Woman only realised she had life-long disease she’d never even heard of after TikTok video prompted her to go to doctors
A woman said she felt 'completely helpless' during a decade-long healthcare battle, only discovering she'd been misdiagnosed after watching a TikTok video.
Polycystic ovary syndrome, commonly referred to as PCOS, is notoriously hard to get diagnosed - despite the often debilitating symptoms and effects.
The statistics, which rely on confirmed diagnoses, show that PCOS affects at least 1 in 10 women in the UK.
PCOS is a chronic illness, a hormonal disorder, and incurable - though with a diagnosis, sufferers can attempt to manage the physical and emotional effects.
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Despite all of these crucial characteristics, women often end up in lengthy battles with healthcare professionals when fighting for a diagnosis.
What does PCOS do to your body?
There are three main features of PCOS, which are:
- irregular periods – which means your ovulation is affected as your ovaries do not regularly release eggs
- excess androgen – high levels of 'male' hormones in your body, which may cause physical signs such as excess facial or body hair
- polycystic ovaries – your ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs, as per the NHS.
It has come to light that many women are turning to social media to self-diagnose and seek answers.
Speaking exclusively to Tyla, 23-year-old Eve tells us how she identified herself as a PCOS sufferer as a result of TikTok.
Eve, who 'struggled for 10 years', explains how she thought her hormones were mental health related rather than a result of PCOS - a term she says was 'never brought up by doctors' throughout the time she sought help.
Eve says: "I was experiencing wild hormonal mood swings, which for a long time I thought were down to mental health issues.
"I started to struggle with dark male pattern hair growth, fluctuating weight, heavy irregular periods and oily skin at around 11-12 years old, when I first reported my symptoms."
At 15, Eve was told that her ongoing symptoms were simply a result of 'stress', before being diagnosed with depression and anxiety and being prescribed sertraline - an antidepressant.
She says that initially, she trusted their judgement - and did so up until the age of 21.
'I was never sent for an ultrasound and never had my hormone levels tested'
Eve says: "I thought that surely after seeing me over the course of about 10 years with all of these symptoms, if there was a root cause, they would have connected the dots.
"I was 21 when I got diagnosed with PCOS after seeing a video about the symptoms on TikTok and asking my GP for an ultrasound.
"From the age of 11 to 21, I was never sent for an ultrasound and never had my hormone levels tested."
Eve now rejects the diagnosis of anxiety and depression and recognises her mood swings were a result of undiagnosed PCOS.
'I think my heart actually stopped for a second'
Eve remembers the day her life changed when scrolling on TikTok.
She recalls: "A video came up that sparked my attention. It was a woman around my age listing her different symptoms, and then saying that she’d just been diagnosed with PCOS.
"I think my heart actually stopped for a second because I’d never seen somebody list all of my symptoms and connect them together in that way before.
"Things that I never even thought could be connected to my heavy periods - such as my tendency to shed a lot of head hair - were suddenly being presented to me as things that could all be attributed to the same condition."
Eve says she 'felt so seen', and 'instantly had a gut feeling that PCOS would explain everything I’d been through over the last 10 years'.
As well as feeling relief, Eve said: "I also felt angry that something so simple had been missed by so many GPs over such an extensive period of time."
She added: "This experience is interesting to look back on now. It’s such a clear example of how important social media can be for information sharing between women and marginalised groups when it comes to health."
'I was told it looked like a textbook case of PCOS'
When Eve eventually landed the ultrasound she asked for, her life as she knew it changed for the second time.
Eve says: "During my ultrasound, I mentioned to the sonographer that I thought I might have PCOS.
"She showed me the screen as she was scanning my ovaries and pointed the different cysts."
She continued: "She said that it looked like a textbook case of PCOS and that I was completely correct.
"I’ve never felt such relief in my life. I’d never had a medical professional validate my experience before."
It was easy for Eve to imagine that this was the end of her struggle to understand what she was going through and land a diagnosis - but this wasn't the case.
After being validated by the sonographer, two weeks passed following the scan and Eve heard nothing back, so decided to call her GP surgery.
She recalls: "I spoke to the receptionist and enquired about my scan results, to which they said that the GP had looked at my ultrasound images and determined that there was nothing of concern there."
'I felt completely helpless'
Eve adds: "I asked to speak to the GP, as obviously this information conflicted what I'd been told during my scan. I was told that GP appointments are not offered to those that want to discuss tests that came back clear, and then they hung up on me."
Eve says this put her 'into such a dark space', and she felt 'completely helpless'.
The feeling of injustice inspired Eve to push for a new GP and the diagnosis she knew she deserved.
After getting a new GP, Eve was told she 'absolutely' had PCOS - and the battle was finally over.
But for many women, this isn't the case. They are repeatedly knocked back by healthcare professionals and often run out of steam to keep fighting.
Those that do manage to receive a diagnosis then have to navigate living with the condition.
Eve says: "I have tried two different types of contraceptive pill, the implant, coming off hormonal contraception entirely, and even going gluten free. The frustrating thing is that even with a diagnosis, there is no real form of treatment."
Eve says that after being open about her PCOS diagnosis online, finding her community has been a gift.
She concludes: "The community of people with PCOS is so strong, and it’s beautiful to see how we share information and support both online and in person, because that is not often available through official medical channels.
"I really hope that we can continue to raise some awareness about how inadequate the medical advice is surrounding this condition, and I hope that I’ll see more funding into studies that aim to help treat PCOS within my lifetime."
Symptoms of PCOS
If you're worried that you could be suffering from PCOS, the NHS outlines the following symptoms:
- difficulty getting pregnant as a result of irregular ovulation or no ovulation
- hirsutism - excessive hair growth, usually on the face, chest, back or buttocks
- irregular periods or no periods
- weight gain
- thinning hair and hair loss on the head
- oily skin or acne
Topics: Health, Mental Health, Periods, True Life, Women's Health, Tyla Exclusive
Kya Buller