I’m not ashamed of my endometriosis – Part 1

I’m not ashamed about having endometriosis which is why I’m pretty relaxed writing about it. Even talking about it in person I’m not so bothered about, but I do notice that the shame or embarrassment belongs to other people, mainly because they don’t know anything about it and go into a default mode of fear/misunderstanding.

I understand. Don’t worry, endometriosis is not contagious. I can’t cough or kiss you and then you’ll suddenly have endometriosis. If you read my not very well articulated post about what I think endometriosis is (please ask your doctor or specialist for a better description than my layman’s attempt!) then you’ll know that it only affects women for one thing, and is a disease that a lot of women have, globally, but very little is known about it. When I speak to different doctors, they have different attitudes about it – some are blasé, like, ‘Oh, don’t worry, it’s really common’, as if you’re talking to them about a cold, and others are stern and concerned and do a million tests and frighten the life out of me as to whether or not I’m planning to have children and if so my biological clock is ticking and that endometriosis acts like a tumour, “Oh but don’t worry it’s not cancerous…” Not unless you have endometrial cancer which is a subject I am not going to let myself have a heart attack about right now because that’s a bridge I never want to cross.

I’ve had a few years to stew about endometriosis and only now am I realising the full and deep impact it has had on my life. For my entire life from puberty to today, I’ve always been taught that painful and stressful periods are totally normal. Pelvic crippling, spontaneous bouts of pain coupled with see-sawing hormonal-based mood swings were all part in parcel of being a woman. Yes, they are, and no they’re not. The reproductive system for both men and women will endure a time of awkward and uncomfortable change, but I don’t think women should accept that physical pain that makes you cry, every single month, is normal. Your mum, your sister, your daughter, your aunt, your girlfriend, your wife… all those women. The symptoms of endometriosis should not make all those women you love and respect so much, suffer so horrendously every single month.

I have one brother who I have never been encouraged to discuss such things, and a mum who believes wholeheartedly that it’s completely normal to feel horrible every month for the rest of your life, because her sisters went through it all, her mum went through it, and even my dad’s sisters and mum went through it all.

It was all completely normal for us. But there weren’t only physical consequences, but also emotional ones. The stress caused by the endometriosis did not just affect the women, but the men who were there to support them. The harmony within families suffered because of this disease. Relationships were strained and even ended as everyone struggled with their own internal confusion as to why things were the way they were and why I was the black sheep of the family and everyone else turned out fine. Why couldn’t Liz just behave and act normally like everyone else? Everyone else was going through it so, why was she any different? Was her depression simply a ‘boy who cried wolf’ type scenario? Did she put it all on herself because she didn’t work hard enough and perhaps, maybe, even deserved it?

I always felt different and I was always a sickly child who hated sports but didn’t mind physical activity that I could do in my own time. Having had a loving but financially poor family home as my upbringing, we were resourceful and I missed out on a few opportunities but was lucky enough to go to a good school, go to a good uni, go to private college, get disappointing jobs despite all my tertiary education and have relationship heartbreaks along the way. I was always reminded of the fact that people would silently remind me that I was the black sheep because I wasn’t sporty or outgoing enough and was prone to dark moods. I started to think that even though I loved children, I possibly shouldn’t bother having them because I wouldn’t want to pass on all those traits deemed socially unacceptable, to the poor unwitting child. I was sad, happy, up and down and just barely trying to keep myself together.

But when I got the diagnosis that I had an aggressive form of  Stage IV endometriosis I was gobsmacked. Gone were the carefree days of, “well, when I can sort myself out, I’ll think about having a baby.” The doctors told me if I didn’t act now, I may never be able to, even artificially. IVF is no walk in the park and is no guarantee of insemination as our bodies are all different and factors like timing, egg stores, sperm motility, and other health issues. Clinically, it sounded reasonable and well articulated. In my mind though, I was screaming, “DOES THIS MEAN I’M EVEN A WOMAN?”

I cried for weeks… months… I have cried on and off over years wondering whether to decide to be a frankenstein patient and let my body take another battering or just… give up. It made the already existing depression worse and I spiralled down into a deep state of denial and self destruction for a while. My life was unravelling fast and I didn’t know what was next. I felt like I had come to the very end.

To be continued…

Oh I forgot….

So, what is endometriosis?

It is when the lining of the uterus grows outside of the uterus and can literally grow everywhere else – on other organs, etc. That is a very basic explanation, but when I first got diagnosed, I had a giant cyst on my ovary that burst and sent me to the emergency room and that was the start of this whole new learning process for me  and learning that endometriosis can grow anywhere in the body like a cancer (although it is benign) and forms scar tissue wherever it goes. Some people even get it in their lungs. There were some cases where even after full hysterectomy, the endometriosis grew back.

I also learned that it is a very common condition, that 10% of women in Australia have it (knowingly or unknowingly) and that we know nothing about why it even does the things it does.

There are some floating theories around but it’s a whole new world of study  and science while many women suffer in silence over some of the most painful and brutal symptoms anyone could endure.

If it was visible, like, a bruise or a break out in hives, it would be more respected, understood and therefore easier to pigeonhole. But it’s deep within our bodies, invisible, and pervasive. Please keep this in mind when you see a lady having a particularly bad day or see your sister crying over nothing. It could be something or it could be anything or it could be nothing. You just never know.

Be compassionate and talk to one another. This runs in my family on both sides, something I learned far too late in my reproductive life but can still do something about. You can too.

I hope this blog helps you to understand, whether or not you’re going through the same thing or whether or not you’re trying to understand the condition for someone you want to support. We can all support each other through listening, talking, having empathy and truly making an attempt to understand.

Take good care of yourselves and each other.