The insanity that is Endometriosis. And what we need to do about it.
The more I learn about endometriosis, the more in disbelief I am - about the gap between how common and debilitating it is, and how little it is understood and recognized. After having written my thesis on endometriosis, and worked for the Endometriose Stichting (the endometriosis foundation in the Netherlands), I believe that women with endometriosis are not receiving adequate healthcare.
To be clear, there is some progress. There are very dedicated activists, researchers, nurses and gynecologists working very hard to help develop diagnosis and treatment tools for women with endometriosis. But developments in endometriosis healthcare are very delayed and nowhere near the care that women deserve.
In this article, I first explain the basics of what endometriosis is, followed by an exploration of why an illness that affects 1 in 10 women is so often misunderstood and undertreated.
If you, like very many others, don't know what endometriosis exactly is, here is an overview:
What is endometriosis?
Endometriosis is a chronic inflammatory condition, where tissue that is similar to the tissue that lines the inside of the uterus is found outside the uterus (where it does not belong!) [1]. This tissue can settle on organs such as the ovaries or fallopian tubes, or other organs such as your intestines, bladder or liver. It has even been found on organs far away, like the lungs and the brain, but this is less common [2]. On these locations, the endometriosis tissue responds to our monthly hormone fluctuations, and it causes inflammation, wounds and scarring, and it can stick two organs together [3].
Symptoms: more than “just a painful period”.
As you can imagine, this causes problems. Specifically, the pelvic environment tends to get inflamed, which contributes to the experience of pain. The most common symptom of endometriosis is pain around or during menstruation. Further symptoms include chronic pelvic pain (pain that continues at all times of the month), pain during urinating or defecating, gastrointestinal problems, fatigue, pain during sex, and up to 50% of women with endometriosis have infertility [4]. Endometriosis can also cause structural or functional damage to other organs such as the bladder or the intestines [4]. It’s therefore a lot more than “just a painful period”. Some women with endometriosis have little to no symptoms and often find out they have endometriosis when struggling to get pregnant. While other women report excruciating pain, they faint or throw up due to the pain, and end up in hospital to get access to stronger pain medications. Due to the weight and stress of these physical symptoms, women with endometriosis also experience increased rates of depression and anxiety compared to women without endometriosis [5].
Diagnosis.
Endometriosis is common - it occurs in around 1 in 10 (10%) women [6]. Endometriosis has a “diagnostic delay” of around 7 years, meaning that on average, it takes a woman 7 years from when symptoms start until she receives the correct diagnosis of endometriosis [7]. In the Netherlands, a diagnosis is typically given via an internal ultrasound. Alternatively, a diagnosis can be made using an MRI, although this is more expensive and often done before undergoing surgery. The most accurate way to diagnose endometriosis is through an operation (a laparoscopy) whereby the endometriosis tissue is visually identified, and usually directly removed. However, this is invasive, and the decision is not taken lightly.
Treatments [8].
Endometriosis is typically treated by:
Typical painkillers, as well as stronger ones.
The pill or other contraceptives - which stop the fluctuation in hormones, and can help manage symptoms of endometriosis.
An operation (laparoscopy) - the endometriosis tissue is removed. This is done only in severe cases, since it is quite invasive.
Non-medical treatments - acupuncture, red light, TENS, mindfulness, diet etc.
The gap between impact and care.
With that foundation in place, let’s look at what the reality of living with endometriosis actually looks like. Imagine having an illness that flares up every month, disrupting your life for several days, causing intense pain and affecting your ability to work, socialize or maintain relationships. Now imagine not being taken seriously when you seek help, having limited and sometimes ineffective treatment options, and feeling unable to talk about it openly. To me that is insane.
Current treatments fall short.
One of the clearest indications of this gap is the limitation of current treatments. Many women report that painkillers do not reduce their pain to a manageable level. Hormonal treatments, such as contraceptives can come with significant side effects for some and there is only weak evidence that hormonal treatments can actually limit the growth or spread of endometriosis [9]. Even surgical intervention, where endometriosis tissue is removed, is not a long-term solution for many women, as the endometriosis tissue and symptoms return in 40-50% of women within 5 years [10].
While these treatments have definitely helped many patients regain quality of life, so many women continue to experience significant symptoms and damage to other organs. Treatment options are therefore still not good enough.
Why diagnosis remains a challenge.
Another major problem lies in how difficult it is to diagnose endometriosis. Ultrasounds have a low accuracy for specific sub-types of endometriosis, meaning some women with endometriosis may be falsely told they don't have endometriosis [11]. In the Netherlands, further diagnostic measures such as an MRI or a laparoscopy are only done if symptoms are considered severe enough.
Endometriosis is often described as a complex and difficult condition to diagnose because the lesions are not always easily visible. However, this difficulty is not inherent to the condition - it also reflects the limitations of current diagnostic methods. The lack of accurate and accessible diagnostic tools contributes to delayed diagnoses and prolonged uncertainty and pain for many women. Other illnesses such as cancers were also difficult to diagnose, yet we put in the work to develop more accurate diagnostic tools. Further research, innovation and clinical trials are needed. There is research into diagnostic innovations, yet these seem to be in the early stages and far from being used in daily clinical practice.
Why is endometriosis still under-recognized?
This low investment into endometriosis may reflect our society’s broader attitude towards menstruation. In many groups, menstruation is still seen as something private, shameful, disgusting or embarrassing to talk about. This reduces how often we talk about menstruation, and education on what is normal versus abnormal remains insufficient. Additionally, women are implicitly or explicitly taught that pain during their period is something they should expect and tolerate. Women internalize this message, downplaying or even denying the severity of what they feel every month. In that silence, serious conditions like endometriosis are overlooked, sometimes for years.
Unfortunately, our societal attitudes towards menstruation and menstrual pain can also affect doctors. There are countless stories of women showing clear symptoms of endometriosis, who are dismissed by their GPs or gynecologists, and told something along the lines of “this is just a normal part of being a woman”, or “the pain is just in your mind, I didn't find anything”. This creates self-doubt in women, can add years of untreated pain, and delay the diagnosis.
To be nuanced here, there are many dedicated, informed, respectful and helpful gynecologists who are working hard to treat women well, and counteract these attitudes. And the last thing I want to do is discourage them. Yet ignorant doctors remain, and they have very damaging effects on women’s lives - they cause self-doubt, shame and add to the length of time women with endometriosis suffer without a solution.
What can we (as non-medical staff) do to improve this?
Ultimately increasing awareness will drive change. The more attention endometriosis receives, the more likely it is that research, funding and better treatment options will follow.
Talk about it - Menstrual pain shouldn't be something people feel they have to hide. Speaking openly about it helps others recognize what is common and what is not. Even simple statements like “I am not feeling well because of period pain” can make a difference.
Educate yourself and others - Understanding how menstruation works, and what symptoms are normal or not, is key. Greater awareness makes it easier to recognize when something may require medical attention.
Encourage people to seek help - If you or someone else experiences pain that interferes with their daily life, the symptoms are worth taking seriously. Encouraging others to get a medical consultation can help reduce delays in diagnosis and treatment. Remember that endometriosis symptoms can vary so much between people - not having some specific symptom on the “symptom list” doesn’t mean you do not have endometriosis.
Endometriosis: A problem we can no longer overlook.
To me, the “insanity” I mention lies in the fact that endometriosis is common, complex, and often debilitating, yet it remains under-recognized and under-researched. Increasing awareness, improving conversations around menstrual health, and recognizing symptoms earlier are necessary steps to improve the care for women.
I wonder:
How much longer is this going to continue?
When and how will we achieve the change that women deserve?
References:
“Endometriosis,” accessed April 5, 2026, https://www.who.int/news-room/fact-sheets/detail/endometriosis.
Marina P. Andres et al., “Extrapelvic Endometriosis: A Systematic Review,” Journal of Minimally Invasive Gynecology 27, no. 2 (2020): 373–89, https://doi.org/10.1016/j.jmig.2019.10.004
Sachin Rathod et al., “Endometriosis: A Comprehensive Exploration of Inflammatory Mechanisms and Fertility Implications,” Cureus 16, no. 8 (n.d.): e66128, https://doi.org/10.7759/cureus.66128.
Nicolas Monnin et al., “Endometriosis: Update of Pathophysiology, (Epi) Genetic and Environmental Involvement,” Biomedicines 11, no. 3 (2023): 978, https://doi.org/10.3390/biomedicines11030978.
Matthew Latham Macer and Hugh S. Taylor, “Endometriosis and Infertility: A Review of the Pathogenesis and Treatment of Endometriosis-Associated Infertility,” Obstetrics and Gynecology Clinics of North America 39, no. 4 (2012): 535–49, https://doi.org/10.1016/j.ogc.2012.10.002;
Mohammad Reza Razzaghi et al., “Endometriosis,” in Endometriosis - Basic Concepts and Current Research Trends (IntechOpen, 2012), https://doi.org/10.5772/32760;
Saurabh Chauhan et al., “Endometriosis: A Review of Clinical Diagnosis, Treatment, and Pathogenesis,” Cureus 14, no. 9 (n.d.): e28864, https://doi.org/10.7759/cureus.28864.
“Endometriosis Complications Explained | MyEndometriosisTeam.” Accessed May 28, 2026. https://www.myendometriosisteam.com/resources/endometriosis-complications-explained.Małgorzata Szypłowska et al., “The Impact of Endometriosis on Depressive and Anxiety Symptoms and Quality of Life: A Systematic Review,” Frontiers in Public Health 11 (September 2023): 1230303, https://doi.org/10.3389/fpubh.2023.1230303.
Carolin Harder et al., “Assessing the True Prevalence of Endometriosis: A Narrative Review of Literature Data,” International Journal of Gynecology & Obstetrics 167, no. 3 (2024): 883–900, https://doi.org/10.1002/ijgo.15756.
Pauline De Corte et al., “Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics—A Systematic Literature Review,” Bjog 132, no. 2 (2025): 118–30, https://doi.org/10.1111/1471-0528.17973.
Lan Zhu et al., “Diagnosis and Treatment of Perineal Endometriosis,” in Endometriosis - Basic Concepts and Current Research Trends (IntechOpen, 2012), https://doi.org/10.5772/29909.
Julie Brown et al., “Oral Contraceptives for Pain Associated with Endometriosis,” The Cochrane Database of Systematic Reviews 2018, no. 5 (2018): CD001019, https://doi.org/10.1002/14651858.CD001019.pub3.
Sarah Martell et al., “Psychological Side Effects of Hormonal Contraception: A Disconnect between Patients and Providers,” Contraception and Reproductive Medicine (London) 8, no. 1 (2023): 9–11, https://doi.org/10.1186/s40834-022-00204-w.
Sun-Wei Guo, “Recurrence of Endometriosis and Its Control,” Human Reproduction Update 15, no. 4 (2009): 441–61, https://doi.org/10.1093/humupd/dmp007.
Alice J. Robinson et al., “Poor Sensitivity of Transvaginal Ultrasound Markers in Diagnosis of Superficial Endometriosis of the Uterosacral Ligaments,” Journal of Endometriosis and Pelvic Pain Disorders (London, England) 10, no. 1 (2018): 10–17, https://doi.org/10.1177/2284026518767259.
