A survey by BMI Healthcare has found that 51% of endometriosis sufferers are waiting more than seven years from the onset of symptoms before receiving a diagnosis.
The same survey found that the mental health effects of endometriosis can be just as difficult as the physical symptoms, making 87% of sufferers feel negatively about the future.
- Pain was the most frequently reported symptom among respondents, and not just menstrual or pelvic pain but also pain when using the toilet, pain during sex, migraines, sciatica, and countless other symptoms.
- Despite the life-changing symptoms, which one woman described as “a silent life sentence of pain”, sufferers feel they are not being taken seriously by their GPs.
- 27% of participants had considered self-harming or self-harmed because of endometriosis.
- Although symptoms such as pain and fatigue played a big part in this, the lack of understanding from GPs, employers and loved ones were also very damaging to mental health.
BMI Healthcare has released its Endometriosis Matters 2020 report, examining the devastating impact this illness can have on the lives of sufferers. The report explores the findings of a survey of 2,120 people with endometriosis, carried out earlier this year.
Key topics covered include:
- Variety and severity of symptoms, both physical and mental
- The social impact of living with endometriosis
- Time to diagnosis and the response of healthcare
- Awareness of the condition among non-sufferers
- The importance of support groups and online communities
The results show that endometriosis causes a variety of difficult and life-changing symptoms. Participants reported everything from pelvic pain, to bowel and bladder issues, to problems with fertility.
What is endometriosis?
Endometriosis is a condition where cells similar to those normally found in the womb are found elsewhere in the body. Because the cells are in the wrong place, they aren’t released during a period and have nowhere to go. This can cause serious issues and damage within the pelvic region, and even sometimes beyond.
Endometriosis is thought to affect 1 in 10 women (that’s about 1.5 million women in the UK). It can also be experienced by people who are intersex, transgender or gender non-binary.
Endometriosis and pain
Pain is one of the most common and the most difficult elements of the condition. A distressing 83% of respondents said their pain was so intense it actually stopped them from going about their normal lives.
"It’s not just ‘period pain’, it’s so much more than that. It affects the whole body and mind."
They described the pain as “devastating” and “debilitating”, affecting everything from their careers to their romantic relationships.
Shockingly, the survey found that people are waiting an average of seven or more years after reporting their symptoms before they get a diagnosis. This suggests little improvement (if any) since the 2011 Endometriosis UK survey that put the wait at seven and a half years.
Many participants felt this was because of a dismissive attitude from healthcare professionals. Less than 20% of people felt their symptoms were taken seriously by their GP.
"My GP was very unhelpful and showed no empathy. They tried to make me believe it was ‘normal’ and I just had to accept it. They tried to mask symptoms with pain relief and contraceptive pills, and never tried to get to the bottom of the issue."
Impact on mental health
The impact of endometriosis on mental health was one of the most significant themes among survey respondents. 87% said that endometriosis had made them feel negatively about the future.
90% of sufferers felt their mood had been affected by endometriosis, while 69% felt their self-esteem had been negatively impacted.
A shocking 27% of participants said they had considered or attempted self-harm because of the condition.
"Living with endometriosis has felt like more than I can bear. I have tried to take my life multiple times."
The physical realities of living with a painful chronic illness are just one aspect that’s damaging to mental health. Negative responses and a lack of support from others can have just as significant an impact.
Women spoke of feeling ignored, dismissed and not believed when describing their symptoms. They felt this lack of support from various sources – GPs and other healthcare professionals; employers and colleagues; even friends and family.
For the full report, please visit bmihealthcare.co.uk/endometriosis-matters
10th August 2020