After bleeding heavily for 30 consecutive days, following a 15-year battle with fibroids, Rose Marie Johnson found herself in the emergency room and was hospitalised for 14 days. "I had to undergo an emergency procedure to remove five pounds of fibroids. Just close your eyes for a moment and visualise a five-pound (2.3kg) bag of apples."
Rose had known that she had fibroids for over a decade due to physical examinations carried out by her gynaecologist. "So many women, like myself, are given the 'touch test' only during routine physical exams. However, this type of test is preliminary and not a confirmed diagnosis."
From the age of 14, Rose suffered from morbid menstrual cramping, heavy cramping, frequent urination, passing blood clots, chronic constipation, anaemia and more. "Although I shared my incapacitating symptoms with doctors for several years, none recommended or ordered an imaging test to confirm sizes, quantity and types of fibroids growing inside my uterus, until I was 39 years old," Rose says. Instead, when Rose sought medical help, mentioning her fibroids, doctors dismissed her, saying things like: "Many women have fibroids so let's swap your birth control pills, get you on a higher dose of ibuprofen, build up your iron stores since you're chronically anaemic, then we'll 'watch and wait' to see how rapidly your fibroids are growing."
Uterine fibroids are non-cancerous growths that develop in or around the uterus. They can vary in size and many women may not even know they have them. One in three women who do will experience symptoms such as heavy and painful periods, abdominal pain, lower back pain, frequent urination, constipation, and discomfort or pain during sex.
Unfortunately for Rose, her journey with fibroids did not end well. "This [watch and wait] approach allowed weeks or months to elapse with repeated testing (if recommended) before medical intervention or therapy is used to address fibroids. But since my uterus was equivalent to that of a honeydew melon or four-month pregnancy, when finally diagnosed at age 39, I was faced with two treatment options: to continue watchful waiting until menopause, or hysterectomy."
Rose had a hysterectomy. "Once finally diagnosed, I knew I was doomed. I had zero options in having them removed so that I could become pregnant as I wasn't a candidate for any fibroid removal procedure other than hysterectomy. I also knew that having large and multiple fibroids would impede my ability to get pregnant." This knowledge severely impacted Rose's sex life. "I had to accept that I would never experience natural childbirth and motherhood as I had hoped I would someday."
Rose is based in the US but general diagnosis and treatment of problematic fibroids in the UK may follow a similar path. Dr Olayisade Taylor, who works in obstetrics and gynaecology for the NHS, says: "Fibroids are usually diagnosed on examination or found on imaging (for example an ultrasound scan). On an internal examination the womb can feel bigger or an actual fibroid can be felt depending on the size. This examination is similar to what some may refer to as a 'touch test' in the US." She says that watchful waiting is a potential course of action in fibroid management, depending on the patient's symptoms. "Most women can be without symptoms and therefore no management is required. If a woman is having symptoms then we can offer options to manage that."
If symptoms do manifest, the physical effects of fibroids can be extremely serious. Dr Olayisade continues: "If heavy bleeding [from fibroids is allowed to continue] it could lead to long-term anaemia that can manifest as tiredness, light-headedness, shortness of breath or palpitations." She notes that symptoms can vary greatly based on the size and location of the fibroids. "Additionally," she says, "fibroids can sometimes affect fertility depending on their position and the way it changes the shape of the womb cavity. While a woman is pregnant and if she has fibroids, this can affect whether she can have a vaginal delivery and can put her at an increased risk of premature labour or heavy bleeding after delivery."
The NHS notes that fibroids are more common in women of Afro-Caribbean descent. A 2015 study highlighted that 80% of Black women will suffer from fibroids, compared to 70% of white women by age 50. Black women are also two to three times more likely to have recurring symptoms or fibroids. They are also more likely to report severe pain and be anaemic as a result. It has also been found that Black women are more likely to get diagnosed later in life, which worsens the overall prognosis.
The problem with the symptoms of fibroids is that women associate periods with pain and as such may dismiss their symptoms. Even worse, doctors may do the same. When Rose went to doctors with her menstruation-related symptoms, she was told: "Many women experience painful periods, fibroids are common and benign." And while this can be true, it is also true that fibroids can grow as they did in Rose, becoming unmanageable and leaving patients with treatment options that could leave them infertile.
Sadly, there is little research into why fibroids are more present in Black women, Dr Olayisade says. "Unfortunately there isn’t a simple answer to that. There have been a variety of studies looking into the increased risk in Afro-Caribbean women but nothing conclusive has been evidenced yet." However, there are theories. "There have been suggestions that the increased risk to Afro-Caribbean women may be due to a genetic component, low vitamin D levels and, the strangest of all, the use of hair relaxer."
It's a problem that spans the entirety of Black women's health. "I think a lot of factors go into what is researched and maybe race is one of them," Dr Olayisade says. "A lot of research is financially motivated – it’s not necessarily as profitable to research why Afro-Caribbean women are more prone to fibroids as [it is to research] the causes or new treatment options for certain cancers for example."
In 2017 singer-songwriter FKA twigs underwent laparoscopic surgery to remove six large fibroids which she referred to as her "fruit bowl of pain" as they were the size of "two cooking apples, three kiwis and a couple of strawberries". Fans will remember her talking frankly about her experience in a bid to raise awareness of the issue. In an interview with Irene Agbontaen on her podcast TTYA Talks, twigs admitted that she didn’t know what uterine fibroids were until she was diagnosed, or the disparate impact they have on Black women. "To be honest with you, when I first started properly looking into it, it made me really angry," she said. "I just started to see what a disadvantage women of colour are at."
Dr Olayisade feels that this knowledge, if spread widely enough, could help save Black women. "I feel that Black women have more of an advantage. Being of African or Caribbean heritage is a known risk factor for this condition and if you are in the right age group and are having symptoms, it is not unreasonable for you to approach your healthcare provider for investigations to rule out fibroids."
After her own journey with fibroids, Rose wrote a memoir to educate and raise awareness for other Black women. "Five Pounds of Fibroids: A Memoir is a candid account of what it's like living with symptomatic, uterine fibroid tumours and explicitly reveals how they affected my quality of life, sex life, relationships, career and so much more," she explains. "While living with fibroids was like not living at all, I am grateful I survived so that I may share my plight with those suffering with fibroids [who] are unsure as of what to do."
The dismissal of Black women by medical institutions is common, especially in Britain. This was evidenced in the recent Black maternity scandal, when it was found that Black women are five times more likely than white women to die in childbirth. But the disparities don't stop there. Black women are also twice as likely as white women to experience stillbirth. Black women with breast cancer have a higher mortality rate than white women and are more likely to be diagnosed with a mental health illness and be detained under the Mental Health Act.
Dr Olayisade says: "There is however the potential for an unconscious bias regarding taking Black women’s symptoms seriously and therefore delaying the investigations they require for diagnosis and/or management. If women have symptoms they are concerned about or a family history of fibroids, they should definitely advocate for the right investigations."