Endometriosis Education: Endometriosis in Teenagers
If you were following my Instagram stories last week, you'd know that I was at the inspiring Women of the World festival. The WOW festival is a UK based festival that empowers women from all cultures and backgrounds to discuss global issues affecting women today and to encourage unity and progress.
One of the highlights for me was the Teens Talk Back panel, a group of four adolescent girls discussing feminism and the impact of sexism on their lives as teenagers. These girls were incredible and are activists and influencers in their generation; sitting on Plan International UK's Youth Advisory Panel, being part of the advocacy programme at Girl Guiding and hosting Feminist Fridays in school. At such a young age, they'd experienced, witnessed and understood sexism, harassment, online abuse, racism, discrimination, self-harm, eating disorders - the list goes on.
This inspiring team of young girls had been pushing and campaigning for compulsory sex and relationship education in schools; as currently only "council-controlled secondary schools are required to teach children about sex in biology classes". Thankfully (and finally), their campaign worked and the Government will make “age appropriate” sex and relationship education (SRE) part of the national curriculum in primary and secondary schools. Yet when I asked them about endometriosis, I received a blank response. These knowledgeable young girls who knew so much about the discrimination and inequality they and thousands of other girls are facing, and who had fought for sex education in schools, had never heard the word.
Endometriosis In Teenagers
I don't blame them. How and why would they know? There's barely any sex education in schools as it is and most of us only receive an endometriosis education when we wake up in a hospital bed and are told we have it.
My background is working with vulnerable young people in charity as well as women with endometriosis, in more recent years. The young people I worked with were homeless and incredibly vulnerable, I worked with a few who on occasion I questioned whether they had endometriosis and one in fact was finally diagnosed. I know the real impact of endometriosis on our lives and I also know the real impact of being young and vulnerable.
Most of us know the struggle of growing up as a teen with undiagnosed endometriosis. Now imagine you're homeless, the only access you have to internet is in hostel and that's limited because there's only a few computers and your search privacy is zero because you have other teenagers walking past you every minute. In addition to that, you might have quit school because you struggled so much and have undiagnosed learning difficulties, so accessing and making sense of the information you do manage to find could be difficult to impossible. Perhaps you're homeless because you've escaped sexual abuse and you think the pain you're feeling is associated with that, or, you just don't want to face anything to do with your reproductive system due to shutting down on that part of your body. Or maybe you're one of the many girls who have become involved in an abusive relationship and you've lost all your confidence to speak to people, let alone communicate your mystery pelvic pain and your boyfriend has told you your body's his anyway and that you're making it all up for attention.
I am not exaggerating here. If you can imagine some of that, you're seeing into a fraction of the lives of vulnerable and marginalised young people. And they don't have to be homeless to struggle in this way. There are plenty of challenges out there for teens as it is without not having a roof over your head - endometriosis shouldn't be one of them. Of course, if they have it, the condition may be an ongoing/on and off challenge for the rest of their lives, but finding out what it is, being diagnosed and discovering the ways in which it can be managed and treated shouldn't be the 10/20/30 year struggle that causes so many to spend their younger years suffering so acutely.
The fact that Sex and Relationships education is to be rolled out across schools is a huge step in the right direction, but what I want to see is endometriosis education being a compulsory part of that. I also want parents educated, teachers, child health practitioners, child therapists, social workers, you name it - anyone who can pick up on the struggles and symptoms should be educated so they can signpost and support the child.
The Endometriosis Foundation of America is leading the way with this. Their ENPOWR Project 'is a school and community based endometriosis education program' which raises awareness of endometriosis in teenagers and discusses treatment options through an interactive lesson. They have free lesson plans and resources that enable teachers and volunteers to be able to deliver a session with the correct information and in a way that empowers young people to take control of their health.
Endometriosis UK has two resources for teenage girls - Is This Normal and a Pain and Symptoms Diary. These brilliant downloads educate girls on what endometriosis is in a non-fear mongering manner, and helps take girls through the basics of having a period, helping them differentiate between normal period patterns and endometriosis symptoms. The Pain and Symptoms Diary can be used, not just by teenagers, but anyone who needs to convey what they are going through to medical professionals.
I know that Endometriosis UK and other charities across the world are acutely aware of the issues facing teens, education and diagnosis. However, the lack of funding and government support for these charities (and other women's rights charities, like domestic violence shelters) makes expanding physically into these areas incredibly difficult.
My brain is whirring around with ideas to make education for young girls possible, but in the mean time, donate to the charities, look out for the young people around you and let them know there's a safe space for them to talk to you if they wish. Provide them with endometriosis education material if they're open to it or suggest they look at it sometime; ramming it down their throats won't be helpful! If they are diagnosed or suspected of having it, spend time understanding the disease with them safely. There's a lot of scary images and forums out there, so be mindful of what a child is researching and try to reassure them that every case is different and women respond to treatment and management techniques differently.
Whether or not they show or talk about symptoms is irrelevant, we need to educate everyone to help end discrimination and support each other in getting diagnoses and the right treatment early.
If you found this post interesting, you may like to read my post on Depression, Anxiety, Endometriosis and Teenage Girls with Autism.