Endometriosis And Me

bianca-presto

You know that flutter of a feeling you get when something is wrong? An inkling deep down in the pit of your stomach that something isn’t all together copasetic? Groovy in the gastro? Positive in the pelvis? Call it intuition or what you will, there’s something to be said for “knowing” and listening to your own body, trusting your ahem, gut when it comes to your health.

In my case, my “gut feeling” presented itself in my teens. I was late-ish to get my period, at least compared to all my friends. So much so that aged 14 when Aunt Flow finally arrived at school, the boys in my class cheered! From that point on, my period was about as reliable as London’s transport system. Sometimes it would come, sometimes it would arrive twice in one month, and sometimes it would go on strike just for the hell of it.

Coupled with an unreliable period, I was dealt a case of crippling pain whenever said period decided to show up. Now I’ve had a kid, so I can wholeheartedly say, without any hesitation, that I’d rather give birth 10 times over than ever experience those period pains again. It got to the point I was petrified my period would come and worse, that I’d need a number two because boy oh boy, that’s when the sh*t really hit the fan. Oh, and sex a little later in my teens wasn’t much fun either. I mean it never is at that age, but every time it felt like I was losing my virginity all over again and quite frankly no one wants to relive that. Ever.

It’s the early 90s in South Africa and like every good girl I went to see our family gynaecologist – (they literally get passed down through two generations or so let’s just say he’d seen his fair share) and his recommendation was to put me on the contraceptive pill. “To control the periods and manage the pain.” That’s it. No further exploration, no possibility that it could’ve been anything untoward and certainly no mention of the word ‘Endometriosis’.

Fast forward to my early 20s (almost ten years living with chronic pain), I’m now making a life for myself in London with my boyfriend, who would go on to become my husband. It turns out that he doesn’t think holding me whilst I’m doubled over in pain on the toilet is the most romantic start to our relationship, so we started researching. And researching. Everything we read leads us to believe I’m suffering with Endometriosis, a condition in which the layer of tissue that normally covers the inside of the uterus grows outside of it.

But, getting a diagnosis or treatment in those days was incredibly hard. So off we trot to our local GP, armed with all our notes and most importantly, my personal experiences. After a few months, I’m finally diagnosed. “Apologies for the delay to your service, there’s an obstruction on the line”.

With one of the worst cases the consultant had ever seen, I spent the next few years undergoing numerous laparoscopy treatments (a procedure where a laser is inserted through your belly button to burn away scar tissue) having my internal organs separated from each other as a result of years of internal bleeding, which had caused them to fuse together. It turns out I was trying to poop with my bowel attached to my back. I don’t say this to gross you out but, so you understand what a mess it was in there.

At this point, my husband and I were told that the likelihood of me ever conceiving naturally were low. On the flip side, if we did manage to fall pregnant, it was highly likely that after giving birth my endometriosis symptoms would ease off, if not stop entirely.  I was in my mid-twenties, babies were not on the agenda yet, but to be told there’s every chance you may not fall pregnant, ever, is a sucker punch to an already wrecked stomach.

We tried of course. Valiantly took on the challenge until we eventually had to admit defeat a few years later and ask for medical intervention. Throughout the IVF process my thoughts were consumed by first and foremost, a happy, healthy baby and secondly, that this could (bonus) be the end of years and years of chronic pain. Almost eight years later, said baby is indeed happy and healthy and my endometriosis? Well it’s still there, albeit a duller, more bearable throb but enough to remind me of the surgeon’s words as I lay on the delivery table, during an emergency c-section “good grief, it’s a mess in here, a road map of scar tissue”.

Turns out my intuition was right all along and ultimately played itself out as our daughter arrived into the world to the dulcet tones of ACDC’s ‘Highway to Hell’.

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