By definition, it’s a long-term condition where tissue (similar to that in the lining of the womb) grows in other places, such as the ovaries and fallopian tubes. With 1 in 10 women suffering it’s pretty common but is unfortunately hard to diagnose. The symptoms of the condition can vary, but here are a few things that I experience: chronic pain most of the time, bloating, fatigue, sickness (when in pain) and very heavy periods. Some people don’t suffer at all (lucky buggers), some people suffer pain during sex, infertility, and many other symptoms. I’m still learning to cope and deal with my endometriosis as it’s a lifelong condition with symptoms being part of day to day life.
And so my story begins…
Since I can remember, my periods have always been extremely painful, caused sickness, forced me to take time off school and have been heavy. This was awful at 11-years-old, I was very young. In year 6 at primary school we were told about endometriosis, I have 0 clue how I remember this, but we were definitely told about it or maybe it was a dream… anyway I had some awareness of it somehow and had a sneaky suspicion I had it. I was lucky in the sense that my mum had suffered painful periods and was diagnosed with endometriosis when trying to have me (I was I.V.F) so I wasn’t alone in what I was going through.
When I was around 16 or 17 things took a turn for the worse, I was in and out of hospital for suspected appendicitis, PID and many other lovely things. When results came back negative I was cast aside as a liar, but my pain was very real. I distinctly remember one surgical consultant telling me to go home and they were going to deal with someone who NEEDED their help. Little did she know my uterus and bladder were covered in painful lesions … if she knew she may have thought twice before belittling me. This shows the lack of understanding of endometriosis even in the medical world. The gynaecologists I saw still wouldn’t think twice about endometriosis as they believed that it was ‘a condition only older women get’. After numerous tests and the embarrassment of sitting in a ward full of pregnant women and each one looking at me and smirking ‘oh she must be a teen mum’ which was not pleasant.
I was finally given 3 options: the pill, to go through medicated menopause or to take male hormones with no official diagnosis … well, what a load of bollocks … yep, that’s great, change me as a person for something you’re not 100% sure on … BLOODY BRILLIANT!
Luckily my gorgeous mother believed that my pain was very real, and we ended up being lucky enough to see a specialist who agreed to do a laparoscopy (surgical procedure which is done through a small hole with a camera). I was finally diagnosed with a retroverted uterus and stage 2 endometriosis. One the one hand this was a huge relief as I hadn’t wasted people’s time, I wasn’t lying, there was actually something wrong with me. Although, of course it also came with questions of: What does this mean? Will I be able to have children? Will this last forever? These are things I am still trying to get my head round 4 years later. However, a diagnosis has allowed me to get the help and support that I need. I had 2 surgeries one for the diagnosis and one to correct the retroverted uterus and remove the lesions, both done with minimal scaring thank god (just a couple division signs, as I call them, either side of my belly button).
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| My lovely Mum and I |
Whilst the surgery was greatly beneficial to me ….
It affected my studies, with my first surgery being during what would have been my AS level year, this meant I had to retake the first year of sixth form, meaning that A Levels took me 3 years to complete instead of 2. I continually tell people I didn’t resit because I didn’t get the grades (although I came out with BCD not the finest set of grades – whoops).
For around 2 years my symptoms died down, allowing me to travel and complete my A levels in chemistry, biology and art. Even though they didn't control my life, they were still there in the background ready to pounce at any moment, especially around my period - the joys of all joys
For around 2 years my symptoms died down, allowing me to travel and complete my A levels in chemistry, biology and art. Even though they didn't control my life, they were still there in the background ready to pounce at any moment, especially around my period - the joys of all joys
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| Taken on holiday to Ubud, Bali |
However, when in my last year of sixth form and first year of uni the pain started to become unbearable again - occurring whenever and wherever. There would be days where I couldn’t leave my bed and many days at uni were missed. This sucked, I couldn’t socialise like a normal student or study as hard. Luckily, I’m at uni in Liverpool so I was able to visit an amazing women’s hospital, and I was referred to a pain management clinic in the Walton Centre where I met some amazing people! The referral took around a year till I could start my pain management course at the Walton centre applying in October 2018 and starting the course in November of 2019. I’ll do a post about the Walton centre and everything I learnt there another day.
… And now here I am trying to navigate my way through my early 20s.
I have an amazing set of friends, supportive family, wonderful boyfriend and great lecturers who just understand without asking 2 million questions.
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| My uni housemates and I |
Throughout my experience so far, I have learnt there’s very little awareness for endometriosis, not just in day to day life but also in the medical field too. So, I’m going to share my story. This will be first time putting my experiences onto paper, well digitally, or whatever the hell you say. I’ll talk about struggles and how I deal with my condition, the ups downs and the somewhere in-betweens.
Love Ottilie x