A 30-year-old just died after a lengthy treatment wait - so, why is endometriosis diagnosis taking so long?

The average wait time in the UK is nearly seven years.

Endometriosis diagnosis: a woman suffering with back pain
(Image credit: Getty Images/Westend61)

The average wait time in the UK is nearly seven years.

Aubrion Rogers was just 30-years-old when she passed away this week, following a long wait for endometriosis surgery. Sadly, many in the endo community - aptly named Endo Warriors on social media - have come forward to share that, if Rogers had been given an endometriosis diagnosis and, in turn, treatment, sooner, her life could have been saved.

"It is tragic that a young woman has lost her life from what appears to be complications from endometriosis," shares doctor Nitu Bajekal, a senior consultant obstetrician and gynaecologist and author of Living PCOS Free.

So, what happened? Does endometriosis often prove fatal? And why, on average, does endometriosis diagnosis in the UK take an average of around seven years? Bajekal answers all your questions and more, below.

Our thoughts are with Aubrion's family at this sad time.

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Endometriosis diagnosis: why does it take so long?

According to Bajekal, this situation is not a regular occurrence - "in my 35 years of experience as an ob-gyn with a specialist interest in endometriosis, this scenario is extremely rare," she shares. That being said, more does need to be done to ensure women don't wait years of their lives just to get a diagnosis and treatment for the chronic pain the condition causes.

First things first, a short definition. As in our guide to the many endometriosis symptoms, Bajekal explains that endometriosis is a chronic inflammatory oestrogen dependent condition. "Endometriosis affects up to at least one in ten women and those AFAB (assigned female at birth) from teenage years through to the menopause and can be debilitating for many, presenting a significant health burden."

Endometriosis describes tissue similar to the endometrial lining of the uterus - which sheds as your period every month - finds its way into the pelvis through a number of mechanisms, sticking itself to the back of the uterus and ovaries, which are the commonest sites.

Wondering what living with endometriosis is like? In a word, extremely painful and even more so because endometriosis diagnosis takes so long.

"Symptoms of endometriosis get overlooked very often, leaving women suffering from debilitating chronic pelvic pain, painful and heavy periods, painful sex, backache, bladder and bowel symptoms for years before a diagnosis of endometriosis is even considered," explains the doctor.

Endometriosis diagnosis: A woman in pain

When do endometriosis diagnoses' normally occur? 

Interestingly, it's often during investigations for fertility that it is first picked up, Bajekal shares.

"It takes an average of 6.7 years to be diagnosed with endometriosis," she goes on. So, why? "Painful periods are often not taken seriously and may be normalised both by health professionals and the general public."

Endometriosis can be misdiagnosed as:

  • Irritable Bowel Syndrome (IBS)
  • Pelvic Inflammatory Disease (PID)
  • Painful periods.

How do I get an endometriosis diagnosis? 

Good question. Ultrasound and nowadays an MRI scan can be useful in helping to diagnose endometriosis, shares the doctor. That's because ovarian chocolate cysts (endometrioma) may be seen on a pelvic ultrasound and an MRI can sometimes pick up deposits of endometriosis. "An MRI pelvic scan can also pick up some cases of adenomyosis (deep internal endometriosis within the muscle of the womb), which can cause new symptoms of painful periods," she continues.

However, a keyhole operative procedure called a laparoscopy is the gold standard diagnostic test for endometriosis. "While this is an invasive procedure, done under a general anaesthetic, it not only confirms the diagnosis, it also allows a thorough assessment of the pelvis," she explains. That way, biopsies can be taken to analyse the tissue and treatment to excise ovarian cysts and release scar tissue can be all done at the same time by an experienced surgeon and a plan can be made regarding further management, especially regarding fertility options and pain management.

Medical treatment for mild cases or after surgery include:

  • Hormonal medications such as the combined hormonal pill
  • Progesterone
  • Fertility drugs.

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Endometriosis treatment: 3 steps to easing your pain

If you suffer from chronic pain and fear you may have endometriosis, PCOS, PMDD or any other common female health condition - or have been diagnosed - know this: you are not alone, and there is support out there.

If you have any of the following symptoms, do not hesitate to see a doctor, she shares:

  • Painful periods
  • Heavy periods
  • Pain on vaginal intercourse
  • Bowel or bladder symptoms
  • Pain or blood while opening bowels or passing urine
  • Issues falling pregnant.

Once you've been diagnosed, there is plenty of medical help available. Bajekal suggests asking to be referred to an endo specialist if you suspect you may have it. "There is medical help available post-diagnosis," she reassures. "And early diagnosis and acknowledging your condition allows for effective treatment, pain relief and overall improvement in mental and physical wellbeing, improving your overall quality of life," she shares.

The following tips might help, too.

1. Be aware of your own body

That is, always make a note of any changes. "Seek medical advice if over the counter painkillers do not settle your period pains or your day-to-day life is being affected by pelvic pain," the doctor advises.

2. Keep a pain and menstrual calendar

Top tip: track your menstrual cycle phases so when you meet your doctor, you have all the information ready.

3. Adopt a healthy lifestyle

And finally, work towards adopting a lifestyle with adequate sleep, reduced stress levels, and a balanced diet, she shares. Why? Preliminary research is showing that all of these factors can help ease symptoms.

Do note here: By the term ‘women’, Bajekal wishes to be inclusive: people assigned female at birth (AFAB) may now belong to groups other than women, such as non-binary, intersex, and transgender people and often menstruate.

Ally Head
Senior Health, Sustainability and Relationships Editor

Ally Head is Marie Claire UK's Senior Health, Sustainability, and Relationships Editor, nine-time marathoner, and Boston Qualifying runner. Day-to-day, she works across site strategy, features, and e-commerce, reporting on the latest health updates, writing the must-read health and wellness content, and rounding up the genuinely sustainable and squat-proof gym leggings worth *adding to basket*. She's won a BSME for her sustainability work, regularly hosts panels and presents for events like the Sustainability Awards, and is a stickler for a strong stat, too, seeing over nine million total impressions on the January 2023 Wellness Issue she oversaw. Follow Ally on Instagram for more or get in touch.