The Silent Struggle of Endometriosis and the Fight for Women’s Health

Endometriosis affects an estimated 1 in 10 women and people assigned female at birth, yet it remains one of the most misunderstood and chronically overlooked health conditions today.

For generations, severe menstrual pain has been brushed aside as something to “put up with,” leaving countless people suffering in silence. At the same time, their symptoms are dismissed, minimised, or written off as “normal.” It’s hardly surprising (unfortunately), given that women weren’t routinely included in clinical trials until the 1990s, a legacy that still fuels significant gaps in knowledge, treatment, and care.

Meanwhile, real people are in real pain every day. All while navigating a healthcare system that too often fails to take gynaecological pain seriously.

This blog explores what endometriosis is, why diagnosis can take so long, how lifestyle changes can support symptom management, and why the fight for women’s health equity is far, far from over.

What is Endometriosis?

Endometriosis is far more complex than the old trope of “bad periods.” It’s a chronic inflammatory condition in which tissue similar to the lining of the womb grows outside the womb, often landing on the ovaries, the pelvic lining, and surrounding organs where it doesn’t belong. These cells respond to hormones just as they do in the uterus, which means they can cause inflammation, swelling, scarring, and pain that affect far more than the menstrual cycle.

There isn’t just one form of the disease, either. Some people have superficial peritoneal disease, while others develop ovarian cysts known as endometriomas. More severe cases may involve deep endometriosis that embeds into the bladder or bowel, and in rarer instances, the disease appears outside the pelvis altogether.

Symptoms vary dramatically from person to person. Some experience debilitating symptoms while others experience none at all. But none of it should be dismissed. Endometriosis is a complex, systemic condition that affects far more than period pain.

The Most Common Endometriosis Symptoms

Endometriosis can present in many ways and varies from person to person. But some common endometriosis symptoms include:

• Chronic pelvic pain
  
• Heavy or extremely painful periods
  
• Pain during sex
  
• Pain when urinating or opening the bowels
  
• Persistent fatigue
  
• Bloating
  
• Difficulty getting pregnant

None of these symptoms is minor, yet many overlap with other conditions such as IBS, PCOS, and fibroids. These overlapping symptoms make an already difficult-to-diagnose condition even more challenging, often leaving people bouncing between clinics for years without clear answers.

Women describe missing school, leaving jobs, avoiding social events, or even ending up in A&E because their pain was so severe. And still, too many are told it’s “just bad periods.” If you want to read about the impact endometriosis has on patients' lives, check out these resources:

• Living with Endometriosis: A 12 Year Journey
  
• You’re Not Alone: Coping with Endometriosis
  
• Patient Stories: Living with Endometriosis
  

Diagnosing Endometriosis (And Why It Takes So Long)

It shouldn’t take half a lifetime to understand your own pain, yet most people with endometriosis wait anywhere from 5 to 12 years for a diagnosis. Why? Because the only way to definitively confirm the condition is through a laparoscopy, a surgical procedure. Until someone reaches that point, they often circle through misdiagnoses, inconclusive imaging, contradictory opinions, and repeated dismissal of their symptoms.

Much of this stems from limited GP training and deep knowledge gaps within the system. Endometriosis UK’s research shows that experiences vary wildly, with far too many people told their pain is normal or “nothing serious.” This is precisely why patient advocates and charities like Endometriosis UK have become lifelines for helping people feel believed, informed, and empowered to push for the care they need and deserve.

Why Isn’t There More Endometriosis Research and Funding?

Despite affecting millions of people, endometriosis remains one of the most underfunded and underresearched health conditions worldwide. 

Women’s health has historically received only a fraction of the investment given to comparably prevalent diseases. Endometriosis, in particular, sits near the bottom of the list. This lack of research and funding is due to generations of deeply-rooted systemic biases: menstrual stigma, the normalisation of severe period pain, and decades of gendered dismissal that kept women out of clinical trials until the 1990s.

Researchers also face scientific challenges. Endometriosis presents in many forms, involves complex immune and hormonal pathways, and for years lacked reliable animal models, slowing progress before it even began. But just because it’s challenging doesn’t mean the research shouldn’t be done.

What’s urgently needed now is meaningful research funding, non-invasive diagnostic tools, and long-term commitment to finally understanding a disease that has been ignored for far too long.

Strategies for Living with Endometriosis

Living with endometriosis often means piecing together a toolkit of supportive habits that soothe inflammation, calm the nervous system, and offer comfort on the most challenging days. While these approaches don’t replace medical treatment, many people find them helpful alongside their clinical care.

• Anti-inflammatory eating: Focus on anti-inflammatory foods like omega-3s (such as salmon, walnuts, and chia seeds), colourful fruits and vegetables, and plenty of hydration. 
  
• Avoid triggering foods: Reducing inflammatory triggers such as alcohol, red meat, ultra-processed foods, and, for some people, gluten, dairy, or caffeine can help ease symptoms.
  
• Supportive supplements: Research shows magnesium for muscle relaxation, vitamin D for immune and hormonal balance, and omega-3 fatty acids for inflammation are commonly used. 
  
• Gentle, low-impact movement: Walking, stretching, yoga, pilates, or other light exercise can reduce pain sensitivity and support overall wellbeing.
  
• Heat therapy: A warm bath, hot water bottle, or heating pad can soothe pelvic pain and ease deep cramping during flare-ups.
  
• Stress reduction and emotional support: Mindfulness, breathing exercises, counselling, journaling, or regular check-ins with loved ones can help manage the emotional toll of chronic pain.
  
• Complementary therapies: Acupuncture, pelvic-floor physiotherapy, massage, or chiropractic support may help with muscle tension, pelvic pain, and nervous system regulation.
  
• Comfortable clothing: Comfort matters, especially during bloating or pain flare-ups. JulieMay Lingerie’s organic cotton and silk knickers don’t dig in and are naturally breathable, non-irritating, and gentle against tender skin.

Supporting Someone You Love Through Endometriosis

Supporting a loved one with endometriosis starts with believing them. Listen without minimising their symptoms or suggesting the pain is “normal.” This is an exhausting dismissal that many patients face for years. 

Small acts of support can make an enormous difference. Help track symptoms, drive them to appointments, or take on everyday tasks when a flare-up wipes them out. Encourage them to seek specialist care, push for referrals, and feel confident asking for second opinions when their concerns aren’t taken seriously.

If you don’t have endometriosis yourself, it is impossible to fully understand what someone with the condition is going through. Listen to them with a compassionate ear, but try to avoid pretending that you “get it.” Instead, gently suggest therapy, support groups, or peer networks where your loved one can share experiences with people who genuinely understand.

Endometriosis and the Fight for Women’s Health Equity

Endometriosis doesn’t exist in a vacuum. It sits within a long, troubling pattern of underfunded and undervalued women’s health research. The years-long diagnostic delays, the massive economic burden of managing the condition, and the staggering impact on quality of life all point to a deeper inequity that has shaped healthcare for generations. But things are shifting. 

Advocacy groups and persistent public pressure are finally forcing policymakers to pay attention and fund the research that should have existed decades ago. Still, real change requires culturally competent, gender-informed care and better GP training. 

One study found that only 25% of GPs feel they know enough about endometriosis, despite 1 in 10 women and people assigned female at birth having endometriosis. That means for every four GPs a patient might see, three may feel under-prepared to recognise, diagnose, or manage a disease that is as common as asthma or diabetes. This mismatch between prevalence and provider confidence is a major contributor to the nearly decade-long diagnostic delays so many people experience.

If you have endometriosis and are in search of information, explore Endometriosis UK’s directory of support services. You don’t have to face the pain alone.