“It Took Years To Be Heard”: 4 Black Women On Their Struggle To Get An Endometriosis Diagnosis

Sophia Umoh, 31, was diagnosed with endometriosis in her mid-twenties after first presenting with symptoms in her early teens. “It started with painful periods. I think I was about 12 or 13 at the time, and I was bleeding a lot. Coming from an African background, my mum would say, ‘We all go through it, it's normal, ’ so I just accepted that this would be my life, every month going through the pain.

“Things got worse when I was in uni. I was working as a waitress, and I remember being in so much pain during a shift that I dropped to my knees in the middle of the restaurant.” Unbeknownst to Sophia, she was suffering from internal bleeding caused by a ruptured cyst. Her doctor told her that her organs had fused together. “I asked, ‘Is this normal?’ and he was like, ‘Oh it’s something that some women have,’ so I just thought ‘OK. ’” 

Despite being one of the most common gynecological disorders in women of reproductive age, the statistics regarding endometriosis are incredibly bleak. It’s a condition that impacts 1 in 10 women (190 million globally) yet takes, on average, close to a decade to diagnose, and its prevalence in women with infertility is as high as 50%. 

As is the case throughout gynecology healthcare, endometriosis also forces us to confront stark racial disparities, with Black women globally being half as likely to receive a diagnosis than white women.

Over the next two years, Sophia, based in the UK, experienced agonizing pain. She repeatedly went to her GP, who put her on the pill and then the hormonal coil (IUS) to help manage her symptoms. “My body kept rejecting the coil. I had it put in like four times, and my body would just knock it back out of place.” 

After fainting in her workplace car park due to abdominal pain, she went back to the doctor’s. “It was a female GP that I had, and she’s the first person to say to me, ‘Tell me everything from the start.’ After I’d explained what had been happening, she said she thought it might be endometriosis.”

Sophia underwent laparoscopic surgery and was diagnosed with endometriosis in 2021. “I was told that because of how severe it was, my bowel had been badly affected, which could cause complications and mean I’d need a stoma bag.” Despite being classed as needing urgent surgery, it wasn’t until two years later that Sophia had her colostomy. “They caught a piece of my bowel that the endometriosis was badly fused to. They couldn't scrape it off, so they cut it out and then joined my bowels back together, but they ended up coming apart. I was pretty much passing feces internally, which ended up giving me E. coli in my bloodstream.”

She now lives with a stoma, and despite undergoing multiple surgeries, still struggles with pain day-to-day. “This past week, I've been in excruciating pain on and off. My colorectal surgeon had a quick look at a recent MRI scan and explained that they suspect the endometriosis will keep growing back. Hearing that has been really difficult.”

One of the brutal realities of endometriosis is that it can indeed grow back, with one study finding that recurrence rates can range from 6% to 67%. Much of the minutiae regarding endometriosis is still unknown because it’s a condition — like so many other areas of gynecological healthcare — that remains underresearched. “We don’t 100% understand the true pathophysiology around endometriosis, and that's likely because of the lack of research that's gone into it,” says Obstetric and Gynaecology Consultant Dr. Elizabeth Egbase. 

As it relates to the disparity in diagnosis between Black and white women, she highlights structural racism as one of the primary factors. “Certain healthcare systems are set up to prioritize efficiency over equity, so that means going with the first conclusion, or the most likely thing that's going to happen. Not really taking the time to dig deeper, to think that maybe this might be an atypical presentation or maybe this patient may be presenting in a different way.

“Then there are things like the ‘strong Black women’ trope [which means] it's much harder for Black women to get their pain taken seriously. We see that not just in gynecology, but in maternity as well.” 

When Natalie Meagan-Blake, 41, had surgery to remove endometriosis that was wrapped around her bladder and covering her fallopian tubes, her surgeon was surprised at how advanced her condition was due to his perception of her pain tolerance. “He said, ‘You come in, and you tell me that you're in pain, but from what I saw [of your endometriosis], I wouldn't have expected you to even be walking, ’” she explains. 

Years prior, Natalie had been told by a doctor that she couldn’t have endometriosis and that she must have fibroids instead because ‘it’s what Black women get. ’ “I told him that my mum (who is white) has endometriosis, and he was like, ‘I still don’t think you’ve got it. ’”

It took 13 years for her to receive a diagnosis at age 33, and she’s since had a total of five surgeries. Her endometriosis was finally discovered when she decided to visit the doctor, as she was having difficulty getting pregnant. “My partner and I weren’t planning to get pregnant, but for us it was like, if we fall pregnant, we fall pregnant. But it wasn't happening.”

Amidst her journey with endometriosis, she sought fertility treatment through the UK's national health service (NHS) but was told at the last minute that she was no longer eligible. “I received an email saying that basically because my partner and I are not in the same postcode, and because of my BMI, they weren’t able to help me.”

Nadine Lewis, 38, was also unable to conceive naturally as a result of her endometriosis. Following multiple surgeries and having had to wear a stoma for a year, she became pregnant through IVF. “Nothing about that experience was tailored to me as somebody with endometriosis, and that was a mistake,” she says. “In my notes, it mentioned something about my fallopian tubes and there being adhesions on at least one of them.” She subsequently had a miscarriage, which was caused by an ectopic pregnancy. “I feel it could have been avoided if they'd just done more, explained things and talked through what my options could be, but they didn't.” In 2023, she had a baby via surrogacy. 

Nadine has both pelvic and thoracic endometriosis. The latter is a rare form of the condition that occurs when endometriosis tissues grow on or around the lungs. Recalling the incident that led to her thoracic diagnosis, she says: “I tried to get out of bed one morning, and I realized I couldn't move. I tried all sorts of ways, but I just could not move.” A paramedic arrived, and she was taken to hospital, where she was told that there was fluid on her chest. “They had to drain the fluid from my lung, so they made an incision, and they put this very thick, hard tube inside — there was no kind of pain relief, nothing. I was in so much pain, thinking, 'Please, can someone hold my hand?', but they just looked at me. It felt very inhumane. I thought, I'm 25 and I'm really scared — is there anyone with compassion to support me through this?”

Etta Mukasa, 24, understands firsthand how important it is for Black women living with endometriosis to find a like-minded support network. While struggling with fibroids, PCOS, and suspected endometriosis, she created The Melanin Menstrual Health Community in hopes that it would help to improve her mental health. “I think within the Black community, people don't really speak about things to do with periods. In my experience growing up, it wasn't something I spoke about openly. It becomes about optics, and people don't want to be sharing their business, but I think that's such a dangerous slippery slope because time and time again, we're seeing that our health often faces the greatest barriers...”

Her network supports Black women across the spectrum of menstrual health illnesses, but it’s the endometriosis community that has been the most popular. “That shocked me actually, because a lot of the time Black women are associated with fibroids,” she says. “Not everyone in the endometriosis group has been diagnosed. Some women are in there to learn more because they’re not sure if they have it. But it’s definitely our most active group by far.”

For women who suspect they may have endometriosis and want to advocate for themselves as best they can, Dr Egbase recommends using the ICE framework. “What are your ideas, what are your concerns, and what are your expectations? Ultimately, if you have a clear framework like that, it's difficult for a clinician to argue against doing the appropriate investigations needed to help diagnose endometriosis,” she explains. “It’s really hard because we're not asking people to be their own clinicians, but I think part of being able to advocate for yourself is having to do that little bit of extra work.”

She also acknowledges the efforts needed to be made on behalf of the medical field. “There has now become a distrust towards healthcare systems which healthcare professionals need to understand and think about how to tackle. So as much as women can advocate for themselves, we as healthcare professionals need to advocate for Black women so that we can build their trust back.”