Living with endometriosis and uterine fibroids whilst black with Justice Aina

By Nikki Michelsen

Nov 4, 2022

Living with endometriosis and uterine fibroids whilst black with Justice Aina
[CW: systemic racism, detailed discussion of gyneacological and medical conditions, gaslighting]
I spent my early teenage years rolling on the floor in agony, gripping onto sinks until my fingers went numb, and having to double up wearing both the heaviest of tampons and night pads just to get through a few hours of feeling secure (and if I was lucky a few hours of sleep too). It wasn’t until my fibroids protruded out of my stomach quite noticeably in my very early twenties that I had something physical to show my doctors. After around 10 years of agony, I got my diagnosis: fibroids and endometriosis.
Whilst the experience of waiting years to get diagnosed, having pain dismissed, and facing prejudice within the healthcare system is absolutely not a unique one, many Black bleeders, including myself, have found that the intersection of race has definitely added an extra obstacle when it comes to living with endometriosis and uterine fibroids.

So, what is endometriosis?

Endometriosis, or ‘endo’, as some of us tend to nickname the beast, is a condition where tissue similar to the lining of the uterus grows outside of the uterus (in places such as the organs, bowel, bladder, and lungs). As the menstrual cycle happens this tissue needs to bleed but has nowhere to escape, leading to inflammation and scarring, often causing debilitating pain and heavy periods.
The few studies that engage with race show that Black bleeders are less likely to get their endometriosis diagnosed, and there are even fewer studies as to why this is. From my experience as a Black woman, belonging to this intersection has definitely contributed to obstacles in diagnosis.

What does endometriosis feel like?

Endometriosis symptoms can vary from person to person, as some people with the condition experience no symptoms at all whereas others, like me, go through absolute agony if the pain is left untreated. The pain itself is hard to describe - it was both sharp and dull, like my organs are being compressed, crushed or scrunched. This would ramp up quite quickly when I needed to use the toilet and I could feel that there was no space for anything to move. I would stop breathing from the physical shock of the pain but also just to allow some room in there. Looking back I have definitely blacked out from the pain on a few occasions.
When it was at its very worst, the pain would radiate downwards into my legs and it would feel like a bad case of numbing pins and needles that wouldn’t go away whichever way I turned. I now understand that this is probably due to endometriosis sometimes affecting the sciatic nerve.
Finally, there was the heavy bleeding. I would use both a large tampon and a pad, only to have to change them 2-3 hours later at its heaviest. My constantly anaemic self would be so impressed with the clots of blood that would come out that I would sometimes take pictures for my own amusement. My period didn’t care if I needed to sleep, and managing it was a full-time job so I took the fun where I could.
This is just my example of what the pain typically felt like, but there are many many other symptoms such as; nausea, shoulder, neck, or chest pain. There is also vaginal pain, pelvic pain, whilst having sex as well as some more rare symptoms too - this list is by no means exhaustive. You don’t have to a certain number, or any these conditions to have endometriosis and the amount of pain doesn’t correlate with the degree of tissue growth either.

Systemic racism in health care

With recent investigations highlighting systemic racism in the UK leading to higher Covid-19 deaths for BAME people, there’s no reason to think this wouldn’t apply to the NHS and gynaecology. Modern gynaecological treatments and findings are the result of James Marion Sims’s non-consensual experiments on enslaved Black bodies. Consider the displayed abuse of Sara Baartman, or the non-consensual harvesting of Henrietta Lacks’ cervix cells, and it becomes incredibly clear that gynaecology’s relationship with Black AFAB (assigned female at birth) bodies runs deep.
Many people who experience severe pain and other period-related conditions such as PMDD (premenstrual dysphoric disorder) feel as if they are not believed or treated seriously. In 2012 there was an American study that showed a correlation between implicit biases of medical professionals and their treatment of Black people’s pain. It found that Black patients were 22% less likely than their white counterparts to receive any pain medication. Whilst this study is US-centred and arguably cannot be directly applied to the UK healthcare system, the source of this inequality is the same. Stereotypes and systemic beliefs about Black people within our society are complex, which leads to complex implicit biases that most healthcare providers go through their careers not checking. This isn’t a criticism of individual skill or competence, but rather a reality that our societal backdrop creates a blind-spot that all of us are influenced by. It affects every-day small decisions that lead to larger life-altering consequences.
I’ve found that the ‘superwoman’ stereotype bestowed on Black women is certainly not something that doctors are immune to. I’ve always had to express the greatest of vulnerability in hopes that my pain would be fairly considered.
I knew I had endometriosis from the age of about 16 - but what stopped me getting the help? It wasn’t that I had actually experienced not being believed myself, but rather the fear of that experience. It can be emotionally strenuous having to engage with a system that doesn’t believe womb-related pain, but when that intersects with race it becomes exhausting. In fact, I had a white partner at the time and, as they were masculine-presenting, I would ask them to come to appointments with me so that my complaint would be taken seriously. In some (rare) cases they addressed me and provided me with fair and correct information but in many cases they would speak over me, infantilise me, cut my sentences off, and simplify answers to my questions - all while treating my partner like a human being.

Getting an Endometriosis Diagnosis

Just before my monthly periods, I would notice a significant swelling on my lower abdomen – it would look like an early pregnancy but would go down after three or four days. When it started to get bigger after a few months I was sure to take pictures of its progress so that I didn’t have to push so hard with my case. My GP was efficient with getting me an ultrasound and then my first gynaecologist appointment. It went well and I was presented with a few options, with the most heavily recommended being a hysteroscopy (an internal womb inspection) where the Mirena coil would be inserted to help treat my symptoms and double up as a contraceptive (whoopee!).
I had previously been staunchly against any invasive procedure and, on reflection, I believe that a part of that was to do with my identity as a Black woman. Your space is often considered shared, public – your hair is touched, clothing policed, and you often have to move out of the way when walking (or get bruised!). However, the pain had become so debilitating and the bleeding so unmanageable that the coil was my best option.

What are fibroids then?

The NHS describes them as “non-cancerous growths that develop in or around the womb (uterus).” They are made up of muscle and fibrous tissue and vary in size. They're sometimes also known as uterine myomas or leiomyomas and are often actually asymptomatic. 1 in 3 people who have periods develop these at some point in their lives and they are thought to develop more frequently in those with an African-Caribbean background. They also develop earlier in these groups and are often larger and more intrusive.
Fibroids often see the endo having all the fun and come along for the ride. The symptoms are very similar to those of endometriosis if they do present. For me, these symptoms absolutely do overlap and I can’t tell you what symptoms are exclusively caused by the fibroids and which are caused by the endo - lucky, Mirena had my back for both.
Following my hysteroscopy in the 6-minute conversation with the consulting gynaecologist, I asked why they developed? My answer was ‘Black chicks just get them – that’s just how it is…Black chicks get fibroids and white chicks get cysts’. She really didn’t hold back on the infantilising, outdated, trans-exclusionary language when conveying that my racial biology was matter-of-fact and therefore she couldn’t help me any further. Although these do present themselves more within Black bleeders, it was her flippant attitude to them that left me feeling disheartened. In all these years, was there really no more that they could do?
Apparently not.

Rejecting the coil

My first period after the coil had been inserted had left me in so much agony that I ended up in A&E doubled over and looking about 6 months pregnant. I was unable to stand or walk and could only speak between breaths. After arriving at the hospital, the resident GP spoke over me and was very confident inserting her fingers without consent. I was not offered an ultrasound to detect the positioning of the coil, I was given some painkillers and sent back home.
A month later whilst on a date it fell out. I held it in my hand, after pulling it out of a thick jellied mass of blood that had pooled around it in my womb – all I could do was laugh.
The next day after cleaning the coil off, I showed my GP. He was sympathetic enough and advised me to get another coil inserted at a sexual health clinic.
After seven long hours of waiting and wailing in agony from the attempted cervix measurement, I was told that the positioning of the fibroids meant that insertion of a new coil was not possible without the assistance of an ultrasound scan, and I would have to start the adjustment cycle again by having an insertion in a month.
Skip to the end and I managed to get my new Mirena inserted privately after a week. The appointment was quick and (besides the cost) painlessness so overall a happy ending. I’ve now reached my one year anniversary of having the first coil inserted and I am lucky to be having almost no symptoms and so much more energy.
Living with endometriosis and/or fibroids is absolutely difficult for anybody. However, speaking to many of my white and non-Black POC counterparts, there is a particular nuance to the experience of having these conditions while Black. In fact, there are many conversations we need to have regarding the intersection of race and gynecology in general, that we shouldn't shy away from.

Meet the Author: Justice Aina

Justice (yup that’s her name!) is another one who falls into that awkward Millennial/ Gen Z grey area - she is absolutely a short attention spanned, multi-tasker who loves her avocado and toast. You’ll likely find her *trying* to play rugby if not painting portraits or googling (but never actually making it to) London’s best lunch spots. Jokes aside, she’s a social scientist who’s really keen on speaking and researching social inequalities and advocating for lasting social change. You can follow her on IG @justdoitjustice.
Image Credit: Justice Aina