From endometriosis to fibroids: The health conditions affecting black women most

Symptoms, diagnosis and treatments, explained

Women of all ethnicities are prone to gynaecological and reproductive conditions. 

However, there is some research suggesting that black women are more likely to experience a great burden of disease. With fibroids for example, black women may develop more of them or larger ones and often, these are at a younger age. All women and especially ethnic minority women may also face delays in diagnosis or access to treatment.

Research is still evolving however, women from all ethnicities are at risk of developing fibroids and should be aware of the signs and symptoms of certain gynaecological conditions. 

At London Gynaecology, we make sure everyone receives the same high level of care. We also take into account the potential differences in how certain conditions can present or progress in different groups, ensuring that diagnosis and treatment are tailored to each individual.

Fibroids, endometriosis and PCOS have been found to affect black women more; here’s what every woman should know about these common gynaecological conditions, and when to get checked.

Fibroids 

Almost 50% of women will get uterine fibroids by the age of 50. These non-cancerous lumps grow in the uterus and can lead to symptoms that really affect the quality of your life.

Research has found that fibroids are more common and more severe among black women, with African American women being three times more likely to develop fibroids. 

Plus, African American women have fibroids diagnosed at earlier ages and they tend to have more symptoms. 

Other ultrasound evidence shows that more than 80% of African American women will have uterine fibroids by age 50 compared to approximately 70% of white women. The research on why this is the case, still hasn’t been confirmed.

Symptoms of fibroids can vary between individuals. Heavy periods, bleeding between periods and fatigue are common. Larger fibroids can sometimes be felt, and at times, they can be painful and put pressure on the bladder, leading to a greater urge to pee. They can cause constipation, back pain and fertility concerns.

Fibroids are also oestrogen-dependent, so they’re rare before the age of 20 and after menopause, when oestrogen levels decline, they usually get smaller but are unlikely to completely disappear.

Being aware of fibroids and seeking help can prevent years of potential discomfort. 

For many women, treatment starts with managing symptoms, perhaps by easing heavy periods and treating anaemia, a condition that causes fatigue and weakness. 

Smaller fibroids that grow inside the womb can sometimes be removed with a simple hysteroscopic procedure, while slightly larger ones  may be taken out using keyhole 

surgery. 

When fibroids are very large or there are a lot of them, an open myomectomy may be needed. This involves removing the fibroids through a single incision in the abdomen.

“It’s vital that women are not dismissed, by healthcare professionals or by one another, and that they seek help early,” warns Mez Arif-Adib from London Gynaecology.

“Modern imaging with ultrasound or MRI provides detailed information, and with advancing technology, more treatment options are available than ever before. Robotic surgery, for example, which we offer at London Gynaecology, has revolutionised the way fibroids are removed, and newer medications and minimally invasive treatments such as radiofrequency ablation are also transforming care.”

The most important thing is to advocate for yourself, stay informed and seek help

“Don’t listen when people try to normalise what clearly isn’t normal,” says Mez Arif-Adib.

Endometriosis

As high as 1 in 10 women in the UK suffer from endometriosis and it’s the second most common gynaecological condition in the UK, yet sufferers of the condition wait between eight to 12 years on average for a diagnosis. 

Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrium) is found outside the uterus, is less likely to be diagnosed in black women, despite both black and white women being at risk of endometriosis.

In fact, research shows that black women are 50% less likely to be diagnosed with endometriosis compared to white women, even with similar symptoms.

Symptoms of endometriosis can be incredibly uncomfortable. Pelvic pain, fatigue, heavy or irregular periods and pain during sex are just some of the symptoms women with endometriosis may have to endure.

It’s important to remember that endometriosis doesn’t discriminate. If you notice symptoms, you must seek help, so you can receive an appropriate diagnosis. Endometriosis can make it harder to become pregnant and it can also be uncomfortable, and many women may just brush off any pain as period related.

Endometriosis can be diagnosed by scan, laparoscopy and now there is a new saliva test to detect it. A laparoscopy is a look inside the abdomen with a telescope, carried out under general anaesthetic.

There are many treatment modalities now for endometriosis including medications and surgery but at present we still have no cure.

Polycystic Ovary Syndrome (PCOS)

Around seven in 100 women in the UK have PCOS, a hormonal condition affecting how the ovaries function. 

PCOS brings with it many frustrating symptoms. Women may suffer from irregular or absent periods, acne, excess hair growth, scalp hair thinning, weight gain and difficulties conceiving. 

Many women also experience insulin resistance, which means their body isn’t responding properly to insulin, the hormone that helps control blood sugar levels. When this happens, their body has to make more insulin to keep blood sugar stable. Over time, this can increase the risk of type 2 diabetes and cardiovascular disease.

PCOS is often diagnosed in late teens or early adulthood. But, there is research to suggest that black women might struggle to receive a diagnosis. Black women with PCOS may be more likely to experience insulin resistance compared to other groups which can delay diagnosis as symptoms may be attributed to other causes.

In all ethnicities, it can take a while for PCOS to be diagnosed but a diagnosis is made when at least two of three features are present: the ovaries have many (more than 20) tiny cysts, usually seen on an ultrasound scan; there’s a hormonal imbalance, where levels of testosterone in the blood goes over a certain level; and/or there’s failure to ovulate every month (anovulation) leading to infrequent or absent periods.

In terms of PCOS treatments, this can vary.

At London Gynaecology we tailor treatment to each woman’s needs. It may include lifestyle changes, medication to regulate hormones or ovulation and support for metabolic health. Remember that persistent symptoms such as irregular cycles, fatigue or weight changes aren’t something to ignore; your body needs attention and support.

“I had a fibroid the size of a grapefruit but GPs dismissed my pain”

Dawn Heels, a multi award winning fibroid advocate and campaigner struggled for years until she was finally diagnosed with fibroids. 

“Since the age of 14, I suffered with very heavy, painful periods.

I was put on the progesterone-only pill, which stopped my periods completely and allowed me to live a great and happy life.

When I hit my 30s I came off the pill as I knew I’d want to try for a baby. I was then met with the most excruciating, heavy and painful periods, which I thought were normal. When I started to experience a dull, sharp pain on the left-hand side of my abdomen, my GP dismissed it,  linking the pain to my cycle. Over a short period of time, the pain worsened so I sought advice from another doctor. A female doctor.

She referred me for an ultrasound scan which revealed two fibroids, each four centimetres in size. I was told to manage pain with a hot water bottle and ibuprofen. 

What followed was a six-year battle with my GP as my symptoms got worse. Leg pain, back pain, buttock pain, constant urination, painful sex, a protruding belly, infertility and very heavy clot-filled prolonged periods. 

Eventually I saw a private consultant, who saved my life. A scan revealed at least six fibroids in and around my uterus; the largest being the size of a grapefruit. 

I wanted to conceive and the fibroids were preventing implantation, so I was advised to have an open myomectomy.

During surgery they discovered I actually had 18 fibroids in total of which 16 were removed. 

Recovery was hell for me and it was only until eight weeks later that I finally started to feel human again. 

To this day, I still have fibroid checks and since the surgery I’ve been blessed to have two beautiful children.

I never set out to share my fibroid journey so publicly. But when I posted a short update about my fibroids on social media, I was flooded with messages from women who were either living with fibroids or recognising their symptoms for the first time.

I hosted an Instagram Live called My Fibroid Journey, which received an incredible response. I also set up The Guidance Suite, a free online support group which helps to empower women with knowledge and information so they can take control of their womb health and feel confident making decisions about their own care.

I’m currently involved in major fibroid policy work with the Royal College of Obstetricians and Gynaecologists and I regularly contribute to fibroid research.

Meet the expert: Mez Arif-Adib

Miss Mehrnoosh Aref-Adib, who also goes by the name of Mez, is a Consultant Gynaecologist and Obstetrician at Whipps Cross Hospital, part of Barts Health NHS Trust in London. She completed her medical training at the University of Cambridge and University College London (UCL), followed by specialist training in Obstetrics and Gynaecology across North Central London.

Mez has certification in both hysteroscopy and laparoscopy, she holds a Postgraduate Certificate in Ultrasound from King’s College London (2016) and she is accredited in colposcopy by the British Society for Colposcopy and Cervical Pathology (BSCCP).

Mez has extensive experience in both obstetrics and gynaecology and is skilled in early pregnancy, gynaecological ultrasound, colposcopy, robotic and laparoscopic surgery and a range of operative procedures.

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