Women’s Pain: Living with Endometriosis
I got my first period at twelve. People later asked whether it had been uncomfortable, but that word never really fit. What I remember is that something felt wrong immediately. Physically disproportionate. Very quickly I learned that my month would not be structured around work, friends or plans, but around a predictable interruption I could not negotiate with.
By the time I was about seventeen, taking three to four ibuprofen a day during my period had become routine. What shaped my life most, however, was not only the pain itself but the anticipation of it. Before the bleeding started, my body reacted first: a growing tension, a kind of anticipatory anxiety.
For roughly three to four days each month I was unable to function normally. I would stay in bed and wait for time to pass. Once the pain escalated to the point that I woke up at two in the morning and vomited. Another time I collapsed at a highway rest stop and an ambulance administered an antispasmodic infusion, after which the pain stopped almost abruptly. I have been in emergency rooms multiple times because of my period, yet I rarely left with an explanation.
At a major hospital I underwent examinations that produced no clear findings. Instead, I was told to return when I wanted children.
The implicit message was that the problem would become medically relevant once it threatened fertility. Until then, I was expected to manage the symptoms.
This experience is typical for people with endometriosis.
Endometriosis is a chronic inflammatory disease in which tissue similar to the endometrium (the lining of the uterus) grows outside the uterus, commonly on the ovaries, pelvic nerves, bowel or bladder (Zondervan et al., 2020). Because this tissue still responds to hormonal cycles, it swells and bleeds each month in places where bleeding cannot be physiologically resolved. The body responds with inflammation, scar formation and sometimes nerve sensitization. As a result, the pain is not simply muscular cramping but involves immune and neurological mechanisms, which helps explain why standard painkillers may lose effectiveness over time (Zondervan et al., 2020).
Diagnosing endometriosis is unusually difficult. Lesions can be microscopic or hidden behind organs, meaning ultrasound often fails to detect them and even MRI imaging can miss them. In many cases, the only definitive confirmation is laparoscopy, a surgical procedure. The diagnostic uncertainty contributes to an average delay of seven to ten years between symptom onset and diagnosis (Hudelist et al., 2012; Nnoaham et al., 2011).
This delay would be surprising if the disease were rare. It is not. Approximately one in ten women and people assigned female at birth worldwide are affected (World Health Organization, 2025). The gap between prevalence and recognition reflects a historical bias in medicine: menstrual pain has long been categorized as expected rather than pathological. Conditions that do not produce visible external injury often require patients to first establish credibility before investigation begins.
This creates a recognizable social pattern. People suggest stress reduction, dietary changes or lifestyle adjustments long before medical explanations emerge. Advice replaces diagnosis. Because symptoms fluctuate monthly rather than continuously, others perceive inconsistency rather than chronic illness. Patients appear healthy most of the time and severely impaired at regular intervals, which does not match common expectations of disease.
The medical system reinforces this ambiguity by frequently prioritizing fertility outcomes over daily functioning. Many patients report that intervention intensifies once pregnancy becomes relevant, while earlier pain management remains conservative (Young et al., 2015). The result is a hierarchy in which future reproductive capacity receives clearer medical urgency than present quality of life.
Living with endometriosis therefore means managing not only a condition but also its interpretive uncertainty. Life becomes organized around predicted absences: plans, travel, deadlines and relationships are scheduled with the assumption of periodic withdrawal. Over time, the anticipation itself becomes part of the burden.
Awareness matters because recognition changes behavior. Earlier suspicion leads to earlier referral, and earlier referral reduces years spent interpreting severe pain as a personal tolerance issue rather than a medical condition. For many patients, the first meaningful relief is classification. The moment the experience shifts from private anomaly to shared phenomenon.
ReferencesHudelist, G., Fritzer, N., Thomas, A., Niehues, C., Oppelt, P., Haas, D., Tammaa, A., & Salzer, H. (2012). Diagnostic delay for endometriosis in Austria and Germany. Human Reproduction, 27(12), 3412–3416. doi: 10.1093/humrep/des316Nnoaham, K. E., Hummelshoj, L., Webster, P., D’Hooghe, T., et al. (2011). Impact of endometriosis on quality of life and work productivity. Fertility and Sterility, 96(2), 366–373. doi: 10.1016/j.fertnstert.2011.05.090World Health Organization. (2025). Endometriosis fact sheet. https://www.who.int/news-room/fact-sheets/detail/endometriosisYoung, K., Fisher, J., & Kirkman, M. (2015). Women’s experiences of endometriosis: a systematic review. Journal of Family Planning and Reproductive Health Care, 41(3), 225-34. doi: 10.1136/jfprhc-2013-100853.Zondervan, K. T., Becker, C. M., & Missmer, S. A. (2020). Endometriosis. New England Journal of Medicine, 382(13), 1244–1256. doi: 10.1056/NEJMra1810764