Myth #1: teenagers don't get endometriosis

Posted by kaberett

[Content notes: graphic medical descriptions, discussion of surgery, medical disregard for health]

Everyone gets period pain, right? ... right?

No? Really? Damn. You see, everyone around me - family, friends, doctors - spent six years assuring me that pain so bad I couldn't stand; that mefenamic acid and co-codamol together didn't control; that I couldn't think in complete sentences through -- was normal. Normal: it was just most people dealt with it better than me. What kind of wuss am I?

As it turns out, if you're in that much pain it is not okay. Regardless of the reason - regardless if you've got a low pain threshold - being in pain is rubbish, and the compassionate and helpful response is never encouragement to toughen up.

Me? I'm one of the lucky ones. I have secondary dysmenorrhea: my pain has an identifiable organic cause, so I get a diagnosis and an attempt at treatment. Hurrah!

... oh. Wait. The other thing. I have endometriosis: it's a chronic condition in which material resembling the womb lining exists outside the womb, typically in the abdominal cavity, rarely in the lungs, and - in a vanishingly tiny number of cases - the central nervous system and brain. This material builds up and breaks down in response to the body's hormonal cycle; it grows into organs, gluing them together; the net result, for most sufferers, is chronic pain and fatigue. If you're really unlucky, it'll eat into your sciatic and genitofemoral nerves - causing shooting pains in the thighs and labia.

Somewhere between 45 and 70% of people presenting with chronic pelvic pain have endometriosis.[1] Estimates of prevalence range from 2 to 22% of people with uteruses of reproductive age; I most commonly see estimates of 10-15%. These estimates are necessarily uncertain, because the only way to diagnose endometriosis is via laparoscopic (keyhole) surgery.

The average diagnostic delay in the UK is eight years.

I'll say that again: for an illness causing chronic pain and fatigue, affecting a significant fraction of the female-assigned-at-birth population,  the average time to diagnosis in the UK, from when symptoms first appear, is eight years.[2]

Europe-wide, "there is often a delay of up to 12 years".

Here's some of the "why": sufferers think, or are told, that their symptoms are normal. (See above.) Hormonal drugs provide temporary relief. Inadequate diagnostic measures are applied: you do not want to know how many useless transvaginal ultrasounds I had before I finally got referred to someone who could do something useful.

I'm decidedly middle-class; I've had extensive scientific training; I'm a powerful self-advocate; I'm covered by my parents' medical insurance, which I ended up using. I'm lucky.

And even with that - even with all that - it took six years for me to be diagnosed. Take a moment to think about what that means for the average.

More than once along the way, medical professionals told me that teenagers don't get endometriosis.

The Women's Surgery Group guidelines on endometriosis include:

Diagnostic and operative laparoscopy should be considered in those women with pelvic pain which has not responded after 3 months of nonsteroidal antiinflammatory drugs (NSAIDs), and/or 3 months of oral contraceptives.

I was on NSAIDs for six years. I spent 18 months on hormonal birth control that was causing severe depression. ("No," said the GP, "that's a rare side effect. It won't be the medication." Depression and anxiety will affect up to 10% of users of any form of HBC: it's a crapshoot finding one that won't do it to you. Me? I had a history of progesterone-sensitive depression, at the point the GP said that.)

Six years is conspicuously longer than six months.

Over and over, when talking to people with endometriosis, I hear that they've been symptomatic since they were fifteen, fourteen, thirteen. I was symptomatic from my very first period. But everyone gets period pain, they say, and that is how we convince ourselves that this is nothing out of the ordinary, nothing bad, that we should just man up. And we tell ourselves this while we are gasping for air on our sides on the floor, because breathing hurts.

When surgery was performed on me at the age of 18, I was classed as stage IV (severe) endometriosis. Even after they'd excised as much as they could, I am classed as stage IV - because the disease has glued my bowel and my uterus together, and the only way to disentangle them is to remove a segment of my gut, in a major procedure requiring a three-month recovery period and potentially a temporary colostomy. If I tell you that I have a family history of serious bowel scarring, and that the new endometriosis adhesions formed in the sites of my surgery incisions following my diagnostic laparoscopy, I hope you'll understand why I'm not keen on that option.

You do the maths: with an average diagnostic delay of 8 years, and an average age at menarche (first period) of 13, is it any surprise that teenagers don't get diagnosed very often?

Teenagers do get endometriosis. If you have chronic pelvic pain - or if you know somebody who does - please know this: it's not normal, and it's not okay. Know that there are places you can turn for help. Know what you're looking for. Know that not all of us have all the symptoms. Know that what feels like constipation might be nodules in the rectovaginal septum, and that's something worth shouting about. Pay attention. Notice. Notice when we don't talk about our pain, when the people who love us and the doctors who should be caring for us try to get us to ignore it, because we're not supposed to talk about periods. Try to notice when you stop trusting yourself: give yourself permission to listen to your body, to not just power-on-through, to complain about it and to demand that something be done.

Please don't ever feel you need to make a self-deprecating joke about chocolate ice-cream again.

In this, at least, you never have to be alone again.

kaberett can be reached at their username at gmail.com and is willing to answer any questions you might have about endometriosis. This post is part of an irregular series in which they talk about info they've picked up over the years.

Additional references
[1] Z Harel. (2006) Dysmenorrhea in adolescents and young adults: etiology and management. Journal of Pediatric & Adolescent Gynecology 19:363:371
[2] K Ballard, K Lowton & J Wright. (2006) What's the delay? A qualitative study of women's experiences of reaching a diagnosis of endometriosis. Fertility & Sterility 86:1296-1301