If you’ve never felt it, you’ll never know and never quite fully understand. For that I am glad, because I have never met anyone upon whom I would wish this pain (and I’ve met some really annoying and kind of generally abhorrent people). Despite this, I’m going to attempt to paint a picture for you, and it’s for the purpose of education. It’s for every woman who has ever had to hear the phrases: “It’s all in your head”; “It can’t be that bad”; “Suck it up”; “It’s only period pain”. It’s so that maybe you can be another person who is supportive and sympathetic to women with endometriosis, a person for whom we are eternally grateful for instead of epically resentful of.
Every time one tells a woman with endometriosis any of the above phrases, or variations that insinuate that her pain is somehow fabricated, dramatised, or not in fact there, one adds another page to the already burgeoning narrative she has been fed since adolescence. A narrative which tells her she is firstly, not to speak of such unsavoury topics such as menstruation, and secondly, that any pain is to be quietly tolerated and dealt with because it is merely a women’s lot to bear in life. It’s a (rather sexist) narrative that many of us with endometriosis have begun to re-write because we finally have the proof that everyone else was wrong. It’s not normal to have endometrium-like tissue growing all over your organs, wreaking havoc on the body around it. The same goes for women with conditions like polycystic ovarian syndrome, adenomyosis, and uterine fibroids just to name a few.
To put it crudely, endometriosis is a real bitch. It can grow back even once removed, it can cause adhesions and scarring, it can make your organs stick together, and rob you of your fertility. But you cannot see that happening inside of you, so how can you know it’s there? Though before I was referred to a specialist I didn’t think there was anything wrong with me and that my pain was normal, now everything I experienced I see in a new light and it reminds me that my endometriosis is real, it’s there. It always was.
This is how I know it’s real…
I know it because as a teenage girl I watched the other girls at school look fine and happy and energetic every day of the month and wondered if they ever even got their periods, because mine made me miserable. I would feel sapped of all my energy and pain that felt like many violent hands squeezing at my lower abdomen very tightly would suddenly sneak up on me, and yet be gone as suddenly as it had started (and would start again just as suddenly).
I know it because everything I had been told about periods said that any pain should go away if you took a Panadol or used a heat pack, and mine did not. Not ever. My abdomen was just warm as well as sore and my sensitive gag reflex was reeling from trying to swallow tablets (endo fixed that for me, you take so many pills it’s hard to have trouble anymore).
I know it when I have tried to describe the pain to people that cannot know, I use this analogy and it makes them say “ouch” and squirm uncomfortably: Ever get a calf cramp? A really bad one? The kind that comes on all of a sudden and before you know it you’re trying not to scream and desperately trying to stretch out that angry muscle? The kind that feels like the muscle is actually being torn from your body? That’s what my uterus feels like. Only I cannot stretch it out, I cannot do anything to give myself sure relief; I can only wait and hope that mercy will come soon. If I am in public I devote all my energy to not screaming, because the last thing I want is people staring at me as though I am insane.
I know it because at sixteen when I told a doctor, she put me on the Pill and told me not to worry too much because that might just make it worse, even though she seemed more concerned than I was.
I know it because two years later after the pain became worse and more frequent despite the medication (and sitting in pathophysiology class hearing about ovarian cysts and uterine fibroids while on my period made me want to throw up), that same doctor wrote me a referral to one of the best endometriosis specialists around. I found this out after looking him up the night before my appointment and being appalled because there was no freaking way anything was that wrong with me, and I would officially become a time waster at that appointment…I was not okay with that. Despite that, I went anyway because some part of me hoped that pain like this wasn’t normal and maybe he could make it go away.
I know it because when I went to see the specialist I didn’t feel like a time waster. He made me feel like I belonged in that expensive tub chair in his office because as he asked me questions all the answers suddenly seemed to point towards endometriosis in a way that I believed. I was with him for thirty minutes and by the end I had a consent form for exploratory surgery to go hunt it down where it lived.
I know it because in the year and a half it took me to actually get to having the surgery (private health is expensive y’all) I was still in pain and yet still fought with myself about whether or not I had endo, terrified most of all of not having it and having no reason for my pain. Of having surgery only to find that I had been stupid and mistaken every time I had dared to take my wonderful, kind gynaecologist at his word and believe that I could have endometriosis.
I know it because I cried on my way to theatre for the same reasons and when I woke up from surgery the first thing I asked was “did you find it?”. I was still under the affects of anaesthesia and do not remember even now to whom I addressed the question, or what the answer was. I could not even say for sure that the conversation actually happened if not for my surgeon confirming it. I cried because when I came to my senses my surgeon and the anaesthetist were gone and the shift change had happened so none of the nurses could give me an answer and instead just hugged me and gave me more pain meds.
I know it now because even after surgery I’m still struggling with controlling the pain because my game plan right now consists of throwing spaghetti at the wall to see what sticks. I’m trying everything I can and am thankful for my wonderful specialist who always makes me feel like I am lucky and well taken care of.
I know it when I tell my story and other girls tell me it sounds so much like their’s and I wish they were in front of me instead of online so I could hug them and tell them that it’s okay, because someone else knows what you know and has felt what you have felt. I understand, and you understand me, and it’s the greatest feeling I’ve ever experienced.
I know it as I type this post having swallowed two tramadol and two panadol, and the pain is still killing me, because I dared to walk around with my friend today.
I know it because endometriosis changes the way you look at the world and your life. You look for small wins and you appreciated good things that you do have. I look at my future with both hope and fear, worried that my dream of becoming a perioperative nurse will be hindered by this disease.
I know it most of all because I have seen it. The surgeon showed me the photographs from my ex-lap surgery and I could actually see the endometriosis and adhesions inside of me. Even though the relief of knowing he had found it wore off, and fear hit me like a ton of bricks, having physical proof that I was not insane is something that grounds me. I am not weak, I am not crazy, I have endometriosis and sometimes I have bad pain days; that’s okay, it’s okay to not always be okay.
Despite what this disease has taken from me, and may one day take more from me, I am in fact thankful for it…for the name, for the reason, for proof that I am not crazy. I own endometriosis, it does not own me. It’s like a game where you have to figure out the rules as you go, but when the game is over I will not walk out the loser (yes, that’s a Springsteen song). More importantly, I have found many beautiful Endo Sisters across the world who understand exactly how this feels and who remind me every day that this disease takes many forms and can take so many things, but the women who have it are the strongest, sweetest, and most powerful human beings I have ever had the pleasure of sharing with. They inspire me to hope and be better every day, no matter what my pain.
This one’s for all of you.