Guest post by Fiona Timba, founder of @EndoSoBlack
The writer of this guest post was paid for her contribution thanks to sponsorship from period and leak-free underwear brand Modibodi, and donations from Hysterical Women readers. Thank you to all of them for their generosity in supporting this #BlackWomensHealthMatters series.
The first time I ever swore in front of my mum, I was around 23 years old. I can remember it clearly, crying as frustration finally getting the best of me: “What a complete b***h! She didn’t even care that I’m in pain, it’s not just bad f******g period pains.” Yep, I went from zero to 100 when it came to swearing in front of my mum.
My mum was born in Jamaica and my dad was born in Cameroon. As a first-generation Brit I grew up in a very strict household. Work hard, good manners, be respectful to your parents – the cliche of the immigrant household, but loving nonetheless. It also meant that whilst I might dabble in sailor talk outside of the house, I never swore in front of my parents.
To be fair, my Mum handled my expletives like a champ, hugged me and told me to not get myself worked up. I should clarify it wasn’t my mum who was the subject of my swearing, but the female consultant who’d just dismissed me from her care, with a shrug of her shoulders, after I’d spent years trying to get a referral. She didn’t even stay in the room to finish her consult, but walked to the door, saying as she left: “it’s just bad period pains, some women have it…”
I realised I had endometriosis around 2014, when I was 28 years old. I vividly remember sitting on a Piccadilly line train, reading an article about Lena Dunham’s experience with endometriosis. She was describing exactly what I go through: being unable to walk, to work, to sit; crouching on the floor in agony every month; sleepless nights of agony; sitting over the toilet and bleeding into it because it was just too heavy; blood running down my legs, despite changing my super tampon and night time pad every two hours. I actually started crying, and when I got above ground I called my mum. I know what it is, my enemy has a name!
It wasn’t just bad period pains, but it was what some women have. 1 in 10 to be precise. I’d been going to doctors since I was 16, with my period pain getting progressively worse, but it would take me another 13 years before I was diagnosed with endometriosis, after countless trips to the doctors. On average it takes 7.5 years for women to be diagnosed with endometriosis, which is 7.5 years too long.
During my late teens and twenties, I moved around a lot. Each move should have been an opportunity for a medical professional to help me and deliver the diagnosis. Instead, each move created more trauma. It went a bit like this:
The first diagnosis was in 2007, by a Stratford GP: “dysmenorrhea” (a fancy word for heavy periods).
In 2009, an Uxbridge GP and consultants told me: “it’s just bad period pains…”
Birmingham, in 2010, the GP and consultants said it was: “fibroids – very common in Black women, and may cause heavy periods and pain. Too small to remove.”
Between 2011 and 2013, doctors in Paris, Maastricht and Brussels prescribed strong medication to deal with the pain.
After my realisation in 2014, my GP in Uxbridge told me: “it can’t be endometriosis, the scans are clear”.
In 2015, my GP in East Finchley said: “the scans are clear, we can’t refer you to a gynae specialist again.”
I was repeatedly told by GPs that my scans didn’t show any signs of endometriosis. I went away and did my research: “you can’t diagnose via a scan. Online it says the only definitive way is a laparoscopy; can’t we just do that?”
Now the response I got, from two different GPs – the people we rely on to help us when we are in pain; the people we trust with our lives – was: “we can’t ask for a laparoscopy if the scans are clear, as we get charged for it.” I was crushed.
What you don’t see above is the number of strong painkillers and blood clotting tablets I received during this time. The number of times I was sent for sexual health tests, despite my assurances that I either wasn’t sexually active or was using protection!
What you don’t see is the impact this medication had on my stomach, and more importantly the impact that not being believed had on my mental health. I was told I had a low pain threshold. I was asked if I needed psychiatric help, and I was told that the pain I was describing was not possible as “the scans are clear”.
I actually started questioning myself. What’s wrong with me? I had watched TV documentaries about people who love attention so faked medical illnesses and genuinely believed their pain. And boy did my “unknown condition” get attention. Bloody hell, my whole family was clued into my cycle! It was like a tight military routine when I went down. Dad would boil the kettle, mum would bring the hot water bottle and my younger brother, bless him, would pop to the shop for supplies and chocolate.
Was there actually something wrong with me mentally rather than physically? I’d regularly ask my mum this whilst I lay in pain, crying on the floor. Let me just break that down for you. Can you imagine, actually questioning your own mental state? What if I do have a low pain threshold, and all the sympathy family and friends have extended to me is undeserved?
Historically, endometriosis was perceived as a “white women’s disease.” Doctors believed it was less common in Black women, when the reality was actually that Black women’s pain is often ignored by medical professionals. This is evidenced by the high mortality rate of Black women in childbirth, who are five times more likely to die. Doctors often misdiagnosed endometriosis as fibroids, or even sexual health diseases such as PID, as they believed Black women to be more “sexually promiscuous” than white women. I only discovered that this year and, when I look back on my experiences with doctors, I can’t help but feel angry and let down when I understand the reasons for their questions, challenges and pushback on my attempts to get help.
Despite my epiphany moment in 2014, it took another two years for my diagnosis, and sadly that’s only because I was able to go private. My diagnosis came after I started working for a FTSE100 company in 2015, which offered staff access to private healthcare once you’d been at the company more than six months. Never had passing a probation period been so important, and never had six months passed more slowly.
Six months after I started my new job, I called the private healthcare line. I got approval to see an endometriosis specialist. I was shaking as I walked into the offices. By this stage I had developed an unhealthy relationship with medical professionals. Going to see them is somewhat triggering for me – I’m talking tears, shaking, anxiety. As I sat down, I told him about my periods and he asked me questions: what type of pain, what about your bowel movements during your period, how long? When I finished, he leant back and said, “well, it sounds like you definitely have endometriosis.” He scheduled me for an investigatory laparoscopy the following week.
I’d like to say the rest is history but, when my endometriosis returned, I had to do the same song and dance before going private. The length of time it took to get help comes with its own physical health repercussions. It’s difficult not to be angry about my experiences.
Black women shouldn’t have to fight to have our pain heard or believed. I hope that, as we continue to share our stories, more attention is paid, and work is undertaken to ensure no others have to go through what I have so far.
You can find Fiona on Instagram
Throughout October, Hysterical Women readers can get 15% off Modibodi’s collection using the discount code HystericalWomen. This excludes sale items and bundles.
Modibodi’s sponsorship of #BlackWomensHealthMatters has paid the contributor fees of three of our five guest bloggers this month, while donations from Hysterical Women readers helped to fund an additional two paid guest posts.