The field of gynaecology is a minefield. Historically under-funded and under-researched, it feels as if, even in the present day, there are gaping holes in gynaecological knowledge and education. And while some disorders have garnered awareness that easily attracts public attention, interest and column inches, others remain practically unknown regardless of their prevalence. Adenomyosis is one such condition.
Referred to by some as the ‘evil sister’ of endometriosis, it causes the endometrial tissue in the lining of the uterus to grow into the muscle of the uterus. For some, this results in debilitating pelvic pain and excessive menstrual bleeding, while many others will have adenomyosis and won’t know it because they’re symptomless.
Though it’s widely purported that adenomyosis affects one in 10 women — the same odds as endometriosis — this figure varies considerably depending on where you look. Inconsistencies aside, research dictates that it’s a common condition which many women have, so why do so few people know about it?
Dr Joel Naftalin is a Consultant Gynaecologist at University College London Hospitals who studied adenomyosis for his post doctorate degree in 2012, and still has an active research interest in the disorder. “There’s so much less understood about [adenomyosis than endometriosis], and that means it’s quite a challenging package to sell,” he says. “If we don’t even know whether a condition is associated with heavy periods or painful periods or fertility, it’s a difficult sell to tell people that they may or may not have this condition.
“With endometriosis it feels a bit more concrete. Most people know that endometriosis equals pain, and even that’s an oversimplification. Nevertheless, when I mention endometriosis to patients, they think of either pain or potentially difficulty conceiving.”
When Tanya Simon-Hall was diagnosed with adenomyosis in 2020, she was told over the phone that it was ‘nothing to worry about’. “I hung up and I thought, nah what’s this? Adeno-what? I couldn’t even pronounce it,” she tells Glamour. Tanya, who also has endometriosis, began researching adenomyosis and looking for other women who have the condition. Disappointed by the stark lack of information available, she decided to form The Adeno Gang, a resource which educates, advocates and provides a safe space for women with adenomyosis.
“I typed adenomyosis in as a hashtag on Instagram and I found that it wasn’t only me and a couple of other people that had it. There’s loads of women out there,” she says. “Fast forward about a year, I was still just doing advocacy when I came across the Wellbeing of Women charity which invited me to Parliament to speak about the inequalities of menstrual health. That’s when I started posting more. At that time, adenomyosis wasn’t even on the NHS website. It was like it didn’t exist.”
Sarina made this discovery when she was diagnosed with adenomyosis in 2020 at age 32. She says: “My first thought was to go to the NHS website, because that’s what you do when you find out you’ve got something going on, but there was nothing there.” She’d struggled with excruciating periods since she was a child, and before receiving her diagnosis she’d been having a period every nine days for around four months. “I started my period when I was 10, and I was always in pain. My mum used to take me back and forth to the hospital because I used to get migraines, I used to vomit and I’d get dizzy spells.
“I get pain on the left side of my lower back. It’s like a muscle gets really tight. It also travels round into my pelvis which feels like it’s frozen sometimes and quite heavy. Imagine walking around with weights [attached to your hips] all day. I also get shooting pains down my legs, so I can’t really walk, especially when I’m on my period.”