I am a huge music fan; I like songs with a story and a narrative. Yesterday I indulging my love of Taylor Swift - listening to one of her YouTube playlists when “Out of the Woods” came on and before I knew it tears streamed down my cheeks. This song is (in classic Swifty fashion) a break up song of sorts, but the wonderful thing about songs and lyrics is that the listener can interrupt them in a way that the author hadn’t intended; for me the song represented my continuing struggle with my endo monster.
Yesterday started my third period post op and the third month of stabbing pain, the third month of cramping, the third month of back pain, the third month of bowel and bladder pain. I feel like I am stuck in a forest trying to find my way out, suffocating by the encroaching darkness and shadows. My consultant told me he expected me to be pain free and that any residual pain I may experience would be nerve pain that would subside with time – so with each impending period I feel myself anxiously wondering if I am going to be ok – I am out of the woods, am I in the clear yet – and I am to date repeatedly disappointed.
Battling endometriosis feels like constantly battling through a dense, angry, dark, confusing, enemy ridden forest. Generally speaking I do my best to see the wood from the trees, I try to see the beauty and wonder in the endo forest I have found myself in, I try to find the path with the most light, I’ll remove what obstacles I can to make my journey easier and I face the unknown depths with positivity - but at the moment, damn it I am pissed off, I am angry and I am fu*king exhausted with the same sh*t.
Yesterday I sat on the edge of my bed and felt the barb wire tighten on my uterus, I felt my pelvis cramp down is revolt, I felt my back tense in protest and I looked deep inside myself to find the energy to get up and shower. Is this it? Is this what I am to face for the rest of my reproductive days – possibly longer? I feel like I am crazy, my consultant said he got it all and I can feel it – I know what my endo feels like and I can feel it. This disease has wonderful way of making you feel isolated. I try constantly to keep a check on my expectations -5 surgeries has taught me not to hope for miracles, but I cannot help but get carried away when my consultant is so confidently adamant that he removed all the disease (which is possible, there are case studies out there). But I recognise the pain that is filtering back as the months go by, like barbed wire silently creeping and weaving through my pelvis.
I am much better than I was, my mid-month pain isn’t half of what it used to be – in fact it has been isolated to just right side pain that co-codamol controls. I know I am much better than I have been (and I am thankful for that) but is it such a crime to want to be normal? It is obscene to ask to not have to be so strong and brave every month? Today, I would like to know what it felt like not to feel nauseated by strong painkillers. Today, I would like to not have to wear my makeup as war paint - preparing myself for the battle which is just an ordinary day to many other women. Today, I would love to experience the peace and serenity of being free of the crippling fear that each month of pain could cause the loss of my fertility. Today, I would love to be free of the niggling feeling I am a disappointment to my friends and family for not getting better; everyone wants so much for me to be ok, to be rid of the endo and when these pains arise I feel like I am letting them down. Today, I would love to not have to be an endo warrior. Today, I would love to be a normal girl.
With this post I do not ask for sympathy, I am sharing these feelings because I think it is important to help people understand the layers of what it means to live with endometriosis. This disease is so cruel – from how long it takes to get diagnosised, to getting a treatment, to finding a doctor to take you seriously post treatment, to finding a doctor who can manage this disease, to the continuous physical, mental and emotional battles we endo sisters encounter daily. Tomorrow or the next day I will be fine, I will dust myself off, I will take the reins off the endo beast and I’ll happily take the lead but right now I am allowed to be angry, right now I am exhausted and right now the beast wins.