Shedding Light on Reproductive Health: Understanding Adenomyosis

Kat François (courtesy of Rob Covell, Sloetry Photography)
Kat François (courtesy of Rob Covell, Sloetry Photography)

U.K. native Kat François, 44, is a reputable performance artist, writer and playwright, best known for her televised appearances on the BBC3 Poetry Slam Championships in 2004 and the World Poetry Slam Championships in Rotterdam, the Netherlands, in 2005. But despite her accolades and extensive global résumé, we initially found ourselves bonding over our reproductive-health issues.

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“A-deno-who?” François recalled asking her doctor when she was diagnosed with adenomyosis almost three years ago. Since starting her menses at 10 years old, she’d become accustomed to painfully long cycles that sometimes stimulated up to 21 pounds of weight loss within days.

“I couldn’t enjoy the weight loss because I didn’t even look good. It’s a sick look,” she said.

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Understanding adenomyosis requires you to understand endometriosis. Endometriosis surfaces on the inner lining of the uterus (the endometrium), which causes numerous problems, ranging from rectal pain to fatigue. In rare cases, it can even be located behind the eyes, lungs and brain.

Adenomyosis occurs when the endometrial tissue of the womb grows into and within the muscle wall. These conditions are often accompanied by fibroids—something Kat and I have in common—and are three times more likely to occur in black women. In fact, 80-90 percent of black women are expected to develop fibroids by age 50.

Despite expressing her concerns to medical professionals, François’ diagnosis didn’t occur until she met with an Irish doctor who ran several in-depth examinations. When she and her partner, photographer Rob Covell, began making plans to expand their family, François quickly realized that her condition had been masked by her use of hormonal contraceptives.

Birth control is a common, temporary remedy prescribed by gynecologists to treat painful menses. While injections reduced her flow for years, without them, she was forced to endure weekslong agonizing pain. When asked to describe a day suffering with adenomyosis, she used the term “animalistic.”

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“There’s no other way to describe this condition when you are bleeding profusely, puking up like some rabid animal, in pain so badly you want to smash your head in between the walls and turn off the lights,” she said.

Kat François (courtesy of Rob Covell, Sloetry Photography)
Kat François (courtesy of Rob Covell, Sloetry Photography)
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François and I exchanged emotional stories about accidents due to our cycles and how it affected our relationships. We’re both fortunate to have compassionate partners who aid us through those vulnerable moments, but many aren’t as lucky.

“[Rob and I] were in a hotel a few weeks back in Berlin and I couldn’t lie in the hotel bed. Can you imagine that? My man is lying in the hotel bed and I’m lying on the floor because I don’t want to mess up [the hotel] sheets and bed.”

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As Covell engaged in dialogue with François, he reminded her of an incident in Norway, where she’d been unable to leave their bedroom to attend a party in the very next room. On another occasion, the couple were out in the street, and she bled so profusely that anyone walking by would’ve mistaken her condition for a miscarriage. She’d long considered herself “fortunate” for living minutes away from a hospital; a place that became like a second home. Enduring injections and being pumped with bags of fluid because of dehydration made her feel as if she were losing her mind.

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“If I was a woman who was dealing with this by myself, without family or the support of a partner, this might be a different story,” she said.

Reproductive diseases like adenomyosis can rob you of your libido and make sex painful. While there were brief, lighthearted moments during their conversation, Covell noted forcing himself to be “desensitized” in order to respect Francois’ wishes.

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“All of the pain that she’s gone through, I noticed that I’ve become desensitized from it. It quite upsets me, but I have to do it. It’s so bad that the only way that I deal with it is to not get emotionally involved with it, which is how I used to be. It would help me decide on whether we need to go to the ER. Now it’s to a point where she can be left in a room when she wants to be left alone,” he said.

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François runs a motivational Facebook fitness group for adults, where she practices and advocates others to reduce sugar, wheat and processed foods. Although her lifestyle changes and medical intervention don’t make her condition perfect, they aid in making her condition manageable. She also teaches personal, social, health and economic (PSHE) education to youths in the United Kingdom, where she encourages young women to “fight tooth and nail” about their reproductive rights. François encourages parents to gradually build up a dialogue earlier on to reduce emotional trauma.

With no cure for adenomyosis to date, she looks forward to menopause.

“I cannot wait for the day that I stop bleeding. I’m going to make a bonfire in the garden, bring all of the sanitary towels and tampons, run around naked, screaming like a motherfucking banshee, and saying, ‘I’m free!’ I’ve had my period since I was 10, and cannot wait until I’m 60. I will boycott my vagina. I want my vagina back.”

Latoya Shauntay Snell is a chef, photographer and founder of RunningFatChef, a food-and-fitness blog that documents her experiences as a plus-size ultramarathoner and obstacle-course racer.

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DISCUSSION

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Can I just offer a quick clarification/more indepth definition of endometriosis? I don’t want to be that person because I know this article is about adenomyosis and explaining either disease in a way that makes sense to people who don’t have them can be frustrating at best. However, the definition of endo is...not great.

Understanding adenomyosis requires you to understand endometriosis. Endometriosis surfaces on the inner lining of the uterus (the endometrium), which causes numerous problems, ranging from rectal pain to physical fatigue in several areas of your body. In rare cases, it can even be located behind the eyes, lungs and brain.

I don’t know if maybe it’s just a copy error or what, but endometriosis is when endometrial-like tissue grows outside of the uterus (the above almost makes it sound like it’s when it grows on the inner lining).

So, for comparison, in adenomyosis it grows into the muscle wall, but with endo it’s outside of the uterus . This is why, generally (very generally), adenomyosis tends to presents with abdominal pain and bleeding while endometriosis presents with back and rectal pain. (Again, that’s pretty general since a lot of the symptoms between the two crossover.)

Sorry for being picky. This is a great article and more awareness for adenomyosis (and/or endometriosis) is always good.