I probably first experienced vaginismus when I was around 11, although I didn’t know that yet. I sat crouched over the toilet, fumbling with my first tampon, reading the box it came in and then rereading it. I felt nauseous, light-headed. I sat on the bathroom floor.

Impossible! I remember thinking to myself after the entire process failed—my tampon would not physically go in, and the pressure of it all one summer afternoon resulted in queasiness and exhaustion. I wasn’t aware of it at the time, but this was all due to vaginismus, a condition where my pelvic muscles spasm uncontrollably and block the insertion of any foreign object.

I’ve been wearing sanitary pads (and in the last few years, period panties) due to my body’s unwillingness to accept any foreign objects. Like a defense mechanism, my muscles in my vagina involuntarily contracted when any pressure was present. I use the past tense, because around two years ago, suddenly—without any warning—my vaginismus dissipated.

I spent eight solid years begging, pleading, and eventually demanding that my doctors look into what was wrong with my body. “You’re just too tight,” said one to me at the age of 23 (years after I had started being sexually active). “Oh, you have a bit of yeast. This medication should clear it up,” said another. “You have lesions on your cervix. This silver nitrate cauterization will clear it up.” Those lesions turned about to be undiagnosed HPV, and the cauterization made me pass out.

In short, I argued with medical professionals for so long that eventually I gave up. They weren’t on my side. They didn’t attempt to pretend to be supportive. Their lack of interest or compassion in my debilitating sexual dysfunction was devastating year after year. I sought out online communities, started my career as a health journalist, and visited Dr. Stacy Lindau, who truly believed my sexual pain.

She recommended that I look into pelvic exercises; practicing yoga, meditation, and mindfulness; and taking dilators seriously. Suddenly, with a new boyfriend, I was having intercourse with zero pain. I was free, cured, and able to be a normal sexual being.

It’s unclear how many people suffer from vaginismus; doctors don’t have clear numbers due to their lack of understanding and women’s apprehension in coming forward. However, it is noted that one in three women do have pain during intercourse and that 30 percent of people with a cervix, ages 18 to 59, experience some difficulty with pain during penetrative sex.

I talked to four people who have been affected by vaginismus and discussed its impact and how the medical system is failing to comprehensively look at the disorder. Their names have been changed for this story.

Is It Related to Past Abuse?

Doctors commonly ask people experiencing painful vaginal sex if they have a history with sexual assault, as doctors speculate that vaginismus is your body’s way of protecting you—blocking any foreign and unwanted objects from entering. The panic response is commonly known as the “fight or flight” response where the muscles spasm to protect the body from past trauma or pain. But there is still no clear reason for the condition: It could be from trauma, infection, psychological reasons, or other factors.

Kate, a 52-year-old cis women in a polyamorous triad with a partner of 12 years, told me that many therapists have diagnosed her as having symptoms of being molested as a child. Although she does not remember an incident, she does agree with this assessment. With vaginismus, it is very common for your body to contract as a defense reflex.

Kate’s doctor informed her that she needed a hymenectomy at the age of 23, which may be why she was unable to have intercourse.

However, after her hymenectomy, Kate was still unable to have intercourse.

“The infirmary suggested I had a psychological fear of sex, but didn’t use the term ‘vaginismus,’ and suggested seeing a school therapist,” she told me. After reading literature about sex, she found that some people were “subconsciously afraid of sex, and clenched their vagina muscled unconsciously to prevent it.”

Kate, however, wanted to have intercourse. She began to experiment with inserting objects and masturbation. After some time, she was successful.

But vaginismus doesn’t only affect people who have been abused. Childbirth or surgery can be classified as forms of pelvic trauma. Vaginismus.com notes that intercourse after childbirth can be painful due to “bruising, procedures such as episiotomies, tearing of the perineum, attempting to have intercourse before healing is complete, and/or vaginal dryness due to hormonal changes/breastfeeding.”

Other medical conditions can also lead to the disorder. At the age of 19, Rena was diagnosed with “chronic candidiasis, which caused an overgrowth of yeast in my gut, which spread to my vagina, which caused what was supposed to be ‘temporary vaginismus.’”

Can Dilators Help?

Dilator therapy can be highly beneficial—though very arduous—for many women diagnosed with pelvic pain, or specifically vaginismus. Dilators come in silicone or in plastic; the silicone is more comfortable, though more expensive. The different sizes are intended to be inserted into the vagina and to sit inside for approximately ten to 15 minutes. After working yourself up to the largest size, penetration may be possible (but still not guaranteed).

At the age of 29, Donna found themselves wanting to finally lose their virginity. After years of disinterest in sex, they were ready. But once the moment came, penetration was difficult. After Googling “vaginal muscles too tight for sex,” they found online information, which caused a “crushing realization coupled with a sliver of hope that it was a thing and could apparently be fixed.”

After ordering dilators and self-diagnosing themselves in 2016, Donna attempted to push through their fear and confusion. Similar to my story, Donna wonders if they have had vaginismus since a very young age, but was unaware of its presence.

Painful sex is the first symptom that forces them to make an appointment with a doctor. For people with vaginismus, intercourse is frequently described as “hitting a wall.” It is essentially impossible, and pain—physical and emotional—comes from this intractable scenario.

Vaginismus makes it impossible for anything to penetrate through the contracted muscles. In the moment, when you’re trying to relax, and your partner is attempting to push through with a toy, finger, or phallic object, the pelvic muscles are tenacious. The more a partner pushes, the more unbearably excruciating the pain becomes. As a result, this pain retraumatizes your body—setting you back to square one in recovery.

Rena, who can only have one or two fingers inserted, talked of her fear of letting male partners down when she couldn’t have penetrative intercourse.

“I felt extremely uncomfortable [and] scared to let them down and try to explain that I couldn’t. Cis men often did not care and still tried to find ways to have penetrative sex with me, which was painful and honestly traumatizing.”

Although Rena’s vaginismus was supposed to be temporary, it is still present. She said that she isn’t sleeping with or dating cis-men at this point in her life anymore but instead dates people who are willing to understand her body. “I mostly just accepted that I don’t—or need—penetrative sex to enjoy sex,” they said.

The first doctor Hope went to go see about her issues with sex told her “that sometimes it takes a while” and that she should “try having sex as much as possible for a year and then come back if it still wasn’t working out.” The now-24-year-old was 18 at the time and decided to follow the doctor’s orders.

After visiting a pelvic pain specialist and being diagnosed with vaginismus, she started to look into visiting a sex therapist. “My sex therapist really validated my diagnosis and encouraged me to work with dilators at home. The dilators were okay, but after a while, I was hoping for something a little more. And I sought out another specialist who prescribed an lidocaine topical cream to apply during sex and then also recommended physical therapy.”

The cream numbs the pain during sex, which masks the pain without offering any substantial cure. Moreover, feeling the pain means that something is wrong and should be addressed. In short, for many people with the condition, numbing creams aren’t antidotes and only temporarily dispel fear rather than confront the problem.

How to Seek Treatment

If vaginismus is a psychological condition, that can seem even more terrifying. No known pill, no medication, and no prescribed treatment can eradicate its presence.

Donna was regularly seeing a counselor and explained that, “2017 was a year spent ignoring the vaginismus and working instead on other aspects of my recovery. I know now I was depressed and struggling with unresolved grief. I took to yoga and exploring alternative therapies, energy work, and developed a meditation practice.”

Yoga, mindfulness, and meditation in conjunction with regular dilator use seems to be the most beneficial method in recovering from vaginismus. However, it takes time and effort to essentially retrain your body to not associate a foreign object with pain.

“I feel isolated in my experience with vaginismus 99 percent of the time. I have only confided in a handful of friends about it,” said Hope. Since most doctors misdiagnose, ignore, or misinform patients about their pain, patients have had to turn to online communities where forums, Facebook groups, and internet articles offer solace.

Lately, women’s pain has been getting more attention with the release of Abby Norman’s memoir Ask Me About My Uterus detailing her journey with endometriosis, and recent articles and studies looking at the gender disparities in experience and treatment within medicine. People also are beginning to listen on a grassroots level.

“It makes me worried for all of the women out there who are struggling with this and who are going to their doctors and being told there isn’t anything that can be done for them, or worse, that it’s because of them or something they’re doing that this is happening to them. I think there needs to be more research and more of an effort in the medical field to help women who are dealing with vaginismus,” said Hope.

“Woman is a pain that never goes away” are the sinister words of the ancient Greek dramatist Menander. A 2001 study, “The Girl Who Cried Pain,” found that women’s reports of pain are taken less seriously and written off as “emotional” or “not real,” or in other words, modern-day hysteria. The sexism within the medical system lies in the proof that women are given more sedatives and men are given more pain medication. Women face longer emergency room waits for abdominal pain than men as well.

Donna said, “The lack of awareness and conversation about vaginismus is still a significant source of stress and upset for me …. It is such an incredibly nuanced, multifaceted, and unique condition for any woman dealing with it. The lack of conversation about it just builds an enormous wall around it before we even know it exists.”

A physician recently explained to me that I can write all of the articles in the world about vaginismus, and doctors will never pay attention to me. His words were not meant to be harsh. He was simply speaking the truth about a medical system that dismisses women’s pain.

However, it is imperative to speak on behalf of all of the people who are struggling with vaginismus every day. My inbox is proof of that, as people write for advice or to share long-form “thank yous” for possible hope in recovery. To find evidence that it is not “all in your head” is liberating. It’s necessary to have a community for one another when the medical community will not accept us, invite us in, or attempt to find any solution. Like our omnipresent pain, we, too, will not go away.