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It's nearly 2019 yet there's still a stigma surrounding the topic of sexual and reproductive health. Sure, we're getting more comfortable talking about periods and birth control, but anything beyond that is off the table. Because of this, many of us fail to speak out openly and honestly about our health concerns, and when something happens with our bodies that we don't recognize, we're left at a standstill.
No one knows this better than 22-year-old university student Shannon, who last year was diagnosed with a form of genito-pelvic pain disorder, an emotionally and physically taxing health condition that affects her ability to enjoy sex.
Shannon's journey started last year at an annual gynecological exam. "I went to get my IUD checked, and during the exam, the healthcare provider wasn't able to fit the adult-sized speculum in my vaginal canal," Shannon tells us. "Even after inserting the pediatric-sized speculum, I began to experience hot flashes, faintness, and excruciating pain." At this point, the diagnosis was clear to her doctor. "The provider then wrote 'vaginismus.com' on a piece of paper," Shannon says. "He briefly explained the diagnosis and left the room. I was left panicking."
What is vaginismus? Keep reading to learn about the diagnosis, causes, and treatments of this genito-pelvic pain disorder—and what it means for women who suffer from it.
How Is Vaginismus Diagnosed?
First thing's first: Vaginismus is a condition that falls under the umbrella of genito-pelvic pain disorder. According to ob-gyn Rebecca Booth, MD, the American Psychiatric Association uses the term "genito-pelvic pain disorder" to describe generally "painful sex or pain with vaginal penetration." Symptoms can also include fear or pain with gynecological exams and difficulty using tampons. As Booth explains, dyspareunia and vulvovaginal are other terms that gynecologists often use to describe pain with sex, but these terms are often "intended to be more descriptive than truly diagnostic." Vaginismus is a more specific condition.
Ob-gyn Sherry Ross, MD, author of She-ology: The Definitive Guide to Women's Intimate Health. Period, explains the diagnosis of vaginismus like this: "Vaginismus is a condition where the muscles of the vagina contract involuntarily, tighten, or spasm, causing vaginal pain, sexual discomfort, burning, and penetration problems." These symptoms commonly occur during sex, insertion of a tampon, or during a pelvic exam. Shannon experienced symptoms with all three.
When we tried [to have sex], it just didn't work. We didn't really talk about it afterward, because I think both of us were just confused about what went wrong.
Pain with tampon insertion was Shannon's first clue that something might not be right. "I always avoided tampons, but I didn't know if they felt different to me or if they were uncomfortable to everyone," she says. With vaginismus, the pain level can vary from woman to woman. As Booth explains, "Vaginismus is a physical reflex to resist vaginal penetration, almost like the reflexive blink from a poke in the eye." Inserting a tampon for someone with vaginismus could feel anywhere from uncomfortable to excruciating, and sex is obviously even more complicated. "The reflex to tighten the vaginal opening may become so compelling [that it's] unstoppable, resulting in the idea of vaginal intercourse as dreaded and painful," says Booth.
Because Shannon just felt discomfort when inserting a tampon, as opposed to sharp pain, she disregarded her concern—until symptoms resurfaced in college. "I had been recently dumped by a guy I was seeing because I wasn't ready to sleep with him," she says. "After that, I decided I ought to lose my virginity, so I went home with a guy I didn't know very well and told him I wanted to have sex. When we tried, it just didn't work. We didn't really talk about it afterward, because I think both of us were just a little confused about what went wrong."
During this time, Shannon was in the process of earning a degree in the medical field, so she was vaguely aware of vaginismus, though not of the specifics. Still, she was certain she had it and explained her uncomfortable sexual experience to a few close friends as proof. Eventually, though, they convinced her that it couldn't be true. "The tough thing about feeling different is that it makes one avoid talking about an issue, when in fact talking to others is the only thing that can really lead to a solution," Shannon recounts. It wasn't until her annual exam that the diagnosis was confirmed.
What Causes Vaginismus?
As for the cause of genito-pelvic pain, there doesn't seem to be a set consensus. Doctors are confident that it's linked to emotional factors like anxiety and stress as well as physical factors. According to ob-gyn Crystal Berry-Roberts, MD, potential factors include "vulvovaginal atrophy, decreased lubrication during sexual arousal, history of sexual abuse, and prior trauma to the genital region." Scarring from surgery or cancer radiation can also lead to this type of pain. As for vaginismus specifically, Berry-Roberts says that causes can overlap with those listed above, in addition to "a congenital abnormality in the genito-pelvic area, an inflammatory process, or a neurologic issue." Needless to say, pinning down an exact cause is daunting at worst and murky at best.
How Many People Have It?
Even though vaginismus is a well-recognized condition, a quick internet search will unveil those accurate statistics are hard to come by. In fact, some medical sites don't disclose any at all. According to Booth, it's because of the stigma surrounding the condition. "Women are often uncomfortable discussing the topic of pain with penetration. Embarrassment is often the cause, but so is isolationism—the fear that no one else talks about this so it must be very wrong or imaginary," she says. Ross agrees: "Many suffer in silence."
This embarrassment or isolation is unfortunate, considering that one study says chronic pain during sex affects approximately 15% of the female population. "I have treated very many women with vulvovaginal pain, literally hundreds," says Booth. "The good news is that it is usually highly treatable, especially if the patient is comfortable with repeat visits to make progress and to openly discuss the problem." Of course, vaginismus is rarer. "But I have treated at least a hundred patients with this through the years. The good news is that it responds very well to treatment," Booth assures.
How Is It Treated?
Treating vaginismus is challenging but totally possible. As Ross puts it, "Vaginismus can be cured depending on a woman's motivation and determination not to allow this condition to run her sexual and everyday life."
Treatments depend on individual cases, but they include the use of dilators, anesthetic gels, counseling, and physical therapy. Occasionally, a very simple surgery can remedy the issue.
Shannon's specific case was largely due to high stress from school and work, so she benefited from regular physical therapy appointments. Interestingly enough, the therapy never hurt physically, just emotionally. "The treatment process was very emotionally difficult for me," she says. "At the lowest point, I started to worry about fertility. I think all in all I had three separate 'why me?' breakdowns sitting in my car after my therapy appointments."
The Future for Vaginismus Patients
From here on out, Shannon will focus on healing the condition from the source: stress. "The most important thing for me is lifelong management of stress," she tells us. "My pelvic floor and my stress levels are so acutely integrated that I really can't let my stress go unmanaged."
As for Shannon's experiences with sex? All but one or two of her partners have been nothing but understanding and sensitive. But like anything else, it's the odd criticism or offhanded remark that stings. Shannon recalls one bad experience from this past year: "After I ended things with somebody who I had been spending time with, he sent me some terribly insensitive and egotistical texts. I took the opportunity to utilize my honors degree in health education to inform him that I have a fucking medical condition (not a 'feminine issue,' as he chose to call it). I then proceeded to explain the meaning of misogyny to him." (You go, girl.)
The diagnosis isn't an identity—it's the first step on a journey of self-discovery and physical and emotional healing. As for Shannon, she's grasped the importance of learning about herself and listening to her body, clearly and alertly. "I didn't even try to have sex with a partner until I was 21, which is later than most of my friends," she tells us. "I think on some subconscious level, I may have known that my body wasn't ready. … It's weird to think that my body must've known more than I was consciously aware of."
For anyone experiencing pain during sex, Booth advocates meeting the issue head-on. "Seek out a gynecologist or women's care specialist that you can talk freely with," she says. "Be willing to spend time with your caregiver, more than just your annual visit, to resolve the problem as soon as possible. Be open to an integrative approach that may involve another team member such as a physical therapist. This is extremely important for you to optimize your femininity and not to dread your sexuality."
Got more questions? Try this tell-all guide by Sherry A. Ross, MD.