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  • Sat, 13, Oct, 2018 - 5:00:AM

What it's like to have endometriosis

Uterus street art / Urban Isthmus / Flickr.

Imagine cramps so bad that you can’t get out of bed. Every month. Followed by people dismissing the problem as ‘period pain’ that should be endured without complaint. That’s what life is like for people with endometriosis.

Endometriosis is a chronic disorder in which the lining of the uterus grows where it shouldn’t be. One in every ten people with vaginas suffer from it. Despite its prevalence, treatment options are limited. Surgery might make it better, but can have no effect. A lot of the time, endo goes undiagnosed because it’s dismissed as ‘period pain’.

I spoke to Phoebe Murphy, who has suffered from endometriosis for about eight years, about her experiences in New Zealand’s health system.

What were you experiencing before you realised you had endo?

In intermediate [school], a few months after getting my period, I felt the worst pain I’d ever felt. It’s like someone is stabbing you with a knife up through your vagina and grabbing and twisting your intestines. Everyone talks about period cramps like they’re common and normal, so that’s what I thought it was.

That pain happened every month when I menstruated. I spent hours crying and lying on the bathroom floor wishing I was unconscious. The pain hurt so much that I thought fainting would be better than experiencing it. I wanted to do anything to make it stop.

Every month, I was missing school and distressed at home. I was angry that no one knew how to make it stop. Mum would take me to doctors and they prescribed painkillers. But no one told me that this level of pain is not normal.

How did you find out you had endo? How long did it take?

This wasn’t until I was 17, so about four years after it started. A friend at a party mentioned endometriosis to me, which was the first time I’d heard that word. No doctor had mentioned it. From talking to her, it sounded exactly like what I was feeling. Then I googled it and I had all of the symptoms.

Did figuring that out that mean you could get treatment?

I went to my GP and told her that I suspected I had endo. Her reaction was “Yeah, I know. That’s why you’re on the birth control pill.” She had prescribed the pill about six months earlier. I thought it was so I could skip periods and avoid the pain. I was not pleased that she had diagnosed me without telling me or giving me any options for further treatment. But she was the only doctor in the practice that had any idea about endo.

I asked about my options for treatment. In the public health system, they only take one third of referrals and the waiting time is nine months. My case wasn’t ‘severe enough’ to make that likely.

So I paid to see a private gynaecologist. Essentially, I paid him $300 to tell me to stay on the pill. I had further appointments but after an ultrasound, they couldn’t do much beyond the painkillers and contraceptive pill.

I used my course related costs to pay. People use their course related costs to get drunk; I used mine to get the medical attention I needed.

How does endo affect you day-to-day?

My endo is miles better today. I’m lucky, but I don’t know what made it better or what could make it worse again.

Sex is always painful, every single time. No one really cares about that because I can choose not to have sex. When you’re dealing with someone who is in pain all the time and someone else who is in pain having sex, there’s clearly a case that they’re going to prioritise. I’m 21, I want to have sex with my boyfriend, but there’s not a lot I can do to stop that pain.

Sometimes, it flares up afterwards. Every time I want to have sex I have to balance out the effects on my entire day. Do I have something I need to do later? The pain continues for three or four hours or I get so bloated that my clothes don’t fit. I get really angry at it sometimes.

Does it affect your relationships with other people?

It’s a good way to weed out guys who are dicks. If I’ve got my period, I’ll be in pain and on pain medication. At parties, people will ask me why I’m not drinking. I don’t want to offload, but the conversation gets to a point where I explain that endometriosis is the reason I’m on pain meds. As soon as I say ‘the lining of the uterus’, they run.

What has been the best support?

For me, the support from all my friends and my family and my boyfriend has been amazing. The biggest support should have been my medical practitioner but that’s a lost hope. Being believed by friends and family was the best thing. My friends are not doctors and they can’t help me. But just “that sucks” when I talk about my endo is so validating.

Have you encountered negative reactions or misconceptions about endo?

A teacher who I’d told about my endo said it was ridiculous when I missed a rehearsal. I was in so much pain that I couldn’t get out of bed. She called me out the next day, despite knowing what was happening. I assume that there are other people who haven’t believed me, but thankfully it’s never been to my face.

Last month a random travel doctor, without access to my medical history, started to tell me that I shouldn’t be taking codeine. She wouldn’t drop it. I confronted her and ended up crying.

Doctors who know nothing about my history think that they can refute my treatment plan, which is overseen by a gastroenterologist, a gynaecologist, and a functional medical practitioner. It’s a weird arrogance that comes from a good place. I know doctors want to help people. But in any unfamiliar medical setting, my guard is up.

Why don’t we hear more about endo?

Women’s pain is not taken seriously. When you start looking into endo, there are so many stories like “I sat in the ER for six hours without pain medication because they thought I was overreacting, but it turns out my cyst burst.”

Endometriosis exists in a plane similar to mental health, in that I can’t show you how I feel. It’s difficult to describe and when you do, people minimise it.

Is awareness growing?

Awareness is definitely growing. They’re putting out brochures in schools. Australia recognised endo with a National Action Plan, which is a big win because it allocates funding.

But it’s unfortunate that awareness has to be pushed by people who have endo rather than the medical community or legislators. Putting the onus of awareness on people who are chronically ill is unfair.

Do you think there is a systemic problem with getting diagnosis and treatment?

I spent $1000 in one year of trying to get treatment. Without that money, your options are so limited. I had to advocate for myself, and thankfully I had full support behind me. I don’t know what I would have done otherwise. I was 16, in pain, fatigued, and endo creates a brain fog where you can’t think properly.

At every appointment I had to say: “This is wrong with me. Listen to me.” But how can you be diagnosed when your GP doesn’t know that endo exists? I know so many people with endo, they’re everywhere. It makes me sad that there are others who think they’re weak or making it up.

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