The All Party Group (APPG) on the 2020 Endometriosis Investigation Report called for urgent government action to support 1.5 million endometriosis patients in the UK.
The research surveyed over 10,000 people with a confirmed diagnosis of endometriosis and found the The average time to diagnosis is 8 years. the same as a decade ago.
Prior to diagnosis, 58% visited their GP more than ten times with symptoms, 43% visited doctors in the hospital more than five times, and 53% had visited A&E. The report highlighted the devastating impact the condition had on people’s lives and noted that once diagnosed:
- 95% said endometriosis / the symptoms of endometriosis have a negative or very negative impact on their wellbeing.
- 89% felt isolated because of their endometriosis.
- 90% would like access to psychological support, but they were not offered it. 81% said that endometriosis had a negative or very negative impact on their mental health.
- Only 19% knew if they were seen at an endometriosis specialist center.
- 58% would have liked fertility support and treatment, but were not offered, even though endometriosis doubled the risk
- 72% were not given written information at diagnosis, leaving them without the knowledge and advice they need to make informed decisions about their health care.
- 38% were worried about losing their job, while 35% had lower income due to endometriosis.
What is endometriosis?
Over 1.5 people with a uterus have endometriosis.
It is a chronic and often debilitating disease in which cells similar to those in the lining of the uterus are found elsewhere in the body, mostly in the pelvic cavity, but also in the diaphragm or thorax. Each month, these cells react in the same way as those that line, build up, break down, and bleed the womb. The blood cannot escape and causes pain, inflammation, and scar tissue formation.
Some people have mild symptoms, others severe. Symptoms include lower stomach and back pain, pain preventing daily activities, and heavy periods. It can lead to serious problems like infertility, fatigue, bowel and bladder problems. There is no cure, and treatment may include pain medication, hormone therapy, or surgery, including a hysterectomy.
The report highlighted that endometriosis pain is often normalized and dismissed as “period pain” by family or friends. Symptoms are not recognized by healthcare doctors, or sometimes the magnitude of the pain is simply not recognized.
Important recommendations from APPG
The report examines the issues related to diagnosis, treatment, and care pathways and explores the broader problems of living with endometriosis, from the effects on education and employment to mental health. The report also highlighted the barriers faced by black, Asian and ethnic minorities, as well as those who identify as LGBTQ +, with particular challenges related to gender language use and fertility.
APPG urged the government to commit to a number of measures for those with the condition:
- Commitment to reducing the average diagnosis times with a target of 4 years or less by 2025 and one year or less by 2030.
- To ensure that a Basis for the diagnosis, treatment and treatment of endometriosis by implementing the NICE Endometriosis Treatment and Management Policy (2017), which was passed but not implemented across the UK. Up to 10% of patients with endometriosis have the disease outside the pelvic cavity. However, the NICE guideline only provides one route of treatment for endometriosis within the pelvic cavity only. The APPG urges NICE to ensure that care pathways are developed and implemented for all locations of endometriosis, starting with thoracic endometriosis.
- Study of barriers to access to care for people with black, Asian and ethnic minorities and to eradicate ethnic and gender differences in medical research.
- Investing in research to find the cause of endometriosis, better treatment, management and diagnosis options, and one day a cure.
- A Commitment of all 4 nations to include the mandatory wellbeing of menstruation in the curriculum so that young people can identify the warning signs of menstrual cramps and know when to seek help. This will be mandatory in schools in England from 2020 but not across the UK.
It is hoped that the government will take these recommendations seriously and ensure that people with endometriosis receive an immediate diagnosis and have access to vital physical and mental health support to help them manage this lifelong condition.
It is clear that action is needed now.
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