Thursday, November 7, 2024

What Living With Vaginismus Is Really Like

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Welcome to Doing It, a column where sex educator Varuna Srinivasan explores the deep connections between sex and emotions. This month, they speak with experts and people living with vaginismus about the realities of living with this under-researched condition.

The vagina is a remarkable organ. It connects the uterus to the outside of the body. In a near constant state of change, the vagina is capable of pushing out a baby, regulating its own pH, and getting rid of any blood or discharge that the body doesn’t need.

When aroused, it has the power to self lubricate and elongate, making the process of penetration pleasurable. But sometimes, despite these accommodations, women can experience pain or discomfort during sex. According to the American College of Obstetricians and Gynecologists (ACOG), nearly 3 out of 4 women experience pain during sex at some point in their lives. These one-off instances can be attributed to many different things, like vaginal dryness or a particular position. As long as these moments of pain are rare, they’re typically nothing to worry about.

However, consistently experiencing pain, before, during or after sex is a situation that warrants more attention. According to the ACOG, sexual pain includes two conditions: dyspareunia, which is essentially an umbrella term for painful sex, and vaginismus, which is the involuntary spasmodic tensing of the muscles of the vagina. Vaginismus can make any type of penetration, including the insertion of tampons or digital exams at a doctor’s office, painful. The severity of the condition can vary, making penetration anywhere from somewhat difficult (perhaps inserting a tampon is fine, but having penetrative sex causes pain) to almost impossible under any circumstance.

The ACOG estimates that vaginismus affects 1 to 6% of women. Most studies and medical articles state that the cause of vaginismus is “unknown,” which likely refers more to the exact biological mechanism causing the involuntary spasms. However, experts are in agreement that these spasms are likely a side effect that can be caused by a variety of physical, psychological, or sexual factors.

The symptoms of vaginismus vary, but can include burning, tension, or pain during penetration; avoidance or fear of sex; and tightening of the vagina. The symptoms themselves can, in a way, make the condition worse. “These symptoms often lead to increased apprehension or fear of penetration in anticipation of pain,” says Elizabeth Perri, psyD, a licensed clinical psychologist and certified sex therapist.

Vaginismus is something that can only be diagnosed in a doctor’s office after a thorough medical history and physical examination. Board-certified ob-gyn Shoma Datta-Thomas, MD, encourages people to consult with health care providers familiar with the diagnosis to help develop a treatment plan.

The treatment for vaginismus varies based on the individual and what’s causing the condition for them. A doctor may prescribe medications for underlying infections, surgery for specific gynecological issues, or a mix of physical therapy and sex therapy for psychosocial causes. The latter typically involves “pelvic floor therapy combined with therapies like vaginal dilators or prescription vaginal suppositories for muscle relaxation,” Dr. Datta-Thomas adds.

Dilators are silicone tubes that range between different sizes, both in length and girth, with the aim of training the muscles of the vagina. The smallest dilator can be as thin as a pencil, inserted several times a week for a couple of minutes or as recommended by a professional.

“While there is no specific timeline [for treatment], we encourage patients to move through the set of dilators from smallest to largest one, based on their comfort and tolerance,” Dr. Datta-Thomas says. “This means being able to use a dilator of a particular size without experiencing pain.”

In addition to the physical symptoms associated with vaginismus, dealing with this condition can also take a mental toll. This condition is under researched, and studies have shown that women who do try to seek help are often misdiagnosed.

People who have vaginismus are more likely to suffer from depression, anxiety and suicidal ideation. They often struggle with issues related to self-esteem and image which is why, in addition to physical therapy, vaginismus patients are highly encouraged to seek out sex therapy and engage in a range of cognitive behavioral therapy techniques aimed at muscle relaxation.

“A sex therapist can help provide education about vaginismus, refer to appropriate medical professionals, teach relaxation techniques, and address any feelings of distress associated with the disorder,” Dr. Perri says. “I teach mindfulness strategies to help bring awareness to thoughts and feelings, and deep breathing techniques to aid in relaxation. I also often refer patients to ob-gyns who specialize in pelvic pain disorders (for a thorough medical evaluation) and/or pelvic floor physical therapists (to help the patient regain control of pelvic floor muscles).”

Every person who has vaginismus has a unique journey. To understand more, I spoke to four people who shared details on their diagnosis, treatment, and how having vaginismus has impacted their lives.

Shania, 24, UK

I’ve been dealing with vaginismus for around five years, which is when I started seeing my then-boyfriend/now-husband. We did not try to have sexual intercourse until we were married because everything felt really painful. After we got married, it was very much the same, so I went to see the gynecologist.

He said my anatomy was normal and recommended some lidocaine cream to numb the area. (PS: This does not work!) I was then referred to a sexual health doctor who is also a therapist, and they have been amazing. I have been having monthly sessions while using vaginal trainers, which I have made a lot of progress with.

It is really easy to compare yourself to other people. Sometimes, I feel like less of a person because I still haven’t had sexual intercourse, but my therapist has helped me in trying to deal with some of the negative emotions that are associated with having vaginismus.

Aura, 28, US

Although the diagnosis gave me closure and I finally felt heard, it took me a while to accept that reality and be ready to try out therapies and other things suggested by my doctor. Women’s health is such a little explored concept that something like vaginismus, which can very well affect our lives, is not talked about. We often don’t know about it unless we specifically go looking for that information.

Vaginismus also plays with body image and self acceptance. I think the treatment for something like vaginismus should not only include physical therapy but also mental therapy. Getting the pain, shame and weirdness associated with it out of my body through my words feels more empowering. Importantly, talking about this with my partner helps me be more vulnerable around him and him knowing this helps for various reasons.

Learning that you have vaginismus involves a heavy load of work. That said, there are many ways to overcome that initial shock. I have been able to use my therapy tools to accept it and thereby love myself a bit more. This diagnosis paved a way to know more about my body. Talking about it with your partner will help both of you find common ground in sex life and other aspects of your relationship. It also strengthens your bond.

Find a way to view vaginismus as a little road bump you must drive over rather than as a huge boulder that has blocked your path and view of the world.

Amina, 35, UK

I always got really anxious when it came to penetrative sex. I also actively avoided getting a pap smear test for years. When I eventually had my first one, I panicked and wouldn’t let the nurse finish, so the nurse asked me if I was religious or if I had been sexually assaulted in the past (neither, in my case). I have quite a high pain threshold and have no issues with [things like] needles or dentistry that a lot of people have. Other than this, I am a fairly “easy” patient. All of the above significantly impacted my mental health. I felt ashamed that I couldn’t bear the exam and was worried I would be alone forever because any guy would get sick of me (some guys did.)

I went to multiple doctors and none of them put me at ease. Nobody ever gave me a name for it. I was just told this was rare and that most women find penetrative sex enjoyable. I was never offered dilators or therapy or anything else. I was mainly told to just relax.

It wasn’t until the Netflix show Sex Education came out that I had a name for my presentation/condition. [Editor’s note: In the season 2 finale, one of the show’s characters tells a partner she has vaginismus.] It gave me huge relief, but I shouldn’t have to get health advice from a fictional show on a streaming site. Sadly, I believe that if this were a cis male condition, it would probably be supported a lot better and not just spoken of as “rare.”

Simi, 32, NYC

In my experience, vaginismus is a spectrum so no two cases are exactly the same. Often the emotional toll it takes makes it harder to navigate the situation.

I was diagnosed with vaginismus in 2018. I was totally lost because I never had issues with sex before and [my symptoms] started randomly. I was cured of it in 2022, but through the four years of dealing with it I experienced a lot of mental and emotional trauma. My relationship suffered the most because my partner at the time could not support me emotionally the way that I needed.

I was working with a pelvic floor therapist but I could never get myself to dilate at home because I couldn’t use any of the small size dilators. I felt broken and like less of a woman. I also began to question if I would ever have a normal, pain-free sex life and have children in the future

The treatment that cured me was getting Botox injections in my vaginal muscles. This allowed me to physically have pain free sex, though I still needed a lot of mental prep to have sex. Seeking treatment was life changing and I wish I did it sooner. I unnecessarily suffered for too long.

I was lucky that I got really good pelvic floor therapists and a doctor who really took the time to listen to me and help me. I would like to tell people that there is light at the end of the road and it does get better. It’s as much an emotional and mental issue as physical. Seeking the right medical team at the start can help you immensely.


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