Endo-what? [Endometriosis Awareness Month]
By Rhian Calamita
“I was 30 years old and found myself saying ‘Endo-what?’ ”
These words, though they may sound familiar to many, are spoken by Lorna Armstrong (@lorna.armstrong), one of millions who live with the condition endometriosis. It is a condition which impacts 1 in 10 of those born female, affecting each person differently. It is a condition where tissue similar to the lining of the uterus grows in places where it shouldn't. It can cause ongoing severe pain. It can be common to experience pain during intercourse, bowel movements and urination, as well as extreme fatigue, diarrhoea, constipation, bloating or nausea, and can lead to problems with fertility. However, it is important to note that this is a whole body disease and can also affect anything from your brain to your joints to your spleen. A long-term condition, it can have a substantial impact on your life, but yet it is still significantly misunderstood, under-researched and referrals are few and far between.
March is #EndometriosisAwarenessMonth, and during my outreach and research into this condition I became aware that those who are assigned female at birth but who are now agender find it very difficult to seek the help they need in a space where they feel comfortable, included and safe. So the description of endometriosis as a condition exclusively for women is extremely frustrating for the agender and non-binary community. A constant reminder of how exclusive and outdated the current system is, it ultimately makes it even more challenging for them to access the help that they need.
Gwendolyn Aker, (@gwenandwear) spoke to me earlier this week about their experience:
“Being gender non-conforming – I’m agender – adds another layer of anxiety to the whole process. I often have to decide before I go into any appointment, am I going to be authentically and fully MYSELF – an agender femme – or am I just going to let the doctor assume I’m a woman because it’s one less thing to be questioned over and one less hurdle to have to overcome to access treatment. Having to explain my gender identity and pronouns is exhausting, but having to shrink myself hurts, it’s often times a LOSE/LOSE situation.”
As this condition is still so commonly labelled as something that exclusively affects women, it brings a whole range of emotions and difficulty for the agender community when accessing care or support:
“It’s hard too, when you see campaigns that use heavily gendered language, like the stat of ‘1 in 10 women’ or #endosisters because I don’t feel included or seen.”
The common theme with all of the people I have engaged with is the lack of understanding and knowledge about the condition and the exhausting frustration this brings.
“It goes way beyond frustration really, it actually makes me angry. So angry. Despite knowing 1/10 menstruators suffer with endometriosis we have to fight tooth and nail for tests and referrals. Why, if it’s so common, is it so hard to believe so many of us are suffering?”
Fay Summerfield (@fay_not_faye), a photographer from London, spoke to me about her particular concerns with the current ways in which patients with endometriosis are managed:
“My current frustrations are the diagnosis time, the gaslighting and the out-dated methods to diagnose and treat. More research needs to be done. The current way to diagnose is to have a laparoscopy, which is very taxing on our bodies and mental health. From the age of 11 I have been going to the doctors and was regularly told that my symptoms were 'normal'. I used to throw up, pass out and take days off from school as I couldn't walk down the road without collapsing. But apparently this was 'normal'.”
Co-leader of her local support group Endo Borders (@endo_borders), Lorna Armstrong echoes this frustration and brings it back to a real lack of knowledge right from the get-go:
“For me, it's the lack of education in schools… I know that if I had been taught [about endometriosis], I'd have been better equipped and more confident to speak up. It would have given me the opportunity to possibly look into freezing my eggs so I could have a family. So many things could’ve been different in my life.”
Lorna felt very strongly about being there to support other people who live with the same condition. Suffering alone was not an option, and so she made a choice to allow others to have the support framework that she felt she lacked during her early experience and diagnosis.
“I knew I had to be part of it. Part of raising awareness for me was getting my story out and showing that endo doesn't have to stop you in your tracks.”
There is undeniably a huge community of people living with endometriosis, pulling together and supporting each other, which is overwhelmingly powerful and positive. To be part of a community that can share their experiences and lean on one another for support offers strength and solidarity in a place which can feel quite lonely.
“I’m so glad I’ve found others online through Instagram and Endoblogs. People who understand and know how it feels. To finally have someone say ‘I believe you, your pain is real.’ I can’t even describe how that feels. Accounts like @mamila_jain, @mypelvicpain, @beelynnnyc, @thesicksadgirls, @endo_black and @centerforendocare are some of the accounts that I follow and have found really helpful and supportive.” – @gwenandwear
We are supporting a range of accounts and charities this month in full support of #EndometriosisAwarenessMonth. If you would also like to show your support by following awareness/support accounts, or by donating to charities, please take a look here:
Thank you to my focus team who have given up their time to speak to me this month: