Endometriosis is almost as difficult to pronounce as it is to diagnose. Almost. The first time my mouth struggled its way around those six syllables, I was huddled around a computer screen in a poky doctor’s office in California, parroting what this rather kooky ob/gyn had just told me. I won’t pretend to remember her precise words because, like all bad news, it came to me in slow motion. She said something along the lines of, “You have a haemorrhagic cyst, a chocolate cyst and often they are a sister ailment to en-do-me-tri-o-sis.” I remember the chocolate bit because it conjured up an image of a Cadbury Creme Egg and from then on I couldn’t stop thinking about the absurdity of an Easter treat being stuck inside me, conspiring with its villainous relative.
Obviously, I immediately wanted to know how you could cure this ugly-sounding disease – and the answer is, nudge, nudge, get this… they don’t know. Experts do know endometriosis is a condition in which tissue similar to the lining of the womb (the endometrium) grows in places it shouldn’t. They know that these cells can cause inflammation, pain and the formation of scar tissue, which sticks organs together. And they know one in 10 people with a womb, of child-bearing age, play host to the unwelcome disease – although it can affect those going through the menopause too. (Did I mention it can be agony? Like “end of Braveheart, laying on the rack waiting to be hung, drawn and quartered” bad?)
There are treatments that can help with symptoms, including surgery in which cells are lasered off; hormone therapies, such as the contraceptive pill, that stifle it; and in extreme cases hysterectomies are recommended. But, largely, the condition is shrouded in mystery and misinformation, and frequently mishandled by doctors. There’s no cure. Often sufferers end up going back for surgery after surgery. Shockingly, there are stories of some doctors suggesting that women have a baby to suppress their symptoms. This, in addition to being logistically challenging, and not even a proven solution, is especially cruel when coupled with the fact that between 30 to 50 per cent of people with endometriosis experience infertility.
“I’m really hoping there will be a way of diagnosing it earlier and I’m really hoping there will be things that can be done to limit the disease’s progression,” says Colin Davis, one of the UK’s top gynaecological surgeons. He’s one of a number of experts and sufferers I’ve been chatting to over the past few weeks, trying to piece together why endometriosis remains such a mystery.
In the murk and muddle of possessing a uterus (this thing we’re told is presided over by the moon), I have always found the ability to scale menstrual pain seemingly impossible. Historically, for me at least, this is because periods occurred in absolute isolation. It was rude to mention why you’d rather spend your evening writhing around a hot bath than come to the pub. If I did feel bold enough to question whether my pals also took their meetings lying down, they would say, “Yeah, of course. Don’t be a pussy” (or something to that effect).
The first time I complained about anything menstrual to a doctor I was in my late twenties and living in New York City. I’d been trying to catch a flight out of LAX and almost missed it thanks to a period that was so heavy I was unable to leave a bathroom stall. I spelled this out to a random gynaecologist I was recommended by a friend (am I the only person who doesn’t actually have a regular doctor?), hoping for some reassuring words. Instead, I remember her asking me, in the kind of condescending tone I would usually prefer to dish out, “Do you know what a period is?” I didn’t mention the incident to another doctor for years. That’s despite the fact, around this time, I was also having my kidneys scanned to see if they could be the cause of a dull lower-back pain that was so dogged it made me want to spend most of my waking hours in bed. If someone had strung these details together, I might have been diagnosed with endometriosis earlier, and that way I could’ve learnt the name of the rather grand-sounding “pouch of Douglas” sooner – an area of the female anatomy, located behind the uterus, where the bulk of my endometriosis was lurking (thus the back ache). I find it endlessly amusing to say “the pouch of Douglas” out loud, conjuring up, as it does in my mind, an image of some random historical figure absent-mindedly dropping his coin purse into my torso.
This kind of experience is unfortunately not an anomaly. It can take an average of eight years to diagnose endometriosis. Those who have it often find themselves dismissed, misdiagnosed and left floundering before getting on waiting lists for a laparoscopy: a type of keyhole surgery used to seek out pesky endometrial cells, which is currently the only way to know for sure if someone has the condition.
This is partly because of a knowledge gap when it comes to uterus health. You might, for example, be interested to know about a study from 2016 that found there was five times more research into erectile dysfunction, which affects approximately 19 per cent of men, than into premenstrual syndrome, which affects 90 per cent of women. Or that, despite as many women and those assigned female at birth having endometriosis as diabetes in the UK, up until this spring there had been no treatments, beyond hormones and surgery, developed for 40 years. In that time the internet has been invented and Cher has released 21 albums.
It’s also because women’s pain is often “dismissed by the mainstream medical establishment”, says Leah Hazard, author of Womb: The Inside Story Of Where We All Began, a leading voice on uterus health and a working midwife. “When women complain about symptoms you can have with endometriosis, quite often they’re just told to get on with it, or that’s just ‘part of being a woman’, or it’s dismissed as psychosomatic,” she says, exasperation flashing across her face. “Like, ‘Oh, you’re just anxious. You’re depressed. You have a low pain threshold.’”
Are you still with me? Are you angry? Can you feel the cold thwack of medical gender disparity clocking you right in the face? Sometimes I am astonished to think that as a child I watched as they grew a human ear on the back of a mouse, and yet it is now 2023 and this thing so many of us are suffering from has been allowed to remain a mystery. Or that, while my friends and I have matured in lockstep, with menstruation going from being a somewhat taboo topic to something discussed with abandon, the same cannot be said for everyone working in healthcare. Hazard tells me about one recent endometriosis study, the Rose trial, where a doctor, Christine Metz, wanted to see if she could create a test that would use period blood samples to diagnose endometriosis without invasive surgery. When she reached out to physicians about her research, the response was initially one of: Why would you want to look at menstrual tissue? Why would people even agree to collect that tissue? Or as Hazard puts it: “The response was just ‘yuck’.” The experiment found that not only were women accepting of the trial methodology, they were practically falling over themselves to fling their Mooncups in the right direction if it would help.
The “yuck” attitude towards women’s health lingers with me as I chat to Michelle, 47, who remains relentlessly positive despite experiencing decades of mistakes when it comes to the handling of her endometriosis. The banker from Cardiff spent her teenage years in so much pain that she was unable to get out of bed, but doctors brushed her symptoms off as constipation and IBS. It turned out to be endometriosis – the worst case her doctor had ever seen – which she discovered after collapsing, in pain, at work in her twenties and being rushed to A&E. “At the time I felt positive, like, ‘Oh, my gosh, so it wasn’t all in my head,’” she says. But it ended up the start of a frustrating journey. Despite treatment, she has remained in acute, chronic pain for most of her life and believes her career has been impacted by countless days taken off to deal with it. Meanwhile, misinformation from doctors meant she missed her shortened fertility window. “Freezing my eggs was never mentioned,” she says. “I remember, in my twenties, having a conversation with one surgeon and they were like, ‘No, it’s not necessary. You’re still young.’ It makes me angry, but I can’t let it define me.”
Still experiencing her systems while going through early menopause, she would now like a hysterectomy to help alleviate her excruciating symptoms. “They have basically point-blank refused to give me the hysterectomy because I have frozen pelvis [in which endometriosis tethers organs together] and they don’t know what they’re going to find when they go in there.” In order for surgery to happen Michelle would need separate specialists in bowels, bladder, kidneys and possibly liver present and simultaneously ready to unstick her organs from their tangle like a medical Marvel team.
Faolan, a 20-something from Belfast, understands the frustration that comes with feeling like doctors aren’t listening to you. Currently taking hormones for gender affirmation, he describes himself as having to be his own guinea pig when it comes to undergoing endometriosis treatment because, while there’s very little research into endometriosis in cisgendered women, there’s even less about trans men. “It severely limits the treatment options,” he says. The impact of that disparity is only heightened by the way he’s been treated by medical professionals. Pushing for a hysterectomy, as his symptoms are so severe, he’s been told: “You want this for gender reasons. You probably don’t have endometriosis.” His darkest moment came in hospital during a “huge flare-up”, when one doctor told him, “Even if your endometriosis did get [severe], I wouldn’t do anything about it.” He says, “It made me feel very upset. I just didn’t want to deal with doctors ever again.”
Nowadays stirrups and wands, and other Disney-sounding things, are part of my regular check-ups, but when I think back on my endometriosis journey it did take a number of years to get to where I am now. I feel silly for not being able to give you a concise and clear timeline of how I discovered my disease, but this is because, like most people, I was often too busy to take my symptoms seriously enough, didn’t know what “normal” was and hadn’t even heard of endometriosis until Lena Dunham wrote about it for Vogue. Flashes of past incidents do sometimes come into focus: feeling extraordinarily tired a lot of the time; experiencing such pain around my period I’d have to grip a desk on the set I was filming on to stay standing while presenting; the dull throb in my right side that eventually led to someone mentioning the word “cyst” for the first time. It probably took five years between the airport toilet episode and a final endometriosis diagnosis, which really came about because I was, in eventual dramatic fashion, convinced I had ovarian cancer and finally went to that kooky doctor in LA to let her know.
I consider myself incredibly fortunate to have been able to see Colin Davis for my treatment, which I paid for privately. I rushed to see him after a scan with that LA doctor confirmed I had a cyst that might be about to burst. In the process of removing it, Davis was able to confirm and remove the areas of endometriosis too. My memories of the operation are limited to drifting in and out of consciousness to the movie Love Story, and drinking a tiny aeroplane orange juice while waiting for my sister to arrive and put my knickers on for me, guiding me home. Happily, since that surgery four years ago I have had no recurrent flare-ups. I don’t say this to brag but rather to offer an example of how surgery can resolve the matter if it is discovered and treated early enough – something that every sufferer of endometriosis deserves.
In order to get there, though, a lot needs to change. NHS gynaecology waiting lists have gone up 60 per cent since 2020, leaving many endometriosis sufferers waiting two years for laparoscopies. Davis adds that an additional problem is not having an easy diagnostic test, such as “a blood test that would say, ‘The chance of you having endometriosis is 80 or 90 per cent and therefore it’s worthy of further treatment.’ You would make such a big difference to society and you’d also make a big difference to fertility, because if you treated it earlier women might not need to go down the IVF route or the fertility route, and it would save society so much time, money and effort.”
For Hazard, the transformation needed is bigger. She’d like to see more women encouraged to go into medical research roles to reverse the male gaze in healthcare development, more government funding put towards treating conditions such as endometriosis and better education in schools about what normal periods should be like. “Things are already getting better,” she stresses. “It’s just we’re reversing thousands of years of a patriarchal medical institution. It’s like changing the direction of a cruise liner.”
She’s right, positive change is happening. Probably the biggest development in endometriosis care in recent years was revealed this spring by Lucy Whitaker. She’s a gynaecologist and medical researcher working at the University of Edinburgh on a groundbreaking treatment: the first new option beyond surgery and hormone therapy since the 1980s, and one that could be a game-changer for people such as Faolan, who can’t use or don’t react to current treatments – especially since Whitaker plans to make sure trials of it include people of all genders. Chatting from her cosy living room in Scotland, she says: “It’s promising. And [as a gynaecologist] it’s really exciting to be involved in things that might potentially help my patients.”
Whitaker’s passion for progress is echoed by Davis and Hazard, and even Michelle and Faolan, who are both now volunteering for patient support organisations, helping other people with the condition fight for better treatment. I understand their need to push for change, though I admit I was reluctant to write this article at first. Sharing personal information, especially of a medical nature, can be scary and uncomfortable, but the more I’ve learnt about endometriosis, the more I’m certain it’s a disease that has been woefully overlooked because it only affects those of us with wombs.
Endometriosis is almost as difficult to pronounce as it is to diagnose, but if we can raise awareness of it we might be able to raise the funds that could expedite a path to an easier diagnosis and more treatment options.
Hazard feels certain that’s possible. “It’s going to happen very slowly,” she says. “And maybe not in our generation, but I believe things will accelerate in the way that they should.”
