Leanda attends our Bristol support group and has a wide range of experience of endometriosis. She has suffered the effects of endometriosis for thirty years, and wasn’t diagnosed until she was 27. Leanda talks below about the impact of endometriosis on her mental health.
“My second period, at the age of 12, absolutely terrified me. Surely this new monthly torture, wasn’t to be the new norm. Back in those days, no-one discussed their periods, not even my mother who had equally horrendous periods. I used to look at other girls and wonder how they coped so well with their periods as I suffered, withdrew and barely survived mine. I was even told, in the playground that I made such a fuss around my periods.
It took until I was 27 to officially be diagnosed. My first operation was investigative and a turning point. The years of pain and suffering could be explained by the diagnoses of severe Endo, and I finally started to talk about my condition and educate my family and friends.
What no-one tells you, when you get the endo diagnosis, is how much you will have to struggle. I struggled with endo throughout my university education. When I should have been working on projects, I was doubled up in pain or exhausted. It endured into my early steps into the workplace in London, where I engineered the worst days to be over the weekend, so that this invisible disease was even more camouflaged. Looking back endo has affected many decisions I have made.
As for my mental health, I have endured some incredibly dark episodes in my life. Imagine feeling that even your body is against you. It’s an invisible disease where people wrongly believe that surgery cures you and even you get bored of hearing the words “Sorry I can’t come, my endo has flared up”. It’s a topsy turvy condition, where most sympathy and concern comes after an operation but where you experience most pain and distress before. It’s no wonder coping with the symptoms can bring you down.
As a result of my endo journey, I’m pretty low maintenance. Simple things, like spending time with friends or a walk in the country make me happy. I’m extremely selective about how I spend my time as I don’t believe in wasting time on things that I don’t want to do; my life and good health is most important.
Even though I wouldn’t wish endo on my worst enemy, I have grown to accept that it has made me who I am. I have amazing resilience as a result of my numerous episodes of suffering and I’ve also built up a network of supportive friends who make life better for me. Most importantly, talking about endo have really developed my communication skills, which has helped in so many ways. Although, given a choice I would change the endo if I could, I wouldn’t change me for the world.”