Endometriosis is an excruciating and debilitating condition. I can say this now at four years diagnosed and 14 years symptomatic. But at 22, I had pretty much accepted that the horrific periods I had experienced since the age of 12, leading to hospitalisations and academic deferrals, would just be a constant part of my life. It wasn’t until I was talking to a former school teacher-turned-friend, that I was encouraged to keep pushing to be heard, because as she says, “period pain shouldn’t stop your life”. But I had been told, repeatedly, that ‘some women get it worse’, ‘it can take eight-10 years for periods to regulate’, and that ‘period pain is normal’.
Aside from the frequency of the pain, and the hormonal mess they produce, there was also the very real possibility that I wouldn’t be able to work regularly because of the irregularity of my cycle. Although in my early twenties I had a brief grace period of dampened symptoms, they came back with full force. Though this time I was depleted, I was also insistent and luckily was quickly referred for an ultrasound; my previous doctor had scoffed at my request for further investigations. The scan showed that I had an endometriotic cyst on my left ovary, that would fill with blood whenever I menstruated. Later it was confirmed that I definitively had endometriosis, and so began my treatment process.
This chronic condition has become a much-needed talking point in the last 12 months, and rightly so given that it reportedly affects 1 in 10 women of reproductive age. However, given the dearth of understanding around the issue, and the lengthy average diagnosis time of 7.5 years, the figure is believed to be much higher. Endometriosis is when the womb lining (endometrium) breaks down during menstruation and, travels throughout the body. Whilst this tissue usually remains around the uterus, it can also be found farther afield. It also continues to inflame as it would during menstruation, causing severe pain. Additionally, painful sex can be a by-product due to this inflammation, and the prevalence of endometriosis in women with infertility can be as high as 50%. Moreover the forming of cysts from tissue which has adhered to other organs, and the fusing of organs from inter-organ tissue build-up, also causes severe pain. This, is what happened to me.