Polycystic ovary syndrome (PCOS) has become a major health concern, however it’s still largely misunderstood — even by medical professionals.
If you’ve ever gone to your GP with concerns over irregular periods or a suspected hormonal imbalance, it’s likely that they’ve recommended getting tested for PCOS.
Polycystic ovary syndrome is a genetic hormone disorder that affects about one in 10 women in the UK, according to Dr Kaywaan Khan, private GP and skin doctor at Harley Street Clinic Hannah London.
However, despite it being so common, it’s still widely misunderstood, misdiagnosed and mismanaged.
After my own PCOS scare, I became interested in the diagnostic process — and what happens when doctors get it wrong.
I spoke to women who had been misdiagnosed with the condition to find out how it impacted their lives. I also spoke to a GP on why they think there’s a PCOS misdiagnosis issue in the UK. Here’s what I found out.
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PCOS is still widely misunderstood, misdiagnosed and mismanaged
What is PCOS?
It’s a hormonal condition that affects women of reproductive age and can cause a number of health issues including irregular periods, excess body hair, acne, weight gain and infertility issues.
It occurs when your ovaries create excess levels of hormones called androgens. This causes your reproductive hormones to become imbalanced, leading to an array of symptoms.
Women can get PCOS at any time after puberty, but it’s most commonly diagnosed in your 20s and 30s — or when you’re trying to get pregnant.
Tamika Smith’s story
When she was 34, Tamika, from New Orleans, began to experience crippling symptoms. Heavy bleeding, constipation, but — the real killer — was her severe abdominal pain.
“I couldn’t even stand,” Tamika says. “I couldn’t do my daily activities at all.”
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Tamika recalls that at its peak, she was suffering with this pain five to seven days per week.
After a morning of excruciating pain, this time in her head, she booked an appointment with her gynaecologist, who ran some tests.
When the results came in, Tamika details how her doctor bluntly told her of the diagnosis he had landed on.
“He wasn’t even fully in the room. He had his feet and head in the room, but he was in the doorway,” she recalls. “He told me, straight up, ‘You have PCOS and you won’t be able to have any more kids’. And then he scampered away.”
Tamika said not only was she shocked by the diagnosis, but she felt “crushed”.
Tamika explains: “I felt like a freak. Having children is what women are built to do, and I was told I couldn’t do it anymore.”
She says having further children wasn’t in her immediate plans, but she was open to the idea if that’s what a new partner would want. Not being able to provide that for them left her in an “emotional wreck”.
Not being listened to
Tamika accepted the diagnosis, trusting that the medical professionals knew best, but she couldn’t help but feel in her heart that her pain was being caused by something else.
Her mother has endometriosis, a different reproductive condition, and, upon talking to her, she realised that her symptoms were more closely aligned to that.
Tamika brought her endometriosis concerns to her gynaecologist, but was brushed aside. She was denied a laparoscopy, a keyhole surgery procedure used to diagnose the condition, on a number of occasions.
Tamika claims that her doctor wasn’t listening to her and put this down to microaggressions.
She says: “As a Black person, as a woman, as a single mother, people have their assumptions about you.
“The doctor was invalidating and downplaying my pain, claiming I was exaggerating it.”
She said that the doctor questioned whether her symptoms were the result of a sexually transmitted infection, which made Tamika feel embarrassed — she hadn’t been sleeping with anyone at the time.
She felt that the doctor was choosing to believe the lab data that pointed at Tamika being healthy, rather than believing her.
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Still struggling with her painful symptoms, Tamika explains how her misdiagnosis caused her anxiety, depression and hopelessness.
“I thought I was going to die,” Tamika recalls. “When you’re in that situation, in so much pain, and you don’t know what’s wrong with you, that’s where your thoughts go.”
She couldn’t stop thinking of her son, 15 at the time, and her dear parents. She was also worried about how much time she was taking off from work due to her condition.
A new diagnosis
Tamika’s symptoms declined so much that she was eventually granted a laparoscopy. And, as she suspected, she was finally diagnosed with endometriosis.
During the laparoscopy, doctors removed endometriosis lesions in the uterus along with adhesions of the bowel to abdominal wall.
This diagnosis was only the beginning of the end, she still had a long way to go in terms of treatment, but it was a massive step in the right direction. Tamika says the diagnosis “completely changed my life”.
Five years later, Tamika is doing a lot better. She’s proud to see her son grow into a man and is glad she’s still around to be with her parents.
She uses alternative treatments to help manage her endometriosis, including journalling, counselling, rest, medicinal herbs, spices and sea moss gel for its vitamins, minerals and anti-inflammatory properties.
Tamika says: “These steps have helped me avoid frequent ER visits, hospitalisations and overwhelming medical appointments.”
Rebecca’s story*
*Not her real name
By the time Rebecca was 25, she’d been experiencing missing periods for three years (they’d been irregular the decade before that), acne and a small amount of excess body hair growth.
Without so much as a blood or hormone test, she was diagnosed with PCOS due to her ultrasound results alone.
She took PCOS-related supplements and medications, including inositol and metformin, but none of these treatments appeared to alleviate her symptoms.
To make matters worse, Rebecca was trying for a baby but was unable to conceive.
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Desperate for answers, she took her health into her own hands and underwent private hormone analysis with Future Woman.
In the initial screening, Rebecca revealed that she had a history of under-eating, regularly engaged in high-intensity exercise, and had a high-stress job. Francesca Lyon, hormone expert and lead nutritionist at Future Woman, believes this lifestyle would have been exacerbating her symptoms.
When the test results came back, it showed that Rebecca’s oestrogen was low (not necessarily an indicator of PCOS as levels can be low, normal or high with the condition), progesterone was low (meaning she wasn’t ovulating), and — most importantly — her androgens were mid-range to low.
The latter is key as it means a diagnosis of PCOS was unlikely.
It wasn’t PCOS
Instead of PCOS, the results, and Rebecca’s lifestyle, pointed to a diagnosis of hypothalamic amenorrhea (HA).
Francesca explains: “HA is a condition that stops your periods due to disruption of the hypothalamic pituitary ovarian axis (HPO). Amenorrhoea is the medical term for the lack of a period. It’s typically caused by low energy input (food) and high energy output (exercise) and stress.
“It’s more common in younger women when their brain communication pathway to the ovaries is not yet strong and developed, but can happen at any age.”
HA is often misdiagnosed as PCOS as there are similar symptoms: absent periods, polycystic ovaries present on scan, acne or excess hair and low progesterone levels.
Based on this new diagnosis, Rebecca received a personalised treatment plan from Future Women, which aimed to support the brain communication pathways and balancing her adrenal glands and cortisol levels.
This was to be achieved through lifestyle changes, a healthy diet and the removal of inositol from her supplement regime.
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The correct treatment plan
Francesca highlights the dangers of a PCOS misdiagnosis, as inositol (which Rebecca had been advised to take) can lower androgens — which is what was making it much harder for Rebecca to become pregnant.
While many doctors advise that PCOS sufferers engage in high-intensity exercise to aid in weight loss, those with HA need to take a more gentle approach to their health to regulate the nervous system and brain communication pathway to the ovaries.
Three months later, after following her treatment plan, Rebecca contacted Future Woman to inform them that her period had returned, twice, for the first time in three years. It was also regular, which it hadn’t been for nearly a decade.
Why are women getting misdiagnosed with PCOS?
Dr Kaywaan Khan says there are numerous reasons why PCOS is often misdiagnosed.
Firstly, there’s no one specific criteria for diagnosing PCOS, and symptoms can overlap with other conditions.
“Different health bodies each define PCOS differently, requiring the presence of two or more factors such as hyperandrogenism, ovulatory dysfunction or polycystic ovaries,” Dr Khan explains. “This lack of a universal diagnostic standard can lead to confusion, especially in younger women who’ve just started to get their periods, as symptoms such as acne and irregular periods may be dismissed as normal puberty.”
Secondly, Dr Khan highlights that there’s no single, definitive test for PCOS.
Read more: Everything you need to know endometriosis
He says: “It can be a complex condition that affects every woman differently, so the diagnosis needs to be based on a combination of factors, including a thorough consultation of their symptoms, physical examinations and blood tests.”
Another issue is the strain on the NHS, meaning patients have shorter consultations and limited assessments, leading to practitioners potentially overlooking important clues that might help to make an accurate diagnosis.
Tests such as anti-müllerian hormone (AMH) measurements or transvaginal ultrasounds aren’t always readily available on the NHS, which Dr Khan says leads to missed or incomplete diagnoses.
Furthermore, PCOS presents in vastly different ways from patient to patient, meaning that symptoms could be under- or over-reported.
Some women may experience infrequent periods, mild acne or weight gain — which could be a sign of PCOS, but could also point to a multitude of other conditions.
To make things more complicated, a woman could have PCOS but not present any of the above common symptoms at all.
What can be done about PCOS misdiagnoses?
Tamika is calling for doctors to have to undergo “continuous education” to ensure they’re up to date with the latest research and findings in women’s health.
Her message for women who find themselves in a situation where they feel they’ve been misdiagnosed is to “fight for yourself”.
“Be encouraged, it’s OK not to be OK,” she says. “I want you to feel your emotions, but don’t sit in them. You need to fight for yourself.”
Tamika said she “lost her voice in the healthcare system”, but she had to find the strength to continue to advocate for herself, when no one else would listen.
