Invisible illness makes me blackout – but doctors mistake it for period pain
An Instagram influencer spoke candidly about what it's like to live with endometriosis – an invisible illness that made her vomit and blackout.
Modelling from the age of 15, Sophie Hughes, 31, grew up normalising her complicated relationship with body image and food.
After 10 years in the industry, she put her career on hold to donate part of her liver to save her nephew's life which resulted in her body completely changing, with weight gain and a seven-inch scar.
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Now the body positivity advocate is passionate about helping people focus on self-love and well-being as well as raising awareness of endometriosis.
Recently, she spoke on the podcast Anything is Possible about her harrowing experience with the disease.
“I got to the point where I had blacked out on the bathroom floor in pain, I had been throwing up for about half an hour,” she explained.
“It honestly felt like someone had broken into my house and was stabbing me to death. I was screaming, sobbing, and I’ve donated a liver, I’ve got a fairly good pain tolerance.
“I would donate a liver every day of my life versus have endometriosis it’s really, really awful. It doesn’t let up and that’s the hardest thing.
“For me, the average endometriosis attack, which is what I call it because it feels like an attack, usually lasts for about four hours.”
She added: “You can never underestimate how painful it is.”
Sophie said her attacks don’t ebb and flow in pain – they're usually consistent and she often feels tender for four days afterwards.
Sophie's endometriosis was diagnosed two years ago when she was living in Australia, which she said has an “incredible health system”.
This is compared to the eight years it takes to be diagnosed in the UK.
Within six months of her first symptom, the influencer went to the doctor for advice.
“I was incredibly lucky and I think that’s why I’m so passionate about making sure that women know that when something like that is going on with your body, it’s not normal,” she said.
“Period pain that makes you screwed up in a ball on the floor is not normal, something is wrong, you have to advocate for yourself.
“If you’re going to your GP and they’re saying, no you’re fine, take some paracetamol and you know it’s not normal, you have to push for that specialist referral.
What is endometriosis?
According to the NHS, "endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes."
- pain in your lower tummy or back (pelvic pain) – usually worse during your period
- period pain that stops you doing your normal activities
- pain during or after sex
- pain when peeing or pooing during your period
- feeling sick, constipation, diarrhoea, or blood in your pee or poo during your period
- difficulty getting pregnant
- heavy periods
Endo is a long-term condition so can't be cured – but there are treatments like painkillers and hormone medicines that can help .
“You have to say to them, ‘No, something is wrong and I want a referral,’ you have to really fight for your own health.”
Sophie was lucky that within two months of the first GP she saw, she had her surgery and the endo was removed.
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