The painful path to endometriosis diagnosis

What is endometriosis?

Endometriosis is a chronic and often debilitating condition that affects millions of women and those assigned female at birth worldwide, yet it remains one of the most misunderstood and underdiagnosed diseases in modern medicine.

Endometriosis is when cells similar to those lining the womb grow elsewhere in the body.

These cells behave like womb lining cells during the menstrual cycle, building up and breaking down.

The blood has no way to escape, causing inflammation, pain, and scar tissue.

Endometriosis is not a bad period: it is a chronic, debilitating disease that affects every aspect of a woman's life and which doesn't have a cure.

Sophie Seger's story: Misdiagnosis and medical gaslighting

Seger said that she spent months being hospitalised, misdiagnosed and being told she was being dramatic.

One particularly distressing misdiagnosis was pelvic inflammatory disease (PID) with medical professionals telling Seger her partner must be cheating on her.

Seger's experience highlights the emotional toll of endometriosis on one's quality of life, relationships and day-to-day life.

Seger said: "Even today, there will be times where I think that something's in my head or I'm just being dramatic because that's all I was told for a year."

The dismissive attitudes of healthcare providers left her questioning her own reality and doubting her relationship with her body.

Seger faced significant emotional and physical challenges due to a delayed diagnosis and inadequate treatment.

She added: "You lose all trust in yourself and your relationship with your own body because you just become convinced that you're not to be trusted because that's what you're constantly being told," she explains.

Despite being told by doctors that she did not have endometriosis, Seger's persistence led to the discovery of stage four endometriosis.

Seger said: "If I hadn't had surgery when I had it, it would have ended up killing my kidney."

Jennifer Moore's story : Medical gaslighting and "medical mysogyny" stemming from a systemic lack of education

For more than two decades, Moore's pain was dismissed as a normal part of menstruation.

Moore was left on the pill for 22 years with no further investigation into her pain.

Moore said:"Every time I would come off the pill, I would have this same intense, debilitating week".

"I started to believe that it was a problem in my head rather than in my body."

"My first endometriosis symptom was when I was 11 years old.

"It was my first period.

"I didn't know what to expect, but I absolutely was not expecting to be curled up on the floor of my parents' bedroom screaming, unable to straighten my back, passing out from blood loss.”

During the COVID-19 lockdown in 2021, Moore decided to stop taking the pill and experienced the full extent of her symptoms.

Moore said: "Within two to three cycles, the pain that I was having during my withdrawal bleed was every single day.

"I was pretty much bed-bound and I had to walk with sticks because my legs would just give out from underneath me."

The diagnosis process

The journey to a proper diagnosis was fraught with challenges.

Moore spoke about how painful and invasive the diagnosis process was for her.

She said:"The scan was traumatic.

"They couldn't find part of my anatomy and were ramming the probe around, trying to do it by brute force."

The impact of endometriosis on relationships

The impact of endometriosis extends beyond physical pain.

Moore describes how the disease affected her personal life, relationships, intimacy, and her relationship with her body.

The decision to undergo a hysterectomy, thereby removing her uterus and losing the ability to have children or choose to have them, was particularly challenging.

Moore said: "Having that choice removed has been really, really hard.

"I didn't realise until after my surgery how much I valued that choice."

A historic gender pain gap

Dr Karolina Afors, Consultant Gynaecologist at The Portland Hospital and UCLH said: "We always quote in the literature, seven and a half years as the average diagnosis time, but in my experience, it normally ends up being about ten years."

Dr. Afors stated that the post-COVID waiting lists have exacerbated these delays, with endometriosis surgeries being deprioritised compared to other treatments.

The complexity of severe cases often necessitates multi-disciplinary teams, adding to scheduling challenges.

Dr. Afors advocated for increased awareness and education.

She said: "I don't think I ever really learned that much about endometriosis at medical school.

"We're seeing higher rates of adolescent endometriosis but I think it was always there but that they're being referred in more."

Dr. Afors stressed the importance of integrating endometriosis education into medical training and raising awareness from a young age in schools.

Endometriosis is difficult to detect, often eluding initial scans and even MRIs unless the lesions are sizeable.

Dr. Afors mentioned a promising saliva mRNA test, though it is currently available only privately.

She emphasised the need for more accessible and reliable diagnostic tests.

Dr. Afors pointed out that women are often dismissed as being hysterical, a bias that affects funding and treatment.

"However, realising this potential will require a concerted effort from all stakeholders to prioritise investment and innovation in women's health."

Women presenting with pain receive treatment much slower than men.

Dr. Afors underlined the need for a personalised approach to treatment, recognising that what works for one patient may not work for another and highlighted the importance of offering a range of medical and surgical options and ensuring patients have a choice.

She said: "The more treatments that I can offer the patients to provide personalised care plans the better."

The consultant gynaecologist called for proactive healthcare practices, as seen in other countries where regular gynaecological visits are the norm.

Through increased awareness, better education, and a more personalised approach to treatment, the journey to diagnosis and management can be improved.

Dr. Afors added: "Endometriosis is a complex, chronic condition that requires targeted, efficient treatments that address the root cause, not just the symptoms.

"Raising awareness and shifting perceptions is crucial to driving the necessary change.

"The path forward involves better education, more funding, and improved diagnostic tools."

Dr. Afors' insights underscore the need for systemic changes to better support women suffering from this chronic condition.

She mentioned that the two major obstacles to progress are the regulatory challenges due to women's health issues being deprioritised and the failure of payors to recognise endometriosis and similar conditions as urgent unmet needs.

Dr. Afors said: "To overcome these challenges, collaboration across all stakeholders is paramount.

"Only by uniting these critical voices can we transform the healthcare paradigm and close the persistent health disparities faced by those living with endometriosis and other women's diseases.”

All interviewees shared the belief that education is the key to better and earlier diagnosis for a disease that is about as common as asthma or diabetes.