A few decades ago, the average woman likely hadn’t heard of endometriosis. While research into the disease’s causes and treatments has gone on for decades, everyday women didn’t know that their chronic pelvic pain, extremely painful periods, and infertility might all be connected. This is part of the reason why, historically, women have suffered for 10 years or more before receiving an endo diagnosis. Celebrities with endometriosis coming forward to openly share their stories have played a part in propelling endo out of the shadows.
29-year-old singer Halsey is one recent example. She has undergone at least two surgeries to help alleviate endometriosis symptoms, plus egg freezing to hopefully preserve her ability to have additional children. In March, Halsey shared on social media that she’d had another (unspecified) endo procedure, just days before she planned to appear at the Grammys award ceremony.
Beneath a picture of herself wearing pajamas, with the waistline of disposable mesh underwear clearly visible, she wrote, “Back in diapers but at least they have little bows.” In a separate post, she observed, “The last time I attended the Grammys was 2017 and it was 3 days after I had my first Endometriosis surgery. I walked the carpet with my stitches still in 😅 As luck would have it, I’m attending tomorrow for the first time in years and I had surgery again (you guessed it) 3 days ago. Only posting this to say, if you see me be gentle lol I’m fragile. Fragile but excited :).”
Celebrities with endometriosis: raising awareness or spreading misinformation?
Celebrities play a powerful role in society. When they share about difficult experiences, like endometriosis, it can lead to a strong emotionally bonding experience for their fans. We all like to know that we are not alone in our struggles. Halsey’s “diaper” posts definitely struck a chord with her fans, with one woman on Reddit sharing “Getting my first laparoscopy surgery in 2 weeks. Endometriosis has run my life for the last decade and it’s so refreshing to see that I’m not alone in it.”
However, celebrities’ voices can also have damaging ripple effects, especially if they are spreading false information. This is particularly harmful when it comes to women’s health topics. Endometriosis is a painful condition, and every woman deserves to be treated with the most evidence-based care. If even celebrities are promoting care that is outdated or not evidence-based, some women will be more likely to succumb to less-than-appropriate treatment and/or not recognize their right to be informed participants in their healthcare.
What do we wish celebrities with endometriosis knew? We wish they knew and advocated for treatments that honor women’s fertility and optimize their hormonal and overall health.
What is the endometrium, and what is endometriosis?
The endometrium is the lining of the uterus that is built up and shed every cycle due to the hormonal fluctuations of estrogen and progesterone. Endometriosis is an inflammatory disease where endometrial-like tissue grows outside of the uterus.
Because endometriosis is made of tissue like the endometrium, it reacts similarly to hormonal fluctuations. This means it also sheds and builds up each cycle. However, since endometriosis tissue is located outside of (or on the outside of) the uterus, it does not exit the body via the vagina in the same way as the endometrium, which sheds during your period. The result is a painful condition causing internal scar tissue, adhesions, and even infertility.
What are the symptoms of endometriosis?
The number one symptom of endometriosis is pain: painful sex, painful periods, and even painful ovulation [1] (although it’s also important to realize that some women with endometriosis do not have pain). Although often described as common, none of these symptoms are normal. Other symptoms include heavy menstrual bleeding, gastrointestinal issues, and even urinary incontinence. Finally, infertility is a frequent sign of endometriosis. More research is needed to target each symptom and what it specifically indicates. If you are experiencing any of these symptoms, contact a doctor, especially one in restorative reproductive medicine, who will treat your symptoms at their roots.
Celebrities and their endo treatments: Why hormonal birth control and hysterectomies miss the mark
Women with endometriosis often suffer symptoms for a decade or more before they finally receive a diagnosis. This delayed treatment may be due, in part, to the misconceptions that painful or irregular periods are “normal” and that the best treatment is to prescribe hormonal birth control (HBC).
Actress Lena Dunham and Halsey have both previously mentioned taking HBC for their endo pain. Unfortunately, HBC can no more fix endo than it can “regulate” cycles. Instead, HBC decreases endo pain for about ⅔ of users because the timed release of tiny doses of synthetic hormones stops the menstrual cycle altogether [2]. This both deprives women of the overall health benefits of ovulation and “Band-Aids” endo symptoms without fixing the underlying problem. Case in point: when a woman with endo stops taking birth control, her symptoms are likely to return. This is why so many women only find out they have endometriosis after getting off of HBC in an effort to get pregnant, only to then struggle with infertility.
Other celebrities have directly or indirectly perpetuated the misconception that a hysterectomy cures endometriosis. In a hysterectomy, the uterus is removed but the ovaries and Fallopian tubes are intact. Actress Lena Dunham told Vogue in 2018 that her endo pain was so bad that she went to the hospital and refused to leave until they took her uterus out. Like Dunham, comedian Amy Schumer also underwent a hysterectomy for endometriosis. But removal of the uterus may not help pain caused by endometriosis tissue growing in or on other parts of the body. Plus, if the ovaries are left intact (in an effort to keep a woman from prematurely entering menopause), they will still release estrogen, which may promote inflammation and cause pain.
Excision surgery may be your best bet for true endo relief–but skip the egg freezing
Excision surgery (which some fans suspect is the endometriosis surgery Halsey underwent) is currently the most effective treatment for endometriosis. This surgery involves targeting the tissue, removing it, and working to address the underlying cause. The other surgical procedures for endo can either harm or permanently end fertility, and in fact Amy Schumer unsuccessfully tried in vitro fertilization (IVF) before her hysterectomy. But excision surgery can help women to go on to naturally achieve pregnancy–so it’s not clear why Halsey also felt the need to undergo egg retrieval and freezing, which carries its own risks, and has a relatively low risk of resulting in a live birth.
Women with endometriosis may be less likely to seek excision surgery because it has to be performed by doctors with extensive, specialized training, of which there are few. So if this was, in fact, the procedure Halsey had, we applaud her choice and her willingness to share about it with her fans. Still, it’s important to acknowledge that endometriosis has no known cure, so regardless of your treatment, endometriosis can return. Your age, the severity and location of the endometriosis adhesions all impact recurrence risk.
The bottom line
How do we want celebrities to change their tune when it comes to endometriosis? First off, we want Halsey and every other female celebrity with endometriosis to understand that the menstrual cycle is a fifth vital sign. Fertility awareness charting helps a teen or adult woman become body literate, meaning that she knows what’s normal (or not) for menstrual cycles. Girls entering puberty should be taught, whether through our Mothers of (Pre) Teens program or another age-appropriate course, that period pain that affects daily activities is not normal and shouldn’t just be Band-Aided with birth control. In fact, charting could potentially rapidly accelerate time to endo diagnosis, down from the average of 10 years (from symptom onset) to as early as the teen years.
We also want celebrities with endo to know that ovulation, which doesn’t occur when a woman takes hormonal birth control, has bone, brain, breast, heart, and immune system benefits. We want celebrities to shoot straight with women about the tradeoffs of taking HBC to decrease endo symptoms, including increased risk of a variety of issues ranging from low libido to depression to blood clots to breast cancer to liver tumors. Finally, we want them to know that early detection and real treatment of endo can help heal and preserve fertility–no risky assisted reproductive technologies like egg freezing and in vitro fertilization (IVF) required.
References:
[1] Mitchell JB, Chetty S, Kathrada F. Progestins in the symptomatic management of endometriosis: a meta-analysis on their effectiveness and safety. BMC Womens Health. 2022 Dec 17;22(1):526. doi: 10.1186/s12905-022-02122-0. PMID: 36528558; PMCID: PMC10127994. [2] Zhang P, Wang G. Progesterone Resistance in Endometriosis: Current Evidence and Putative Mechanisms. Int J Mol Sci. 2023 Apr 10;24(8):6992. doi: 10.3390/ijms24086992. PMID: 37108154; PMCID: PMC10138736.Additional Reading:
If you’re considering a hysterectomy for endometriosis, read this first
