When Sinead Smythe, 21, stares into the camera and discusses her endometriosis flare-up, you can see the pain in her eyes. Smythe, who lives in Brighton, United Kingdom, recently posted a raw and honest vlog of her flare, documenting how the waves of pain rushed over her as she dressed up for a fun girl's day out, and lasting until she was doubled over the next day.
"The pain that endometriosis causes is absolutely excruciating," Smythe says during her intro to the video. "It literally feels like somebody is carving your insides out like a pumpkin with a knife that is on fire. It feels like there's a cat trapped in your lower back and your lower abdominal trying to claw its way out. And it feels like there are fireworks exploding all over your body."
"I am crying in this video whilst in my bedroom trying to breathe and deal with the pain."
It can be hard to watch. After an afternoon of shopping and strolling around town with girlfriends, she checks in again at 8 p.m., her face flushed. "I literally feel like I have run a marathon," she says.
By 10 p.m., she is crying, saying that the pain is "neverending." By 4:30 a.m. that flare-up reaches a fever pitch. Smythe is unable to sleep; she says the pain in her thighs, kidneys, and stomach is "excruciating." At one point in the video, she pans the camera to her stomach, which has morphed into an endo belly. Literally, it looks as if Smythe stuffed a bowling ball in her pants.
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This is NOT what my body looks like THIS IS what you call A ENDOMETRIOSIS FLARE UP at its finest* It took me some balls to upload this because when your body isn't looking like its usual self, it's uncomfortable and gives me 0 confidence. SO swollen and sore!!!! Your insides feel like they are crushing. kidneys feel beaten. Your legs feel numb. It's a HUGE struggle! This is what an endo belly looks like.
Why was it important for Smythe to broadcast her most intimate and painful moments? For her, it is all about letting other endo women know they are not alone in their pain.
"The reason it motivated me to show the world what an endometriosis flare-up can look like—in a minimal state, usually I could be screaming—is because people look at us like we are liars, that were dramatic and it’s only a ‘bad period’ I thought it would show what some of us feel every single day of our lives," she tells The Blossom. "That there isn’t anything that really helps, not even strong pain relief! It knocks you out asleep for an hour or so then you're in the same shoes as you were praying it would just stop. I thought showing myself in such a vulnerable state would open people's eyes. And those watching who suffer find it comforting in ways of knowing they are not alone in this fight."
Smythe has been blogging about her experiences with endometriosis since November 2017. Working part-time as a gym receptionist, she had to stay out of work for two-and-a-half months due to endo. She was first diagnosed at age 19, and like many endo women, spent years before that in doctors' offices where she received conflicting and confusing information.
"Unfortunately, most doctors and professionals seem to tell you the pain is all in your head," she adds. "They also seem to think we only experience pain during our period. This is false! We know what we feel. We know our bodies. When someone is trying to palm you off with anti-depressants and basically telling you your brain is making it up, it is absolutely soul-destroying."
Smythe has been visiting doctors to find out what was wrong since she was about 13 years old. She says she's even visited a chiropractor and a physiotherapist in her hunt for answers. She took herself to a sexual health clinic where doctors misdiagnosed with Pelvic Inflammatory Disease (PID) and gave her 16 weeks' worth of antibiotics. When she discovered she didn't have PID after all, she was referred to a consultant who performed a laparoscopy and diagnosed her with endometriosis in 2016. She had a second laparoscopy in 2017 and expects a third is on the horizon if her chronic pain specialist can't alleviate her pain.
"Women who suffer or are trying to find a diagnosis, please do not give up the fight. When you get knocked down by professionals, feel those emotions but get back up and fight for what you deserve—help or a diagnosis," she stresses. "If you need help, if you need advice, reach out for it. Be proud of every step you take, even if that’s getting out of bed in the morning. That is a huge positive because it’s difficult—not just physically but also emotionally and mentally."