Speaking Up about Endo in 2018

March 18, 2018

“Can I call you an ambulance?”

 

I shook my head, and looked up, trying to bring my sweaty focus from the tiled floor up to her face. Everything was blurry. Doubled over on the seat I hugged myself tighter, wheezing, shrinking into a ball as white hot pain ripped through my abdomen and down my legs. I forced a wet smile.

 

“No thanks, I’ll be ok. Sorry. This is normal.”

 

The moment those words came out of my mouth, I knew I sounded insane. From the confusion and pity flickering across her face I saw that she suspected that I must have had an unspeakable illness of some kind. The irony. It isn’t unspeakable. We just don’t speak about it.

 

For years I’d put up with ‘bad period pain.’ Some months would be more painful than others. Overall the gradual worsening had been so steady that I suppose the alarm bells hadn’t really gone off. I don’t think I’d even brought it up with my GP. I knew that my period pain was worse than it was when I was younger. I knew that these days a bad month could have me bed-ridden for days, unable to work or function. I knew that some days regular painkillers didn’t touch the sides. But that was normal lady problems…right? Some women get it worse than others?

 

As I was wheeled out of Melbourne Airport arrivals that day in a wheelchair, sobbing with embarrassment and white as a sheet because the pain had rendered me incapable of moving (let alone collecting my suitcase from the baggage carousel by myself), the sad truth of my “normal” really started to sink in.

 

The thing was, my mother had endometriosis. Her sister had endometriosis. Their mother had it. All of them had hysterectomies after having children. My cousin was so badly crippled by endometriosis and adenomyosis (endometriosis’ evil twin sister) that she had a hysterectomy at 26. How on earth I’d thought I was ok, or had ‘skipped the curse,’ or that my pain ‘wasn’t that bad’, is a mystery to me. I guess they call that denial? As a family we never really talked about it at home, or if it was mentioned, it was vague in terms of “I had really bad period pain so they fixed it.” It was easy to pretend on the other 25 days of the month that there wasn’t a problem. That it wasn’t an issue.

 

That is, until I decided I wanted to start a family of my own. One major laparascopic operation and several internal ultrasounds later (always pleasant), the full extent of my endometriosis was revealed. It was everywhere. Including inside the muscle walls of my uterus (hello adenomyosis). They managed to laser off and excise most of it at the time (it has a tendency to come back) but the adenomyosis is severe and inoperable.

 

I was astonished to find my (male) surgeon was less than sympathetic. Smirking at my horror, he made light of my situation, casually chuckling “Well, the only cure for adenomyosis is hysterectomy.” As if my experience of pain was merely inconvenient and if I wanted to have children I should really put up and shut up. Furthermore, I had to beg for an MRI as he couldn’t see the point. “I’ve diagnosed you with endometriosis and adenomyosis. I don’t see what an MRI would achieve. We’ve just taken out as much as we can. It’s incurable.”

 

Cheers. 

 

I wanted an MRI to see exactly how far it had spread through the walls of the uterus and take the imaging to the fertility specialists, whom no doubt I would now need to see if I wanted to conceive.

 

It was a lot to process.

 

Months later, I’m now in a position where I’m going to explore my options for ART (assisted reproductive technology) conception. Unfortunately I’m not in a long term relationship, so I am considering sperm donor insemination and becoming a single mother by choice (a monumental decision in and of itself). I’m on borrowed time with the endometriosis and adenomyosis and in my late 30s so sadly I don’t have the luxury of waiting any longer.

 

As it is, I’m not expecting a smooth ride. My endometriosis is recurring and the adenomyosis is severe and this is known to create implanting and pregnancy complications. But I have found so much strength and inspiration in the wonderfully welcoming and supportive endometriosis and fertility communities, both in person and online, that I truly feel that I am not alone in this. There are so many women facing (or who sadly will face) the reality of living with endometriosis, who may also in time (and I sincerely hope they don’t) face the reality of challenging conception.

 

In fact, I have been so uplifted and galvanised by the strength of the endometriosis community that I have even started a blog (which I never thought I’d do in a million years).  

 

Becoming part of the active awareness community is already bringing so much joy and friendship into my life and if I can reach one woman in pain, like I was, and help her question her “normal,” I will be one happy lady.

 

I wish I’d listened to my body sooner. If you are experiencing chronic pain once a month, please speak to your GP. If diagnosed early, you may save yourself the pain and possibly fertility struggles later on.

 

With proper care, there’s a better “normal” for us out there. Together, we may even find a cure.

 

It’s time to speak up about this ‘unspeakable’ illness.

 

💛

 

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