Every month I dread my period. My mind becomes consumed with worry of what I will encounter. Will it be early or late or not come at all? Will I experience extreme fatigue, uncontrollable mood swings, or debilitating pain? Each month I am met with suffering that has still not been given a definitive name, despite having symptoms of reproductive health conditions since the age of 14.
However, speaking to other women, I have realised I’m not alone. This is extremely common. Across the globe, millions of women are coping with a myriad of multifaceted and complex reproductive health conditions such as endometriosis, in which tissue similar to the lining of the uterus, grows outside the uterus, or polycystic ovary syndrome (PCOS), which is a hormone imbalance leading to irregular periods. In the UK alone, endometriosis affects one in ten women, according to Endometriosis UK, and PCOS impacts one in eight, according to Verity UK. But the question that has remained for decades is, if these conditions are so common, why is it nearly impossible to be diagnosed?
On average, it takes 7.5 years to be diagnosed with endometriosis, with the diagnosis journey shrouded in ambiguity and overshadowed by misinterpretation. This prolonged wait takes a toll not only on our bodies but also on our lives especially mentally. One student I interviewed has suffered from extreme period pains – “heavy periods, faint[ing], and feel[ing] sick” since she started her period at the age of 11. When she was finally diagnosed with stage four endometriosis, she was told that it had caused distortion in her anatomy and was acting as an adhesion by sticking her ovaries to her womb. The condition threatened her fertility, as there is the chance of needing an emergency hysterectomy (womb removal). Having the possibility of losing the ability to have children without it being her choice “was really scary” and a big part of her worries and apprehensions of the surgery she had to undergo. This shows that beyond the physical, the toll on mental health cannot be overstated. Anxiety and a sense of helplessness become unwelcome companions in this journey.
Again, this student is not alone – another’s struggle to be diagnosed with PCOS also mirrors the diagnosis challenges. It has resulted in her “hormones [being] all over the place” due to having irregular periods and her struggle with acne has destroyed her self-confidence, making her feel awful and very reclusive.
Moreover, during my period, I become so drained from pain or from being extremely tired that I miss out on time with friends, my university classes, and work. It completely wipes me out from my everyday life and has left me in a vicious cycle of suffering, then recovering and repeating, which in itself is exhausting. So why is it that we have all endured years of physical and emotional toll on our lives yet a haunting absence of answers still looms over us?
One of the main reasons is that despite the numerous visits to healthcare professionals, misunderstanding and societal stigmas surrounding women’s health concerns still persists and this leads to delayed medical intervention. This was the case for one student when she was trying to rebook a scan after having her initial ultrasound cancelled during the COVID-19 pandemic. Not only did she experience a constant “condescending attitude towards PCOS”, but she was also lied to by medical professionals who said “ultrasounds aren’t used to diagnose PCOS”. They ultimately cancelled it without another word or follow-up appointment. As she said, this “messy experience, lacking in a lot of empathy” results in a prolonged diagnosis journey and erodes women’s confidence in the healthcare systems. This prevents women from trying again to get closure.
Women are fighting against a culture of disbelief every time they enter a doctor’s office, resulting in the diagnosis journey being full of shame and humiliation. Another student I interviewed, who had been diagnosed with endometriosis, stated explanations of her symptoms were always met with “it’s just part of being a female”. The dismissal of symptoms as manageable discomfort pervades this culture. In addition, years later when she finally got referred to a gynaecologist, they discredited her symptoms and misdiagnosed her as supposedly having an STD – pelvic inflammatory disease. But she knew her body and was aware that this was not the case. While it is true that reproductive health conditions can be difficult to diagnose due to symptoms often overlapping or masquerading as other ailments. It becomes an extremely isolating journey when healthcare professionals mainly hold dismissive attitudes toward women’s pain and offer us no ounce of validation or recognition.
However, the disheartening attitudes do not account for all healthcare professionals. Take the student who has been diagnosed with endometriosis as an example. After the first doctor misdiagnosed her and made her feel uncomfortable, she sought a second opinion. This doctor “was a stark contrast” to the first one.
“She really advocated for me and I felt really listened to…she was like, you have a right to be mad and angry about this, this affects your life and that’s not ok, we should be doing something to help you, and that made me feel a lot better about the whole situation,” the student said.
Now insured by a written diagnosis, her everyday life is more manageable. She has gained a sense of security knowing that in any future medical visits, she will be listened to and taken “a bit more seriously”. This is why getting a diagnosis matters. While reproductive health conditions lack cures, the right diagnosis paves the way for suitable treatment. It is about alleviating symptoms and enabling us to live our lives.
The urgent need for change is crying out through every untold story and every prolonged suffering. Elevated awareness and education about these conditions within the medical sphere and in the general public are paramount. Improving access to specialised care, advocating for early intervention, and investing in research for more accurate diagnostic tools are crucial steps toward shortening the diagnostic process. Empowering women to advocate for their health and ensuring their concerns are heard and validated are pivotal to diagnosis journeys.
As one student put it: “you really have to advocate for yourself, and if you don’t feel like something’s right, then nine times out of 10, you’re right. We know our bodies more than someone who prods you and sees you for five minutes.”