My endometriosis diagnosis was not the first time I had been told that I would be sick for the rest of my life. I have a vivid memory of my first sex education lesson aged 11, where I was told that someday soon my periods would start and I would be sick and in pain every month until late in life.
I remember feeling very betrayed by everyone around me for keeping this secret hidden. I remember being furious and upset that this was dumped on me from no where. It felt like a really strange, secret burden that women took upon themselves to conceal from a younger generation until it was time.
It took many days until I felt able to face my fear about this impending illness and talk to someone about it.
I couldn’t understand why if it was so normal they felt it was appropriate to take only the girls in the school, hide us away in a small room and quietly break the news to us there.
It didn’t seem fair.
It still doesn’t. Because as soon as my periods did start aged 14, I realised something was wrong. That the pain I experienced wasn’t normal, and the same secret platitudes were used by every adult I spoke to about it (as in that classroom) to placate me for many years – when I knew something was wrong.
Funnily enough, getting a endometriosis diagnosis often means pushing back against this status quo, to find the root cause of pelvic pain.
For most women periods are a discomfort at best. An inconvenience. I just want to demystify the idea of any serious pain that is associated with that time of the month being at all normal. When you start to seriously consider periods as an affliction or illness (as I started to in my teens), then the “normality” of it comes under sharp focus.
I knew that something was wrong within my first two years – for two reasons. Firstly the severity of my symptoms, Pain that would leave me bedridden for around two to three days. Pain that was often worse than my endometriosis pain is now. Nausea that would eventually lead to me throwing up. Painfully heavy flows that spanned over a week or more.
Looking back, I endured this part of my periods without any help (but not without complaint) for around two years, because I was assured (repeatedly) that the first few years of your periods are the worst, and they would settle down.
Needless to say they didn’t. Years later, I didn’t even get the relief of knowing when my periods would arrive as other women could do. Planning around the dates, avoiding certain events or activities. None of this was an option for me. I lost count of the times I passed out in pain, as others chuckled at my “low pain threshold”. It was “just a period” after all.
I knew my experience wasn’t normal because I talked about it to other girls. I couldn’t understand how everyone else sailed through each month while I struggled. I was made to feel inhuman for complaining about something so natural, then brushed away by any doctor I saw with those same “normality” platitudes.
Severe pain is not normal
No pain is normal by its definition and pain is not something that should be endured. Pain is your body trying to tell you something is wrong, it’s how it tries to keep you safe and out of harm. Why was my body trying to tell me this so strongly, when no one wanted to listen?
Voicing dissent doesn’t make you a difficult patient – it makes you an empowered one. – Laurie Edwards
All anyone had to do when they explained all this to me aged 11 was to describe at what point I should seek help. At what point the pain should be considered abnormal. I could have saved myself a great deal of time. I firmly believe children being taught about sex and periods should be offered this lifeline then and there when I was not.
It was a real missed opportunity that a lot of us with endometriosis are still paying the price for.
At 16 I had had enough and started my long battle in what was to become my endometriosis diagnosis, seven years later aged 23 everything I went through finally made sense. But this was only after years of pleading and demanding – and lots of drugs. I weep for anyone who doesn’t have the persistence that I did. How many other women are still silenced by the same platitudes that I was?
Part of my endometriosis treatment completely stopped my periods. (Through the Mirena implant and back-to-back combined pills). I haven’t had a period for three years, and I fully intend to keep it that way.
Pain doesn’t have to be part of the female condition, and we do not have to accept this turn of events. I spent most of my childhood and teenage life hearing the same false assumptions about how pelvic pain was normal for a woman.
We have to collectively dismantle that idea, and make pelvic pain as a wider issue less of a taboo – by talking about it and equipping those that come after us with the tools to push back against the status quo. Then we’ll be more able to tackle the even bigger results of that pain, like endometriosis.