Fibroids Are A Black Health Issue. Why Is Diagnosis So Hard?

I’ve always had really bad periods, but until recently, I’d never thought anything of it. When it was my time of the month I knew that week would be pure agony.

I thought this was normal until I read Period Power by Maisie Hill. In the book, she emphasises that your periods shouldn’t be stopping you from living your day to day life, and if they are you should speak to a doctor.

From then I started to do my research into medical diseases such as fibroids, endometriosis and PCOS, learning about the symptoms of each. I soon concluded that I (probably) had fibroids, but I knew getting a diagnosis wouldn’t be easy.

Nearly a quarter of Black women between 18 and 30 have fibroids compared to about 6% of white women, according to some estimates. And by age 35, that number increases to 60%. Despite this, Black women report it taking months – and in some cases, years – for their symptoms to be taken seriously be medical professionals.

My family knows this all too well. My mother was diagnosed with fibroids when she was around the same age as me. She had a fibroid removed and didn’t have any complications until years later. Around 2008, she started experiencing a lot of fatigue and reported it to our GP a few times, without much investigation.

Eventually, her fatigue became unbearable and when she went to the GP again, blood tests revealed she was anaemic as a result of fibroids. This time, they were really large, which led to her having them lasered out. If fibroids are detected early, they can be often be treated with medication.

I wanted to find out if other Black women have had similar experiences – and why diagnosis continues to be a problem. But first, let’s go back to basics.

What are fibroids? 

Dr Deborah Lee, a sexual and reproductive healthcare doctor from Dr Fox Pharmacy, says fibroids are “benign tumours of small muscle which arise in the wall of the uterus (womb)”.

“Each fibroid grows from one individual muscle cell, which grows out of control. As the fibroid enlarges, it presses on any surrounding structures,” she tells HuffPost UK. 

“Fibroids count for one third to one half of hysterectomies. Other treatments are increasing in popularity, such as embolisation, where the blood vessels feeding the fibroid are blocked and the fibroid dies, or myomectomy – surgical removal of the fibroid.”

What are the signs of fibroids? 

• Heavy menstrual bleeding
• Painful sex
• Lower back pain
• Abdominal distension (when the abdomen is swollen outwards) 
• Fatigue
• Inter-menstrual bleeding (bleeding between periods)
• Urinary symptoms (such as frequent urination or incontinence).

After putting the doctor’s visit off, I eventually went for an ultrasound was told my cysts looked larger than normal. I was relived as I knew something was off. However, I wasn’t offered any further treatment for the cysts or my painful periods. I felt frustrated, but this was peak pandemic, so I didn’t bother going for another doctor appointment.

My experience isn’t unique though. Black women are more likely to be diagnosed with fibroids than white women. “Ethnicity is an important factor for consideration when considering a diagnosis of fibroids. In Black women, fibroids tend to cause troublesome symptoms at an earlier age, be larger in size, be more numerous, and grow more rapidly,” Dr Lee says.

“Fibroids are also sensitive to oestrogen. Black women more commonly possess a specific oestrogen receptor known as the oestrogen receptor-α PP variant, which has also been linked to the presence of fibroids. Some research suggest fibroids may be linked to vitamin D deficiency, and Black women are more likely to vitamin D deficient than white women. Vitamin D is an essential vitamin for bone health but it also plays a vital role in regulating the immune system.”

What do Black women say about fibroids? 

Though we’re more likely to be diagnosed with fibroids, our journey to being diagnosed is often difficult.

Rasheedat Olarinoye, a 25-year-old civil servant from Slough, recently had a myomectomy to remove her fibroids. It took nine months for her to be diagnosed, and her fibroids got so big, she says she looked six or seven months pregnant.

Her concerns started in September 2020 when she noticed her stomach was bloated. At first she thought it could be something to do with her digestion. She didn’t link her stomach issues to her periods, even though she would have painful cramps and often bleed for up to 10 days. Similar to me, she thought painful periods were normal because she was used to dealing with the pain.

“By October I had an appointment with a doctor. I was doing a lot of blood tests and they said everything looked normal, but something did look a bit off and it looked like I potentially had IBS,” she says.

“Eventually I got a colonoscopy and endoscopy in January. When the results came I was devastated, because they didn’t find anything. When I asked the doctor what I should do they said: ‘Why should I know? Your GP should tell you.’”

After the colonoscopy, doctors gave Olarinoye antibiotics for her stomach to see if it would help and for a few weeks it did. But after some time, her abdomen continued to get big, so big that it was digging into her ribs.

In April, she decided to go to A&E and was told she needed an ultrasound. She waited for nine hours while the doctor tried to arrange this, but was eventually sent away and told to book an ultrasound at a later date. Still, she was happy someone finally validated her concerns.

“That was the first time someone connected the growth of my stomach to my period. The doctor asked me about my menstrual cycle and I actually brought out my period calendar as it was quite irregular. I’d been bleeding twice a month at that point.”

A few days later she finally got an ultrasound. “The doctor and her colleague said my stomach was so big that they couldn’t find my right ovary,” she recalls. “A lot of my organs at that point had been displaced.”

The doctors then arranged an MRI for further investigation, which didn’t happen until June. It was then that Olarinoye finally found out she had fibroids. “The doctor asked me if I knew what fibrods were and I said ‘yeah I guess’. He then proceeded to tell me I needed injections and I needed to take three today. I was crying and wiping my eyes.”

Alisha Oni, a 28-year-old civil servant from Manchester, also had a long journey to diagnosis. She started experiencing pain in her lower back when she was around 23 years old. She went to the doctor about her pain in 2017 and her doctor recommended that she get an ultrasound.

“The the doctors told me I had a fibroid, which is about half the size of your womb. That was the first time I’d ever heard that word,” she says.

“I was then referred to a gynaecologist and she said, because the problems aren’t life-threatening, the pain is probably coming from me eating gluten. So they just told me to stop eating gluten and lose weight and kind of brushed away my concerns.”

Nine months later her periods started getting really heavy and she was bleeding constantly. When she attended her cousin’s wedding, she bled everywhere and was so embarrassed. “It was so bad I thought I was having a miscarriage,” Oni says.

That’s when she started pushing for a doctor and tried to get referred somewhere else. Luckily, she managed to get referred to a private gynaecologist who took everything seriously. Oni finally got her fibroids removed in July 2021.

It took both women months and even years to find out they actually had fibroids. And in both cases, their concerns were only taken seriously when their health deteriorated.

Black women’s health concerns are often not taken seriously due to structural racism. I avoided going to the doctor for years because I didn’t think my worries would be met.

“History tells us that Black women have suffered from bias and stigma dating back many generations,” says Dr Lee. “In the 19th century, a doctor by the name of Thomas Hamilton, also a plantation owner, regularly tortured a black slave called John Brown, to produce blisters, in an effort to prove black skin was thicker than white skin.

“In a shockingly recent 2016 study of first and second-year medical students, nearly half believed that Black skin was thicker than white skin and that Black people did not feel so much pain as white people.”

Even more recently, a 2018 US study looked at racial disparities in the management of pain. “Black patients were 40% less likely to receive pain relief than whites, and 36% less likely to be prescribed strong analgesics such as opiates (morphine),” says Dr Lee.

In the UK, the 2019 Saving Lives, Improving Mothers Care report revealed that compared to white women, Black women in the UK had:

•  A five times increased risk of dying as a result of pregnancy complications
• Had a higher rate of miscarriage in natural and IVF pregnancies
• Were twice as likely to experience a stillbirth.

The Royal Collage of Midwives and Gynecologists (RCOG) has since set up various focus groups investigate health outcomes for Black women. Clearly, research on fibroids needs to be one of their focusses.

If you’ve had a multitude of bad experiences with doctors, it can limit your faith in medical establishments. Having heath anxiety is a valid feeling, but it’s also important for you and your health to be seen by professionals. Dr Lee tells us how we can have a successful consultation.

How can I have a successful consultation?

• Take someone with you to the clinic – perhaps your partner, or a friend or relative who can support you.
• You can ask for a doctor of the sex of your choice, although this is not always possible on the day, and you may be asked to come back on another occasion to see this person.
• Write a list of questions before you go to the clinic, and don’t be afraid to get out your list and go through these one by one.
• Sit comfortably and make eye contact with the doctor. Speak slowly and clearly. Try and get a satisfactory – Yes or No answer. If you don’t understand, say politely, ‘I’m sorry I don’t understand, please can you explain it to me again.’ Make sure you have switched off your mobile phone.
• If you are worried you might have fibroids, you should not be worried about telling the doctor your concerns. The doctor has a duty of care and must listen to your ideas, concerns and expectations. If they do not, they are breaking the GMC Good Medical Practice code of conduct, and you are fully able to make a complaint.

HuffPost UK has contacted NHS England and the Department of Health and Social Care about the concerns raised by women in this article and is awaiting response.

Black women shouldn’t have to wait until our pain is taking over our lives to be taken seriously by a doctor. Our pain and our experiences are valid, so our concerns should be raised appropriately.

If you’re a Black woman who is worried about having fibroids, please speak out. I hope you can be seen by a doctor who will give you the help you need.