Fibroids Are A Black Health Problem. Why Is Diagnosis So Difficult?

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

I thought that was normal until I read Maisie Hill’s Period Power. In the book, she emphasizes that your menstruation should not prevent you from living your daily life, and if they are, you should talk to a doctor.

Since then I have started researching medical diseases like fibromides, endometriosis and PCOS, learning about the symptoms of each. I soon concluded that I had (probably) had fibroids, but I knew that getting a diagnosis would not be easy.

Nearly a quarter of black women between the ages of 18 and 30 have fibroids compared to about 6% of white women, according to some estimates. And by the age of 35, that number is rising to 60%. Despite this, black women report that it takes months – and in some cases, years – for their symptoms to be taken seriously by 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 fibroids removed and did not have any complications until years later. Around 2008, she began to experience a lot of fatigue and reported it to our doctor a few times, without much research.

Later, her fatigue became unbearable and when she went to the doctor again, blood tests revealed that she was anemic as a result of fibroids. This time, they were really big, which led to her having them laser out. If fibroids are detected early, they can often be treated with medication.

I wanted to know if other Black Women had similar experiences – and why diagnosis is still a problem. But first, let’s get back to basics.

What are fibroids?

Dr. Deborah Lee, a sex and reproductive physician at Dr. Fox Pharmacy, says fibroids are “benign tumors of small muscle that arise in the wall of the uterus (uterus)”.

“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.

“Fibromides account for a third to half of hysterectomies. Another treatments increases in popularity, such as embolization, where the blood vessels eating the fibroid are blocked and the fibroid dies, or myomectomy – surgical removal of the fibroid. “

What are the signs of fibroids?

  • Strong menstrual bleeding

  • Painful sex

  • Lower back pain

  • Abdominal distension (when the abdomen is swollen out)

  • Fatigue

  • Intermenstrual bleeding (bleeding between periods)

  • Urinary symptoms (such as frequent urination or incontinence).

After the doctor canceled the visit, I finally went for an ultrasound, it was said that my cysts looked bigger than normal. I was revived because I knew something was wrong. However, I did not offer any further treatment against the cysts or my painful periods. I felt frustrated, but this was a peak pandemic, so I didn’t bother going for another doctor.

My experience, however, is not unique. Black women are more likely to be diagnosed with fibroids than white women. “Ethnicity is an important factor to consider when considering a diagnosis of fibromides. In black women, fiber tends to cause annoying symptoms at an earlier age, be larger in size, be more numerous, and grow faster,” Dr. Lee says.

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

Jose Luis Pelaez for Getty Images

What do black women say about fibroids?

Although we are more likely to be diagnosed with fibroids, our journey to diagnosis 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 have become so large, she says, that she looked six or seven months pregnant.

Her worries began in September 2020 when she noticed her stomach was swollen. At first she thought it might be something related to her digestion. She did not link her stomach problems to her menstrual cramps, although she would have painful cramps and often bleed for up to 10 days. Like me, she thought that periods of pain are normal because she used to treat the pain.

“Until October I had an appointment with a doctor. I did a lot of blood tests and they said everything looked normal, but something looked a little weird and looked like I might have had IBS, ”she says.

“I finally got a colonoscopy and endoscopy in January. When the results came I was devastated because they found nothing. When I asked the doctor what to do, they said, ‘Why should I know? Your doctor should tell you. “

After the colonoscopy, doctors gave Olarinoye antibiotics for her stomach to see if it would help and for a few weeks yes. But after a while, her abdomen continued to grow big, so big that it dug into her ribs.

In April, she decided to go to A&E and was told she needed an ultrasound. She waited nine hours while the doctor tried to arrange this, but was later dismissed and ordered to reserve an ultrasound at a later date. However, she was happy that someone finally validated her worries.

“That was the first time anyone had connected the growth of my stomach to my menstrual period. The doctor asked me about my menstrual cycle and I actually put out my period calendar because it was pretty irregular. I was bleeding twice a month at that time. ”

A few days later she finally received an ultrasound. “The doctor and her colleague said my stomach was so big they couldn’t find my right ovary,” she recalls. “Many of my organs were displaced at the time.”

The doctors then arranged for MR for further investigation, which did not happen until June. It was then that Olarinoye finally discovered that she had fibroids. “The doctor asked me if I knew what fibroids were and I said ‘yes I guess.’ He then went on to tell me I needed injections and I needed to take three today. I cried and wiped my eyes.”

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

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

“I was then referred to a gynecologist and she said because the problems are not life threatening, the pain probably comes from me eating gluten. So they just told me to stop eating gluten and lose weight and get rid of my worries a little bit. “

Nine months later her periods began to get really heavy and she was constantly bleeding. When she attended her cousin’s wedding, she was bleeding everywhere and was so embarrassed. “It was so bad that I thought I had an abortion,” Oni says.

That’s when she started pushing for a doctor and tried to be referred elsewhere. Fortunately, she managed to be referred to a private gynecologist who took everything seriously. Her fibers were finally removed in July 2021.

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