Urgent call for improvement in Endometriosis care

Endometriosis is a painful and debilitating condition. Endometrial tissue can grow in other areas of the body, such as the ovaries and fallopian tubes. It causes painful periods, pain during intercourse, irregular bleeding, digestive problems, infertility and other symptoms. The condition affects around 200 million women worldwide. Around one in ten women in the US and UK are affected. Yet, it is often misdiagnosed or missed altogether. Lack of education on the part of patients and lack of awareness by health care professionals are why endometriosis goes undetected.

UK report is dire

Now, UK members of parliament (MPs) are calling for an improvement in the situation following publication of a recent report. The report was the result of an inquiry into the situation in the UK. It makes dire reading!

  • The average wait for a diagnosis in the UK was 8 years
  • There hasn’t been any improvement in waiting times in over a decade
  • 58% of people visited the GP more than 10 times before diagnosis
  • 53% went to A&E (emergency room) with symptoms before diagnosis!

The majority of the 10,000 endometriosis patients who took part told MPs:

  • their mental health, education and careers had been damaged by the condition
  • 90% said they would have liked access to psychological support but were never offered it
  • 35% reported a reduced income.

Sad theme across report

One patient said, “Endometriosis is life-changing. The pain can be so varied but at its worst, it is crippling to the point that the strongest painkillers only seem to make me drowsy. After several warnings for my sickness, the final straw was returning from surgery, which ended up causing me kidney failure and being given an official disciplinary. Knowing that I still needed another operation to reverse my bowel, I felt I had no choice but to quit.”

Her experience is sadly far from untypical.

The MPs are calling on the government to make some urgent changes and are recommending that:

  • The school curriculum should include education on menstrual wellbeing, so young women know the warning signs and know when to seek help
  • Training should be reviewed for GPs, nurses and gynaecologists
  • Further Investment should be made in research to find a cure.

Unacceptable situation

Sir David Amess, MP, who chaired the inquiry said, “It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously or downplayed as linked to the menstrual cycle and periods.”

Nadine Dorries, Minister for Women’s Health, believes this shouldn’t be the case that women are waiting so long to be diagnosed. She said, “While awareness of this and other painful and potentially debilitating gynaecological conditions are increasing, there is still a long way to go! Clinicians have a vital role in removing the stigma associated with endometriosis and I would urge them to follow the NICE guidelines and to do all they can to support the mental and physical health of those suffering from this condition.”

Hopefully, this call to action will have an impact on future generations of younger UK women, sparing them the long wait for diagnosis and treatment of endometriosis.

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