Writing by Erin Visagie // photographs by Monika Kozub
After over ten long years of pain, countless doctor visits and a whirlwind of not knowing what was going on with my body, in January of this year, at the age of 22, I finally received a definitive answer to my concerns: adenomyosis and polycystic ovary syndrome (PCOS).
These conditions cause many symptoms that disrupt daily life, including fatigue, fertility issues as well as chronic pain.
Adenomyosis, often overshadowed by its better-known counterpart, endometriosis, is a condition where cells akin to the uterine lining embed themselves within the muscular walls of the uterus. This unwelcome intrusion leads to a host of unpleasant symptoms – intense bleeding, debilitating pain, and the haunting spectre of infertility. It’s a silent tormentor, affecting one in five women, yet its presence often goes undetected or misattributed.
Adenomyosis is most common in women 35 to 50 years old or in later childbearing years. This cohort of women are at increased risk of developing adenomyosis because of increased age, having had multiple births and a history of uterine surgeries like caesarean sections or dilation and curettage (D&C’s).
I am, unfortunately, one of the growing numbers of younger women diagnosed in their 20s who have never been pregnant, given birth or had any uterine surgery. There is no cure for adenomyosis other than a hysterectomy.
PCOS, on the other hand, adds another layer of complexity to my health journey. Characterised by hormonal imbalances and the formation of ovarian cysts, it adds to the challenges posed by adenomyosis. Together, they form a formidable duo, leaving me grappling with symptoms like intense pelvic pain, spotting, clots and unpredictable, lengthy and painful periods.
My journey to diagnosis was long, laden with frustration and uncertainty, countless visits to specialists, numerous ultrasounds, blood tests and finally, laparoscopic surgery to discover the adenomyosis. But even with the diagnosis, it feels like the journey is far from over.
Living with adenomyosis and PCOS is a daily battle against relentless pain and discomfort. The intense bleeding, painful periods, persistent pelvic pain, lower back pain, and bouts of dizziness and weakness often leave me feeling like a prisoner within my own body. Fatigue becomes a constant companion, draining both my physical and emotional reserves.
Despite the challenges, I refuse to surrender to despair. I’ve embraced a holistic as well as medical approach to managing my conditions, incorporating yoga, pilates, dancing, heat therapy, and birth control to manage my hormone levels and pain relief into my daily routine.
Hormonal management has become a delicate dance, a balancing act aimed at alleviating symptoms while minimising side effects. My support network includes my gynaecologist, my friends, colleagues and an important guy in my life.
Amidst the daily struggles of living with adenomyosis and PCOS, there are moments of profound strength and resilience. While the journey may be uncertain, I refuse to walk it alone. By sharing my story, I want to remind other women experiencing these conditions that they are not alone and that we are strong and we will persevere.
Vulnerability is a rugged terrain for me to navigate. The fear of judgment and the stigma surrounding women’s health issues have weighed heavily on my mind. But I’ve come to realise that true strength lies in embracing my vulnerability, finding solace in the shared experiences of others and allowing others to understand.
Opening up about my struggles is very difficult for me. Still, I wanted to share my story to enable other women to feel comfortable sharing their stories and to help create an understanding of chronic pain conditions.
Living with adenomyosis and PCOS is a journey fraught with challenges but I have resilience. Each day may bring its struggles but also offers growth opportunities, connection, and the ability to find beauty and moments of peace amidst the chaos.
