Why endometriosis often goes undiagnosed and what to do about it
Despite affecting millions of women, endometriosis often goes undiagnosed for years, leaving many to suffer in silence with debilitating pain, fertility issues, and misunderstood symptoms.
For many women, pain is a daily struggle, often ignored. Endometriosis, a chronic inflammatory disorder affecting one in 10 women worldwide, turns daily routines into challenges. Despite its prevalence, it is often underdiagnosed, and rarely discussed openly.
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Far from being just ‘bad period pain’, endometriosis is a complex condition where tissue, similar to the uterine lining, grows in places it shouldn’t – outside the uterus, on the ovaries, fallopian tubes, bowel, and even the lining of the pelvis. With every menstrual cycle, this tissue behaves as it would inside the womb – thickening, breaking down, and bleeding – but with nowhere to go, it triggers inflammation, scarring, and intense pain. Over time, it can cause organs to fuse and, in many cases, result in infertility.
Dr Christo Benecke, a gynaecologist at Netcare Christiaan Barnard Memorial Hospital, emphasises that the silence around endometriosis contributes to its insidious nature. He highlights the importance of reaching women who suffer in silence, as this condition significantly impacts quality of life and often goes undiagnosed due to misunderstood symptoms. Women typically seek help for relentless pelvic pain or difficulty conceiving. Endometriosis pain can vary from sharp and stabbing, to dull and constant, making sex painful and complicating urination and bowel movements. For some, the pain cycles, while others experience it continuously.
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Diagnosing endometriosis is often complex, due to its varying presentations. Some women may experience severe symptoms with little disease visible, while others have extensive lesions, but minimal pain. This can lead to lengthy delays in diagnosis, which typically requires a laparoscopy to identify the tissue. Treatment usually starts conservatively, with pain management and hormone therapy, including contraceptive pills, hormone injections, or progesterone.
When medical management fails, surgical excision becomes necessary, requiring precision and expertise. Benecke emphasises the importance of getting the initial surgery right, as data shows improved outcomes. He also clarifies a misconception: A hysterectomy is not a cure for endometriosis, and is rarely needed since the condition is caused by tissue outside the womb..
Endometriosis is not just a physical struggle; it has significant emotional and psychological impacts. Chronic pain, disruptions to daily life, relationship strains, and infertility fears can lead to depression and anxiety. Recognising this, Benecke collaborates with a multidisciplinary team, including psychologists and physiotherapists, to offer holistic healing. Certain factors, such as early menstruation, never giving birth, and a family history, increase the risk of developing endometriosis, but even those without these factors can be affected, highlighting the importance of awareness, despite the absence of symptoms.
If you’re experiencing persistent pelvic pain, painful periods, or difficulty conceiving, don’t ignore it. Trust your instincts, see a GP, or consult a specialist who understands these issues. Help is available, and with the right care, there is hope. No one should live in silence or endure pain. Let’s break the silence around endometriosis, and ensure women receive the care and compassion they deserve.
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