For Endometriosis Awareness Week (3-11 March), the charity, Endometriosis UK, is asking women what they wish they had been told about the condition. Catherine Nestor, Co-Vice Chair of the RCOG Women’s Network, speaks out about her experience of endometriosis and the importance of healthcare professionals understanding the condition.
“Since I was a teenager, periods were really difficult for me, but I was told everyone experiences pain. At that time, no-one said it really shouldn’t be that bad. How could I admit I had a problem when no-one else was concerned? But looking back, I’m not sure why fainting spells, cold sweats and being doubled up in pain didn’t raise alarm bells. When I was 19, my GP dismissed me as a time waster. I was told to have a baby to “sort things out”. This put me off seeking further help for a long time.
“Problems really escalated when I hit my 30s. The pain was almost unbearable, I could only manage to walk short distances, and my energy levels were shot. This time around I was determined to get some proper answers. I saw a few gynaecologists before one finally said the ‘E’ word, and a laparoscopy confirmed his suspicions. Receiving a diagnosis was such a relief. Although I went on to have further surgeries, hormonal treatment and bundles of painkillers, at least I knew what I was dealing with and why I felt the way I did. The years of torture started to make sense but I was in my early forties by then.
“I wish I had been told about endometriosis a long time ago, when I was a young woman confused about my intense period pains. Too many years were lost feeling terrible and not knowing why. The time it took for me to receive a diagnosis is unacceptable.
“By 2013, although I still had many symptoms, I felt a lot stronger in mind and body. This encouraged me to become an Endometriosis UK volunteer and member of the RCOG’s Women’s Network. I hope in some way I can use my voice to help women with endometriosis receive better treatment.
“Endometriosis Awareness Week raises the need for more to be done to recognise and understand the symptoms of endometriosis, and to encourage women to voice concerns about their health. On average, women wait 7.5 years between seeing a doctor and getting a confirmed diagnosis. This can lead to prolonged pain and a progressed condition which is more difficult to treat. I hope the recently published NICE guidance on the condition will help to speed up the diagnosis and treatment by highlighting symptoms to doctors, such as pelvic pain, painful periods and infertility.
“We must remove the taboo around gynaecology conditions and encourage conversations about periods. If women are regularly unwell, they should feel comfortable to speak up and know that someone is listening. No woman should suffer in silence.”
RCOG blog – 10 things you should know about endometriosis
Endometriosis UK – Endometriosis Awareness Week 2018
NICE story on new guidelines
NICE guideline – Endometriosis: diagnosis and management
About the RCOG Women’s Network
The RCOG champions the best in women’s health care and supports doctors so that they’re equipped to do the best job possible for women. The RCOG Women’s Network aims to make sure that women are at the heart of everything the College does. Click here for more information.