Vaginismus is about ‘autonomy and sexual pleasure’
Speaking to Health-e News, three women share their journeys with vaginismus, which includes muscle spasms, discomfort, burning and pain during penetrative sex, writes Dalaine Krige.
“I got my first period when I was 16,” says Kassie*. “I first realised there was a problem when I couldn’t get a tampon in.” After several attempts she gave up after feeling a “pinching, stabbing pain” in her vagina, and what felt like a barrier.
“Everyone told me I was just clenching and not relaxing, and that it would happen eventually. It did not,” says Kassie. “Neither did sex.”
According to Dr Elna Rudolph, medical doctor, sexologist and clinical head of My Sexual Health, vaginismus is sexual pain associated with muscle spasms and issues surrounding penetration. It causes discomfort, burning, pain, penetration problems, or complete inability to have intercourse.
“One in five women have pain during sex,” says Rudolph. “This is not normal. Many women continue to have painful sex for years. They don’t know that there is help or they have asked for help and it did not work.”
Kassie is a 19-year-old massage therapist living in the USA. She was diagnosed with primary vaginismus after exploratory surgery ruled out any anatomical problems.
When a woman has never been able to have pain-free sexual intercourse due to penetration difficulties, it is classified as primary vaginismus. When a woman develops vaginismus after having previously enjoyed problem-free sex, it is classified as secondary vaginismus.
Kassie explains that some days are better than others but that she often feels broken and like there’s something wrong with her. “My body can’t perform a simple function it was designed to do,” she says.
Kassie entered her first serious relationship when she was 17 and after numerous failed attempts at trying to have sex, the relationship ended.
Kassie eventually brought it up with a nurse, who tried to put a speculum inside her vagina to see what was causing the pain, which resulted in pain and screaming. “She looked at me like I was crazy,” says Kassie.
Kassie saw a doctor who booked exploratory surgery.
“I woke up thinking my problem was fixed and I’d have a regular vagina and that I’d finally be able to have sex,” she says. “I was extremely disappointed to find out there’s anatomically nothing wrong with me. That news was devastating.”
More common than not
Since her diagnosis, she has managed to insert a tampon but is still unable to have successful penetrative sex. “My boyfriend has been extremely patient with me but somehow I still feel guilty and like this is my fault,” she says.
She is hoping that treatment with a pelvic floor therapist will help cure her. Physical therapy is one of the most common treatment plans that women diagnosed with this condition undergo.
“I don’t feel like the medical community understands this condition because it hasn’t been normalised. I feel like they could do better by being more understanding and suggesting alternative methods rather than throwing exploratory surgeries or medications at a problem.”
Kassie wishes that she had known about this condition at the start of her journey towards getting a diagnosis. She now knows it’s more common than she thought and has found an online support community.
According to Rudolph, the true incidence of vaginismus is unknown, although it is thought to affect 5– 17 % of women in a clinical setting.
Rachel* is 33-years-old and works in customer support in the Philippines.
She suspected something was amiss when she tried to have sex with her boyfriend for the first time. While she says she wasn’t forced, she believes he was not as gentle as he could have been.
This, coupled with the fact that she was on her period and that she comes from a conservative family, led to a very painful experience.
“I was disappointed because what happened was not what I expected,” she says. “He became aggressive and demanded that we have sex again, but I wasn’t comfortable doing it. In the end, to please him because, I agreed. But when we tried the second time, he couldn’t penetrate me at all.”
Rachel, while watching Netflix’s Sex Education series, felt a connection to a character who suffered with vaginismus on the show, and eventually saw a doctor who confirmed that her self-diagnosis may be correct and referred her to a physical therapist. She hasn’t been able to start her treatment plan since the Covid-19 pandemic led to a lockdown in her country.
After doing research, she now believes that her first sexual experience was coercive and possibly one of the triggers for her condition.
Dr Tlaleng Mofokeng, sexual and reproductive health doctor, explains that survivors of sexual trauma, or any trauma, may develop secondary vaginismus.
Struggles to accept
Rachel is still struggling to accept her new reality. “I feel incomplete and alone,” she says. “I keep asking why this is happening to me and what my future is going to look like. I’m in my 30s and I want a partner and children. I don’t know if that will ever happen now”.
Mofokeng notes that there are cultural and religious expectations that set the relationship with women with their vagina. “The underlying cultural and religious factors make it that much harder to overcome the diagnosis through therapy,” she says.
For Rachel, being born into a conservative and religious family has made it difficult to open about her situation.
“I called my mom in tears and she told me not to tell anyone, including my sisters, because they will lose respect for me,” says Rachel. “I decided to stop talking to people about it.”
Mofokeng stresses the importance of counselling when receiving this diagnosis. “It is important because you have to be conscious of that anxiety and learn how to balance your own pleasure and the expectations of your relationship and partner.”
Physical therapy helps
Sarah* is 26-years-old and works in advertising in South Africa. She was diagnosed with secondary vaginismus when she was 22-years-old.
“I started having sex when I was 18 and it was never what I expected it to be,” she says. “I could never comfortably use tampons, but I wrote it off as personal preference. The bad sex I thought was just that – bad.”
“When I was 22-years-old I tried having sex with a guy I was seeing and I ended up in the foetal position,” she says. “It was the weirdest kind of pain.”
“Luckily I could speak to my parents about it and they were really supportive. I ended up seeing a specialist and she diagnosed me with vulvodynia and vestibulodynia.”
This diagnosis was followed by months of physical therapy and counselling.
“With physical therapy, the physiotherapist literally helps you insert dilators into your vagina and helps you work out the spasms in your vagina,” says Sarah. “It took a while to get used to but luckily the physical therapists I saw were super professional.”
“I remember crying on the way home after every appointment,” she says. “Not because it was that painful but because I couldn’t reconcile this new person I had become with the person that I thought I was.”
Sarah always considered herself sex positive and this diagnosis forced her to confront her fear of penetration and a pain that she couldn’t understand.
‘Good, pain-free sex’
Today, she is able to have sex with her long-term partner. “It’s not always easy and it took a lot of work to be able to have good, pain-free sex”.
Mofokeng explains that treatment has been successful for many women. “You see amazing results when partners are really committed to the therapy process. They see it as a problem for both of them to manage, not as just the women’s issue.” she says.
Sarah has since learned to take her pain more seriously. “In the past I pushed through because I hoped it would get better,” she says. “And it only got worse. We should never normalise pain during sex. If it hurts, you’re either not using enough lube or there’s a problem.”
Mofokeng also believes much of this condition stems from the issue of basic autonomy – the right for you to make decisions about your own body.
“There’s this idea that women must not enjoy sex – that sex is something that is done to women,” she says. “This erodes the autonomy of the woman. When you talk about patriarchy and misogyny, we talk about these concepts as abstract, but this is how they manifest themselves in our lives and in our bodies.”
Rudolph urges women to see themselves as equal to men. “Claim your right to sexual pleasure. It is yours for the taking!”
“Awareness is the key,” says Rachel. “Women should not be afraid to go to the doctor and be vocal about their pain.” – Health-e News
(*) Surnames withheld for anonymity