Endo Stories: Endometriosis 101 – a medical perspective

Endometriosis is a condition that affects 1 in 10 people who are assigned female at birth. Despite that, 54% of people don’t know what it is – rising to 74% of men. We want to help change that.

In the run up to Smutathon 2020 on September 26th, we’ll be sharing weekly ‘Endo Stories’, written by other bloggers, authors, and awesome people we found on Twitter. They’ll tell you about their experiences with endometriosis, and about some of the challenges they’ve faced, from diagnosis to treatment, from sexual pleasure (and pain) to fertility and menstruation.

This week, we turn to another of our committee members for the Endo Story. The Other Livvy (she/her) is a doctor and has shared her medical perspective of learning about and diagnosing endometriosis. Find her on Twitter at @theotherlivvy and read her Smutathon stories here. Then please consider donating to Endometriosis UK to help them help people all over the UK who are struggling with endometriosis.

Our Endo Story this week is slightly different. We have shared some really powerful personal stories of living with endometriosis over the last four weeks, and I’d strongly recommend that you go back and read them all. A common theme among our contributors has been how long it takes to get diagnosed with endometriosis. Endometriosis UK states that it takes an average of 7.5 years to reach a diagnosis. Which is a really long time!

And I say that it’s a long time because the way that I was taught about endometriosis made it sound like a pretty obvious diagnosis. The symptoms are classical – severe pain that occurs in time with a menstrual period. Pain that is usually in the pelvis or abdomen, but may occur anywhere. That can add a degree of complexity, but there really aren’t many causes of cyclical pain in AFAB people so it used to surprise me that it is so difficult to diagnose. Where did our medical training go wrong?

I do not have endometriosis myself, but I am a doctor so I can give a medical perspective. I’m actually a respiratory physician so my experience of gynaecology and sexual health is limited, but I have been through medical school and passed all my exams. I have worked in A+E and done placements as a medical student in GP practices. If, as Endometriosis UK claims, 1 in 10 people assigned female at birth are affected by this condition, I should have seen it and it should have been a significant part of my obstetrics and gynaecology (O+G) rotation. So did I learn enough?

Let’s start with the basics. Endometriosis is the name given to the presence of tissue that is similar to the lining of the uterus, but is found in other places around the body. According to my O+G textbook, 1-2% of AFAB people are diagnosed with endometriosis but the lesions may occur in up to 20%, although most are asymptomatic. (I should note that my textbook refers solely to women, not AFAB people, and it is one area where I really hope that O+G education has improved since I took my exams in 2009).

Endometriosis is oestrogen-dependent so improves after the menopause and during pregnancy, which is why people with endometriosis have symptoms that coincide with their menstrual cycle. As the lining of the uterus swells and grows to become ready for a fertilised egg, so do the endometriosis lesions wherever they have become deposited – on ligaments in the pelvis, on the bladder or bowel, or even further away on the lungs or belly button. And when no fertilised egg appears, the hormones that promote this growth fade away and the uterine lining is shed as a menstrual period. But the tissue in the endometriosis lesions has nowhere to go and so accumulates where it formed. Sometimes this creates a collection of altered blood, known as a chocolate cyst as the contents are brown and appear, um, chocolatey. (The naming practice within medicine of describing abnormalities as food is a whole other gross story!)

And all of this causes pain and scarring. The swelling of endometriosis tissue causes inflammation, which leads to pain and scarring; the presence of blood promotes inflammation and (you’ve guessed it) pain and scarring; and these chocolate cysts can be incredibly painful. The scarring itself adds its own problems, creating adhesions around the bowel that can cause painful blockages, and around the ovaries and uterus to create fertility problems. The whole pelvis can become ‘frozen’ and stiff with scar tissue. The inflamed endometriosis tissue itself can also be painful, typically causing pain when having penetrative sex (known as dyspareunia) and pain when opening our bowels. Periods also tend to be more painful too.

Pain. Just lots of pain. That occurs or is significantly worse during a period. Simple, right?

So all in all, the medical school learning seems adequate. My 315 page O+G textbook has 3½ pages that are dedicated to endometriosis, which is about the same amount of space allocated to fibroids and to treatments for the menopause, and is about half that given to multiple pregnancies. Which seems reasonable. Not extensive, but enough to ensure that no-one leaves medical school without a basic understanding of the disease. So why is it so difficult to get a diagnosis?

Interestingly, my textbook did emphasise that symptoms may be absent and that no one yet knows why symptoms correlate so poorly with the extent of the disease – that we can’t tell how severely someone is going to be affected just by looking at the disease itself. And it is described as a ‘common incidental finding’ during abdominal surgery. The surgeons operate, looking for something else and discover endometriosis.

My heart sank. Oh, that’s why.

I graduated from medical school in 2010 and I have become significantly more aware of the extent and power of the patriarchy since then. I now see misogyny everywhere – in the world and definitely within medicine – and I am concerned that it takes so long to diagnose endometriosis because medics don’t believe AFAB people’s experiences of pain without proof, so the only way to prove endometriosis is to have surgery.

And that part is true. The only way to get a definite diagnosis of endometriosis is to actually look at the endometriosis lesions within the abdomen, usually through an operation called a laparoscopy. As operations go, this is not especially invasive, as it uses keyhole techniques to look into the abdomen with cameras, but it is still surgery and it is incredibly complex. It still requires a general anaesthetic and still carries significant risks. During this surgery, the endometriosis lesions can be removed – burned or cut away – but if done badly this risks causing more scarring, more adhesions, and more problems. It can become a vicious cycle – more lesions create more scars requiring more surgery, which creates more scars and promotes more lesions.

But surgery isn’t the only way to treat endometriosis. There’s an argument that it isn’t even the best way for most people. Hormonal treatments can be incredibly effective in preventing the endometriosis lesions from becoming swollen and blood-filled in the first place, and these treatments are very common and cheap. It’s just hormonal contraception! Any hormonal contraception – the pill, the hormone coil, the injection, anything! Which, clearly, aren’t without their own problems, but for most patients these side-effects are likely to prove more acceptable than the symptoms caused by endometriosis. My same textbook even suggests that a ‘therapeutic “trial” of a hormonal drug…is appropriate without a definitive diagnosis.’

We certainly don’t know absolutely everything about endometriosis, but in medicine that’s not unusual. There are lots and lots of conditions that we treat without ever having a clear and definitive diagnosis, working on our best opinions, but somehow, endo isn’t one of them. Even now, GPs need surgical results to confirm the diagnosis and add it to your record. Without surgery, it’s not endometriosis. Apparently.

And I blame misogyny. I do. Because I have seen it.

There are times in my career where I know I have been complicit in that same dismissal of a woman’s pain. Times that I wish I could go back and have again. Because while I love my job, medicine as a practice is vulnerable to the same prejudices, biases, and structural inequalities as any other field. In some cases, those flaws are exacerbated by the extent to which our medical training occurs on the job, apprentice style. No amount of book learning can quite prepare you for the varied and unique ways actual real people develop diseases and we have to rely on the experiences of our senior colleagues to guide us. Mostly, this is a wonderful way to learn, but when their opinions are wrong or outdated, it can take too long to invoke change.

I have a strong memory of being the surgical F1 on call, less than 6 months out of medical school, and going with my (arrogant, male) registrar to see a young woman with abdominal pain. Her pain had been so bad that she’d been admitted with suspected appendicitis but her CT scan was normal so my boss wanted to send her home. Looking back with the hindsight of 10 years’ experience, this should have been where I started questioning him – appendicitis, like endometriosis, is a clinical diagnosis and can only be ruled out definitively through surgery. If she was still in pain, and she was, she was not fit for discharge. But I was too junior and too run off my feet to have the capacity for those nuances and I had to trust my senior. These aren’t excuses, but they are facts.

Instead, I have a really strong memory of him telling her that her pain was Mittelschmerz – mid-cycle pain associated with ovulation. I remember him literally schooling her on the menstrual cycle and telling her that her (ongoing and severe) pain was nothing to worry about. I remember her arguing back and telling him that she knew her body and this wasn’t right, and I remember him telling her that she was wrong. And I stood there, listening and ‘learning,’ and saying nothing. I remember it so clearly because I felt uncomfortable at the time and I now deeply regret not advocating harder for the woman. Not calling out my boss’s misogyny when he talked about how women cope badly with pain and not having the confidence to question his diagnosis. I don’t know if it was endometriosis, I certainly didn’t think of it at the time, but I’m pretty damn certain it wasn’t Mittelschmerz.

And this is just one example of how we, as doctors, don’t think of endometriosis at those times when sufferers present acutely to a doctor. Whether we don’t believe them or whether we simply don’t ask enough questions to understand what’s happening to them – oh no, ‘women’s’ problems – the end result is that because we’re conditioned only to latch onto things we can see and clearly diagnose, we don’t think of endometriosis. It’s too abstract, and because all surgery is inherently risky, the bar for recommending something that might actually reveal the presence of endo is really high. I’ve sent a lot of women with abdominal pain home from A+E with laxatives for constipation. Could some of them have had endometriosis? Perhaps, but they weren’t dying and they weren’t sick enough to be admitted so we found a reason for their pain and sent them home, advising them to see their GP. A+E is for an accident or an emergency, I would tell myself, and if they could manage their pain, it was neither.

Talking to my GP friends, they tell me that they do offer a trial of treatment for people presenting with symptoms of endometriosis but wouldn’t arrange the surgery needed to confirm the diagnosis if the symptoms then improved. Why risk surgery if they feel better?

Well, because then the AFAB people who have been suffering so much would know why. I’m not advocating for surgery every time, but why can’t we offer a diagnosis based on symptoms? It would give their suffering a name so that when these people do develop severe abdominal pain and are unable to cope and have to go to A+E, they can tell the overworked doctor who is desperately triaging and looking for an easy answer that they have endometriosis and their pain will be taken more seriously. I know it will, because I have seen that too.

Medicine is misogynistic and it is a patriarchal institution. Doctors do dismiss women and do underestimate their pain. The struggle for diagnosis for endometriosis is proof of that.

And that’s why it’s important to me to support Endometriosis UK and why I am so keen to increase our public understanding of this incurable but ultimately treatable disease. It is possible to reduce the burden of endometriosis and it is possible to avoid the suffering that has become typical of our endo stories, but we have to stop thinking of ‘women’s problems’ as taboo and unspeakable.

We have to listen and learn from AFAB people and from these stories, and not from the old misogynist system. Once again, it’s time to smash the patriarchy!