What We Can Learn From Halsey's Experience with Endometriosis

Abiya Syed
Jul 29, 2024
4 min read

Halsey on a golden throne, holding their son, Ender — The cover of Halsey's 2021 album, "If I Can't Have Love, I Want Power," released after the birth of their son, Ender

"If you suffer from chronic pain or a debilitating disease please know that I have found time to live a crazy, wild, rewarding life AND balance my treatment and I hope so much in my heart that you can too."

Halsey, a singer known for their distinctive singing voice, has made a significant impact on the music industry, winning multiple awards including Billboard Music Awards and receiving three Grammy nominations.[2] Their debut album, Badlands (2015), achieved critical and commercial success. They gained widespread recognition with "Closer," their chart-topping collaboration with The Chainsmokers. Subsequent albums like Hopeless Fountain Kingdom (2017) and Manic (2020) solidified their success, with the latter featuring their most commercially successful single, "Without Me." Named one of Time's 100 most influential people in 2020, Halsey is also known for their advocacy in endometriosis awareness, suicide prevention, sexual assault victim support, and racial justice.

Endometriosis is a painful gynaecological condition where the endometrium (the uterine lining) grows outside the uterus, on the ovaries, uterus, or other tissues in the pelvic region and rarely beyond.[3] Endometriosis tissue reacts to hormones and the menstrual cycle similar to the endometrium, which may cause pain at different points through the menstrual cycle and fertility complications. Endometriosis can cause cysts (endometriomas), scar tissue in the pelvis and beyond, and fibrous tissue (adhesions) which cause tissues and organs to stick to each other. Symptoms of the conditions include painful periods, heavy periods or bleeding between periods, infertility or sub-fertility, and pain whilst doing activities involving the pelvic region, such as bowel movements.

Halsey was diagnosed with endometriosis in 2016, after suffering from a miscarriage at 20 years old and seeking support for it at Planned Parenthood and then with an OB-GYN.[4] Recalling this experience in their speech at the Endometriosis Foundation of America, Halsey emphasized that they, "hope that more attention will come to research, to treatment, because 1 in 10 women is too many." Indeed, current research on the condition, though is improving, continues to be severely lacking, despite the condition affecting 5-10% of reproductive-age women.[5]

There are no conclusive tests to diagnose endometriosis apart from surgery and sometimes imaging, which means that it takes, on average, 8 years to achieve diagnosis. This is not to mention that the exact way endometriosis develops in the body is unknown, although current research has established genetic factors likely affect the condition. Additionally, there is no cure for endometriosis, only treatment options which include repeated surgeries, and hormonal treatments with many side-effects, which include restricting fertility.

There are many risk factors for endometriosis, including: never having given birth, experiencing menarche (starting your period) at an early age, having shorter menstrual cycles (less than 27 days), heavy and long (more than 7 days) menstrual periods, higher levels of estrogen, a greater lifetime exposure to estrogen, a low body mass index, or one or more relatives with endometriosis. However, there are two symptoms endometriosis patients experience most frequently and clearly, which lead to them seeking out medical support: painful periods and infertility.

"I had had painful periods my whole life," Halsey admitted, "But it was something I was kind of told is just something women in our family deal with. I was told I was sensitive and overdramatic." Indeed, the current cultural and medical landscape underestimates women's pain and physicians are more likely to attribute pain to psychological conditions than a genuine physical cause. And, because pain during periods is accepted as routine, it is difficult to establish whether painful menstruation is disordered or normal. However, it may be beneficial to visit a physician when your cramps last longer than two days, are not relieved by over-the-counter pain medication, occur outside your period, change in intensity over time, and cause other symptoms, such as heavy menstrual bleeding, vomiting, or fever.[6]

Halsey also spoke about their miscarriage at age 20. "And the biggest question was," they asked, "why me at 20 years old? Perfectly healthy, able-bodied, why would I have a miscarriage?" For those who don't experience significant pain, frequent miscarriages or difficulty getting pregnant raise the first questions, which lead to the path of diagnosing endometriosis. Infertility is one of the most significant symptoms of the condition.

"Part of endometriosis is that it can feel like a direct attack on your womanhood," Halsey said, a sentiment shared by many. It is why she chose an aggressive style of treatment, with several surgeries and freezing her eggs. As a result of those precautions and treatments, she was able to conceive and give birth to her son, Ender Ridley Aydin, who was born in July 2021.

Endometriosis patients have an extremely long journey towards diagnosing the condition. "There was a lot of misdiagnosis along the way," Halsey said. Like the singer, endometriosis patients are frequently misdiagnosed with Polycystic Ovary Syndrome (PCOS), or other conditions such as adenomyosis, irritable bowel syndrome (IBS), solitary rectal ulcer syndrome, inflammatory bowel disease, colorectal cancer, ischeic colitis, and cancer/metastatic tumors.[7] This is unfortunately exacerbated by the frequency of comorbidity (two conditions occuring simultaneously) of endometriosis with cancer, autoimmune conditions, asthma and other allergic conditions, migraines, and cardiovascular disease.[8] In fact, Halsey was treated for several autoimmune conditions including Ehlers-Danlos Syndrome, Sjogren's syndrome, lupus, and mast cell activation syndrome, as well as leukemia.[9]

Halsey's journey with endometriosis underscores the significant challenges and widespread misconceptions surrounding the condition. Diagnosed in 2016 after enduring severe pain and a miscarriage, Halsey has become an outspoken advocate for endometriosis awareness and research. They hope their openness will help others recognize that,"the pain they're living with is not normal," and encourage earlier diagnosis and treatment. Halsey stresses that struggling with endometriosis or any chronic illness, "is not something that makes you weak. It's about all that you have overcome, and every battle that you win helps you win the war."

Their advocacy sheds light on the need for improved medical understanding and support, as current research and treatment options remain limited. By sharing their personal experiences and emphasizing the importance of self-advocacy, Halsey aims to inspire others to seek the help they need and raise awareness about the reality of living with endometriosis. "Because I'm talking about it and because I'm not ashamed of it and because I'm proud of it, more women in this world can hopefully catch their diagnosis early or wake up one day and realize that the pain they're living with is not normal and that hopefully they can live a pain-free life because of it," they said.