What is ‘normal’?

It’s now been 12 months since I received my diagnosis. When I first heard the words “We’ll be treating you for severe endometriosis” I felt an immediate sense of relief, and that suddenly everything that I had been feeling for more than 20 years finally made sense. What I wasn’t prepared for was the realisation of just how much ‘normalisation’ had affected me.

Coincidentally, the appointment with the specialist to discuss my diagnosis occurred while I had my period. When I was home later that night I was suddenly overcome with excruciating pain, greater than I had experienced – thankfully – for many years. For the first time since my early twenties, the pain made me cry, but somehow it felt different this time around. Then it dawned on me: I wasn’t crying because of the period pain. I was crying for all the years that I had always told it was normal to experience bad period pain or that I was using it as an excuse. I was crying for all the fights I’d had with my partner because saying that intercourse was painful ‘was just an excuse to get out of doing it’. I was crying because the normalisation of my symptoms had resulted in a far greater pain by suppressing my intuition that something was wrong, and instead had been made to feel like I was the one that was wrong or was being overdramatic. Everything that I’d previously just brushed aside as ‘normal’ was far from it – this ‘normal’ was a different normal.

When I started to look back, I was able to understand that my earliest onset of symptoms had occurred when I was 16. Not to sound cliché, but it was a different time back then. As a teenager in the 90s, much of your learning about your body and periods came from magazines such as Dolly, Cleo or Cosmopolitan. These publications were a perfect resource for teenage girls (and boys) to answer a lot of those embarrassing Sex Ed-type questions, and they helped us to understand that it was normal for your body to go through this experience. We were told that period pain is normal (and it is); we were told that it’s normal to have ‘heavy days’ (and we do). So how can you tell when ‘normal’ isn’t normal? Just like any other experience of pain, how do you measure one person’s threshold of pain against another?  The answer is: you can’t.

This plays a large part in why there is often a delay in diagnosis for many sufferers because many of the symptoms that are present can be attributed to being normal or even other ailments. Thus began my tale of misdiagnoses, just like so many endometriosis sufferers go through on their journey towards eventual diagnosis.

• Back when I was 16, thankfully my mother took me to the GP to address my heavy bleeding and period pain, which included joint pain. I was prescribed birth control (as is generally the case with endometriosis treatment), and that was that. There wasn’t a thought to look for any underlying causes; that was just how heavy periods were managed then.
• When I was 19 I started to experience a different type of abdominal pain, horrible cramping coupled with a significant change in bowel movements. The GP diagnosed it as Irritable Bowel Syndrome (IBS), and so began years in managing what I thought at the time was stock-standard, textbook IBS and not a symptom of endometriosis.
• When I was in my late twenties, I sought help from the GP for pain that I was experiencing during intercourse (yet another symptom of endometriosis). I was referred for an internal ultrasound to look for ovarian cysts, and when they came back clear, I was left without an answer.
• In my early thirties I presented with a sharp abdominal pain, again different to what I’d experienced before. I was immediately tested for Coeliac disease and sent for an abdominal CT scan to again look for polyps or cysts. Again, when they both came back clear, I was advised that perhaps I was simply experiencing stress.
• Another investigation into the painful intercourse a couple of years later found evidence of adenomyosis, so at this point I got one result at least.

My eventual diagnosis came after a discussion with my gynaecologist, when I had mentioned recently experiencing menstrual blood in my bowel movements – this is definitely not normal, and often is an indication of the presence of endometriosis. This eventuated in a diagnosis and laparoscopic treatment.

Thanks to advancements in research, there is a greater understanding of how endometriosis is now defined. However it was once thought that it was the actual uterine lining and thus only occurred as a result of the menstrual cycle. Hence, the normalisation of symptoms as just being a regular part of one’s period. Of course, we now know that this is not the case, where the wording has change to define that they are cells similar to those that line the uterus that grow in locations outside the uterus. As such the symptoms – whilst for many follow a cyclical pattern – are not contained to one week out of four, and therefore should not be seen to be solely attributed to a normal period.

So what it comes down to is that there is no normal when it comes to endometriosis – what is most important is trust your instincts and listen to when your body tells you that what you’re feeling isn’t normal. Even between each endowarrior, their experience with the illness is different; each one’s experience is a different normal to the next. Each has their very own kind of normal.