Halsey's Endometriosis Journey: What Clinicians Should Tell Their Patients

Why Halsey Matters in the Exam Room

When a celebrity speaks plainly about a painful, poorly understood condition, your waiting room fills with newly self-aware patients. Halsey, the Grammy-nominated artist born Ashley Frangipane, has discussed her endometriosis diagnosis in multiple interviews, on social media, and during her 2022 documentary-style content, describing surgeries, pregnancy complications, and the years she spent being dismissed before receiving a diagnosis. She has also spoken about lupus, Ehlers-Danlos syndrome, and postural orthostatic tachycardia syndrome, illustrating that endometriosis rarely travels alone.

That visibility has real clinical value. A 2023 analysis published in the Journal of Endometriosis and Uterine Disorders found that celebrity disclosure events are associated with measurable spikes in online symptom searches and clinic appointment requests. The "Halsey effect" is not gossip. It is an entry point for earlier diagnosis.

Your job is to meet the patient where she is and convert her media-driven curiosity into a structured diagnostic conversation.

What Endometriosis Actually Is (and Why It Is Still Missed)

Endometriosis is the presence of endometrial-like tissue outside the uterine cavity, most commonly on the ovaries, fallopian tubes, bladder, bowel, and peritoneum. That tissue responds to the hormonal cycle just as the uterine lining does: it proliferates, breaks down, and bleeds, but has nowhere to drain. The result is inflammation, adhesions, and pain that is often cyclical but not always.

Approximately 190 million women and girls globally are affected, making it one of the most common gynecological conditions. Yet the average time from first symptom to confirmed diagnosis remains 7 to 10 years in high-income countries, a figure that has barely moved in two decades despite improved imaging and biomarker research.

Why the Delay Persists

Several factors compound the diagnostic gap:

• Pain normalization. Clinicians and patients alike still frame severe dysmenorrhea as expected. Halsey has described being told her pain was normal for years before receiving surgical confirmation.
• Symptom heterogeneity. Bladder pain, bowel changes, shoulder tip pain from diaphragmatic lesions, and fatigue are not obviously gynecological.
• Imaging limitations. Transvaginal ultrasound detects ovarian endometriomas reliably but misses superficial peritoneal disease. MRI has higher sensitivity for deep infiltrating endometriosis but is not universally available or reimbursed.
• Socioeconomic and racial disparities. Black women are diagnosed at lower rates despite similar or higher prevalence, a documented inequity driven by pain dismissal in clinical encounters.

The Diagnostic Standard

Laparoscopy with histological confirmation of endometrial glands and stroma outside the uterus remains the gold standard per ACOG Practice Bulletin 114. Clinical diagnosis (presumptive treatment based on history and imaging) is increasingly accepted in primary care settings to reduce laparoscopy overuse, but histology is required to confirm stage and guide surgical planning.

Sex-Specific Physiology: Why This Is Not Just a "Period Problem"

Endometriosis is fundamentally driven by estrogen. Lesions express aromatase, which locally produces estrogen independent of ovarian production, and they are relatively progesterone-resistant due to reduced progesterone receptor-B expression. This biology has direct implications for treatment selection across a woman's life.

Across the Reproductive Years

During cycling years, symptoms typically correlate with the menstrual phase but can be present throughout the cycle in moderate-to-severe disease. Prostaglandin overproduction drives dysmenorrhea; prostaglandin E2 also stimulates local aromatase, creating a self-amplifying inflammatory loop.

Trying to Conceive

Endometriosis accounts for roughly 30 to 50 percent of female infertility cases. Mechanisms include impaired folliculogenesis, altered peritoneal fluid composition, and adhesions that distort tubal anatomy. Halsey disclosed a pregnancy loss in 2015 before her first surgical intervention, a disclosure consistent with the elevated miscarriage risk documented in women with untreated moderate-to-severe disease.

Surgical excision of endometriomas before IVF is recommended by ESHRE when endometrioma diameter exceeds 3 cm and when there is diagnostic uncertainty, though the evidence on post-excision ovarian reserve is mixed.

Pregnancy

Endometriosis lesions often become quiescent during pregnancy due to the high progesterone milieu and the absence of cyclic estrogen fluctuations. Some women report symptom improvement. However, pregnancy in women with endometriosis carries elevated risks of preterm birth, placenta previa, cesarean delivery, and small-for-gestational-age neonates. These risks should be communicated during preconception counseling.

Perimenopause and Beyond

The common clinical assumption is that menopause "cures" endometriosis. It does not always. Adipose-derived estrogen and exogenous hormone therapy can reactivate lesions. The Menopause Society notes that systemic estrogen-alone therapy may stimulate residual endometriosis, and combined estrogen-progestogen therapy or tibolone is preferred in women with confirmed endometriosis who require menopausal hormone therapy. Women who had hysterectomy with ovarian preservation remain at risk for recurrence and should not be given estrogen-alone MHT without discussion.

Conditions That Travel With Endometriosis

Halsey's public health history is a useful teaching case because she named multiple diagnoses in the same disclosure. That pattern is clinically real.

The following co-conditions cluster with endometriosis at statistically meaningful rates and should prompt active screening when a patient presents with one of them:

| Co-condition | Approximate co-prevalence | Clinical implication | |---|---|---| | PCOS | 6 to 8 percent overlap in some cohorts | Shared androgen excess complicates hormonal treatment selection | | Autoimmune disease (lupus, thyroid) | Women with endometriosis have up to 1.5x higher autoimmune disease risk | Screen TSH, ANA at diagnosis | | Interstitial cystitis | ~30 percent overlap | Bladder pain may be misattributed to endometriosis alone | | Irritable bowel syndrome | ~20 percent overlap | Bowel symptoms need differential workup before attributing to endometriosis | | Fibromyalgia and central sensitization | Present in severe cases | Affects pain management strategy; opioids are not first-line | | Female pattern hair loss (FPHL) | Indirect: androgenic treatments for endo may worsen FPHL | Counsel before starting danazol or androgens |

Halsey's concurrent lupus and connective tissue diagnoses are consistent with this clustering. Screening for these conditions is not "chasing zebras." It is standard longitudinal care.

Medical Treatments: What the Evidence Supports

No medication cures endometriosis. Every approved treatment suppresses symptoms by suppressing the hormonal environment that feeds lesions. When a patient asks, "What does Halsey take?" the honest clinical answer is that her specific regimen has not been publicly disclosed in detail, and clinicians should focus the conversation on the evidence-based options available.

First-Line: Combined Hormonal Contraceptives and Progestins

ACOG and ESHRE both recommend combined oral contraceptives (COCs) or progestin-only therapy as first-line medical management for pain when fertility is not the immediate goal. COCs reduce prostaglandin production and create a stable low-estrogen state. Continuous cycling (skipping the placebo week) reduces breakthrough bleeding and pain better than cyclic use in most women.

Progestin options include:

• Norethindrone acetate 5 mg daily (off-label but widely used, inexpensive)
• Dienogest 2 mg daily (approved in Europe and Canada; not FDA-approved for endometriosis but used off-label in the US; showed equivalent pain reduction to GnRH analogs in the VISANNE trial)
• Levonorgestrel IUD (52 mg) for women preferring a non-oral option or who cannot tolerate systemic progestins

Second-Line: GnRH Agonists and Antagonists

GnRH agonists (leuprolide, nafarelin) create a medically induced hypoestrogen state. They are effective for pain but carry a significant side-effect burden: bone loss, vasomotor symptoms, and mood changes that mirror menopause. Leuprolide 3.75 mg IM monthly with add-back norethindrone acetate 5 mg daily is FDA-approved for endometriosis and substantially reduces bone loss compared to GnRH agonist alone. Add-back therapy should be co-prescribed from the start, not added only after symptoms appear.

GnRH antagonists (elagolix, relugolix) offer oral dosing and faster reversibility. Elagolix (Orilissa) is FDA-approved at 150 mg once daily for up to 24 months or 200 mg twice daily for up to 6 months for endometriosis-associated pain. The twice-daily dose produces a deeper estrogen suppression; bone density monitoring is recommended for extended use.

Surgical Treatment: Excision vs. Ablation

For women who have failed medical therapy or who need diagnostic confirmation, laparoscopy is both diagnostic and therapeutic. Excision (complete removal of lesions) is associated with lower recurrence rates than ablation (burning the surface) in the landmark Cochrane review by Jacobson et al., though the quality of evidence remains moderate. Halsey has referenced multiple surgeries, which reflects the reality that endometriosis is a chronic disease. Surgery reduces disease burden; it does not eliminate recurrence risk, particularly if ovarian function is preserved.

Pregnancy, Lactation, and Contraception: A Required Discussion

Pregnancy category and safety: All GnRH agonists and antagonists are contraindicated in pregnancy. Leuprolide is FDA Pregnancy Category X. Elagolix carries a Boxed Warning regarding pregnancy and requires a negative pregnancy test before starting. The FDA mandates that elagolix be dispensed only through the REMS program (Orilissa REMS), which requires patient enrollment and confirmation of contraception use for the 200 mg twice-daily dose.

Contraception requirement: Women on GnRH antagonists who are not surgically sterile must use non-hormonal contraception (condoms, copper IUD) because the drugs may not suppress ovulation completely and are teratogenic. COCs are themselves contraceptive, simplifying this consideration. Norethindrone acetate at therapeutic doses may suppress ovulation but is not approved as a contraceptive; additional contraception is recommended.

Lactation: GnRH agonists and antagonists have not been adequately studied in breastfeeding women. Leuprolide is not recommended during lactation due to insufficient data. The LactMed database does not list elagolix, indicating no published breastfeeding data. For postpartum women with endometriosis symptoms, the levonorgestrel IUD is the pragmatic choice: it is safe in lactation, highly effective as contraception, and reduces endometriosis lesion activity.

Postpartum considerations: Some women experience a temporary improvement in endometriosis symptoms during the postpartum lactational amenorrhea period. Return of menstruation typically marks return of symptoms. Counseling before delivery about postpartum contraceptive options that also manage endometriosis (LNG-IUD, progestin-only pill) reduces the window of uncontrolled disease.

Who This Treatment Path Is Right For (and Who Needs a Different Plan)

Good candidates for medical-first management

• Women in reproductive years with suspected or confirmed endometriosis who are not trying to conceive now
• Adolescents with severe dysmenorrhea not responding to NSAIDs (COCs are the standard starting point)
• Women in perimenopause with residual cycling who need symptom control without surgery
• Women post-excision who want to delay recurrence (continuous progestin or LNG-IUD)

Women who need a different or accelerated approach

• Women actively trying to conceive: medical suppression prevents pregnancy. These patients need referral to reproductive endocrinology for IVF counseling or surgical evaluation before attempting conception.
• Women with endometriomas larger than 3 cm planning IVF: surgical discussion is indicated per ESHRE 2022 guidelines.
• Women with severe bowel or bladder involvement: multidisciplinary surgical planning with colorectal surgery or urology reduces complication risk.
• Women with a known or suspected BRCA mutation: estrogen-containing therapies need individualized risk discussion with oncology.
• Postmenopausal women on estrogen-alone MHT with residual endometriosis: switch to combined MHT or add micronized progesterone 100 mg nightly.

The Evidence Gap: What We Still Do Not Know

Clinicians should be transparent with patients about the limits of the evidence base.

The vast majority of endometriosis RCTs enroll fewer than 200 participants, follow up for less than 12 months, and use pain scores as the primary endpoint rather than quality of life, fertility, or disease progression. Data on long-term excision outcomes beyond 5 years are sparse. Biomarker-based non-invasive diagnosis (CA-125, endometrial nerve fiber density, plasma microRNA panels) remains investigational per ACOG; none is ready for routine clinical use.

Women of color are significantly underrepresented in endometriosis trials, which means the efficacy and safety data clinicians use may not reflect the full population they serve. When a Black patient walks in having seen Halsey's story and recognizes herself in it, the clinician should know that the diagnostic delay she may have experienced is documented, not incidental, and that the treatments she is being offered have limited specific evidence in her demographic.

The GnRH antagonist trials, including the Elaris EM-I and EM-II trials that supported elagolix approval, enrolled predominantly white women. Bone density effects across racial groups were not separately powered. That gap matters for counseling.

Talking Points for the Clinical Encounter

When a patient references Halsey, these evidence-grounded phrases help redirect the conversation productively:

• "What Halsey described, being dismissed for years before getting a diagnosis, is something many patients experience. Let's take your symptoms seriously today and map out a diagnostic plan."
• "Her willingness to talk about this publicly has helped many women recognize symptoms they were told were normal. Severe period pain is not something you have to live with."
• "Surgery gave her answers, and it may be part of your plan too, but we can often try medical management first depending on your goals."

The Menopause Society's 2023 position statement notes: "Endometriosis should be considered a chronic disease requiring a life-long management plan, with the goal of maximizing the use of medical treatment and avoiding repeated surgical procedures." That framing, chronic disease management rather than episodic surgical rescue, is the most important reframe a clinician can offer a newly diagnosed patient.

Living With Endometriosis: What Adjunctive Support Looks Like

Medical and surgical treatment does not address the full burden of the disease. Women with endometriosis have significantly lower health-related quality of life scores compared to the general population, with domains most affected including sexual function, social participation, and mental health.

Referrals that improve outcomes:

• Pelvic floor physical therapy: Reduces pelvic pain and dyspareunia in moderate-to-severe cases. Often not prescribed at initial diagnosis.
• Pain psychology and cognitive behavioral therapy: Evidence supports CBT for central sensitization pain in endometriosis, particularly when medical therapy provides incomplete relief.
• Dietitian referral: An anti-inflammatory dietary pattern (Mediterranean-style, low in trans fats) shows modest benefit in observational studies. No RCT has tested dietary intervention as primary endometriosis treatment.
• Sexual health counseling: Dyspareunia affects an estimated 50 percent of women with endometriosis and is undertreated. GSM-like symptoms from GnRH-induced hypoestrogenism can worsen it; vaginal estrogen is safe and effective as add-back for this indication.