Being diagnosed with endometriosis, while a relief on one hand, can still be bewildering. There are support groups that can help
Hilary Mantel, the novelist, put it beautifully when she said: “Women with endometriosis often lose their confidence, and carry a burden of sadness that longs for release. Kind people and safe spaces are what we all need.” After suffering the debilitating mental and physical symptoms of endometriosis, finally “receiving a diagnosis was such a relief,” Catherine Nestor, co-vice chair of the Royal College of Obstetricians and Gynaecologists (RCOG) Women’s Network, says. “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.”
Shock of diagnosis
While that may be one common feeling, women can also feel confused. “When my gynaecologist told me I had endometriosis, it was the biggest shock,” Amee Leigh Atkins, 25 says. “I thought that my purpose on this earth was to be a mother, so being told the very essence of my womanhood was causing me so much suffering, it destroyed me really.”
Laura Owen-Wright, 32, agrees: “It’s taken me a long time to understand my condition because I had no idea what it was when I was sitting in the hospital bed.”
Support groups
Lots of women say that the lack of counselling has been a hard element in their journey. But in response, support groups have sprung up. After she was diagnosed, Saschan Fearon-Josephs, 26, started her blog, The Womb Room, to document her own feelings and experiences, as well as create a community of people who have had similar experiences. “It’s like you have to create your own family,” she says. “Once you’ve armed yourself with that knowledge, it’s a lot easier to find other people who have similar experiences and share information with them so you’re learning from each other, and things they’ve tried.”
Another great site is This Endo Life, where Jessica Duffin details her journey, and the lifestyle changes she has investigated to help ease her symptoms.
Information sites
Other sites include thefemedic.com, which is passionate about reporting women’s health topics, and has several in-depth pieces about the condition by doctors.
Awareness campaigns
Support is also available through Endometriosis UK, a national charity which works to increase the understanding of the condition through campaigning, awareness-raising initiatives and research. While the Royal College of Obstetricians and Gynaecologists is also dedicated to raising awareness of the condition among GPs, other healthcare professionals and the public to ensure women receive the best possible care and, crucially, earlier diagnosis.
Read more from Moody Month’s endometriosis mini-series:
Endometriosis: How to get diagnosed
Endometriosis: The medical options
Endometriosis: Lifestyle factors that can help manage symptoms
Daily wellness for women, tailored to your cycle.
