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Daisy Ridley, Susie Ferguson and Lena Dunham have all been diagnosed with endometriosis.
Daisy Ridley, Susie Ferguson and Lena Dunham have all been diagnosed with endometriosis.

SocietyNovember 18, 2017

Living with endometriosis is way more common than you think

Daisy Ridley, Susie Ferguson and Lena Dunham have all been diagnosed with endometriosis.
Daisy Ridley, Susie Ferguson and Lena Dunham have all been diagnosed with endometriosis.

Earlier this month, RNZ Morning Report co-host Susie Ferguson announced she was taking medical leave due to her years-long battle with endometriosis. Rose Hoare explains how despite one in 10 women suffering from the painful condition, many women end up going through life unaware and undiagnosed.

Susie Ferguson has endometriosis and she’s having a hysterectomy for it. With this announcement, she joins an elite squadron of cool women who have the sucky pelvic condition, along with Lena Dunham, Daisy Ridley, my friend Libby, and yours truly.

Endometriosis, as I understand it, is a condition where some of your period blood goes back up your tubes. This actually happens to most women, but for endo sufferers the blood (it’s actually uterine lining tissue) then sort of rusts onto the organs nearby, getting as hard as a marble and fusing things together, which means when your uterus cramps, it’s torture.

More women need to know about endometriosis as it’s remarkably common. An estimated one in 10 women have it (so, if you work in a medium-sized office, probably several women in your office have it, whether they know it or not), and often it goes undiagnosed.

Typically, it takes 10 years of being gaslighted by a doctor or succession of doctors — being told it’s just period pain and to suck it up, or being told it’s maybe Crohn’s disease or Irritable Bowel Syndrome or appendicitis or chlamydia — before they figure out its endometriosis.

Susie Ferguson was diagnosed with endometriosis in her 20s (Photo: Rebecca Zephyr Thomas)

There are good and bad reasons for this delay. Let’s start with the good ones. You might think a medical issue with so many sufferers would be better diagnosed, but women with endometriosis can suffer from lots of different symptoms such as bowel pain, back pain, stomach pain, period pain, or pain during sex. The only way to know for sure if you have endometriosis is a laparoscopy — an investigative surgery where they go in through your belly button with a camera. Because it won’t show up in an X-ray, it won’t show up in an ultrasound scan, and it won’t show up in a blood test.

If you have endometriosis, you might actually have no physical pain to clue you in, but suffer from unexplained infertility for years which is painful in other ways. Or you might have recurrent miscarriages since if you have endometriosis you are 76% more likely to miscarry.

So yes, it’s tricky to spot endometriosis. But — and this brings me to the bad reasons — underlying the widespread failure to diagnose endometriosis, which has condemned millions of women to years of pain, is a well-documented and widespread failure to take female pain seriously.

Women are still vastly understudied in lots of medical, drug and pain research. Although women are more sensitive to pain and seem to process pain differently, most pain research is done exclusively on male subjects and women are treated for pain less aggressively than men by healthcare systems that tend to dismiss their complaints (if you think that’s garbage, tell the dead 23-year-old who was on a contraceptive pill known to cause blood clots, but whose GP told her to have a spa day when she complained of pain).

Star Wars actress Daisy Ridley is among those who have spoken publicly about suffering from endometriosis.

Because of these factors, I think of endometriosis as a bit like a sex pest – the primary defence still seems to be women warning each other. When the systems set up to protect you don’t really work, it comes down to an informal network of women passing on warnings, support and information.

If you have really painful periods, pain so bad it scares you and you start making plans to get to a hospital if it gets worse, or if you have a “horrible pinching feeling” during periods, you might have endometriosis. If you’ve had recurrent miscarriages or unexplained infertility, you might have endometriosis. If anything you’ve read here raises red flags for either yourself or for a friend, do your own research, ask your doctor about it, and try to advocate for yourself.

Ferguson’s pain was so bad she’s compared it to childbirth. She managed the pain (a task she downplays as “a not inconsiderable situation”) while still beasting it at her job by using a standing desk. A fucking standing desk! Fuck that.

While it’s gratifying to have endo pain affirmed in this way, it’s also terrifying because at least with the pain of childbirth, people believe you, and in some cases you can have an epidural. I find it mind-boggling to contemplate the courage Ferguson and other sufferers have marshalled just to get through the day, and infuriating to contemplate all the monumental pain so many women suffer, probably thinking it’s just their lot as women. It’s not.

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