I was 13/14 when I started having periods. I only knew about it because my sister had started before me, and we briefly touched on it in school, but it was such a taboo. Girls in my school were bullied for having their periods I started to realise something wasn’t right when I was 18 and started uni.
I would have horrific period pains and felt like I couldn’t walk. I went to the GP and she initially gave me contraceptives and left me at that. I then worsened a few years later when I was fainting, vomiting, having heavy periods, sickness, all things that shouldn’t be associated with a period. All things that should be red flags to say something is wrong. I kept going back and forth to the GP, but kept being told everything was normal and my periods were normal.
I was formally diagnosed when I was 27. I had a trans vaginal scan and endo showed up. I then had an MRI and a diagnostic laparoscopy to confirm. I broke down when I was told I had endometriosis. I didn’t know what to expect, but I wasn’t expecting to have an incurable disease, a lifelong disease, one with so many unknowns. I’ve had four surgeries for my endometriosis, and it came back within ten months. It’s relentless and felt never ending.
Acceptance has been so hard. Ihave an ileostomy because of endometriosis, my whole appearance and how I see myself has changed. I’m fortunate to have amazing family and friends around me who have helped me through my hardest times. The only thing I can is embrace this change and I’m atrue believer that everything happens for a reason. I’m also fortunate that my ileostomy has enabled me to be the healthiest I have been in years and to do things I struggled to do when my endometriosis was at its worst.
I wasn't expecting to have an incurable disease, a lifelong disease, one with so many unknowns.
All the emotions possible I experienced. You get a feeling of relief at being validated but then being terrified at surgery, medication, hormones, menopause, now knowing what’s coming next and how it will affect you. You experience the thought that surgery will bring you relief and will take it all away but that’s not always the case.
Fertility is a massive one as well. No one can give you a definitive answer about fertility and it’s heart-breaking to feel like you’ve been left in limbo.
I was gaslighted on my journey. I was told to have a baby at 25 believing that would cure my endometriosis. I was told that endometriosis was common for people of my ethnic group and was common because I was young. I was never told that I’d be getting an ileostomy, I woke up with one completely shocked. No one ever told me about how serious this disease could be.