"I hadn’t even heard of endo until I was undergoing IVF."

If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.

I would love my endometriosis/adenomyosis story to be about my terrible struggle to cure my hideously painful periods.

I’d be the hero who is ignored for years by the medical profession. I’d spend days every month prostrate on the floor; blood gushing from me like my uterus wanted a part in the Texas Chainsaw Massacre. I’d triumphantly win, get treatment and be cured forever.

That’s not me. I hadn’t even heard of endo or adeno until I spent a year having unprotected sex, a lot, and didn’t get pregnant. It turns out I’ve got two of the major causes of infertility and I’m currently doing IVF in the hope that science can succeed where my body failed.

Even after my fertility doctor mentioned these diseases, and scans and surgery revealed I had them, I wasn’t sure I believed either existed (mainly because I couldn’t spell them).

I look at the list of symptoms and don’t say yes to many; I didn’t have particularly painful periods, they weren’t heavy, or particularly irregular.

In the last eight months I’ve had a total crash course in endo and adeno and here’s some things I’ve learnt.

Get proper medical advice.

If you are having difficulty getting pregnant or you’re lying on the floor sobbing every month – this is not normal and you need some help.

There are many Australian specialists in the field of endo. If you think you might have it, get your GP to refer to you someone listed on the Endometriosis Care Centre of Australia site. If there isn’t a specialist near you, call one and ask them to recommend someone near you. Tons of doctors don’t know much about Endo and Adenomyosis is even rarer.

Endometriosis. Adenomyosis. What are they?

They’re conditions caused when the lining (the endometrium) of your womb doesn’t vacate your uterus like it should, through the cervix.

With endometriosis, the lining ends up elsewhere in the pelvic region. I like to think it’s because it’s got a sense of adventure. It came as a total shock to me to learn the lining can reverse out of your fallopian tubes; I only made it to tenth grade biology, and my biology teacher focused more on photosynthesis than lady-part functions.

I found reading some good medical sites really empowering because I started to understand what was happening in my abdomen - though I found it more helpful stick to reputable sources written by people with medical degrees rather than kooks with crystals.

With Adenomyosis, the lining migrates into the wall of the uterus. I know, weird. There is a part of me that expects it to burst out of my tummy like in Alien but I haven’t found any reference to it in any literature.

It wouldn’t have crossed my mind that there was something amiss in my middle had I not been trying to get pregnant. No one is sure why these conditions affect fertility, but they do.

Talk to your girlfriends about your periods.

When I was growing up there was always a joke about how girls talked about periods all the time. Not true. Until this year I don’t think I’ve ever had a conversation about periods with a friend, apart from the “oh-my-god-I’m-bloated-in-pain-want-to-kill-people-and-eat-cake” spiel.

I thought my level of period pain was normal. Is it like stubbing your toe? A bad headache or like you’ve been hit in the stomach by a team of angry ruby players? And bleeding…. There’s another subject I’d never talked about.

How much blood? Maybe I’m the only person who hasn’t had this conversation. Maybe all the women in my life have been meeting up for cocktails and talking about how many tampons and pads they use in a month. But I doubt it.

I think we don’t talk about it because we’re encouraged from a young age that we should feel ashamed about it. There’s a shitty misogynistic joke I heard when I was a kid: “How can you trust a creature that bleeds for five days a month and doesn’t die”. I remember hearing that and absorbing, but every time I thought about it I just felt a little bit more revolted with my body. It’s no wonder we don’t talk about periods.

Looking back, I think my periods changed since I first got them, aged 13; that’s nearly 25 years ago so I didn’t notice. I was also on the Pill for nearly 2 decades, and frequently took the pill without a break. I think my periods got shorter (which can be a symptom of endometriosis), but I can’t swear to that.

Now, I bleed for no more than 72 hours a month (this isn’t a normal endo bleed, apparently) and I rarely use more than 1 tampon a day, and a pad overnight. It feels like I’ve been punched in the ovaries, just lightly – but this pain comes and goes.

I cramp for the 24 hours before I start bleeding, and alternate monthly between spotty skin, monster chocolate cravings and irrational anger at the people I love most. My cycle length varies between 23 and 30 days, but until I was trying to get pregnant I took no notice of it.

Surgery for endometriosis.

Because I didn’t display any of the major symptoms, I went in for surgery (a laparoscopy) expecting them to find nothing. Wrong.

I was under for a couple of hours – way longer than anticipated, which meant my poor partner had a very stressful wait imagining I’d died on the operating table. They popped in the cameras and discovered stage 4 endometriosis. One of the sticky patches had glued my left ovary round the back of my uterus. Freaky.

The doctors pump your abdomen full of CO2 gas to inflate it, giving them room to work. Most of the gas is removed but the remainder has to be processed by your body and can take a wee while. While I had gas in my abdomen I got a searing pain in my shoulder every time I sat upright. This is because the gas pushes the diaphragm and refers pain to the shoulder.

It hurt like a MOFO. But a wheat bag, hot water bottle or a cat (any major heat source) fixes the pain. I loved my wheat bag. I found the cat less reliable but equally warm.
There are teeny tiny scars on my tummy from where the incisions were.

Because my adenomyosis is spread all over my uterus – like sprinkles on fairy bread - there isn’t anything they can do. And, sadly, even after the surgery I still didn’t get pregnant. But fingers crossed the IVF works – even if my insides are a bit weird.

Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.

Everyone's endo experience is different, tell us yours in the comments below.