Endometriosis: Latest Study Shows On Average A Nine-Year Weight For A Diagnosis

A recent study by the charity Endometriosis UK revealed that women are waiting almost nine years for a diagnosis of endometriosis. Endometriosis UK showed that following the pandemic 47% of those surveyed had visited their GP ten or more times before receiving a diagnosis of endometriosis with 70% visiting five times or more.

BBC News has revealed some cases that are absolutely devastating:

“Nobody listened to me, and to feel like women are still going through that 20 years after my diagnosis is horrific,” said Michelle Bates. “I went back and forth to the GP with my mum, who was the only one who believed in my pain,” she said.

“I remember passing out at work one day. I was in so much pain,” recalled Ms Bates, who works in finance.
An ultrasound for suspected appendicitis revealed three very large cysts, including one hanging from her ovary that was 12cm (4.7 inch) in diameter.
She had just got married, and was told by her surgeon she had the worst case of endometriosis they had ever seen.

Lowri Shepstone, from Brecon, Powys, had to wait 17 years for a diagnosis and said she was also told her symptoms were not abnormal.

“Have a hot water bottle, and we’ll put you on the pill,” was her GP’s response when she was a teenager, she said.
“The day I actually got a diagnosis, I nearly burst into tears.”

Ms Shepstone also pointed out women suffering from endometriosis suffer from “endo belly”, caused by bloating. “You can look eight months pregnant but not be pregnant and potentially not be able to have children,” she said.

What is Endometriosis?

Endometriosis is a disease that deposits hormone responsive abnormal tissue outside the womb. The cause is unknown. There are 10.5 million women in the UK between the ages of 15 and 45 and the prevalence of endometriosis is 3%. Severe endometriosis ranges from 5-30% of affected patients. It is estimated that there are 5,000 women with severe disease *.

Symptoms

Symptoms include pelvic pain, period pain that stops normal activities, pain when passing urine or bowel movements, feeling sick, constipation or diarrhoea** .

Early Diagnosis

Endometriosis UK submit that early diagnosis is important as the disease may progress causing worsening symptoms, organ damage and restricting decisions regarding fertility. They state that this delay is unacceptable and is having a significant impact on women’s physical and mental health causing pain and affecting fertility.

Main Treatments for severe/moderate endometriosis

Treatment of severe endometriosis was included in the Government’s Women’s Health Strategy which was launched in 2022. It includes a service specification for women with severe endometriosis who will have access to a treatment pathway to laparoscopy (keyhole surgery). This is where small abdominal cuts are made so that the endometriosis tissue can be destroyed or cut out. Other treatments include hysterectomy which involves the removal of the uterus and sometimes the ovaries as well.

Conclusion

Increased awareness of endometriosis is needed to help women to recognise the symptoms and obtain support. Greater awareness and training in the health service are required so that this condition is diagnosed and treated promptly. If earlier diagnosis and treatment occurred, the impact of this condition on women’s physical and mental health would be reduced and it may also be possible that some of the more serious surgical interventions could be avoided or at the very least delayed.

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* E10/s/a NHS standard contract for complex gynaecology – severe endometriosis

** Endometriosis -NHS