It is #WorldSuicidePreventionDay and as someone who has had personal experience of suicide and professional experience of it working withing the mental health and support field I wanted to talk about this.
We all know how high the rates of suicide are withing the Chronic Health community.
In a study I helped out with we found that 60% of our sample had life ending ideations due to their #Endometriosis symptoms. In a survey by the BBC of over 13500 women it was reported that around half reported suicide ideations.
In a study that I conducted it was found that stress levels were significantly higher in our sample with Endometriosis which impacts Mental Health.
Cis white women have a hard time getting a diagnosis of Endo the average is 7.5 years. And once we are in the system there is a whole host of barriers including medical gas lighting, stigmatism, doctors not willing to listen to your opinions, and the good old not actually having a cure with no treatments being that effective.
Now think about the Marginalised Communities withing the Endometriosis world, we are talking about
· Young People
Who are often not believed when reporting Endometriosis symptoms because they are thought to be “too young to have endo” and are often told that pelvic pain is normal! You can find out more here https://www.endosupportunited.org/adolescent-endometriosis
· People of Colour
Did you know that if you are white, you are 50% more likely to be diagnosed with endo than if you are black, with black people being more likely to be diagnosed with pelvic inflammatory disease.
Did you know that people of Asian ethnicity are twice as likely to be diagnosed with endo than a white woman, but where are these people in the main endo space?
“The risk of endometriosis has been linked to ethnicity and several studies have reported a nine-fold increase in risk in Asian women when compared to the European-American white female population” – https://reproductive-health-journal.biomedcentral.com/articles/10.1186/s12978-018-0506-7
Then why has this group not received more research? Why are these figures out there but not being portrayed in the mainstream media with regard to endo? Imagine how it must make people of Asian descent feel. I can imagine they don’t feel great about it, and I imagine very angry. I personally know Nikita who is an amazing writer for Cysters charity who asks “if we are more likely to develop this disease than you are; you could at least invite us to the table and allow us to showcase our experiences.” Go read her articles on Cysters webpage
Which is what we try to do at Endometriosis South Coast. We may not always get it right, but we try to give marginalised communities space time and a voice. Even if we have to give up our seat at the table – that’s what true allies do.
Tia moury talks a lot about how her experience of being black with endometriosis (click the pic)
· People across the Gender Spectrum
Suicide rates in trans people are shockingly high!
Many people across the spectrum have gender dysphoria, can you imagine having a disease that is considered by so many as a female when you do not want to acknowledge that part of yourself? There are so many people that are going through that.
There are 2 trans activists with endo that spring to my mind immediately on Instagram Cori Smith and Ryan if you give these a follow and see what they are writing about you will see how hard they have to fight.
There is also the medical gas lighting and constant mis-gendering of the whole community.
Come on Dr’s we are in 2021 now, how hard can it be to use the correct pronouns?!
Excitingly there is the first ever endometriosis being carried out with Trans men with Endometriosis. The link isn’t ready yet but as soon as I have it, I will let everyone know on all our social media channels.
· People in the LGBTQIA+ Community
Medical professionals have very little training on endometriosis in medical school. And they have even less training on LGBTQIA+ healthcare.
· And Cis Men YES you read that right, CIS MEN
Here is one that a lot of people struggle with! But don’t forget we struggled with male breast cancer when it first started being recognised.
CIS men can have Endometriosis!!!!!!!!!!!!!
It has been very rare, but there have been at least 20 cases reported. Now if you think about endo, it is now being looked at as a whole-body disease rather than a condition of the reproductive system. So, who is to say that cis men can’t get it? The majority of the male cases are thought to be because of hormone therapy from prostate cancer or increased oestrogen from liver cirrhosis, or obesity due to adipose tissue storing more oestrogen.
We only get diagnosed mainly because of irregular, painful periods, or infertility. If a man doesn’t have a cycle and it doesn’t affect their fertility who’s to know there aren’t more men out there walking around with endo?
And, if this is starting to be reported and diagnosed more, then because of patriarchy (ggrrrrrr) there will be more awareness, more studies and there will be a cure in a couple of weeks!
The barriers are so much higher for these people when navigating Endometriosis diagnosis and treatment. The point of this blog isn’t to make life harder for any section of the endometriosis community, more to highlight that there is more than one section and to truly find the answers to the questions of where does endo come from? And what is the cure? We need a truly intersectional approach for treatment, research, and awareness. There are some great researchers out there doing great work including myself, Rokvity and the endometriosis PhD.
Everything you have read here all affects mental health. It is no wonder we struggle on a daily basis with stress, anxiety, and depression. Please reach out if you are in a dark place. There are people and support groups that can help. I have laced this with groups and people on various social media channels and websites, don’t forget the Samaritans have a wealth of resources available.
Be a supporter of all groups, we are all in this fight together. Instead of shushing these groups of people, please, lets raise them up and give them a voice. Let’s break down these barriers by research and develop new treatments using a truly intersectional model.
Make space for people who are not the “normal demographic” for endometriosis, without intersectionality nothing will ever change.
Thank you for listening to me rant on as always
Love to you all