Endo Stories: We Are Extraordinary!
Endometriosis is a condition that affects 1 in 10 people who are assigned female at birth. Despite that, 54% of people don’t know what it is – rising to 74% of men. We want to help change that.
In the run up to Smutathon 2020 on September 26th, we’ll be sharing weekly ‘Endo Stories’, written by other bloggers, authors, and awesome people we found on Twitter. They’ll tell you about their experiences with endometriosis, and about some of the challenges they’ve faced, from diagnosis to treatment, from sexual pleasure (and pain) to fertility and menstruation.
Today’s story comes from Eds, who writes at misscherryred.com. Find her on Twitter at @DefinitelyEddy and please consider donating to Endometriosis UK to help them help people all over the UK who are struggling with endometriosis.
Women are beautiful, and wild.
We are extraordinary, and powerful.
We are emotive, we are intuitive, and we are nurturing.
We seek and demand equality in environments where we’re left behind.
We celebrate our strength of character, our resilience, and our determination to change this world.
We grow, and give birth to, new life.
We are extraordinary.
And some us, myself included, are all of these things, but with one difference; we live every day with the unimaginable pain caused by Endometriosis.
You see, we live in bodies where some of our tissue grows in places it shouldn’t; on our ovaries, our fallopian tubes, our bowels, the outside of our womb. It can grow on our bladder, our intestines. It has even been found in our spines.
Endometriosis is invasive and it’s painful.
It is why I cry 80% of the month.
It is why I bleed so heavily during my period that I have to wear two lots of sanitary products to make sure I’m protected. And it’s why I have to change that protection every 2 hours.
It is why I cannot walk more than 30 minutes without worrying that I will have flooded into my clothes.
It is why I bleed on the days I’m not on my period.
It is why I am often doubled over in pain.
It is why I have spare knickers in every handbag I own, and why all my knickers are black.
it is why sex with my boyfriend is only possible in certain positions and at certain times of the month.
It is silent during its assault on my body.
Someone at work once brushed me off as just having “a heavy period”. She openly scoffed at the fact I took 8 days off sick because I needed to lie down. I remember telling her through heavy sobbing that the pain in my pelvis feels like a ‘chinese burn’ on my insides. That it feels like someone has placed their hands on my womb and is twisting with such force it feels like they’re ripping it out of me. That for the 8 days I bleed, I suffer not only the indignity of feeling the blood flow out of me, but that the accompanying pain is so intense it makes me vomit. That on my non-period days I am so anxious and worried that I might bleed when I’m not wearing a towel that I wind up with stress headaches. Or that I might be so bloated I look pregnant, which leads to more uncomfortable conversations.
When I told her I spend most of my days medicated, she laughed. I remember that moment so vividly. I remember, for the briefest time, wishing endometriosis on her. Wishing that for just one month she could experience what I’ve been living with for years. “Please God, just one time, just one cycle. Please. She won’t be laughing then” I thought.
But the truth is, I wouldn’t wish this condition on anyone.
I celebrate the months where I only take codeine and naproxen two weeks out four. I find myself wiping tears off my cheeks after sex if I haven’t had to ask my boyfriend to stop, or if I haven’t had to ask him to be more gentle than he already is, or if I have been able to completely surrender my body to the moment without any pain because no matter how brief the moment is, it feels like lightening in my soul. Like I’m alive.
Because every other moment is cloaked in a harsh reality that for me, and the tens of millions like me, there is no cure for. There is no magic potion or pill we can have to fix us.
But in spite of this I am blessed. Lucky even. Because I am privileged to live in a country where I have access to world-renowned healthcare. I have access to medication that can take the edge off the pain I feel. I have a team of consultants and surgeons on hand who can operate to remove the lesions that grow inside me which, for a short time, restarts my body till the endo grows back and we have to go again.
And it’s all I can do. So with my best smile, my literal big girl knickers, and my not yet broken spirit I soldier on.
I am here. I am raising the future. I am running my home. I am loving my family.
I am the best I can be.
And I am, as Maya Angelou said, a Phenomenal Woman