'Endometriosis Has Ruled My Life for 24 Years'

Endo is not simply period pain. Endometriosis is a sinister, unseen disease. I’ve had bemused paramedics standing over me, wondering why I can’t handle ‘period pain’.

According to Endometriosis Australia, endo is a disease in which tissue that is similar to the lining of the womb grows outside it in other parts of the body. My endo is at stage 4 – meaning it’s spread inside me. It’s been wreaking havoc on my body for 24 years.

I’m not alone. More than 830,000 Australians suffer from endometriosis at some point.

Symptoms usually include pelvic pain that puts life on hold around or during a woman’s period. It can damage fertility. Whilst endometriosis most often affects the reproductive organs it is frequently found in the bowel and bladder and has been found in muscle, joints, the lungs and the brain.

Endometriosis has ruled my life.

Nama has battled this insidious disease for most of her adult life. | Image source: Nama Winston/Instagram

Hot water bottles and ice cream do not help

Endo is not simply period pain that you see in Hollywood movies, that is managed by eating ice cream and curling up with a hot water bottle.

Endo can control your life.

For me, nausea and pain can start a week before my period, and then once it hits – bam! – the first three days at least are managed with the strongest pain killers, and involve lots of rocking in a foetal position as comfort.

In those moments, when endo is the angriest, you could not pay me to go anywhere. Which, of course, is terribly inconvenient; especially for a working sole parent like I am.

But anyone who has endo knows it’s two to three days a month of cancelling plans, calling in sick to work, not being able to function.

And people thinking you’re weak. Just pop a Nurofen, they say. If only that would help.

My endo took hold when I was about 18 or 19 – after having the heaviest, painful periods since they began when I was 10.

I had a laparoscopy to remove the endo bits on my womb, and then I was managed with the contraceptive pill. It wasn’t until a couple of years later that my new GP told me: “Women don’t actually need periods unless they’re trying to conceive”, and advised I skip my sugar pills.

Endometriosis and pregnancy: Nama was able to conceive her son, who now knows more about endo than most. | Image source: Nama Winston/Instagram

Endometriosis and Pregnancy: Three rounds of IVF

I got two glorious years of that until I began trying for a baby. It took a year for my cycle to remember what it should be doing, and then another year of trying to conceive naturally.

It was stressful, disappointing, painful and frustrating.

At the time, I knew a woman who didn’t even feel her period when it starts. She’d also conceived five children easily. Oh, to have her reproductive organs!

I had to miss another friend’s baby shower one day, and she accused me of being jealous that she was pregnant and I wasn’t. No, sweetie – the gates of Hell had opened in my underwear. People just didn’t get it.

Eventually, my husband and I began IVF. It was assumed at the time that the reason we were having trouble was because of me – that my body was letting us down. I was failing as a woman. My endo had always caused trouble for me, and now it wouldn’t let me do what should be the simplest, most natural of things; have a baby.

(Years later I learned that it wasn’t – but that’s a story for another time.)

After three rounds of IVF, hating my endo curse, I finally fell pregnant and got the child of my dreams. (Although he’s 13 now, I barely see him, so I’m assuming he’s still the child of my dreams but who knows?)

Winston didn’t get the siblings we were planning for, because I got divorced instead.

A decade later, I still grapple with the trauma of going through so much emotionally and physically to conceive, feeling guilty about my body, and then not being able to use our frozen embryos after our divorce.

It’s something I wrote about in an infertility, miscarriage and stillbirth book called Miles Apart.

Nama’s experience on endometriosis and pregnancy led her to contribute to a book on infertility. | Image source: Nama Winston/Instagram

Back with a vengeance

The good news is, my endo settled after I had Winston. Things didn’t seem as painful – or was it that I was too distracted being a new mum?

I soon returned to skipping my sugar pills, and did that until my endo, angry at being ignored, came back with vengeance with breakthrough bleeding.

The pill was stopped, and I just went back to dying on the inside every month, swallowing packets of Nurofen just to get through a work day.

Yeah, that was always going to end badly.

One day at work, I collapsed with the worst pelvic pain of my life. I honestly thought I was dying – I had no idea what was happening.

It turned out that my endo had progressed to stage 4 – it was all over my bowel, and my gyno and I discussed a hysterectomy.

I was devastated.

But the doctor also prescribed a pill to try. It was my last step before needing a hysterectomy, and/or a colostomy bag.

The pill worked. My endo was put on pause.

That was two years ago, and so far, so good. No more monthly agony. No more lying on the bathroom floor, Winston getting a vomit bowl for me, fetching my strong painkillers, or calling 000 because he wasn’t sure if it was something else and he was little, and afraid.

Winston now knows more about endo than many others, because he’s witnessed first hand how debilitating it is.

My experience makes me wish I’d pushed for a better solution much earlier. To some extent, I gave up looking because I just thought it was me, and because there’s no cure, so I just had to put up with my deficient body.

But endo is not a lifestyle disease – it’s just shitty luck. This isn’t a whinge, but an unveiling of what so many of us with endo hide. I don’t want people to suffer in silence like I did.

This article was first published on KidSpot and republished on theAsianparent with permission.

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