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May 20, 2019 | by  | in Features |
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Hiding Hurt

“It felt like spaghetti and meatballs—as if my insides were spaghetti and meatballs, and someone was eating it up.”
Cara Adler was experiencing this level of pain almost constantly throughout last year. She has endometriosis, a condition of the uterus which causes huge amounts of pain, amongst other symptoms. I barely knew what endometriosis was until last year at Cara’s flat (she’s one of my best friends), when she toppled off the couch mid-conversation. She had fainted.

She pulled herself up, friends assisting and offering her water. Someone asked her what had happened. “My period started,” she said, almost blasé.

 

Endometriosis, often nicknamed ‘endo’ by its sufferers, is a condition experienced by millions of people with wombs around the world. It is caused by endometrial cells “seeding […] anywhere in the pelvis,” says Dr Cathy Stephenson, who works at Student Health. Endometrial tissue lines the womb, and is part of what gets shed during a period. These cells can accumulate on the fallopian tubes and the ovaries (where they can interfere with fertility), on the bowel, and on the bladder. During each menstrual cycle, they can cause pain, inflammation, and internal scarring.

Stephenson has treated many patients with endometriosis. She “suspects” that it is underdiagnosed; there are no hard statistics on endo, because the condition is under-studied and cannot be definitively diagnosed without laparoscopic surgery—which in itself can make symptoms worse. The number of wayward cells doesn’t necessarily correlate with the severity of symptoms: Many people with severe endo symptoms will not have huge amounts of endometriosis growth in their pelvis if investigated surgically, while others may have few or no symptoms, but if investigated via a surgical laparoscopy, endometriosis would be found. In fact, many people only receive a diagnosis when trying to conceive, as endometriosis can cause significant issues with fertility.

One of the many difficulties with diagnosing endometriosis is that the uterus is located close to the bowel and bladder. As the organs are close, pelvic pain is not always immediately linked to periods; so when endometrial cells accumulate on the bladder or bowels, the pain can be misattributed to irritable bowel syndrome or bladder problems.

The level of pain endometriosis causes is staggering, though it is not obvious to the average observer. Phoebe Murphy, who also has the condition (although she has not been diagnosed officially with surgery), passes it off as a migraine when she doesn’t feel like explaining her pain and justifying the reality of her condition.

“People know what [a migraine] is,” she told me. “Somehow we’ve managed to be all right about headaches.” She would like endometriosis to have the same level of recognition and acceptance as migraines.

Indigo Niah, who has had endo since they were very young, thought that the level of period pain they were experiencing was normal. They only started to question the level of pain after a conversation with a PE teacher, who told them that it wasn’t normal to be experiencing period pain so intense that they couldn’t stand up.

 

Endo is wildly unpredictable, and treatment even more so. Cara, Phoebe, and Indigo all reference “luck”—Phoebe tells me that she was lucky to be diagnosed within five years of symptom onset (when the average is ten), lucky to have a GP who knew what the condition was, lucky to have a partner who is supportive. Indigo tells me that they were lucky to have a paediatrician who referred them to a gynaecologist quickly, after their pain had been brushed off with over-the-counter prescriptions by GPs. Cara tells me that she was lucky to have health insurance that could pay for a $20,000 surgery via private healthcare earlier this year, instead of an interminable wait on a public list.

When I asked Cara, Indigo, and Phoebe to tell me how they had been diagnosed with endo, I heard three stories of the medical profession’s disbelief. Even though Indigo and Phoebe had doctors who treated them for endo relatively promptly, Indigo and their mother had to go to the GP five times, and were offered pills for period pain, rather than further examination of the causes of pain. Phoebe’s GP put her on birth control to control endometriosis, but didn’t say that she suspected Phoebe had endometriosis; Phoebe only discovered that this treatment was linked to endometriosis when she talked to someone else with endo at a party in high school.

 

Cara’s route to diagnosis, meanwhile, was a horror story: Her period pain got worse throughout 2017, to the point where she was regularly skipping four or five days of work a month. She looked on the internet “and it all said all women get different levels of pain and that was how it was, and I thought that maybe I was just fainting and vomiting from being burned out.” She went to a GP, who laughed at her. He said that it was bad luck, and she should try taking deeper breaths before she stood up.

After this, she thought she “was just making it up,” and continued to live with the pain. Crippling pain meant she “had a heatpack all the time,” and was taking ibuprofen and paracetamol constantly, although “they weren’t doing anything.” Even though friends urged her to go to the doctor, she didn’t want to, after that first horrible experience. “I just generalised, they’re not going to take me seriously, there’s no point.”

She got to the point where she was taking “Ponstan, ibuprofen, and Panadol” for months, even though you’re not supposed to take ibuprofen in combination with other anti-inflammatories. This litany of painkillers is common in any conversation about endometriosis; on “pain days”, Phoebe takes the “maximum dose of paracetamol, maximum dose of ibuprofen, maximum dose of codeine, every four hours” for at least two days, then reduces the dose to see if she still needs it. Indigo now takes a daily medication for treating chronic pain, but they still use codeine several times a week.

Cara was also laughed at in the emergency room, where she had to go several times in 2018 because her period pain was so excruciating. In fact, the doctor told her to “just chill out. It’s not like you have endometriosis.” She went to a doctor at Student Health about once a fortnight for a few months, who put her on various hormonal treatments with “awful side effects”, and didn’t listen to her when she told them they weren’t working; that she was being treated for heavy periods, not the light but painful ones she was experiencing.

When she got a new doctor, she was immediately taken seriously, and referred to a gynaecologist. When she arrived at the gynecologist appointment, Cara started on her passionate tirade—explaining the symptoms, the pain, how it was limiting her ability to go about her daily life. The gynaecologist laughed, and Cara was momentarily choked by dread—but when he said, “You’ve already convinced me [that this is serious]. I believe you,” it felt “amazing”. Six months later, she was able to have laparoscopic surgery, and although recovery has been slow, the pain is reduced for now.

These experiences are hopefully not representative. Dr Stephenson is quick to assure me that “any doctor at Student Health would know how to diagnose and manage [endometriosis]; it doesn’t usually require specialist input.”

 

Even though endometriosis is a negative presence, Indigo, Cara, and Phoebe say it is still part of them, and has its upsides. Phoebe says that endo has taught her to advocate for herself, to make her pain real to other people. “I’m very good at articulating my pain… I can be specific,” she says; this is particularly useful when dealing with medical professionals when she has other health concerns. Endo forces her to pay attention to her body, to monitor her mood, and to know when she’s ovulating—she uses a tracking app to help with this.

 

Indigo says that even though endo can “make things harder,” it’s still “just part of me, it’s not a part that I like, it’s just there.” They talk about endo because endo is a piece of their lives, even if not everyone is used to talking openly about periods and wombs and the intricacies of the reproductive system.

 

ENDOMETRIOSIS

·        Caused by the cells from endometrium (the lining of the uterus) growing outside the womb

·        Can only be definitively diagnosed via laparoscopic or open surgery, as it doesn’t usually show up on ultrasounds or other scans. However, many people live with suspected endometriosis, and can receive treatment without surgery.

·        Not everyone with proven endometriosis will have symptoms, and if people do experience symptoms, these can range from very mild, to very severe and impacting

·        Symptoms can include pain during and before periods, nausea, fainting, painful sex, bowel and bladder symptoms, and infertility. Not all sufferers of endometriosis will have all these symptoms.

·        There is no cure to endometriosis; even after surgery, endo will come back after time. However, symptoms can usually be successfully managed with hormonal treatment (to ‘dampen down’ the endo), pain relief, and surgery (as a last resort).

·        There are no clear causes of endometriosis, although there are tenuous genetic links; much about it is yet to be researched and documented.

Even if you don’t have a womb, or do but have very normal periods, you probably know someone with endometriosis—even if they haven’t told you about it. This may mean that they’ve haven’t been going to social events because of pain, that they have spent far too much time huddled in pain in a doctor’s office, that they know more about painkillers than the average person.

Cara, Phoebe, and Indigo all told me that it would help if there were more education about what endometriosis was, and how to ask about it. “I talk about endo because it’s my life,” Phoebe says, and Indigo and Cara echo this. Through endo, and specifically conversations about endo, they have found other sufferers, and received support and understanding.

 

The moments when they are listened to and supported make endo bearable. Explaining can get exhausting, Phoebe says. “If I’m experiencing a lot of pain I feel quite emotional [explaining endo]—that because I am in pain, I feel, like vulnerable, quite tired and fatigued.” But if more people know about her endo, then they will usually be supportive.

“I wish more people would start the conversation,” Indigo enunciates quietly. “I would love to be asked more questions about how weird my body is.”

 

Endometriosis is a reminder of the many peculiarities that nest within the human body. We pass people every day, and do not know what is within them. Cara, Indigo, and Phoebe want to be asked about their condition, to talk about this piece of their identity. Their stories are a reminder that words can open skin, and reveal the pain and hope inside.

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