Comedian Amy Vreeke is one of the approximately 176 million women worldwide living with endometriosis. Like many of those women, she spent years suffering through bowel problems, intense period pain and discomfort during sex ― all while being misdiagnosed.
In 2015, Lena Dunham ― or rather, her book Not That Kind of Girl: A Young Woman Tells You What She’s ‘Learned’ ― came into the picture.
“I was reading her book and there’s a chapter in it where she talks about endometriosis, how it feels to have it and her experience with it,” Vreeke told HuffPost. “That’s what made me realize I had it. It was a strange moment where I was like, ‘Oh, my God. This is me. It’s describing how I feel for the first time.’ I told my doctors I thought that’s what it was and they did a few tests. A few months later I had a laparoscopy, where they remove cells that are not supposed to be there.”
Endometriosis is a condition of the female reproductive system that affects 1 in 10 women worldwide, but takes on average 10 years to diagnose, according to the Endometriosis Foundation of America. Symptoms, such as the ones Vreeke experienced, vary greatly between individuals.
Vreeke was diagnosed at 23, but experienced symptoms many years before that. She told HuffPost she believes the variety and nature of symptoms partly explain why endometriosis so often goes misdiagnosed.
“I know I didn’t go to the doctor for a while because I was embarrassed ― and made to feel like I should be embarrassed,” she said. “I think that happens a lot when it comes to things that concern women’s health and periods, things that are completely natural but cause a bit of awkwardness and embarrassment, which is ridiculous.”
Now, Vreeke is using her comedy to combat that stigma. She is in the process of writing a play, “2016: The Year My Vagina Tried To Kill Me,” about having the condition, and she regularly talks about the condition in her routine. Her goal is not only to spread awareness to others but to help make the millions of women suffering from pain every single day feel less alone.
“Women don’t feel comfortable talking about it, which is why I’m kind of trying to help with that in terms of my comedy,” she said. “It needs to be a big conversation and people need to feel more comfortable discussing it, even if it’s just with their doctors.”
Vreeke said society’s tendency to write off complaints about period-related pain as normal or even overdramatic is another reason women internalize their suffering. She said that as a young person experiencing intense menstrual pain, she assumed her threshold for pain was just lower than everyone else’s. She carried that feeling into adulthood, when the condition began to affect her sex life.
“I found it obviously painful to have sex, which was an issue with my first boyfriend,” she said. “He was really lovely, but it’s obviously hard when you’re young and falling in love with someone and that’s such a big part of it.”
She was, as many young people are, too embarrassed to talk about the issues she was having with her partner, which in turn put a strain on the relationship and left her wondering if perhaps sex simply wasn’t meant to be enjoyable.
“I didn’t really talk about it at all, and felt like nobody should know something was wrong with me,” she said. “I wasn’t as honest with him as I should have been. Also, when you’re just starting to have sex, you don’t have anything to compare it to, so I was like, ‘Oh, this must just be how it is.’”
In college, her relationship with sex was still uncomfortable. “It was always an awkward thing for me,” she said. “I had to get very drunk and it wasn’t healthy.”
Endometriosis causes uterine lining to grow outside the uterus. As a result, pain during sex varies depending on where in the body it is growing. “If the misplaced endometrial tissue is behind the vagina and the lower part of the uterus, and affecting uterine nerves or ligaments, intercourse is likely to be more painful because thrusting during sex pushes and pulls at the growths,” according to Everyday Health.
Today, Vreeke is engaged to a man she met right around the time she was diagnosed. He has stood by her side through the diagnosis, surgery and efforts on Vreeke’s part to manage the pain through diet and exercise.
“It’s really nice to have met someone who I care so much about and also be able to enjoy that side of a relationship,” she said. “Obviously there are still problems sometimes, but now that I know what it is, I can communicate and deal with it a lot better.”
“It’s been quite cathartic to be able to talk about it on stage after years of not really talking about it at all or understanding it.”
Vreeke told HuffPost that confronting the condition with humor has helped her find her voice in order to help others.
“It’s been quite cathartic to be able to talk about it on stage after years of not really talking about it at all or understanding it,” she said. “It’s a really positive thing that I get to reach other women and hopefully help them, either by having a laugh or encouraging them to talk more seriously about it as well.”
As far as those who might feel uncomfortable or put off by someone being so open and honest? She has some choice words for them.
“There are people who are like, ‘Nobody cares about your vagina,’” she said. “And I’m like, ‘Well, you don’t care and that’s fine. Just go watch another comedian.’”
We know we’ll certainly be watching for what’s to come next. Follow Vreeke on Twitter to see for yourself.