The Journey to Diagnosis: Life With Endometriosis
Photograph: @daantejebons on Instagram.
Living within a patriarchal society means feminine health and pain are issues often brushed under the carpet, leaving many occupied by a new normal in which their lives must be adapted around the perplexed looks of doctors or endless Google searches for advice.
It’s so important to us that The Insecure Girls’ Club provides a safe and open space for the issues that affect us as women, and we’re therefore so grateful to Alice for contributing this vulnerable piece that we’re sure will bring so much comfort to anyone else experiencing a similar struggle …
“I had always thought of intimacy and my own body as private, to be shared only with myself and a partner I trusted completely, but when you have had medical professionals examine you in stirrups, more surgeries and more internal ultrasounds than you’ve had sexual partners, privacy stops being something you can hope for. It was a diagnosis of endometriosis at the age of 21 in 2012 that led me and my body on a journey which would shatter my sense of privacy, and push me to wrestle my insecurities. In the seven years since my diagnosis I have fallen in and out of love with my body more times than I can count, learnt about self-advocacy, how to cope day to day with chronic pain and that in the search to treat my physical health, my mental health would take centre stage right alongside it.
It is difficult to avoid embarrassment when explaining to your parents that your need for surgery stems from painful sex, or to a neighbour that no, you’re not pregnant, just bloated. After an unfortunate bike accident in the summer of 2016 I broke my elbow and wore a sling for six weeks. For six weeks, people asked me what had happened, if I was okay, if I needed help, if there was anything they could do. Friends, family, colleagues, even strangers reached out without me even asking, and for six weeks I felt free to ask for everything I did need. It was strangely relieving and liberating and acted as a stark reminder of the problems that lurk in silence which are often the most difficult to explain, leaving us riddled with insecurity. Some days I wish I could have a sling for my womb just so she gets the support she needs.
In the absence of a sling, I worked on creating a physical and mental salve that would enable me to face the day to day challenges that push my coping mechanisms to the limit. But I was not always stood at the top of the hill. I started right down at the bottom, unable to imagine a way to navigate this untrodden and daunting path.
Ironically, as a teacher I preach self-love, motivation and confidence to my students, but have struggled for years around practicing what I preach. I vividly remember the first time I went to see a doctor about my symptoms which, for me, are: painful intercourse, bloating, lower back pain and painful periods that leave me feeling desperately unwell. There were, for years, so many things I wrote off as ‘normal’, too scared to ask or even to tentatively, casually, drop into conversation with my friends in the hope that they might have experienced something similar. When I did pluck up the courage to speak to friends at university, I realised that what I was experiencing was the exception, not the rule.
Armed with a list of symptoms on my phone for reference, I fumbled and stuttered my way through that first GP conversation. Let me preface this part by saying I have experienced immense kindness and empathy from healthcare professionals who are absolutely invaluable…but I was uncomfortable. I was embarrassed to describe my sex life to a stranger, embarrassed to not be able to pinpoint exactly what was going on, embarrassed I couldn’t explain when this had started or when it was at its worst, and embarrassed when he sent me away with lubricant as if that was the entirety of the problem. I felt like I didn’t know my own body and I was putting all of my trust in this stranger who had never spent a day walking in my skin, but naively convinced myself had all the answers. I left, as I have done many doctors’ appointments, armed with more questions than answers and blaming myself for letting embarrassment and insecurity stop me from pushing for the care I needed.
By the time I finally heard the word ‘endometriosis’, I had graduated and given up hope. I had bounced through two different GP clinics, in and out of a GUM clinic and through two different Gynaecology consultants, and yet my problems persisted. The conversations and admissions I had blundered through, red-faced and tongue-tied had battered my self-esteem, so much so that I began to distrust my own body and let doctors’ opinions of my pain convince me I was overreacting.
It took one more last-ditch appointment and one small but life-changing sentence to catapult me into a diagnosis: I think we should do a small procedure.
The small procedure was a laparoscopy, designed to explore, diagnose and, if found, remove endometriosis. So stunned, I didn’t even ask any questions during my appointment but just signed my permission, whatever it took to make this end: do it even if it meant another dead-end and voluntary surgery. Much googling and scaremongering later I discovered endometriosis meant that tissue resembling the endometrium (the lining of your womb) grows outside of your womb, causing pain and fertility challenges in some cases. Prepared for the worst but hoping for the best, I underwent my first surgery in September 2012.
“Some days I still stand at the top of the hill, able to manage and other days I slip down and find myself facing the climb all over again, but I do not climb alone. My insecurities have opened my life up to the immense and unwavering support”
In my case, I was ‘fortunate’: they had found endometriosis, treated it and I was all bright and shiny and new inside. Or so I thought. I thought I could have my life back, my body back, my intimacy, my relationship, my sense of self and my mental well-being back, surely? What I didn’t understand then was that, although I might go through periods of absolute bodily bliss, this condition is chronic: my symptoms would always return and the need for surgery would always loom close behind them needing me to push, once again, for the treatment and the care I felt I needed. Even then, though, it would take a lot more than a laparoscopy to treat the mental health impacts and the bashing my bodily security would take after another three surgeries.
Now, at 28, seven years into my journey, I have had four surgeries, now face fertility difficulties, experienced the baffling process of intimate physiotherapy and the discomfort but necessity of psychosexual therapy and am a huge advocate for counselling and cognitive behavioural therapy. For some women it can take an average of 7 years for a diagnosis of endometriosis, with its ability to hide and its reputation as a last resort diagnosis going hand in hand with the hidden mental health implications and insecurities it breeds. When my body let me down and caused me pain, it took me time to learn to cope with it, and right alongside those physical struggles were the insecurities that bloomed in my relationship when intimacy was and still is too painful. I am still learning, even now, how to cope emotionally and not feel insecure about the all too real endo-bloat amongst other symptoms. There have been times I added every new complication to my long list of ‘below-the-waist disposal’, times where I have really hated my body, and others where I knew loving my body and taking care of it had to be the priority. I had always thought of my body and my intimacy as something private, but in giving up this privacy I have managed to cope with some of my greatest challenges and now I am more open than ever. Even if I don’t feel entirely secure, I am secure enough to share my insecurities.
I may not have a sling around my womb that is my red flashing light for people to offer support, but I have learnt that insecurity has no place around my health – when I needed another surgery and time off in my fairly new job, I was very open with my boss about my condition and in return, now, when I get up from a meeting or ask for time off for a doctor’s appointment, my co-workers will ask me about my health. When it came to talking to my family about my experiences I quickly had to shed my anxieties – they were never not going to be there when I woke up from surgery, even if I was delusional and semi-naked.
When my sister sent me Lena Dunham's Vogue article on her struggle with endometriosis and decision to have a hysterectomy, I sent it to my friends, shared it with my family, read it to my boyfriend and cried at the beauty of her words and the bravery with which she stood up to her own pain, spoke about her insecurities and exercised her self-advocacy in fighting so hard to have her pain acknowledged and taken seriously. Insecurity has to, in some cases, be celebrated. For me, my insecurity taught me something was not right and I had to push doctors to take me seriously. Pain is not normal and it is not just a bad period but by listening to my own body I finally found some answers. Some days I still stand at the top of the hill, able to manage and other days I slip down and find myself facing the climb all over again, but I do not climb alone. My insecurities have opened my life up to the immense and unwavering support I have received from friends, family, loved ones and even strangers who now help me to push for myself, advocate for myself and be a part of a community where others feel supported and secure enough to do the same for themselves. Though my body leaves me feeling insecure often, I am secure in my support systems and my ability to fight for myself, and that has made all the difference.”
Thank you so much to Alice for sharing her journey in living with a chronic condition- something that is so often shied away from in the mainstream media. If your life has been touched by endometriosis and would like to get in touch with Alice, she has kindly left her email below! alicevswain@gmail.com.