Endometriosis Awareness Month Part 1: In the Beginning…

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This ain’t no party, this ain’t no disco, this ain’t no foolin’ around… (Life During Wartime, Talking Heads) 

March is Endometriosis Awareness month and because this is the first March that I have officially had endometriosis, I wanted to do something special. Over the next few weeks I will be bring you three blog entries dedicated to awareness. This is the first, and it starts with me. I’ve talked about my journey in bits and pieces as it’s relevant to my blog topics but this is the whole damn thing. I would read stories like this on blogs over and over before I was diagnosed, looking for the similarities and for signs that I wasn’t fooling myself…that this was the reason for my pain and I should believe what my doctor was telling me.

Do you remember being fifteen? What were you like? What did you want most in the world? Possibly it was something entirely superficial and materialistic, like a car or an iPhone; maybe you just wanted to win your netball competition or win age champion at the school swimming carnival. I wanted things like this, these simple and sometimes selfish wishes that we all have at that age. I didn’t know that there was something I secretly wanted even more, I didn’t know that what I really wanted was to never have my period again. “What’s your problem?” people would quip when they saw my face during those seven days. “Cheer up why don’t you?”. It wasn’t for a lack of trying. I hated my period, because when I was fifteen all of this was just beginning. I first started to notice that my period wasn’t just annoying, it hurt, sometimes really badly. It was messy, and it made me exhausted, and being exhausted made me not so happy shiny. I looked at everyone else and decided that I must have been weak or have a really low pain threshold. Everyone else seemed fine and I began to wonder if half of those girls even got periods. I thought every other girl felt the same thing I did, because people got period pain…that wasn’t news. “Take a panadol,” one friend said. “No, panadol is useless, you need ibuprofen because that’s made to help cramps,” another one told me. I thought I’d try it, my mother had bought me some period pain specific tablets a few months back and I hadn’t managed to take any as of yet. I asked the nurse at school when I should take them, without mentioning how bad the pain was, and she told me before the cramps started…otherwise just take it as soon as one started feeling the pain. Perhaps if I had told her, if she had known just how much pain I was in, she would have said: “forget the tablets, go to a doctor”. But she didn’t know, and so I did what she said.I am horrible at swallowing tablets, I gag a lot and back then I hadn’t even mastered the getting it down my throat part because reflex always stopped me.

One day I woke up in fairly serious pain and so I managed to get my two ibuprofen down and then…nothing. It didn’t do anything.  I remember sitting outside form class, I was early, and my teacher came up to open the room. I was staring into the distance trying to focus on anything but the pain I was feeling. Compared to what I would later experience it was amateur, but at the time it was horrible. My form teacher, also my biology teacher, looked at me and jokingly waved his hand in front of my eyes…”you okay?”. I asked him how long an ibuprofen took to work and he replied about fifteen to thirty minutes (at least he was actually a scientist). “Damn,” I whispered. He repeated his earlier question, more seriously this time, and I quietly told him that I was just having some pain but that I was okay. Clearly seeing that I didn’t want to talk about it, he let it go, but I noticed in biology class over the next few days occasionally he would look in my direction as though we were repeating that conversation over and over. But my answer was always the same, my eyes said: I’m okay. A little while later, end of term, we had what could be generously termed a bludge lesson. We basically sat in the library on the last day of term and messed around on computers, or talked to friends. My friends were sitting on the floor because it was cold and that’s where the sun was. They played cards and I watched, leaning against the glass window, in pain yet again. My teacher stood above me and asked, “what’s going on?”. I mumbled something about having my period, worried that anyone would hear me and even more embarrassed to be talking about it to my male teacher. But he was one of those teachers, the ones that everybody loves because they actually care about their students and ask you how you are and actually mean it. Usually they don’t even know how great they are. He realised this wasn’t the first time this had happened in his classroom and he asked me about it. He told me about how a flatmate of his had endometriosis and that she was often like this, in a lot of pain and finding it hard to keep a straight face, and that he thought I should tell someone about my pain while it was still relatively mild in case I had the same thing. I thought the idea that I had endometriosis was stupid because I knew exactly what it was, only I believed the limited info I had on it. Girls with endo weren’t like me, they stayed home from school bedridden with pain, my pain wasn’t like that was it? No, I was just a wuss who couldn’t deal and I needed to suck it up.

I kept thinking this for a very long time and yet it would not be the last time that my teacher would see me like that, in fact he saw worse. I didn’t tell anyone else about my pain, because I thought that it was normal, and that you didn’t talk about that stuff anyway. At sixteen, almost seventeen, I found myself in my GP’s office chatting about the progress I had made with some of the issues I’d had psychologically during year 11. I was doing okay despite everything, and I stressed less about my work. When we were done she asked me if she could help with anything else. I don’t know what made me start telling her about my period, maybe it was the fact that she was a doctor and it was okay to talk about it with her, maybe it was the fact that I was starting to worry just a little about my pain. I wanted her to tell me I had nothing to worry about, that it was perfectly fine. I knew girls my age controlled the annoyances of periods with the Pill though, so maybe that would help me.  When I told her about how much blood there was and how much pain, she wrote it all down and told me she would give me the Pill if I wanted it. I asked if I should be worried and while she told me not to stress about it, I wasn’t told it was perfectly normal.

Nearly two years later I was sitting back in my GP’s office. In that time I had managed to finish high school, get into a combined Science/Arts degree at university and just as quickly dropped science when I realised my heart belonged to literature and criminology more than biomedicine and ecology. I was still taking physiology though, because part of me still longed to learn it all, to understand everything I could about the body and how it managed to screw so many things up in something so intricately designed. Despite the Pill my pain was worse and I began to think about it more and more. I was still 90 percent convinced that it was normal but maybe I just got a hit a little harder than most. I’d been back to my GP many times for new scripts and when she asked if the pain was better I’d say no, but I came back so infrequently that she probably didn’t think much of it. It was during this instance in early 2014 that she had decided that all of this wasn’t okay and that maybe I should worry and she found it odd that I wasn’t knocking on her door every month to complain. I didn’t really see a point because how many times could I repeat that it hurt? She realised how long it had been since she started me on the Pill and that I hadn’t improved. I remember her looking at her computer in disbelief and asked me to start from the beginning. What did this feel like like? Um, bad…I guess. Did I take any medication for it? No, paracetamol and ibuprofen don’t do anything for me so I don’t take it. When she suggested that a referral to a gynaecologist was in order I thought it was a bit premature, but a part of me was glad. There was a part of me that would occasionally whisper in the back of my mind: what if it is something? What if you don’t have to be in so much pain? It usually felt more pressing when I lay on my bed taking deep breaths because the pain in my lower abdomen was so bad I thought I might faint. Or when that same teacher, who by now was actually a pretty good friend, would tell me to keep on it and not let anyone tell me that the pain wasn’t real or all in my head. It was that whisper that made me call the doctor my GP had referred me to and make an appointment and then look him up the night before I went to see him. When I realised he was an endometriosis specialist I was worried, not at the thought that I might have it, but at the thought that I would waste his time because my pain wasn’t anything like that.

I’ve sat in my gynaecologist’s waiting room so many times now that I’ve memorised most of it’s interior. My first time there I wasn’t entirely sure what I was doing, but I tried to convince myself that everything would be fine and that maybe, just maybe, I was one of those girls with endometriosis and I just couldn’t see it. I had told myself for so long that it was okay, and it was normal, that I wouldn’t let myself believe anything else. I liked my doctor straight away, he was nice and wasn’t afraid to lighten the mood with a joke or two. What I liked most was that I never felt as though I had to work at convincing him to take my pain seriously, he convinced me. It was something about the way he asked the questions that made me see my pain for what it was. It was horrible, and it hurt, and the worst thing was that after every period I would forget how much it hurt and so assume it wasn’t bad; then it would come back and it started to come even when I didn’t get my period. He asked me if I took a lot of time off school or work, if I felt like lying in bed all day. I told him I never missed school, or uni, but that was just because I was afraid to fall behind. What he asked me next was what did it for me, and seemingly for him too. Writing down what I had just said, he looked at me and asked gently, “so you’ve never missed school then…but did you want to?”. I took a moment to think about all the times I sat in a lecture or tutorial in pain, all the days I went to school but wished I could just stay home, and the work sessions I’d forced myself to go to. I was almost crying when I told him yes. He’d heard enough. The diagnostic laparoscopy was explained to me and when he presented me the consent form, I didn’t hesitate in signing it.

A year and a half later I had surgery (private health…not cheap) just after finishing all the requirements for my degree and applying to graduate nursing school. I’ve told the story of that surgery and my diagnosis in other posts, “The Name Game” and “Feeling the Calling”. But I wanted to write about how I got there, the doubts that plagued me and continued to even after signing that consent form and in fact up until they wheeled me into theatre. I, like so many other women with this disease, didn’t believe in my own suffering for so long and let people who didn’t know what they were talking about tell me that my pain wasn’t anything. After I started to accept that my pain wasn’t normal, I was afraid to tell people because I worried that they wouldn’t believe me due to the fact that I’d done such a good job keeping it a secret. The worst thing you can say to someone with endo is: “you don’t look sick”.  Even now endometriosis is a confusing world that I’m still trying to wrap my head around. I’m still dealing with pain and unfortunately at the moment I can’t say that I feel that much better than before. But I have something more than I did, I have a name and a reason for why this pain is happening to me, I have things that I can try to help it, and I have a specialist that I know I can count on and have known it since I walked into his office two years ago.

The funniest thing of all is that two men probably played the biggest role in getting me to realise that my pain wasn’t a punishment for being born female, it wasn’t just my burden to bear, it was endometriosis. To that teacher, who knows who he is, and my amazing doctor…thank you, I couldn’t have done it without you.

To my endo sisters, this story that I share is my thanks for the stories that you let me read during that time of uncertainty. Your strength is inspiring. One of the greatest moments for me was when I recommended my specialist to another local endo sister and she reported that for the first time in a while she felt hopeful despite her debilitating symptoms. It felt good to spread the love and help someone else. I’m lucky to have a supportive family, but I’m just as lucky to have found thousands of beautiful sisters across the world who give me the faith I need to carry on.

To be continued…Part 2: Things Women With Endo Wish You Knew 

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