Three out of four women have dealt with pain during sex. Why is the medical community ignoring the problem?
It can be difficult being a sex writer and explaining the eight years of pain I lived with beforehand. Burnining, stinging and soreness are ways I can describe sex in the my early twenties and late teens. Tears—lots of them—and confusion are ways I can describe my experience with doctors. Leaving another office with no answers was a common reality. Anger was a natural reaction. Even my own peers and family would brush it off: “Oh, you just need some wine,” or “Maybe try a better lube,” was dangerous and demeaning advice that I was forced to listened to over the years. Eventually, I muted it out.
What I had, but was not aware of for over eight years, is a sexual disorder called vaginismus. There are two types of vaginismus: primary and secondary. Primary is when penetration is never achieved, and secondary is when intercourse was once possible, but after a trauma, it is impossible.
Arleigh* first expericiend vaginismus when she tried to use a tampon at 15 years old. “The pain felt like a burning, knife-like sensation that radiated to my lower abdomen. My sister had to remove the tampon for me because I became faint. I didn’t realize that something was truly wrong until I tried to have sex once I entered college.” For many people with a vagina, tampon insertion is the first sign of vaginismus. Once I began having intercourse with partners in high school, it was never pleasurable. And the pain didn’t begin to deeply impact me, and eventually make intercourse impossible, until I was 18 years old with a long-term partner. I began to become distressed and depressed over my inability to have intercourse. Having a few fingers inside of my vagina was something I was able to enjoy and achieve, but anything larger was impossible.
MB* had a similar situation with tampons at the age of 12. “I knew they weren’t supposed to be comfortable, but it was never even possible to fully insert them and move around normally. My body just wouldn’t do it.” Later on, when she was 18, she had her first speculum experience where her physician began to laugh and mistreat MB during the visit. “After an experience like that, which is categorically traumatic, pain becomes associated with penetration. So because this happened to me before any kind of penetrative sexual experience, I’m not sure if I always had full on vaginismus, or if the pain and trauma got to me first.”
I would flinch and physically move my body away from partners—something that was entirely out of my control.
That’s what happens with many patients: it’s confusing to know which came first, the pain or the trauma. And trauma doesn’t have to be classified as abuse or violence, it can also mean surgery, infections, or even something like an issue inserting a tampon. The mind is protecting the body from pain, and it associates certain acts as painful. It remembers a situation and the muscles contract, preventing anything from entering.
Diagnosing vaginismus can be a complicated process and can vary from patient to patient. It’s not a cookie cutter disorder. For some people, tampons are possible but gynecological exams are not. For others, sex is possible but essentially impossible due to pain. The symptoms of vaginismus include: burning, stinging, fear of penetration, loss of desire, and the absolute inability to have anything inserted into the vagina.
It’s also important, though not always possible, to learn why the contraction of the muscles occurs in the first place. The tightening of the vagina is involuntary, and it’s impossible to control. The body has learned to associate penetration with pain and, whenever penetration is expected, the vaginal muscles contract as a protective reaction. For many people it can be a link to trauma.
Dr. Cynthia Doodeman says, “Trauma, we now know affects the function of the brain. So even when sexual activity is strongly desired, the brain of a traumatized woman can signal this muscular contraction in the service of protecting a woman from further violation.” For myself, my first experience at eleven years old wasn’t due to any trauma. However, attempting intercourse later in life, and withstanding the excruciating pain that came along with penis-in-vagina sex, created a trauma in my mind. I would flinch and physically move my body away from partners—something that was entirely out of my control. My body was terrified of being harmed again. Dr. Doodeman says that, “Painful sex can originate from physical issues such as sexually transmitted infections or other medical problems. If the pain is not attributable to a medical issue, a woman might find talking with a mental health practitioner to be helpful. At the very least, this will include reassurance that pain with sex is not a personal failing.”
It’s no surprise that disorders like vaginismus can lead to distress and depression. A study found that “Experience or anticipation of pain may result in a fearful reaction that inhibits genital arousal. This may also explain the more severe anxiety levels in women with vaginismus with inhibited arousal.”
Dr. Doodeman says that, “Pain associated with sexual activity, including vaginismus, vulvodynia, and vestibulitis can impair sexual function severe enough to make a woman’s sexual life inaccessible.” Sexual intimacy is a natural function—it is a body’s right to feel pleasure.
For people with vaginismus, dating is obviously a challenge. But MB says that it’s not impossible. While she has a healthy view of herself, she says it’s easy to be hard on yourself. “Like, ‘Hey, I have a couple things I’m working on, I don’t love certain parts of my body, oh and I can’t have sex in the fundamental way that heteronormative men and couples define ‘true’ sex. What’s up?” Nevertheless, MB says she continues to seek out solutions for people with vaginismus. “It makes me sad and angry, but I’m working on it. I know I’m incredible and I know I’m gorgeous. I know I deserve love as much as anyone else. But we forget things that we know all the time.”
Arleigh has found more peace now following the year of her diagnosis. She says she is, “aware that there’s a lot to love about myself despite living with and navigating life with this sexual dysfunction.” Nevertheless, dating with vaginismus has been “emotionally draining and hard to navigate,” for her. I had two long-term partners over the course of my eight years with vaginismus and had to find methods to substitute penis-in-vagina intercourse. And actually, I do believe it helped me in discovering my sexuality: my needs, desires and dislikes were all prioritized. My partners were as in tune with my body as I was.
Regardless, I was a lucky one; sexual pain for many patients is embarrassing. “Any kind of chronic pain, like that of vaginismus, can cause symptoms of anxiety and/or depression. If chronic pain is not addressed, the whole being, including a woman’s sexual being can cause thoughts of brokeness, inadequacy, guilt or shame,” explains Dr. Doodeman. Seeking treatment often includes therapy. For some people with vaginismus, physical therapy is a means of recovery, whereas for others, it’s psychosomatic. In some, utilizing both physical therapy as well as emotional therapy in conjunction helps ease painful sex.
The American College of Obstetricians and Gynecologists says that three out of four women will have some sort of pain during sex in their lifetime. So why are doctors ignoring women’s pain? For over eight years, I found no doctors who found an answer to a disorder that plagued my well-being. And of course, I was not, and am not, alone. “A total of four doctors dismissed my symptoms,” says Arleigh, who explains that all of them focused on questions about sexual abuse—even though she states that was not something she ever experienced. “They recommended that I drink heavily whenever I decided to be intimate with someone. Considering it to be an issue of anxiety and disregarding the idea that it could be a physical dysfunction instead.” Doctors should do better, be better, when it comes to physical ailments. Arleigh had a vaginectomy done at 21 that was ineffective and unnecessary. Overall, it intensified her condition. After seeing a fifth doctor, she finally received a diagnosis of vaginismus.
The lack of information women have about their own bodies is dangerous.
Wanting to rule out endometriosis or PCOS, MB went in for an ultrasound where the wand went in easily. She says that she remembers being so relieved, thinking “I’m not completely impenetrable.” She says she isn’t in place financially where she can commit to therapy for her vaginismus. However, she is part of a pelvic pain support group that meets monthly in Chicago.
Over two years, Ella went to three different doctors. After having a traumatizing experience with a medical professional, she finally found a doctor who listened. “She confirmed that I had vaginismus, but told me my vagina was ‘beautifully healthy’ and that I would be able to have sex again, if I could feel at ease before penetration.” Regardless, she was left with no answers as to how to solve her condition.
After seeing four doctors myself (many of whom explained I was “too tight” or “too high strung”), I sought out a specialist, began hot yoga, incorporated pelvic exercise into my practice, found a loving partner, and used dilators religiously. It’s difficult to say then what eventually cured my vaginismus, but in four years, I haven’t had any bouts of painful sex.
For some, chronic pain or chronic disorders can serve as a creative outlet. I began writing extensively about sex and women’s health when I realized my vaginismus was being ignored. Four years later, I have a blossoming career. Ella debuted a play called, “Have I Told You I’m Writing A Play About My Vagina” at the recent Edinburgh Fringe Festivalwhere she is beginning a conversation about vaginismus on a much larger, and public, scale. “I think when one person stands up and speaks honestly about something that’s usually kept private, it creates a space for more people to feel comfortable enough to be honest and open, too. The lack of information women have about their own bodies is dangerous,” says Ella.
“A trusting and open relationship with an experienced mental health practitioner may be the answer for this extremely personal problem,” says Dr. Doodeman. It’s a lot of work (I know from personal experience), and it doesn’t go away on its own. It takes physical therapy, repetition and training the body to embrace penetration (possibly for the first time). Under all circumstances it’s imperative to know, and remember, that your body isn’t broken and that you aren’t a sexless person. A medical change must begin on a grassroots level. Vaginismus is real, it’s happening, and it’s affecting thousands of people with a vagina every day.
Four years ago there was virtually no information about vaginismus online and now, there are several articles detailing the symptoms, the disorder, and how patients are being ignored. What started as a disorder that no one had heard of has now become a serious concern for therapists, physicians and specialists. Opening up, demanding answers, and discussing concerns is a daring but necessary act in order to enact any type of change.