Woman only realized she was suffering from a lifelong illness she had never heard of when a TikTok video prompted her to go to the doctor

One woman said she felt “completely helpless” during a 10-year battle for her health care and only learned she had been misdiagnosed after watching a TikTok video.

Polycystic ovary syndrome, commonly known as PCOS, is notoriously difficult to diagnose – despite its often debilitating symptoms and effects.

Statistics based on confirmed diagnoses show that at least 1 in 10 women in the UK are affected by PCOS.

PCOS is a chronic disease, a hormonal disorder, and incurable. However, with a diagnosis, those affected can try to manage the physical and emotional effects.

Despite all these crucial characteristics, women often face lengthy battles with medical personnel in the fight for a diagnosis.

What does PCOS do to your body?

There are three main characteristics of PCOS:

• irregular periods – that is, your ovulation is impaired because your ovaries do not release eggs regularly
• Excess androgen – high levels of “male” hormones in your body, which can cause physical symptoms such as excessive facial or body hair
• polycystic ovaries – your ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs, according to the NHS.

It has been shown that many women use social media to self-diagnose and find answers.

In an exclusive interview with Tyla, Eve Newman tells us how she discovered she had PCOS through TikTok.

Eve first sought medical help at the age of 11 (Supplied)

Eve, 23, who “struggled for ten years,” explains that she thought her hormones had something to do with her mental health rather than being the result of PCOS – a term she says “was never mentioned by doctors” during the entire time she was seeking help.

Eve says: “I was experiencing severe hormonal mood swings, which for a long time I thought were due to mental health issues.

“I struggled with dark male-pattern hair growth, weight fluctuations, heavy, irregular periods, and oily skin from around age 11 to 12 when I first reported my symptoms.”

At age 15, Eve was told her persistent symptoms were simply a result of “stress” before being diagnosed with depression and anxiety and prescribed the antidepressant sertraline.

She says that at first she trusted her judgment – ​​and did so until she was 21.

“I was never sent for an ultrasound and my hormone levels were never tested”

Eve says: “I thought that after seeing me with all these symptoms over a period of about 10 years, if there was a root cause, they would surely have seen the connections.

“I was 21 when I was diagnosed with PCOS after watching a video on TikTok about the symptoms and asking my GP for an ultrasound.

“From the ages of 11 to 21, I was never sent for an ultrasound and my hormone levels were never tested.”

Eve was wrongly diagnosed with depression and anxiety (Getty Stock Image)

Eve now rejects the diagnosis of anxiety disorder and depression and recognizes that her mood swings are due to undiagnosed PCOS.

“I think my heart actually stopped for a second”

Eve remembers the day her life changed while scrolling through TikTok.

She recalls: “One video caught my attention. It was a woman my age who listed her various symptoms and then said she had just been diagnosed with PCOS.

“I think my heart actually stopped for a second because I had never experienced anyone listing all of my symptoms and connecting them together in that way.

“Things I never thought could be related to my heavy periods – like my tendency to lose a lot of hair on my head – were suddenly presented to me as things that could all be traced back to the same condition.”

There is a helpful online community for PCOS sufferers (Getty Stock Image)

Eve says she “felt so seen” and “immediately had a gut feeling that PCOS would explain everything I had been through for the past ten years.”

In addition to being relieved, Eve said: “I was also angry that so many GPs had overlooked such a simple thing over such a long period of time.”

She added: “It’s interesting to look back on this experience now. It’s a clear example of how important social media can be in sharing information between women and marginalized groups when it comes to health.”

“I was told it looked like a typical case of PCOS”

When Eve finally got the ultrasound she had asked for, her life as she knew it changed for the second time.

Eve says: “During my ultrasound scan, I mentioned to the ultrasound technician that I thought I might have PCOS.

“She showed me the screen while she was scanning my ovaries and pointed out the different cysts.”

She continued: “She said it looked like a typical case of PCOS and I was absolutely right.

“I have never felt such relief in my life. Never before had a doctor confirmed my experience.”

Many PCOS patients report problems with ovulation (Getty Stock Image)

Eve could easily imagine that this was the end of her struggle to understand what she was going through and get a diagnosis – but that was not the case.

Two weeks passed after the sonographer confirmed the pregnancy and Eve still hadn’t heard anything, so she decided to call her GP’s office.

She recalls: “I spoke to the receptionist and asked about the results of my ultrasound scan. They told me that the GP had looked at my ultrasound pictures and found that there was nothing to worry about.”

“I felt completely helpless”

Eve added: “I asked to speak to the GP as this information obviously contradicted what I had been told during my scan. I was told that GP appointments are not offered to those who wish to discuss tests that have come back negative and then they hung up.”

Eve says this left her “in such a dark place” and she felt “completely helpless.”

The feeling of injustice led Eve to push for a new GP and get the diagnosis she felt she deserved.

After seeing a new GP, Eve was told she “definitely” had PCOS – and the struggle was finally over.

But this is not the case for many women. They are repeatedly turned away by medical staff and often no longer have the strength to continue fighting.

Eve had to push for a new GP after being disappointed after her ultrasound (Getty Stock Image)

Those who receive a diagnosis then have to live with the disease.

Eve says: “I’ve tried two different types of contraception, the implant, stopped hormonal contraception altogether and even stopped eating gluten. The frustrating thing is that even with a diagnosis there is no real form of treatment.”

Eve says it was a gift to find her community after speaking openly online about her PCOS diagnosis.

She concludes: “The community of people with PCOS is so strong and it is lovely to see how we share information and support both online and in person, as this is often not possible through official medical channels.

“I really hope we can continue to raise awareness of how inadequate medical advice is about this condition and I hope that in my lifetime more funding will be made available for studies to help treat PCOS.”

Symptoms of PCOS

If you are concerned that you may have PCOS, the NHS describes the following symptoms:

• Difficulty getting pregnant due to irregular or absent 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