The Horror Story That Deserves a Happy Ending: Endometriosis Is a Systems Failure - but Hope May Be on the Horizon
Endometriosis affects 1 in 10 women, takes nearly a decade to diagnose in England, and can reshape every part of a person’s life. Emma Barnett’s documentary has finally pushed it into the mainstream - now the question is whether visibility will become care.
At a glance:
1 in 10 women in the UK live with endometriosis - around 1.5 million people.
Diagnosis takes 9 years and 4 months on average in England, despite the condition being common, painful and often life-altering.
Endometriosis can affect the whole body, including the bowel, bladder, pelvic nerves, mental health, fertility, sex, work, energy and relationships.
People are still being dismissed: many report being told their symptoms are normal, needing repeated GP visits, attending A&E, or being sent home without meaningful treatment.
The system is not resourced to match the scale of the disease: reproductive health remains underfunded, gynaecology waiting lists are under extreme pressure, and treatment options remain limited.
The happy ending has to be built: through research, education, better diagnostics, clear pathways, workplace support, trauma-informed care and meaningful support before, during and after diagnosis.
“We are dealing with a common, life-altering, under-researched and under-prioritised disease that has been made small because it is in women’s bodies. That is not a coincidence; it is the entire point.”
Introduction
For many people with endometriosis, Emma Barnett’s documentary will not have felt shocking, it will have felt familiar.
That is probably one of the most horrifying things about it.
Not the pain itself, or the surgeries, exhaustion, medical appointments, the impact on fertility, work, relationships and identity, though all of those things are significant. But rather the quiet feeling of watching somebody describe a level of suffering that so many of us have been expected to absorb, manage, minimise and push through for years.
I say us, because I live with stage 4 endometriosis. I didn’t watch this documentary as a detached viewer, or even just somebody who works in this area. I watched it as somebody who knows firsthand the complexity of grief, frustration and validation when something you have lived through privately is finally shown publicly. Because when pain that has been hidden for this many years becomes so visible overnight on a major platform – something definitely shifts.
The documentary itself is best practice in journalism. It’s honest, raw, compassionate and asks the difficult questions to the right people. Emma frames it up front and centre – this is a whole-body disease, and we have been completely failed.
She gives a voice to those affected who all face different challenges as a result, bravely shares her own story, makes the science feel accessible and challenges the status quo that tells us we should just push on.
One of the most significant quotes is from Emma herself: “Why am I a warrior? I’m not well”
The documentary matters now, and it will matter in 20 years. It has stepped up the game, pulling endometriosis into the mainstream where it belongs. It has put the condition in front of people who may not really know what it is, as is the case for former Health Secretary, Wes Streeting, or people who may only understand it as “bad periods”.
The documentary compassionately shows the emotional toll and clinical complexity and boldly evidences the absurdity of how much people are expected to endure before anyone takes it seriously. But what it also showed whether explicitly or not – is that the real horror story is not only endometriosis itself, but the systems around it.
Because endometriosis is not a private tragedy, it is a public systems failure.
Endometriosis is common, but the attention is not
Endometriosis affects around 1 in 10 women in the UK. It is a chronic inflammatory condition where tissue similar to the lining of the womb grows outside the womb.
Endometriosis can affect the ovaries, fallopian tubes, bowel, bladder, pelvic wall, nerves and, in some cases, areas beyond the pelvis such as the abdomen and chest. It can cause severe period pain, chronic pelvic pain, pain during or after sex, pain when going to the toilet, heavy bleeding, digestive symptoms, nausea, fatigue, bloating and fertility difficulties.
That means roughly 1.5 million people in the UK and 190 million globally are living with a severe whole-body condition that is as prevalent as diabetes, that behaves like cancer and creates pain that can be difficult to predict, explain or prove.
There is also a large intersection between menstrual health and mental health, with the 2020 APPG inquiry noting 81% said it negatively affected their mental health, 89% said it affected their ability to live life as they wanted and 90% would have liked psychological support but were not offered it. Fast forward to 2025, when Endometriosis UK reported that 98% of respondents reported endometriosis had an impact on their mental health.
In five years – the dial moved, but in the wrong direction.
This is frustrating to say the least. However, it is unsurprising when cross-referenced to other data.
It’s a Human Rights Issue
Endometriosis is a very clear example of neglect sitting in the middle of a menstrual health crisis and is a huge indicator of prevailing systemic gender oppression.
The World Health Organisation labels menstrual health as a fundamental human right, and scientists are calling for menstrual health to be created as a vital health indicator across a lifespan. However, even in the UK alone 13.3 million people in the UK menstruate and despite the above, 21% of them cannot afford period products and gynaecology has the largest waiting-list for any specialism in the NHS.
Endometriosis is shaping everything in the lives of those suffering with the condition. It shapes how you plan your week, whether you can work and earn money to survive, if you can stand up straight and if you feel safe in medical environments.
It invades tissues, distorts our anatomy, affects our organs and recurs after surgery. Understandably, this wipes us out - effectively reducing our ability to sustainably participate in society and it is rapidly eroding our trust in our bodies and healthcare systems.
Our understanding of it has been too small for the complexity of the disease. This matters because language shapes urgency, and for too long, the language around endometriosis has failed to communicate the reality of the disease.
You’d assume we take this all very seriously – but we don’t (yet).
Diagnosis delays and medical dismissal
One of the ironies of endometriosis is that it is so prevalent, but the research, diagnosis, funding and treatments don’t correlate fairly, ethically, practically or economically.
The average diagnosis time globally is between 4-12 years. For people from the global majority – this rises to 11 years. Other average diagnosis timeframes include:
England: 9 years and 4 months
Scotland: 10 years and 2 months
Wales: 9 years and 11 months
Northern Ireland: 9 years and 10 months
Whilst people sit on these waiting lists (if they can even get onto them), they experience dismissal, neglect and medical misogyny.
Studies by Endometriosis UK show that 83% of people said a healthcare practitioner told them they were “making a fuss about nothing” and that their symptoms were normal. Additionally, 39% of people reported needing to visit their GP 10 times or more before endometriosis was suspected. Within this, 55% of people attended A&E with symptoms and 46% were hold nothing can be done and were sent home without treatment.
I’ve been there.
The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) found in 2024 that endometriosis is being treated as multiple episodes of acute care, rather than a chronic condition requiring ongoing management, follow-up and multidisplinary support.
Lack of treatment options and no cure
There is currently no prevention treatments and no cure for endometriosis. Of the two treatment options that exist for treatment, neither is sufficient.
Simply put, the treatment options are prescribed hormones, or surgery – sometimes a full hysterectomy. They are designed to control symptoms and limit long-term impacts yet it is common for endometriosis to recur even after successful treatments.
The Women’s and Equalities Committee notes that treatment options are very limited, and there is an over-reliance on hormonal contraception to manage symptoms – with 80% of people being prescribed it before any investigation, and of that 55% had no discussion about possible causes of symptoms.
People are having their wombs removed from their bodies, and it isn’t solving the issue.
People are experiencing years of uncertainty, appointments, self-doubt, symptom tracking, blood tests, scans, referrals, waiting lists, prescriptions, cancellations, explanations, hope, disappointment, and often being told (directly or indirectly) that this is just what bodies like ours do.
The delay, lack of understanding and minimal treatment options are not just a clinical problem – they are indicative of the patriarchal cultures we have built, funded and participated in.
This has gone unchallenged for too long, and whilst the system catches up – people are expected to live in agony and uncertainty.
Addressing the real problem
Indulge me in a thought experience for a moment…
If 1 in 10 men were living with a condition that caused chronic pain, fatigue, organ involvement, bowel and bladder symptoms, painful sex, fertility complications and repeated surgical intervention… what would the care pathways look like?
I don’t think it is that extreme to suggest that it probably would not take 10 years to get a diagnosis, because it would be funded properly in the first place.
Naming the inequality
Only 2% of overall UK public research funding going to reproductive health currently, and there is five times more research conducted into erectile dysfunction than premenstrual syndrome (PMS). 19% of men are affected by erectile dysfunction, while 90% of women have PMS.
It’s not just research either. Visible NHS healthcare spend and policy attention is highly disproportionate.
A government impact assessment on NHS access to erectile dysfunction medicines said the NHS spend on erectile dysfunction treatments in England has ongoing annual costs between £104 - 110.7 million. The National Institute for Health and Care Research spent £8.4 million on endometriosis-relevant [awards] between 2019 and 2024.
By my calculations, that is, roughly £540 million to erectile dysfunction, and £8.4 million to endometriosis in the same time frame. If we don’t laugh, we’ll cry.
This is not a perfect like-for-like comparison, because treatment spend and research funding are different pots of money. But it still shows something important about urgency, infrastructure and what systems are prepared to resource.
Many would argue this point in favour of prioritising fertility, and I hear you.
Endometriosis is one of the most significant known causes of infertility with 25-50% of women who are infertile having endometriosis, 83% of people with endometriosis report pain during or after sex and 73% report difficulty getting pregnant. That’s just what we know now, with limited research into the condition.
There is a significant disparity here. It’s reasonable to suggest that endometriosis research, diagnosis and care may look a bit different if the roles were reversed. Statistically, there is currently no comparable way within healthcare in which men are as disenfranchised and dismissed as women with endometriosis are and continue to be. This isn’t a provocative statement for the sake of it – it’s rooted in data, facts and thousands of lived-experience accounts.
These considerations sit at the heart of a significant healthcare crisis for people with endometriosis, and I welcome male allies to the conversation. Gentlemen – we are not dealing with a rare or niche issue. We see the disparity, we are calling it out, and we need you to get behind us as quickly as possible.
Do not be on the side of history which dismisses, or silently accepts such a common, life-altering, under-researched and under-prioritised disease that has been made small because it is attached to menstrual health, pelvic pain and women’s bodies.
Because… that is not a coincidence, it is the entire point.
The silence was built into the system
This sits underneath everything.
Why has a condition this common, this painful and this economically significant been allowed to remain so poorly understood?
The answer is not simple, but it is also not a mystery that needs solving. Every woman and person who menstruates knows – because we live in this world every day.
Endometriosis sits at the intersection of several things our society has historically been very bad at taking seriously: menstrual health, pelvic pain, women’s pain, invisible illness, chronic fatigue, fertility, sex, reproductive organs, mental health and the messy reality of bodies that do not behave in neat, linear ways.
It is a disease that lives in the parts of the body we are often taught to be embarrassed by and creates symptoms people are taught to hide. Understanding endometriosis requires conversations about bleeding, bowel movements, sex, pain, fertility and energy levels. Culturally, this does not tend to be the number one topic at dinner parties – so we’ve made it quiet.
The awkwardness which encourages silence is also happening within a political environment which made it niche, a clinical culture that has too often normalised dismissal, and an economy that quietly relies on women absorbing the cost of pain and fatigue privately.
This is what gender inequality looks like in healthcare. It doesn’t tend to be one dramatic act of harm, but rather it is a long chain of underfunding, under-training, disbelief, delay and silence.
Reproductive potential is valued, but our lived experience is not
There is a contradiction at the centre of all of this that I find increasingly difficult to ignore. As do my clients, colleagues and anybody with a uterus that I talk to.
The same systems that romanticise fertility and motherhood have failed to fund, research or properly treat one of the most common diseases affecting the organs they claim to care so much about.
Women are expected to have children, want children, think about children, preserve and plan fertility and answer questions about fertility in medical appointments, whether they feel it is relevant to their appointment or not.
But the same bodies carrying that reproductive expectation are often left to manage it alone.
Women live with this reality whilst birthing and caring for children in a society that doesn’t support us to do so. EHRC findings show that 11% of new mothers felt forced out of their jobs due to poor treatment, dismissal or compulsory redundancy, and Pregnant Then Screwed estimates up to 74,000 women lose their jobs every year for being pregnant or taking maternity leave.
All of this sits within a much broader movement of reproductive politics and gender inequality. We’ve got movements like #MeToo, birth trauma, maternal mortality, menopause at work, medical misogyny, shadow-banning women’s health content, period poverty and so much more.
We hear decision makers talk about keeping women safe, valuing their contribution and equality as something we already have. If that is the case – why do we still need to fight to be heard?
The language of equality is there, but the infrastructure and care does not match up, which is why what happens next really matters. Historically, once something has been made visible, we have a responsibility to decide what we do with it. Will this become a moment where we’re briefly applauded for bravery, or is this the turning point we have been waiting for.
I think the answer lies in holding two truths at once: endometriosis care is very far from where we need it to be, but hope may be on the horizon.
Inconvenient to medicine, but useful for science
This contradiction becomes sharper when we look at menstrual blood research.
Menstrual blood-derived stem cells, first identified in 2007, are being explored in regenerative medicine because they are relatively easy to collect, non-invasive compared with sources like bone marrow, and appear to have promising applications.
There is also growing interest in menstrual blood as a diagnostic resource, including in women’s health and endometriosis research. Something previously thought of as a “waste” has the potential to really help those with reproductive health conditions, and everyone else.
Although it’s early days, so far scientific research indicates that the very blood we’ve been taught to hide can support withdiabetic wound healing, burns and skin repair, spinal cord injuries, Parkinson’s research, liver disease, osteoarthritis, inflammation and tissue regeneration.
This has a bittersweet nature to it.
Something that has brought us shame for years is now valuable, in a world where our bodies are politically debated, medically underfunded and socially expected to keep going. It offers an insight into the reality many of us are living with every day – we are seen as valuable when we are fertile, pregnant, absorbing pressures, and now, we are scientifically significant. Yet, when our bodies bleed, hurt, rapture, flare up and collapse – this care and urgency seems to disappear.
It’s a huge disparity and contradiction we can’t afford to ignore anymore. That our blood is valuable, but our pain is minimised. That reproductive organs are up for political debate but reproductive suffering is medically under-treated. That fertility is precious, but the person living inside the body is secondary.
When the body is useful, but the suffering is negotiable – we are in dangerous territory.
The happy ending has to be built
Other places are already showing us that endometriosis can be treated differently.
Australia launched a national action plan for endometriosis in 2018, focused on awareness, education, clinical management, care and research. It has since invested in dedicated endometriosis and pelvic pain clinics. France has developed a national strategy focused on improving awareness, diagnosis, research and coordinated care. Scotland’s Women’s Health Plan continues work on endometriosis and menstrual health symptoms.
None of these approaches are perfect, health systems rarely are, but it shows us that endometriosis doesn’t have to sit in the margins. It can have national plans, dedicated clinics, research infrastructure, early education and coordinated care.
In the UK, we already know we have a problem. The NCEPOD’s 2024 report said endometriosis should be treated as chronic condition requiring ongoing management and formalised pathways and The Renewed Women’s Health Strategy states the government wants address diagnostic delays, improve education and prioritise endometriosis.
There is also innovation happening. Not only in menstrual blood research, but a recent trial of non-invasive scans is showing promising results for endometriosis – which is hard to detect with standard image mapping.
On a personal note, I have managed my stage 4 endometriosis holistically for nearly 10 years. That is not a replacement for proper medical care, and it should never be used to justify the lack of research, diagnosis, treatment or specialist pathways.
However, it has taught me that there are many ways to support people with endometriosis to live fuller lives whilst we push for the bigger system changes we urgently need. They’re just not consistently recognised, funded, referred into or embedded within mainstream care… yet.
That matters because people with endometriosis are not living in the future version of the system. We are living now - through pain, appointments, work, fertility decisions, surgery recovery, fatigue, relationships, trauma and uncertainty.
So while we need better diagnostics, better treatments, clearer pathways and more research, the happy ending cannot only be something that arrives years from now. It also has to include what happens in the meantime.
That means support before diagnosis, workplaces that understand endometriosis before people reach crisis, healthcare professionals who know that a normal scan does not mean a normal experience, and care that includes pain management, pelvic health, mental health, trauma-informed support and practical adjustments as part of the pathway.
Hope matters not because everything is fixed, but because this may be the most attention endometriosis has ever had.
If we hold that attention properly, it can become pressure, funding, research, pathways and care - and people with endometriosis can begin to get years of their lives back.
Conclusion
For too long, endometriosis has been treated as something people survive privately.
In bathrooms, bedrooms, waiting rooms, workplaces, relationships and bodies that have had to become experts in their own pain – yet it was never really private.
Endometriosis affects our health systems, workplaces, economy, relationships, fertility care, mental health, education, research priorities and ideas about whose pain matters. The horror of it all is not only the disease itself, but the years people lose trying to be believed and what it indicates about an ecosystem of hierarchies in research, policy, education and care.
A happy ending is possible if we stop asking individuals to survive something that systems have refused to understand. We need to believe people earlier, educate properly, fund the research, build the pathways and support people before, during and after diagnosis.
Let’s give endometriosis the happy ending it has deserved all along.
And finally, to my fellow people with endometriosis – I’m so sorry this has been your experience. I see you, I salute you and I stand firmly with you.
Author Note: This work did not start here
I want to recognise that this article sits on top of years of work by charities, campaigners, researchers, clinicians, advocates and people with lived experience who have been pushing menstrual and gynaecological health into public, political and clinical consciousness long before it reached the mainstream.
With deep respect and thanks to organisations including Endometriosis UK, Irise International, Bloody Good Period, ActionAid UK, Wellbeing of Women and The Eve Appeal for their work across endometriosis, menstrual justice, period poverty, health literacy, research, education, access and advocacy. I also want to acknowledge the Royal College of Obstetricians and Gynaecologists and the Women and Equalities Committee for their evidence, scrutiny and leadership in bringing these issues further into healthcare and policy spaces.
The attention now growing around endometriosis and menstrual health is not an accident. It is the result of sustained labour, evidence-building, campaigning, care and courage. This article is written in respect for that work, and with the hope that visibility now becomes meaningful change.
