Part two of a series on the conditions women are taught to carry quietly
Last week I wrote about adenomyosis, the condition that hides because almost no one gives it a name. Endometriosis is different. Many people have heard of it. It has an awareness month, foundations, research centres, and women with large platforms who speak about it openly. The usual story is that women are not believed, and in many cases that is true. But disbelief is not the only failure. Pain is also minimized, normalized, misread, or treated as something a woman must simply learn to manage. I want to follow the story further than recognition.
Endometriosis happens when tissue similar to the lining inside the uterus grows outside the uterus. It can be found on the ovaries, fallopian tubes, bowel, bladder, and other parts of the pelvis. In some cases, it is found beyond the pelvis. This tissue responds to hormonal changes, which means it can swell, bleed, and trigger inflammation. Because it is outside the uterus, the body cannot shed it in the same way it sheds a period. Over time, this can lead to pain, scarring, and organs sticking to each other. For some women, the pain starts around their period. For others, it becomes pain that follows them through the month, affecting sex, bowel movements, urination, fertility, work, school, and daily life. Roughly one in ten women and girls of reproductive age live with endometriosis, about 190 million people globally.
The part that holds my attention as a practitioner is not only the seven to ten years that often pass before diagnosis, long as those years are. It is what we hand a woman once the name finally arrives. The options on offer can help and often do. Hormonal therapy, which uses medicines such as contraceptive pills, injections, implants, or other hormone-regulating drugs, can reduce bleeding, slow the activity of endometriosis tissue, and quiet pain for many women. Excision surgery, where a trained surgeon cuts out endometriosis lesions rather than simply burning the surface, can bring real relief when it is available and done well. Pain management, pelvic floor therapy, and fertility support each have their place when a woman can reach them.
The problem is rarely any single one of these options. The problem is that they often arrive as a narrow menu rather than a pathway built around a life. Too often, a woman is left to navigate that menu largely alone: manage symptoms, weigh surgery, watch for recurrence, protect her fertility if she still can, and keep rebuilding her days around a condition no one has fully designed care around. There is no cure at the end of it, which makes the shape of the care matter all the more.
The issue is not that these options have no value. Many women need them, and many women benefit from them. The issue is that care is still too often organized around the disease rather than the woman living with it. It is built around the lesion, the bleeding, the scan, the prescription, the surgery, and the next appointment. It is less often built around the child she may want, the job she cannot keep losing days from, the relationship under strain, the school she is missing, or the ordinary Tuesday she would like to live without counting the hours.
That is a design failure, and design failures have design answers. This is where the conversation usually stops. It is where I think it should start.
People-centred care appears in many health strategies, but too often it disappears at the point where women need it most: diagnosis, treatment choices, pain management, fertility decisions, and long-term support. Human-centred design would begin with the woman’s own definition of a good outcome, not only the clinicians. Social and behaviour change would reach the silence that keeps her from naming the pain at all, long before she ever sits in a clinic. Public health already has these disciplines. The question is why we have not applied them, with enough seriousness, to conditions like this.
I keep returning to the question I asked last week. Who failed them? This week I want to be more precise about where the weight falls. The burden is the woman’s, and that much is visible in any waiting room. The responsibility sits heaviest with the people who design care without her in the room: the ones who set the research budgets, who decide what counts as a treatment, and who decide what counts as success. The researcher, the clinician, the policymaker, the company, and the community all hold a share. The largest share belongs to whoever holds the pen when the system is drawn, because that is the moment a woman’s life is either kept in view or left out of the picture.
The gap widens across many African settings. For decades, endometriosis was framed in medical literature as a condition more commonly seen among white, affluent women, and by inference, rare among Black women and women of African descent. That framing was not supported by evidence. It was shaped by who had access to diagnosis, specialist care, and surgical facilities, and by whose pain was taken seriously. A 2022 paper in Reproduction and Fertility documented how this misconception has directly contributed to long diagnostic delays, limited access to care, and a stark scarcity of research on endometriosis among African women. That history still has a clinical life. It shapes what is suspected, what is investigated, and how urgently pain is treated. In Uganda, a 2025 audit found that just four specialists remain to manage the condition across the entire country. Laparoscopic surgery, the most reliable diagnostic pathway, costs more than most families can afford. Specialist consultation is concentrated in urban centres and largely inaccessible through routine public services. A condition that is already hard to diagnose and treat becomes, here, one that many women may never get the chance to have properly named, let alone managed with care.
Recent clinical guidance has begun to shift away from making surgery the price of a diagnosis. The 2022 guideline from the European Society of Human Reproduction and Embryology supports diagnosis based on symptoms, examination, and imaging where appropriate, rather than requiring every woman to undergo laparoscopy before her care begins. The American College of Obstetricians and Gynecologists moved in the same direction with new guidance in early 2026. This matters, because it means a woman’s account of her own body is finally being taken more seriously. It also fixes the front door while leaving much of the room unchanged. The treatments available today are still largely the same one’s women were offered a generation ago.
I am staying with this series because the questions carry from one condition to the next. What did we know? Who should have acted? What do we owe the person living inside this body? Adenomyosis asked us to see what hides. Endometriosis asks us to look hard at what we offer once we have seen, and to admit that recognition without a better answer is only half a kindness. Perimenopause is next, and the same question waits there.
Over the coming weeks, I will sit with these questions. I hope you will sit with them too, not only as readers, but as practitioners, funders, researchers, policymakers, and women who know that being believed should be the beginning of care, not the end of it.
If you are working on women’s health, public health systems, care pathways, research, or community-centred programming, we would be glad to connect. Orpesi Collective supports partners to design approaches that begin with people’s lived realities and move toward practical, lasting change.
Reach us at info@orpesicollective.org.