Case Study: Endometriosis UK


The Scottish Government has a proud history of leading the way for women with endometriosis, which affects 1 in 10 women from puberty to menopause. From illuminating Holyrood Palace yellow to mark endometriosis awareness month, to providing free menstrual products in all of their office buildings, together we are ensuring menstrual wellbeing takes centre stage in Holyrood.

Endometriosis in itself is a challenging condition to diagnose. Endometriosis is where the cells similar to the ones in the lining of the womb are found elsewhere in the body. Each month these cells react in the same way as those in the womb, and unlike the cells in the womb that would normally leave the body as a period, but this blood has no way to escape, causing inflammation, pain, and scarring. Symptoms of endometriosis include chronic pelvic pain, bowel problems, infertility and painful sex.

March is endometriosis awareness month, and this year we’re raising the importance of education in tackling alarming diagnosis times. Despite progress in Holyrood, diagnosis time for endometriosis is an average of 7.5 years.

During this time, women are in limbo and often live with debilitating pain, sometimes lose their relationships and livelihoods, and may have difficulty getting pregnant.  This isn’t good enough and we need to do better.

The first step to helping reduce diagnosis time is through education. The curriculum in England recently changed to include menstrual wellbeing in primary and secondary schools. This will go some way in overcoming the taboo and embarrassment around periods, as well as equipping girls with the knowledge of what is and isn’t normal for their menstrual cycle. In turn, this will give young women the confidence to seek help when it’s needed. The shift in terminology within the curriculum in England from “sanitary products” to “menstrual products” will also stop sending out the message that periods are dirty by using phases such as sanitary and hygiene. We now need to see this being implemented in Scotland, so young women across the country are not left behind those in England. The education system plays a key role in educating women about what is and isn’t normal; and ensuring women are empowered and have the knowledge of when to seek help.

But education doesn’t stop at schools, and we need to ensure that when women take that important step in visiting their GP, that they are met with the best care. Women deserve better when it comes to our gynaelogical health, and we want to work with the Scottish Government to ensure women with suspected endometriosis are given the right care at the right time. The symptoms of the disease – such as severe pelvic pain, painful sex, painful bowel movements – overlap with a range of other conditions and vary person to person depending on where the endometriosis is growing; often making it difficult for GPs to diagnose. It’s vital healthcare practitioners receive training and guidance to help them spot signs of endometriosis as well as other menstrual conditions, and support women to receiving a diagnosis.

We’re delighted to have partnered with the Royal College of GPs to launch new education material this Endometriosis Awareness Month. The toolkit will help GPs spot the early signs of endometriosis and give women the support they deserve. You can view it here: https://www.rcgp.org.uk/menstrualwellbeingtoolkit

If you’re interested in learning more about endometriosis, we’re also delighted to be partnering with life savings company Standard Life and international photographer Rankin on an exhibition to be showcased in Edinburgh at the Stills Gallery 1-8 April. Augmented reality will unlock the story behind the portraits allowing the viewer to see beyond the invisible illness and hear the real life story of each person.