From the zine Opening Up Credit: k. Fry/<a href="">@kfrydraws</a>

In 1996, feminist scholar Susan Wendell wrote: “What can I know if I can’t know what I am feeling in my own body? How can I remain connected to a world that denies I am in pain, or dizzy, or nauseated, when I myself cannot deny that I am?”

Vaginismus is fairly common, impacting 5 to 17 percent of people in a clinical setting. The number is likely higher, as many patients don’t come forward or talk to a doctor about their condition due to embarrassment or anxiety. During intercourse, or while inserting a tampon or finger, the pelvic muscles contract and patients feel so much pain that any type of penetration becomes impossible. Some folks describe it as burning and aching while others say it’s like hitting a wall. Vaginismus is essentially the body’s natural fear reaction to protect the individual from pain, but by doing so, more pain is induced. Muscles tighten without any control.

Imagine this: if someone puts their finger near your eye, you automatically flinch or shut your eye. You can’t control it. That’s vaginismus.

The reasons for the condition vary widely—some are psychological and stem from sexual abuse, fear of sex, or religious upbringings, while others don’t have a history in any of these areas.

In the same vein, vaginismus is difficult to diagnose due to similar side effects crossing over among various pelvic and vulvar dysfunctions, disorders, and diseases. Vaginal pain could be a yeast infection, a side effect from birth control, ovarian cysts, endometriosis, an STI—the list goes on. However, for many patients, doctors dismiss them, deny them an answer, and leave them with no treatment. Painful sex becomes a reality with no cure.

A 2014 online survey found that 2,400 women in the U.S. live with chronic pain and 91 percent felt that their doctors discriminated against them for being women. Almost half of the participants in the study were told that their pain is in their heads. And vaginismus patients are no strangers to this type of dismissal. This common method of medical gaslighting is incredibly damaging to patients. Folks begin to feel alienated and don’t reach out for help. Relationships suffer. The body-to-mind connection falters.

Claire, 34, who prefers to only go by her first name, said her history of assault is one of the biggest triggers for vaginismus. “I hadn’t realized how much I relied on alcohol and drugs for me to be able to be intimate until I went sober in 2015,” she says. When she finally made major progress with a partner, doctors discovered precancerous cells on her cervix due to HPV. Her doctor suggested a loop electrosurgical excision procedure (LEEP) that cuts out the abnormal cells and the area of the affected cervix. “My healing after the LEEP procedure was longer than expected and I was in pain a lot longer than my doctor had suggested I would be. It took me a couple of months after the procedure to feel comfortable having sex again and when I did it was painful,” explains Claire. In addition to this recovery, she began to get ovarian cysts, a result of her Mirena IUD. After deciding to get it removed, she thought sex would be pain-free again. “Instead the pain kept getting worse to where I physically could not have intercourse,” she explains.

Vaginismus pain can vary from person to person. No two symptoms are the same. For Claire, she started with a tight and dry feeling, even when she was aroused. After she had sex, she would begin to burn and it would be painful to urinate. Light bleeding was sometimes present, too. Over time, the pain began to increase and the entrance to her vagina would begin to burn. “Even with lots of lube and foreplay my body felt completely closed off to sex,” she says. Like many vaginismus patients, Claire says it feels like her partner was hitting a rock wall. This “closed off” feeling is a common thread between patients, a blocked-off muscle reaction that hurts like hell.

The emotional and mental exhaustion of vaginismus can be overwhelming. Many folks begin to feel a loss of self-esteem and confidence, in the bedroom and out of it. The thought of being intimate began to initiate panic attacks for Claire, who has been with a long-term partner of five years. “There were fights with my partner at the beginning when we didn’t understand what was happening and I was starting to shut down. I was eventually unable to communicate my physical and emotional pain. I did not want to admit that this was happening to me and to us,” she explains.

In 2008, Christine Labuski gained a PhD. in cultural anthropology after she left work as a nurse practitioner in the fields of gynecology, sexuality, and queer health. She was interested in “lived experiences” like STIs and abortions. Her dissertation turned into her book, It Hurts Down There. Now, Labuski teaches women’s and gender studies at Virginia Tech.

Labuski’s research has looked at the emotional toll and mental health impact that chronic vulvovaginal pain can cause. Many of the people who Labuski spoke to said they shut down and shut out the idea of sex. Many of them were concerned that when a partner kissed them, they would want to have sex and that sex would ultimately result in pain. This cycle of anxiety and stress led many folks to consider themselves “abnormal.”

“This meant that a lot of people with these pain conditions were cutting physical and emotional affection out of their lives, due to their fear of painful penetrative intercourse,” she says.

Community is essential. Ten years ago, there were virtually no articles or studies on vaginismus. No one was talking about it. The Internet was mute. That’s why Chicago-based podcast Tight Lipped, which focuses on pain during intimacy, is such a sigh of relief. Noa Fleishacker, cohost and producer, opens up about her chronic vulvar pain and interviews writers, patients, and activists who share their stories and experiences—all so painfully similar to Claire’s experience. Feeling any kind of pain is a claustrophobic experience, and to mix in the inability to have sex is incredibly overwhelming. In 2019, Tight Lipped launched a zine called Opening Up in which more than 50 contributors shared their stories about vulvovaginal and pelvic pain through art, poetry, and prose. Virtual events have also kicked off during the pandemic where folks can connect and build community over state lines.

“It seems like, in the U.S., we need a celebrity or some other well-known person to open up about a stigmatized experience before we’ll talk about it,” says Labuski. We see this type of advocacy and awareness about endometriosis, for example, where celebrities like Chrissy Teigen and Tia Mowry have been open about their pregnancies and their endo journeys. Vaginismus hasn’t hit the mainstream yet. There isn’t an advocate in the limelight preaching about their intercourse woes.

Claire blamed herself, as many people who are on the receiving end of pain do. With the lack of education surrounding vaginismus, people think this pain is unique to them. And with doctors lacking research and misdiagnosing pain, studies and data are largely absent from medical textbooks. “I had constant anxiety that my partner would want to break up with me,” says Claire. “I questioned daily why they were with me. We had not had sex in two years by the time I found a doctor that could help me.”

Labuski says that folks should redefine the word “sex” so that they “don’t have to feel like they are missing out on ‘sexual’ pleasure because one specific act is too uncomfortable for them.” Experimenting with outercourse, like kissing, massaging, or including sex toys can create a more explorative and intimate space in the bedroom. It’s imperative to make sure your partner is working alongside you, understanding you, and communicating as much as possible. Vaginismus is a two-way street.

So, how is vaginismus treated? What makes the condition difficult to treat is the fact that it is a mixture of physical and emotional response. Where dilators may physically train the body to accept objects inside, the mind-body block may cause the body to tense up and many folks describe a severe loss of libido. This will also cause painful sex. It becomes a cyclical battle between mind and body.

“One of my committee members joked that the physical therapists were the ‘heroes’ of my dissertation. And they were right!” says Labuski. Styles and treatments range for people with painful sex, but most people do well when physical therapy includes cognitive therapy.

Claire began seeking physical therapy, where she would go to downtown Chicago once a week to have specialists vaginally release tensions and tightness. Occasionally, anal releases were also done since it is tied to the pelvic floor. Many suggestions from PTs are pelvic floor exercises and stretches that are linked to yoga. Additionally, she began using silicone dilators (tube-shaped devices that are inserted into the vagina) and a vibrating wand every other night. Slowly, patients should work up in dilator sizes to retrain the vagina to accept foreign objects. Eventually, a phallic object can be introduced.

Since pelvic pain awareness has been budding at a grassroots level, penis bumpers like the OhNut ($65) have also hit the market. The device slides onto a person’s shaft, or a toy, and shortens the length, and serves as a bumper, to eliminate deep pain inside of a person.

“Hot baths with CBD/THC bath bombs are magic when it comes to relaxing your pelvic floor. I make sure to do a bath with CBD/THC at least every other week,” says Claire.

While Claire is still recovering, she says she is more hopeful. “I know what my body needs to help stay relaxed, and I feel confident with the tool kit that my PT taught me. I don’t feel ashamed or anxious anymore that sex has not been a part of my relationship lately, because I realized that we had developed intimacy in other ways that are also important to a healthy relationship,” she explains.

She still has an emotional block when it comes to intimacy, impacting her ability to orgasm. She says, “When I am ready for sex, I want to be able to enjoy it fully. I am currently working on learning how to be intimate with myself and what my body needs now that we have gone through this together.”   v