Let’s Chat with Eloise
by Eloise Eaton | @endowithel
12 years; that’s the time between my first doctors appointment for my pain and my endometriosis diagnosis. Hindsight is a funny thing, as when I look back now the signs were always there. My name is Eloise, I’m 28 and this is my endometriosis story.
I was 11, in agonising pain, laying on the couch in the fetal position thinking “it’s happening, I’m getting my period”, as the pain I now know far too well was just getting started. Nope, no period, just pain, maybe next month, as I know the pain will return.
Fast forward to 13 year old El, and there it is again, but this time I was greeted by my introduction to ‘womanhood’. Little did I know, this was only the beginning of a long battle. I thought this was just the norm, as the Dolly magazine sealed section said “periods are painful”.
It wasn’t long until another symptom reared its ugly head. School was hard enough with the pain, but oh was I not prepared for the next symptom. Some girls could get away with a regular pad, but me? Well what did I do to deserve bleeding through nighttime pads within an hour. Losing this much blood paired with a secret battle with anorexia, and it’s no wonder dizzy spells and fainting were now part of my cycle too.
It was at this point in time I began to become very grateful to have a nurse for a mum. She knew something was not okay, so at 14, that’s when I nervously sat in a doctors office, where mum did most of the talking. Pain, heavy period, and cystic acne, they were my troublesome trio. In this moment was my first introduction to birth control in the form of the pill.
Sweet 16 and bloating joined the party. I was back to the doctor, but this time a new doctor. She changed my pill, told me to skip the sugar pills, because if I don’t have a period then I can’t be in pain right? This was also my first introduction to the idea it could be more, as I had my first ultrasound and the idea of an ovarian cyst was quickly shut down, as everything looked ‘fine’, I looked fine, so I had to be fine, right?
18 and this is where migraines appeared. I was swiftly taken off the combination pill, and placed on the mini pill. No estrogen, so that had to fix the problem. Well my pain was just getting worse as I aged. I remember crying to my doctor, telling her again about my pain and bloating.
It wasn’t until I was 19, and returning constantly to the doctor in pain that she decided it must be my diet. I was referred onto a gastroenterologist who quickly told me it’s just IBS. So back to my doctor I went, and off to a new gastroenterologist, but this time it was IBS and a ‘lazy bowel’. Frustrated, my doctor took things into her own hands, and put me on an elimination diet. This is where I received the first glimpse of hope as I was diagnosed with coeliac disease. Surely this couldn’t have all been caused by gluten?
My early 20’s were spent trying the depo injection to put me through medically induced menopause in an attempt to stop my migraines and lingering pain. Not only was this not a solution, but it came with some consequences. My doctor didn’t know the side effects putting me on the depo injection for close to 3 years would have until it was too late. My bone density scans revealed an early onset of osteoporosis; a side effect from the depo injection. It was at this point crying in the car in a medical practitioners car park was becoming too frequent.
I also spent my early 20’s pushing through. Well, I clearly wasn’t sick, so why should I act like it? University, social life, work life, I tried to balance it all, while trying to hide my agonising pain and other symptoms. This only led to emergency room visits, ambulance rides and lots of tears. My doctor still had no idea what was going on inside my body.
Endometriosis. I was 23 when I first heard the word. I remember sitting in bed, after a bad flare up started to simmer and I saw an Instagram post from a family friend, explaining her endometriosis. “What the heck is endometriosis?” so Dr Google was on the case. Tears ran down my cheeks almost instantly as I read the symptoms. I was scared, was this the word I had been looking for my entire life? My heart sank further as I read “endometriosis has no cure”. I told mum, “I think I have endometriosis”, but neither of us thought much of it as I couldn’t be that sick, because surely a doctor would have picked it up by now? But I booked another doctors appointment to reassess.
My turning point was at a work training. I had missed the training day prior due to a bad flare up and migraine but as the stubborn woman I am, I was determined. I pulled myself together and went to the training. Midday rolled around I was exhausted and the pain was kicking in again. One moment I was sitting on the chair, and the next I opened my eyes and I was staring at the ceiling, laying on the ground, with an ambulance on its way. I had blacked out from the pain. Mum met the ambulance at the hospital, I don’t remember much, simply overhearing my mum say to the nurse “we think she has endometriosis”.
I was finally off to my first gynecologist appointment. She agreed “I think she has endometriosis”. In February 2020 at age 25 I had my first laparoscopy, with a mirena put in. When I came to post surgery she was pushing surgical pictures in my face, saying “it’s just adhesions”, “have a baby, it will fix your pain” and “you need to see a psychologist, there’s nothing wrong with you, it’s all in your head”. Something didn’t sound right but I was inconsolable. I was single, with no answers to my pain and you just want me to have a baby?
Every girl with endometriosis I knew, went to one gynecologist. So I asked my doctor for a referral to see him. I was nervous, what if there really is nothing wrong with me? In my first appointment, after I explained everything, he simply said “you have endometriosis”. He explained I have textbook endometriosis symptoms, and promptly asked me if I wanted my egg reserves tested and injected my main pain points with something to stop the nerve pain. He apologized for my past gynecologist and promised we would find an answer for my pain.
June 2021 was my second laparoscopy, and when I tried a kyleena instead of the mirena (an IUD). “You have endometriosis, it was everywhere but we excised it” was all I remember from the morning after the surgery, when my gynecologist came to see me. Right ovary, left ovary, uterus, pouch of Douglas, bowel, bladder, rectum - I thought the list of areas would never end. The adhesions removed in my very first surgery were endometriosis, endometriosis that attached my right ovary to my abdominal wall, and I wasn’t crazy. It was bittersweet, I had the answer I had been looking for, for 11 years, but I was scared. This was only the beginning of my endometriosis journey.
Fast forward to 2022, and at 27 it was back with a vengeance. Laparoscopy three, four and five were in March, July and October, just months apart, the surgical pictures somehow looked identical. I went from a classification of mild to severe. I found out that not only am I stubborn, but so is my endometriosis.
I’m stubborn and I’m an anxious person, but I also know my body. It took years of being my, at times, only advocate to get an answer. I now have the most incredible care team around me who are there to support me in living a functional life. Sometimes you have to trust your gut (pun intended), and if something doesn’t feel right or ‘normal’ you have to fight. The tears, breakdowns and self doubt I experienced every step of this journey brought me to a place where I created my Instagram as a public pain journal. A place where others can read the symptoms and experiences of life with endometriosis and feel validated. My journey is nowhere near at its end, as my endometriosis is back in the driver’s seat of my life, with referrals to gastroenterologists, rheumatologists and possibly cardiologists on the horizon for further exploration of my symptoms and possible comorbid conditions like an inflammatory bowel disease and arthritis.
As a teenager and during my early twenties I thought I was going insane. I thought I was being dramatic and constant pain was normal. But spending 3-5 days a fortnight stuck in bed unable to move, is not normal. I wish I could tell my younger self, you’re not crazy, you just need better doctors. Once you get them, you will get the answers you’re needing. It’s not just you experiencing this pain, it’s endometriosis a hidden, but not rare disease.
You can follow Eloise on instagram, her handle is @endowithel .
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