Silent Struggle Before 40
Earlier this month, British-Pakistani advocate Naomi Alesworth published a personal essay describing her decade-long journey to a diagnosis of ovarian failure before age 40. Her account—irregular periods starting in her twenties, unexplained fatigue, joint pains, headaches, and repeated visits to doctors who ordered thyroid and general blood tests but never checked her reproductive hormones—will resonate with women worldwide who feel dismissed or misdiagnosed. When a clinician finally tested Naomi’s follicle-stimulating hormone (FSH) and estradiol at age 36, she learned she had primary ovarian insufficiency (POI), a condition defined by amenorrhea or oligomenorrhea for four to six months with elevated gonadotropins (FSH ≥ 25 IU/L) and low estradiol before age 40.
Naomi is right to call POI a “silent struggle before 40.” It affects not just fertility but also cardiovascular, bone, and cognitive health. Although older studies estimated that 1 % of women experience spontaneous, non-iatrogenic POI before 40, a recent meta-analysis found a global prevalence of about 3.7 %, with higher rates in countries of medium and low Human Development Index. In other words, millions of girls and women worldwide may develop POI yet remain undiagnosed for years because clinicians often attribute missed periods to stress, contraception, or polycystic ovary syndrome. The stigma and isolation described by Naomi are universal.
Why “primary” is more accurate than “premature”
The article refers to “premature ovarian insufficiency,” a term adopted by many European guidelines and used by roughly 40 % of patients and 71 % of healthcare professionals in a recent survey. However, we prefer the term primary ovarian insufficiency (POI) for two reasons:
- Pathophysiology: POI represents a spectrum of hypergonadotropic hypogonadism in which the ovaries intermittently produce hormones but do not function reliably. “Primary” refers to the ovarian level of the defect—distinguishing it from central (pituitary or hypothalamic) causes—while “insufficiency” reflects the possibility of residual or intermittent ovarian function. Women with POI can occasionally conceive spontaneously, something the term “premature ovarian failure” fails to capture.
- Age-neutrality: Although most cases occur before age 40, focusing on “premature” implies that ovarian failure is only abnormal because it happens early. A small proportion of women develop POI after 40 but before the average age of natural menopause (~50); the pathophysiology is identical. “Primary ovarian insufficiency” thus emphasises the underlying condition rather than the timing.
In short, while both terms appear in the literature, “primary ovarian insufficiency” is the scientifically precise term, and our advocacy uses it consistently.
Looking Beyond Borders
Naomi’s piece also notes the scarcity of hormone-replacement therapy in Pakistan, where transdermal estradiol and testosterone formulations are unavailable. Yet limited access and poor clinician awareness are global problems. The 2024 ESHRE/ASRM/IMS/CRE guideline emphasises that POI management should mimic normal ovarian estrogen levels with at least 2 mg/day of oral 17β-estradiol or a 100 µg/day transdermal patch, combined with progesterone if the uterus is present. Without adequate hormone replacement, women face increased risks of osteoporosis, cardiovascular disease, and cognitive decline. Unfortunately, many clinicians still prescribe low-dose oral contraceptives or no therapy at all.
That’s why we are launching a global initiative—through our POI Readiness Platform — to improve awareness, offer evidence-based resources and doctors’ checklists, and support women wherever they live. Naomi’s advocacy reminds us that every story matters, but our response must be as global as the problem. Let’s use her courage as a catalyst to speak up for primary ovarian insufficiency—and to demand that no woman wait a decade for a diagnosis. Visit my28days.org to learn more and join the movement.
For Naomi’s published article, see:
