Endometriosis is a chronic and often debilitating condition that can significantly impact the lives of those affected. The Senedd has recently taken the step of signing up to Endometriosis UK’s Endometriosis Friendly Employer Scheme, supporting colleagues who have been affected by this condition.
Beth Hales, a Deputy Clerk in the Senedd, shares her personal experience of living with endometriosis.
Understanding endometriosis
You may not have heard of endometriosis, even though it’s a common condition which affects 1 in 10 women, girls and those assigned female at birth. This is a similar number to those who suffer with diabetes or chronic asthma.
The cause of endometriosis remains unknown, there is no cure and it can take an average of 10 years to receive a diagnosis for the condition in Wales.
With endometriosis, cells similar to the ones in the lining of the womb are found elsewhere in the body. These cells or ‘lesions’ cause localised irritation and bleeding, leading to inflammation and the formation of scar tissue called adhesions. Adhesions can be dense and sticky enough to pull organs out of place, or stick them together, resulting in pain and organ dysfunction (which can also lead to infertility).
I was diagnosed with this condition in 2015 after 20 years of gynaecological symptoms and three years of struggling with infertility. As a teenager I was told that painful periods were something that girls should just ‘learn to put up with’.
It wasn’t until I was in my late twenties when my husband and I visited the GP about our infertility issues that I started on the road to a diagnosis. Since then, I’ve had three operations to help treat the condition by removing scar tissue from my ovaries, uterus, bladder and bowel, as laparoscopic surgery is currently the only treatment option for endometriosis.
Wider implications
The barriers and delays that women continue to face whilst trying to get a diagnosis or access treatment is detrimentally impacting society on multiple levels. For example, girls are missing out on education whilst they await a diagnosis; women are missing out on progressing their careers whilst they await treatment; and the financial implications are vast with the NHS Confederation women’s health economics report estimating the economic cost of absenteeism due to conditions like endometriosis, to be nearly £11 billion per annum.
It’s therefore more valuable than ever for those suffering with this condition to be able to access support from their employer. This can be achieved with the support of Endometriosis UK by signing up to their Endometriosis Friendly Employer Scheme. Through the scheme, Endometriosis UK provides guidance for employers on how to support employees with endometriosis, and work towards improving the work environment.
Creating a supportive environment
The Senedd have signed up to the scheme and I’ve experienced first-hand the invaluable support the organisation offers – there are flexible working options, Occupational Health support and various reasonable adjustments that can be made to ensure management of the condition can be achieved.
In March, training sessions are being held for the senior leadership team and ‘lunch and learn’ sessions arranged for all Senedd Commission staff to ensure information regarding endometriosis reaches a wider audience.
Changing the culture like this in workplaces will help normalise discussions about gynaecological related conditions, and help lessen the impact this can have on someone’s career, which in turn also benefits the employer.
There will be people affected by this condition in businesses throughout Wales, and the help and support they can provide by becoming an Endometriosis Friendly Employer doesn’t just help the person directly, but also those indirectly impacted by this disease.
Endometriosis is relentless and my daughters are growing up seeing first-hand the pain it causes, but they can also see that I’m able to live with the condition whilst working. This is because of the Senedd’s commitment to supporting staff with chronic illnesses such as endometriosis - so from my family and I to the Senedd, diolch o galon.
The Senedd is proud to join Endometriosis UK’s Endometriosis Friendly Employer Scheme, and create an understanding and supportive work environment for those impacted by the condition.
Find out more about working for the Senedd Commission.
