"For countless women battling endometriosis, the fight extends beyond excruciating physical pain, encompassing a frustrating journey of medical gaslighting, delayed diagnoses, and profound societal and workplace challenges, underscoring a critical need for systemic change and greater understanding."
This powerful sentiment encapsulates the shared ordeal of millions globally, as women navigate a debilitating chronic condition often dismissed or misunderstood by medical professionals and society alike. Endometriosis, where tissue similar to the lining of the womb grows elsewhere in the body, affects approximately one in ten women worldwide, yet its impact on daily life, career, and mental well-being remains largely invisible, perpetuating a cycle of suffering and frustration.
Endometriosis is a chronic condition characterised by the growth of endometrial-like tissue outside the uterus, most commonly on organs within the pelvic cavity such as the ovaries, fallopian tubes, and the outer surface of the uterus, but it can also affect the bowel, bladder, diaphragm, and, rarely, other distant organs. This misplaced tissue behaves like normal endometrial tissue, thickening, breaking down, and bleeding with each menstrual cycle. However, with no outlet from the body, the blood and tissue can cause inflammation, scarring, adhesions, and cysts, leading to excruciating chronic pain, heavy bleeding, infertility, and severe fatigue.
Despite its widespread prevalence, affecting an estimated 176 million women globally, the path to diagnosis for endometriosis is notoriously protracted. In the UK, the average time from symptom onset to diagnosis stands at a staggering nine years and four months, a figure highlighted in a recent report by Endometriosis UK. This lengthy delay is attributed to a complex interplay of factors, including non-specific symptoms that can mimic other conditions, a lack of awareness among healthcare professionals, and, critically, the historical and ongoing dismissal of women’s pain.
Gill Capewell, from south-east London, vividly articulates this frustration, stating, "I hate to say it, but if this condition was happening to men, things would be very different." Her experience with fibroids and endometriosis over five years saw her passed "from pillar to post around the NHS," enduring debilitating pain and severe anaemia that often left her housebound. Despite the profound impact on her life, she felt her condition was not considered "life-threatening," leading to an eventual full hysterectomy—a decision, she notes, that was "devastating in some ways but a massive relief in others." Her words resonate with many, pointing to a systemic issue where conditions predominantly affecting women are often deprioritised in research, funding, and clinical attention.
The journey of diagnosis is often fraught with medical gaslighting, where patients’ symptoms are trivialised or attributed to psychological factors. Freya Bowen’s story is a stark example. Living with intense menstrual pain since age 14, she made repeated hospital visits during her GCSEs, only to be told that cysts and growths observed on ultrasounds would resolve spontaneously. Her pain escalated to a critical point just before her 18th birthday when she was hospitalised with a severe infection. She described the pain as so intense she "thought I was going to die," yet was "repeatedly denied pain relief." A scan eventually revealed appendiceal endometriosis, with doctors confirming her appendix would likely have burst had she left the hospital. Despite this near-fatal experience and subsequent appendectomy, she has spent over four years on a waiting list for a specialist women’s hospital, with her referral "lost and misplaced multiple times." The only consistent advice she received was to take the contraceptive pill. Freya concludes, "This is systemic misogyny playing out in our country’s medical, professional and educational environments."
The physical torment of endometriosis extends far beyond menstrual cycles, impacting bowel and bladder function, leading to chronic fatigue, and causing deep-seated pain that permeates every aspect of existence. Fahmida, a 35-year-old from Newham, experienced symptoms from age 14 but wasn’t formally diagnosed until 2017. At its worst, she was "bedbound for months at a time," describing the sensation as if someone was trying to "rip my organs out with barbed wire." An MRI in 2019 confirmed Stage 4 deep infiltrating endometriosis, the most severe form. Such severe manifestations underscore the critical need for earlier intervention and more effective management strategies.
Beyond the relentless physical pain, the mental and emotional toll is immense. Living with chronic pain, facing medical disbelief, and dealing with the uncertainty of fertility can lead to significant anxiety, depression, and feelings of isolation. Rochelle, 27, from Hertfordshire, who was diagnosed with Stage 4 endometriosis in July 2025 after years of excruciating pain, highlights this struggle: "Aside from physical pain, the mental side is just as tormenting. I have never felt so low mentally, due to the constant pain and suffering."
The impact of endometriosis also profoundly affects women’s professional lives. Managing a chronic, unpredictable condition while maintaining employment presents significant challenges, often exacerbated by a lack of understanding from employers. Fahmida, despite recently undergoing surgery, recounts being "made to feel like a burden" in the workplace instead of receiving support. She advocates for mandatory training for managers to foster understanding and support for employees with chronic conditions like endometriosis. "No woman should have to fight this disease while also fighting to be believed at work," she asserts, appealing for "understanding, dignity and the chance to continue working with the support we need."
Kayleigh Glendon, a single parent from Kent, faced the ultimate professional consequence of her condition. After a 14-year diagnostic odyssey, she was diagnosed with Stage 4 endometriosis in 2022. Following extensive surgery in 2023 that found endometriosis on her bladder, bowel, and urethra, and a hysterectomy in 2025, she was dismissed from her job due to "ill health." Despite being a "hard working, conscientious and valuable member of the team," her health struggles led to her termination. "My mental health has been at an all-time low, and losing a job I loved, due to my health issues, as you can imagine, has been soul destroying," Kayleigh shares, highlighting the devastating economic and psychological impact of employer insensitivity.
The legal framework, such as the Equality Act 2010 in the UK, defines disability as a physical or mental impairment with a substantial and long-term negative effect on day-to-day activities. While endometriosis can be classified as a disability under this act, it is not automatically recognised as such, leaving many women vulnerable and without necessary workplace protections. This lack of automatic recognition means individuals often have to prove their disability, adding another layer of stress to an already challenging situation.
Leading the charge for change is Sanju Pal, whose personal story galvanised others to share their experiences. During Endometriosis Awareness Month in 2026, Sanju has campaigned tirelessly, appearing on national media and at Parliament. Her mission is to have endometriosis officially recognised as a disability in the UK. This recognition would provide crucial protections and support in the workplace, ensuring that women are not unfairly penalised for a condition beyond their control. "The report says that it takes on average nine years and four months to get a diagnosis," Sanju explains. "That’s why my campaign goes wider than endometriosis, it’s for all gynaecological conditions that are fluctuating and recurring to be part of the definition of disability, so that women in the UK get their fair rights in the workplace. That is something that needs changing and I’m here to do it."
The experiences of Gill, Freya, Fahmida, Fern, Kayleigh, and Rochelle collectively paint a stark picture of a healthcare system and a society that are failing women with endometriosis. Their stories underscore an urgent need for increased public and professional awareness, accelerated research into effective treatments and a potential cure, and a fundamental shift in how women’s health conditions are perceived and managed. Without these systemic changes, millions will continue to suffer in silence, their lives "ruined" by a condition that demands, and deserves, immediate and comprehensive attention.