176 million women worldwide are affected by the invisible illness, where tissue that lines the womb is found outside the womb, and Sinead Smythe, from Brighton in the UK, revealed her experience.
Taking to her Facebook page, Nay – Endosister, which documents her endometriosis journey, she uploaded a striking photo of her abdomen which looked purple and bruised.
She explained: “Just because endometriosis is invisible. Doesn’t mean it isn’t there.
“Imagine your own body going AGAINST YOU. Imagine a sort of cancer that won’t kill you, but you will live with forever.
“Imagine finding out there is no cure. Imagine knowing you will have to live with this for the rest of your life.”
Sinead, who was diagnosed with endometriosis in 2016, revealed the agony of realising that her fertility is affected by the condition.
She added: “Imagine constantly being told false information by professionals… ‘have a baby it will cure you or ‘have a hysterectomy it will cure you’.
“You are actually made to feel like this is your only option.
“It causes fertility problems.
“Being told to have ‘child’ when having a children may not be an option for you.
“Anxiety and depression emerge, you begin to forget how to keep it at bay.”
In order to help people understand the pain that it causes in her body, she gave some very stark comparisons.
Sinead said: “Pain that feels like fireworks are trapped exploding throughout your body. Pain that feels like a cat is trying to claw its way out of your abdominal,” she detailed.
“Pain that feels like your organs are being carved out like a pumpkin on Halloween. Pain that makes you physically sick.
“Pain that feels forever lasting. To feel so horrific and no-one believes you because you don’t look unwell.
“I hope this message is powerful.”
Prior to being diagnosed, Sinead visited A&E 200 times with agonising stomach pain, only to be told it was nothing more than “bad period pains”.
Desperate for answers, she visited a sexual health clinic, fearing an undiagnosed STI could be causing her symptoms.
In 2016, doctors eventually discovered the cause of Sinead’s unbearable tummy cramps was, in fact, endometriosis.
She underwent keyhole surgery, which revealed the condition – and surgeons were then able to remove as much of the endometriosis as possible.
But, Sinead said she had no idea it was a recurring illness, and three months later the pain returned.
The condition causes tissue that behaves like the lining of the womb to grow on the ovaries, Fallopian tubes, inside the stomach, as well as in or around the bladder and bowel.
Sinead has been told the only potential cure for her condition is to have a hysterectomy.
“I want to have a family one day, so having a hysterectomy isn’t an option for me right now, and I don’t think it ever will be,” she said.
“It can cause infertility, which causes me huge amounts of anxiety, it’s terrifying.”
To help herself – and other sufferers – cope, Sinead set up a blog to share her experience and raise awareness.
Sinead said: “If we all stand together against this awful condition then we will help others understand and hopefully no other women will feel alone in this fight.
“It made me so emotional knowing there was so many women out there who feel exactly how I’m feeling.”
This article originally appeared in The Sun and is republished here with permission.
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