What Women with Endometriosis Want You to Know: A Glimpse into Their Struggles
Endometriosis is more than just a medical condition—it’s a constant, invisible battle that affects nearly 1 in 10 women worldwide. Despite being a prevalent disease, it often goes undiagnosed for years or is misdiagnosed, leaving countless women to suffer in silence. The endometrium, the tissue that typically lines the inside of the uterus, begins to grow outside the uterus in women with endometriosis. This growth can occur on the ovaries, fallopian tubes, the outer surface of the uterus, and other pelvic organs. In rare cases, it even spreads beyond the pelvic region. Yet, its impact reaches far beyond physical symptoms—it affects relationships, mental health, career, and self-image.
Endometriosis is painful because the tissue growing outside the uterus behaves like the lining inside it—thickening, breaking down, and shedding during the menstrual cycle. However, unlike the tissue inside the uterus, which is expelled from the body, the tissue outside the uterus has no way to exit. This causes irritation, inflammation, and sometimes scarring or adhesions, where organs stick together. The constant internal inflammation can lead to chronic pelvic pain, painful periods, painful intercourse, and even pain during bowel movements or urination. The severity of the pain can vary, but for many women, it’s intense and unrelenting, affecting both physical and emotional well-being.
As someone living with stage 4 deep infiltrating endometriosis, I know firsthand how overwhelming the pain and chronic illness can be. Day-to-day tasks, which others might take for granted, become monumental challenges when your body constantly demands attention. I spent nearly 8 years seeking an accurate diagnosis, only to discover that by the time I found one, my condition had already reached its most severe stage. Endometriosis has touched every corner of my life—from socialising and working to even managing seemingly simple chores. But the most painful part is that so many people don’t understand the reality of living with endometriosis. I wish that more people could grasp what it’s truly like, so that they could offer compassion and support to those affected by it.
To shed light on the experiences of other women navigating life with endometriosis, I spoke to several warriors who were eager to share their stories.
Jolene Abrahams’ 12-Year Struggle
Jolene Abrahams had to wait 12 years before receiving a proper diagnosis for her endometriosis. “It’s so unpredictable,” she says. “Endometriosis doesn’t just affect you during your period; it affects every day of your life.” Jolene, like many, has faced the heartbreak of infertility, with the disease robbing her of the chance to have children. In addition, endometriosis has taken a toll on her romantic relationships, making sex a painful and emotional ordeal. Thankfully, Jolene’s husband is a beacon of support, understanding her struggles and standing by her side despite the challenges her condition presents.
Kaashiefa Benjamin’s Whole-Body Battle
For Kaashiefa Benjamin, the impact of endometriosis is not confined to the reproductive organs—it affects her entire body. “Endometriosis is not just a gynaecological disease,” she says, “it’s a whole-body disease.” Kaashiefa describes the constant pain as a part of her normal life, and while others may see her as just “sick,” she lives with a daily reminder that there is no escaping the grip of the disease. The unpredictability of her symptoms has made maintaining social relationships difficult. Kaashiefa, like many women with endometriosis, sometimes has to isolate herself because plans can’t always be kept and commitments become nearly impossible to fulfil.
Mishkaah’s Struggle with Unreliability and Judgement
Mishkaah shared how endometriosis has severely affected both her physical and emotional health. Her condition often makes her seem unreliable or untrustworthy. “Sometimes I can’t do the things I promised because I’m too unwell, and people don’t understand why,” she says. Like so many women living with this condition, she wishes people were more patient, understanding, and compassionate, especially when the pain isn’t visible to the outside world.
Yasmine Khan’s Invisible Pain
For Yasmine Khan, the emotional toll of endometriosis has been just as debilitating as the physical pain. She recalls how her friendships deteriorated over time, with people growing tired of her being “in pain all the time.” Her ex-husband, too, struggled to cope with her chronic illness, eventually leading to the breakdown of their marriage. “Endometriosis is an invisible disease,” Yasmine explains. “Just because someone looks fine on the outside doesn’t mean they’re not suffering on the inside.” She wishes people could understand that the pain is real and it doesn’t always show.
Mou’s Embarrassment and Loss
Mou’s journey with endometriosis highlights another painful aspect of living with the disease—the humiliation of dealing with uncontrollable bleeding in public. “Sometimes it feels like leaving my house isn’t meant for me,” she admits. For her, endometriosis has also meant the loss of several organs, making the disease a life-altering experience. “Endometriosis isn’t just about your uterus,” she says. “It can cause you to lose parts of your body as it progresses.” This harsh reality often makes women feel isolated, unable to share their experiences without facing judgement or misunderstanding.
Ashanti and the Dismissal of Pain
Like many others, Ashanti’s struggle with endometriosis was dismissed as attention-seeking. “People often told me that my symptoms were all in my head,” she recalls. Both Ashanti and I began experiencing symptoms of endometriosis as young girls—me at 11 and her at 12. For both of us, constant pain made school and social interactions difficult, and we were often seen as unreliable. The pain that others couldn’t see became a source of shame, and understanding was in short supply.
Sam’s 20-Year Journey to Diagnosis
Sam, who lived with endometriosis for 20 years before finally receiving a diagnosis, shared how the disease has deeply affected her personal life. “It causes painful sex, and I have to take pain medication before and after intercourse, without my husband knowing,” she confesses. Despite being supported by her partner, Sam feels a deep sense of guilt because she can’t meet the expectations of society as a wife and mother. “There’s no cure for endometriosis,” she says. “When I say I’m in pain, I wish people would just believe me.”
Halz and the Struggles of Motherhood
For Halz, being a mum with endometriosis has been a constant struggle. “Sometimes, I can’t do the things other mothers can do with their children, and it’s hard for them to understand why,” she says. Halz worries about losing her job because of the unpredictable nature of her condition and the lack of workplace accommodation. Like many others, she navigates the emotional burden of having to cancel plans or miss events, often leaving her feeling isolated and misunderstood.
The Invisible Struggles of Endometriosis
The stories shared by these women shed light on the complexities of living with endometriosis. It’s not just about the physical pain; it’s about the emotional toll, the isolation, and the unrelenting nature of a disease that so many still don’t understand. Endometriosis affects every part of life—from relationships to careers and self-worth. It’s often invisible to the outside world, yet it’s a constant presence that no woman with the disease can escape.
If there’s one thing we wish you knew, it’s this: the pain is real, and it affects every part of our lives. We are not attention-seeking, and we are not lazy. We are warriors, doing our best to navigate a world that doesn’t always understand what it’s like to live with endometriosis. Compassion, patience, and belief in our pain can go a long way in making us feel seen, heard, and supported.
About the author:
Nadine Dirks is a writer, author, opinion-maker, activist, and communications expert. Her work, interests, and expertise lie in intersectional feminism, gender, and sexuality and include sexual and reproductive health and rights, particularly of marginalised people.
