Endometriosis, PCOS and Fibroids: Why So Many Women Are Diagnosed Late

SERIES 2: WOMEN’S HEALTH — LET’S TALK ABOUT IT · ARTICLE 2 OF 8

Endometriosis, PCOS and Fibroids: Why So Many Women Are Diagnosed Late. Your pain is real. Your symptoms matter. You deserve answers.

She had been telling her doctor ab

out the pain for eight years. Every month, without fail, she was in agony. She missed work. She missed her children’s school events. She lay in the bathroom unable to move.

“It’s just bad periods,” she was told. “Some women are more sensitive.” She was given painkillers and sent home. Again. She was finally diagnosed with endometriosis at thirty-four. The doctor said she had probably had it since she was a teenager.

Eight years. Two decades of suffering that had a name, a cause and crucially treatments. But nobody had looked. This story is not unusual. It is, devastatingly, one of the most common stories that women with endometriosis, PCOS and fibroids share. And for Black and minority ethnic women, the wait is often even longer. You were not imagining it. And you deserve better.

Three Conditions. Millions of Women. One Common Story.

Endometriosis, polycystic ovary syndrome (PCOS) and uterine fibroids are three of the most common gynecological conditions affecting women worldwide. Yet all three are routinely underdiagnosed, misdiagnosed, and dismissed particularly in women from BAME and migrant communities.

🩸 Endometriosis

When tissue that should line the womb grows outside it causing pain, inflammation and scarring.

Affects: 1 in 10 women worldwide approximately 190 million globally

🔴 Key Symptoms

Severe period pain that disrupts daily life; pelvic pain outside periods; pain during sex; painful bowel movements; heavy periods; fatigue; bloating; difficulty conceiving

⌛ Diagnosis Gap

The average time to diagnosis in the UK is 8 years from first reporting symptoms. It can only be definitively confirmed via laparoscopy (keyhole surgery).

🌍For Women of BAME Communities

Research shows Black and South Asian women with endometriosis wait significantly longer for gynecological referral. Symptoms are more often attributed to stress or cultural sensitivity.

🔬 Polycystic Ovary Syndrome (PCOS)

A hormonal condition affecting how the ovaries work, causing wide-ranging physical and emotional symptoms;

Affects: 1 in 10 women of reproductive age; up to 70% of cases remain undiagnosed

🔴 Key Symptoms

Irregular or absent periods; excess facial/body hair; hair thinning; acne; weight gain around the abdomen; difficulty conceiving; fatigue; mood changes; dark patches of skin

⌛ Diagnosis Gap

PCOS is underdiagnosed because its symptoms vary greatly and overlap with other conditions. Many women are prescribed the pill without the underlying PCOS being formally identified.

🌍 For Women of BAME Communities

South Asian women have higher rates of insulin-resistant PCOS, increasing risk of type 2 diabetes. Facial hair carries cultural stigma that delays many women from seeking help.

🟠 Uterine Fibroids

Non-cancerous growths in or on the uterus causing heavy bleeding, pain and pressure symptoms

Affects: Up to 77% of women will develop fibroids; 3–4× more common in Black women

🔴 Key Symptoms

Heavy or prolonged periods; pelvic pain or pressure; frequent urination; constipation; backache; pain during sex; a swollen or enlarged abdomen

⌛ Diagnosis Gap

Fibroids are often discovered incidentally. Many women are told heavy periods are normal and managed with contraception without investigation into the underlying cause.

🌍For Women of BAME Communities

Black women develop fibroids earlier, have more and larger ones. Yet they are less likely to be offered uterus-preserving treatments and more likely to be offered hysterectomy.

"Your pain has a name.

Your symptoms have a cause

You are not being dramatic.”

Why Diagnosis Takes So Long

The diagnosis gaps for these three conditions are not accidents. They are the product of intersecting failures in how medicine was designed, how women’s pain is perceived, and the additional barriers BAME and migrant women face.

🔎 Reason 1: Women’s Pain Is Systematically Underestimated

Decades of research confirm that women reporting pain are more likely to have their symptoms attributed to psychological causes, and less likely to receive adequate pain management, than men with the same symptoms.

Period pain is so normalised that even severe, life-disrupting pain is frequently dismissed as ‘just a bad period.’ The phrase ‘some women are more sensitive’ has ended more diagnostic journeys than it has started.

🏫 Reason 2: Medical Training Has a Knowledge Gap

Endometriosis, despite affecting 1 in 10 women, receives very little dedicated time in UK medical training. A 2020 Endometriosis UK survey found that 50% of GPs felt they did not have sufficient knowledge to recognize it.

The result is that the clinicians women first see their GP are often not equipped to recognise these conditions from the presenting symptoms.

🌍 Reason 3: Racial Bias in Pain Perception

Research consistently shows that Black women’s pain is more likely to be dismissed, minimised and under-treated than white women’s pain. This is embedded in systemic patterns across healthcare not just individual prejudice.

Black women are more likely to have symptoms attributed to anxiety, lifestyle or cultural difference. They are less likely to be referred to specialists in a timely manner. This is not acceptable. And it is not your fault.

🗣️ Reason 4: Cultural Silence Around Periods

Many women with endometriosis, PCOS and fibroids delayed seeking help because they assumed what they experienced was normal for everyone. This is one of the most important reasons why health literacy education matters.

As we discussed in Article 1 of this series, menstruation is surrounded by silence in many of our communities. Women who grew up being told painful periods are normal may not recognise when symptoms cross the line from typical to concerning.

Symptoms That Are Never ‘Just Normal’

These symptoms should always prompt a conversation with a doctor and if you are dismissed, a second conversation with a different doctor:

🔴 Never Accept These as ‘Just How It Is’

• Period pain that requires you to take time off work, school or your usual activities

• Pain during sex, particularly on deep penetration

• Pelvic pain or pressure present outside of your period

• Periods so heavy you soak through protection within an hour for several consecutive hours

• Periods consistently lasting longer than 7 days

• Bloating so severe your abdomen looks visibly enlarged (‘endo belly’)

• Painful bowel movements coinciding with your period

• Cycles consistently shorter than 21 or longer than 35 days

• Noticeable increase in facial or body hair growth

• Hair loss or thinning at the scalp

• Significant unexplained weight gain, particularly around the abdomen

• Difficulty conceiving after 12 months of trying (6 months if over 35)

• A persistent feeling of fullness, heaviness or pressure in the lower abdomen

How to Get the Help You Deserve

The single most powerful tool you have is documentation. When you track your symptoms, you transform a subjective complaint into objective data. Data is much harder to dismiss.

When your GP says…

“It’s just a bad period.”

“All women have pain.”

“Your bloods are normal.”

“Try the pill first.”

“Losing weight might help.”

If you are dismissed entirely

You can say…

“I have been tracking my symptoms for three months. My pain consistently rates 8 or 9 out of 10 and prevents me from working. I would like a gynecology referral to rule out endometriosis or fibroids.”

“The level I experience is not manageable with standard pain relief and significantly affects my quality of life. I would like this investigated.”

“Normal bloods do not rule out endometriosis, PCOS or fibroids. Can we discuss an ultrasound or a specialist referral?”

“I’m open to treatment, but I’d also like a diagnosis so I understand what I’m treating. Can we investigate the underlying cause at the same time?”

“I’d like to understand whether there is an underlying condition contributing to both my weight and my other symptoms.”

“I’d like to formally note my concerns in my medical record and request a referral to a gynecologist. If you’re unable to make that referral today, I’ll follow up in writing.”

If you are not getting the help you need from your GP, you have the right to request a second opinion. Afia Clinic can help you navigate these pathways.

“If you are dismissed once, that is the system failing you.

If you are dismissed twice, ask for a second opinion.

You have the right to be heard.”

The Mental Health Impact No One Talks About

Living with a chronic, painful and under-recognised condition takes an enormous emotional toll. Women with endometriosis, PCOS and fibroids report significantly higher rates of anxiety and depression than the general population. Years of being dismissed erode trust. Chronic pain exhausts the nervous system. Your mental health is not separate from your physical health. If you are struggling emotionally as well as physically, that deserves support too. Afia Clinic is here for both.

A Word to the Woman Who Has Been Waiting

If you have been living with pain, heavy bleeding or hormonal chaos and have been told repeatedly that everything is fine we want to say something clearly:

You were right. Something was wrong. And you deserved to be believed.

Come to Afia Clinic. Bring your symptoms, your questions, your anger and your exhaustion. We will help you find the words, navigate the system and access the care you have always deserved.

💜 Afia Clinic: Supporting Your Whole Health

Afia Clinic offers free peer support sessions, women’s health workshops and health awareness events. We can help you prepare for GP appointments, understand your rights, and navigate specialist referrals. You do not have to go through this alone.

📍 North East of England

🌐 Women Empowerment and Wellness Network (WEWN) North East, England

✉️ info@wewn.org.uk

All sessions are confidential and culturally sensitive .

Interpreter and translation support is available upon request.

Afia Clinic — info@wewn.org.uk — we can help you find your nearest service.

⚠️ Medical Disclaimer

This article provides health awareness information only. It is not a substitute for professional medical advice. If you have concerns about your gynecological health, please speak to your GP. Do not delay seeking help for symptoms that are affecting your quality of life.

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