyson Podesta at email@example.com. Twitters: @choustoo and @alyson_podesta
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