Guest post by Avalon Afriyie
Avalon was paid for her contribution thanks to sponsorship from BeYou – the brand behind the science-backed, innovative natural period pain relief patches that I know many Hysterical Women readers (plus both Avalon and me!) already use and love.
BeYou is offering Hysterical Women readers 10% off their first order using the discount code at the end of this post. Many thanks to them for their support.
When I was younger, I had a friend who was so desperately hurrying her childhood. She would preemptively wear panty liners, hopeful that each day would be the day she’d finally get her period. I can’t say I felt the same, however, I was curious about crossing the threshold into adulthood.
Womanhood held so much allure. Would I feel brighter, assertive, pretty even? Maybe I would be like the teenagers in the feminine hygiene commercials, riding a bike whilst on my period, at one with Mother Nature.
Unfortunately, journeying into adulthood wasn’t plain sailing and much less glamorous than I could have imagined. I was bought back down to earth from my expectations, spending a significant period of each month in the foetal position, doubled up on underwear, watching the world go by. I started experiencing moderate pain in my teens, which rapidly turned into blocking out days in my calendar for far less exciting events than a sun-soaked girls holiday. My body would succumb to an overarching pain, daily; a cocktail of nausea, sharp pangs and nerve spasms, running from my hips down to my legs.
Then came the bleeds. The encroaching deadline hovering over me, like monthly sentencing for a crime I didn’t commit. It would fill me with dread, its immanency sending me into a frenzy, bringing with it contractions that intensified by the day, long before the signalled drop landed in my knickers. As months passed, I grew tired from the pain and perturbed by my helplessness to it. The realisation that this was fast becoming my new normal forced me to disassociate from my body and, as a result, my mental health suffered. I’d look at women in awe. To me, they were resilient warriors who could bear the brunt of their pain, whilst donning their formal attire and going about their days. Did they wear their agony like a badge of honour?
I started to lose count of the times I visited the doctor’s surgery, only to leave feeling disheartened. On one occasion, I mustered up the courage and felt hopeful, as I had booked to see a female GP. I asked “is this normal?” to which she replied, deadpan: “Periods are painful. It’s completely normal.” It left me feeling deflated. I was a teenager, and this was an informed, educated woman whose expertise and personal experience I couldn’t contend with. I left the doctor’s office in tears and swore I wouldn’t be back.
Unfortunately, that promise was short-lived as the pain would return, leaving me with no choice but to seek medical attention. I would visit A&E, where the sight of visibly injured people in critical conditions pushed me further into my cocoon. After waiting for 5+ hours as a low priority patient, desperate for some form of relief, I’d be sent home with over-the-counter medication and little to no explanation.
The doctor who finally suggested the likelihood of endometriosis probably saved me from infertility. I was perplexed, hearing this obscure sounding condition, yet I checked all the boxes. Ovulation pain, tick. Painful periods, tick. Heavy bleeding, tick. Finally, in 2015 – aged 24, and 8 years after my symptoms began – I found myself in an oddly exposing hospital gown, staring back at my sullen reflection in a mirror. This was it.
I was barely conscious in the recovery room when I probed about my diagnosis. I sighed a huge sigh of relief with the pressure that had been mounting in my heart for almost a decade. Knowing I had endometriosis was the validation I longed for. Just knowing I was really ill restored my sanity, which had crumbled to pieces in the diagnosis process.
The conversation with my gynaecologist the following morning is forever etched in my memory. “Now, you may be able to have kids.” The words left his lips so nonchalantly, he could’ve been referring to the weather. It left me in shock as, up until that point, I hadn’t questioned my fertility. I felt betrayed by my body and the professionals who had failed to recognise my pain. All the years of denial had given this disease free rein over my body – my organs had fused and endometriosis was detected in front and behind both my ovaries, uterus and bowel.
Post-op I was put on hormonal treatments, Microgynon and Depo-Provera, both of which had detrimental effects on my mental and physical wellbeing. Although I expressed concern about the side effects, the fear of being discharged loomed heavy over me, as I had fought so hard to be at this point. I was exhausting my options and would be withdrawn support if I didn’t comply with the limited treatment options available, regardless of the effect on my body.
My last shot (quite literally) was Zoladex. A monthly implant containing a slow-release hormone was administered into my lower abdominal wall, inducing my body into a menopausal state, but it came with its challenges. Second to hot flashes and insomnia, my breasts started to grow at a rapid speed, as if they were competing in the Olympic Games. I was now above an L cup, with disordered eating, which as you can imagine was a shock to the system. I was unable to fit into bras in specialist lingerie shops, least of all sleep comfortably, or keep fit. Endometriosis had once again gotten its greedy clutches on my life.
Fast forward two years, boobs in tow, and I’m back on the operating table for my second laparoscopy. As it turns out, endometriosis finds me quite the hospitable host, as it’s nestled in the same places as my initial diagnosis. Shortly after, in 2019 it was time for another procedure. This time, reconstructive breast surgery. Due to the excess of breast tissue gained on Zoladex, a free nipple graft was my only option, meaning that if I’m fortunate enough to conceive, I’ve lost the ability to breastfeed. So now, in addition to my endo scars across my abdomen, my chest too is adorned with scars reminiscent of my journey to date.
The irony isn’t lost on me that the experiences of endometriosis are synonymous with pregnancy. From sickness and nausea to awaiting an ultrasound, in a room full of pregnant women, with nothing more than a belly full of water pushing down on my bladder. Or having the sonographer smother cold gel on my stomach, and wondering if someday I’ll be back under less sombre circumstances.
Living in pain is no mean feat and, although the intensity ebbs and flows, its permanency has instilled itself as a backdrop to my life story. We’re very seldom taught about the in-betweens in life, like finding yourself on the periphery of health, where you’re not terminally ill, yet you’re dying of pain. No one teaches you about health, contingencies and how to co-exist with pain, in the unfortunate event that your life takes a 360-degree turn.
Pelvic pain interferes with my ability to do everyday activities and I miss the mundanity, like hoovering the house top to bottom, to the backdrop of the radio. My mental and physical health have become so complexly interwoven with one another that trying to navigate life around this condition is a daily struggle.
Life as I knew it ceases to exist under the weight of living with a chronic condition. It’s been a grieving process. I’ve had to mourn for the life I thought I would have, and what I conditioned to believe was my rite of passage as a woman. But, in doing so, I’ve paved the way for a more intuitive lifestyle and become acclimated to that, instead. I’ve learnt that, to thrive with this condition, acceptance is a fundamental step towards living a more fulfilled life. I’m living a life I might not otherwise have known, with a level of empathy one can only gain by going through hardships.
Due to the adverse effects of hormonal medication, I began research into holistic and homeopathic treatments, as a way of managing my pain. Name a remedy, I’ve tried it: from the anti-inflammatory diet to acupuncture, Ayurveda, supplements, TENS machines, physiotherapy, and umpteen magnesium soaks. All of which are worthwhile, even if for momentary relief.
Like many people across the globe, I am eagerly awaiting a cure for endometriosis, but the reality is that reproductive health is grossly underfunded. I hope increased awareness of the condition will lead to further research, resulting in medications varying from hormonal to non-hormonal, increased prominence of excision surgery, and that a holistic approach to treatment will be integrated into patient care.
If I have one piece of advice for anyone who finds themselves in a similar predicament, it’s to trust your intuition. You know your body better than anyone else ever could. Every twinge, or ache is your body communicating something to you. Embrace your body tightly and with compassion, knowing the strength it takes to fight for you every day. You’re so much stronger than you know, mind, body and soul.
You can find Avalon on Instagram @writtenbyavalon
Founded by siblings Kru and Hems, BeYou is not just about creating science-backed, innovative natural products; it’s a means to empower through positivity and unity.
Their flagship period patches, CBD range and other products aim to encourage dialogue, while each purchase helps BeYou to invest in bridging the gender and racial gap in medical research.
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