Women with endometriosis face ‘systemic misogyny’.

"I hate to say it, but if this condition was happening to men, things would be very different," states Gill Capewell, her voice laced with a frustration that echoes through the testimonies of countless women struggling with endometriosis. These women, united by their shared experience of this debilitating condition, have bravely come forward, offering not just their personal narratives but also a trove of medical records, photographs, and treatment histories. In one poignant case, a dismissal letter starkly illustrates the professional hurdles they face. Beyond the shared diagnosis of endometriosis, a common thread binds them: an urgent desire for their stories to be heard, to foster a deeper understanding of the disease, and to pave the way for potential cures.

Gill, a resident of south-east London, recounts a five-year odyssey of enduring fibroids and endometriosis, a journey marked by constant referrals within the NHS and debilitating pain accompanied by such severe bleeding that it led to profound anemia. "At points, I couldn’t leave the house because the blood flow was so intense and yet I could not get an appointment on the NHS to get anything done about it," she shares, her voice heavy with the memory of being dismissed. "It was ruining my life and yet not considered life-threatening." The profound impact of endometriosis on her life is further underscored by her decision to undergo a full hysterectomy, a choice made despite her desire to have children. "It is obviously devastating in some ways but a massive relief in others," she admits, highlighting the complex emotional landscape of managing such a chronic illness.

Freya Bowen’s struggle began at the tender age of 14, with intense menstrual pain that persisted throughout her formative years. During her GCSEs, repeated hospital visits yielded dismissive advice, with ultrasound findings of cysts and growths attributed to transient issues. The severity of her condition became starkly apparent just before her 18th birthday when a three-day hospital admission for a serious infection was met with an appalling lack of pain management. "Yet I was repeatedly denied pain relief, to the point another patient across from me got up and looked for a nurse to treat me," Freya recounts, her voice trembling with the memory of such profound neglect. A subsequent scan revealed appendiceal endometriosis, a diagnosis that illuminated years of undiagnosed suffering. She was informed that her appendix likely would have ruptured had she not sought medical attention. Following the removal of her appendix, she was placed on a waiting list for a specialist women’s hospital, a wait that has now stretched over four years. "I am now 22 and have been waiting for over four years to leave that wait list, having had the referral lost and misplaced multiple times when it was almost the cause of my death," she explains, her words a testament to the systemic failures in care. Despite ongoing pain, the only recourse offered has been the contraceptive pill, a treatment that fails to address the root cause of her suffering. "This is systemic misogyny playing out in our country’s medical, professional and educational environments," she declares, a powerful indictment of the societal and institutional biases at play.

Fahmida, a 35-year-old from Newham, echoes this sentiment, stating, "Endometriosis is not ‘just bad periods’, it is a serious, life-altering disease that affects every part of a woman’s life, from her health to her career and fertility." Her own journey with endometriosis began at 14, but a formal diagnosis was not received until 2017. At her worst, she describes being "bedbound for months at a time" and experiencing pain so severe it felt as though her "organs were being ripped out with barbed wire." In 2019, an MRI scan revealed Stage 4 deep infiltrating endometriosis, the most severe form of the condition. While her medical challenges have been immense, Fahmida highlights the even greater difficulty of navigating the workplace. "While my medical journey has been incredibly challenging, what has been even harder has been my experience in the workplace," she states, having recently undergone surgery. Instead of receiving empathy and support for her "chronic and debilitating condition," she often felt "made to feel like a burden." She advocates for mandatory training for managers to equip them with the understanding and skills to support employees living with conditions like endometriosis. "No woman should have to fight this disease while also fighting to be believed at work," she asserts. "All we are asking for is understanding, dignity and the chance to continue working with the support we need."

Fern Dixon’s experience paints a similarly grim picture. So accustomed was she to the agony of her periods that she nearly succumbed to peritonitis and sepsis in early 2025. "The reason I didn’t seek any medical help until I was delirious with a fever is because the pain was nowhere near as bad as a regular period is for me," she explained, her words a stark revelation of how normalized severe pain has become. For 25 years, she sought help for her debilitating periods, only to be met with disbelief, dismissed as "too sensitive," or told she was "just unlucky." A four-month wait preceded the removal of her appendix, during which endometriosis was discovered in her peritoneal sac. "I asked if it was found on the appendix, but the infection and scarring was so bad the doctor couldn’t say for certain, but he suspected it was the underlying cause of the rupture," she says. Despite this near-fatal ordeal, she has only undergone one transvaginal ultrasound and has not been offered further treatment, a testament to the profound systemic neglect women with endometriosis face.

Single mother Kayleigh Glendon, from Kent, endured a 14-year battle to receive a diagnosis of Stage 4 endometriosis in 2022. "In 2023, I had surgery and found (endometriosis) was on my bladder, bowel, urethra, you name it, it was there," she recalls. In 2025, at the age of 38, she underwent a hysterectomy. Tragically, the day before her surgery, she was dismissed from her job due to "ill health," despite being recognized as a "hard working, conscientious and valuable member of the team." She is now awaiting further surgery to remove her gallbladder. "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," she confides, her voice heavy with the emotional toll of her experiences. Her former employer has been contacted for comment.

Rochelle, a 27-year-old from Hertfordshire, began experiencing painful periods at the age of 13. While the pill at 14 managed excessive bleeding, by 20, excruciating monthly pain returned. The Mirena intrauterine device offered temporary relief for two years, after which the pain escalated to an unprecedented level. Fortunately, Rochelle’s access to private healthcare through her work and a supportive manager facilitated an MRI scan in July 2025, confirming severe Stage 4 endometriosis. She has since undergone surgery. "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," she shares, underscoring the profound psychological impact of the disease.

Sanju Pal, whose initial story galvanized others to share their experiences, has found herself at the forefront of a significant advocacy movement in early 2026. Her appearances on national television and radio, coupled with her participation in parliamentary events during Endometriosis Awareness Month, underscore her unwavering commitment to having endometriosis officially recognized as a disability. Under the UK’s Equality Act 2010, a disability is defined as a physical or mental impairment with a substantial and long-term negative effect on daily activities. While endometriosis can qualify, it is not automatically recognized as such. Arriving at Portcullis House in Westminster for the launch of new figures from Endometriosis UK, Sanju expressed her reinforced determination to effect change. "The report says that it takes on average nine years and four months to get a diagnosis," she states. "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." Her powerful advocacy aims to ensure that women with endometriosis and other gynecological conditions receive the recognition, support, and rights they deserve, both in healthcare and in the workplace, dismantling the systemic misogyny that has long plagued their experiences.