Looking back I realise now that I've probably had Endometriosis since not long after my periods first began. I was aged around fourteen or fifteen years old when I started to experience intense pain before my period and extremely heavy bleeding throughout.
I remember being at High School and my period pain being so intense that I would have to ask to be sent home often. I recall nearly passing out in the middle of a French class and having to embarrassingly mumble to my teacher that it was my period and I had to leave - we didn't talk about periods much in the 90's!
I have a horrid memory of being about 16 years old, curled up in our downstairs toilet, sobbing so hard and with sweat pouring off me, I was almost blind from pain and so confused as to what was happening to me, I thought I was going to die there and then. Our emergency doctor told me it was just normal for periods to be painful sometimes. Sheesh, haven't I heard that one a few times?
I was put on a birth control pill around the age of 17 years old and I stayed on it more or less all of my young adult life. Being on the pill meant my pain was greatly reduced and the monthly pain cycle was broken enough that I could function, I could do exams, have a part time job, have fun with friends, my pain felt 'normal' again. Doctor's prescribed Mefenamic Acid to reduce heavy bleeding and I got through my University life largely unscathed by a disease that I didn't even know I had. It wasn't long after this that my health started to take a turn for the worse.
Whilst I was working in my first post-Uni job as graphic designer I began to experience intense pains sporadically throughout the month. Bleeding had become heavier again between pill packets. I would feel fatigued at random points in the day and feel an overwhelming urge to lie down and rest, this became worse after eating meals.
I no longer enjoyed going out for drinks or meals as I would start to feel exhausted by the end and it would inevitably lead to a night of excruciating pain involving me writhing around my bathroom floor alone once I got back home.
I started to shut myself off from my friends and family, I made excuses not to go out to meet them. My bowel was causing me no end of trouble, and at one point I swear I knew the location of every accessible public toilet in the whole of Glasgow City! I was scared to leave home, I hardly ate because it seemed that pain would kick off after everything I tried, I was caught in a circle of anxiety that left me miserable, cut off and with no clue of how to move forwards with my life. IBS was diagnosed initially, leaving me to seek out information myself wherever I could on a taboo disease that hardly anyone was talking about.
I had unsupportive employers at the time who pushed me to return to work, when I very clearly wasn't ready, only to make me redundant a few months later, well wasn't that just the kicker.
So that's when I finally made the decision to become self employed, no-one would be pulling the rug from under me apart from myself from now on!
After a whole 12 months of pain, fatigue, anxiety, depression and two trips to A&E, after tracking my diet endlessly, major relationship problems, going for X-rays, CT scans, trying alternative medicines, and blood after blood after blood test, the doctors decided I had a tiny gallstone that must have been getting stuck in my bile duct. We all agreed I should have my gallbladder removed to resolve the problem.
This was to be the first of three surgeries relating to these ongoing issues and also the first where I lost an organ, but it wouldn't be the last!
If you would like to find out more about Endometriosis you can check out the links below that I have found useful through my own experiences.
Beating Endo - I found this book really useful when looking at ways I could take control of my symptoms and to help me form a path to living with Endometriosis.