I'll be honest, this post has been sitting on my "to-write" list for over a year now. Endometriosis is something I've always wanted to talk about because I wholeheartedly believe that not enough people are aware of what it is and the impact it has, but also because it's such a huge part of my life and has been for over five years now. Despite wanting to share, I never quite knew how to put my feelings into words, so it kept getting pushed back further and further until a whole year had passed. March is Endometriosis Awareness Month, so it felt like a good time to share my story and shed a little more light on what endometriosis is.
One in ten women are affected by endometriosis, whether they realise that or not, and a result they suffer from debilitating pain that impacts their life in a number of ways. This pain is caused by cells like the ones found in the womb grow in areas where they shouldn't, with growth being stimulated by the hormones released throughout the menstrual cycle. Endometrial tissue acts in the same way as the cells in the womb, except that when they break down and bleed during the menstrual cycle it can't escape the body, causing inflammation, scarring, irritation, cysts and many other symptoms. There's no known cause, but the effects can be devastating, with endometriosis causing chronic pain, fatigue, depression and fertility issues to name just a few.
I'd always had painful periods, and since the age of 14 I'd been prone to ovarian cysts, but I'd never seen it as an issue until I was about 16 when I ended up experiencing the toughest seven months of my life. After staying at a friend's house one night I'd ended up with quite a sore back, which I put down to sleeping in an unfamiliar bed, but when the pain didn't ease after a few days I visited my doctor and was considered to have some sort of urinary tract infection. Soon after, the pain had spread through my abdomen and was so crippling that I'd lie on the bathroom floor or curled up in my bed praying for it to end. At this point, appendicitis was assumed, and I was rushed to the hospital for ultrasounds and blood tests and observation. The next day I was discharged with no real answers, apart from the assumption that an ovarian cyst had burst and was the cause of my pain. The next seven months followed a similar pattern of being bed bound for days at a time, with weekly hospital admissions, countless blood tests and ultrasounds becoming a regular occurrence. My school attendance was dismal, as I could very rarely muster the energy to make it in, and my mental health suffered as a result. My school were unsupportive at best, "friends" who didn't understand assumed I was just lazy and my relationships were put under an unreal level of stress for a scared sixteen-year-old. A lot of those friendships didn't recover, the lack of support was hurtful and that's something that still affects me now.
Infographic from Endometriosis UK
Towards the end of January 2012, on one of the rare days I managed to make it into school, I was struck with a whole new level of pain and ended up being rushed to hospital in an ambulance, again under the assumption that it was appendicitis. After another round of ultrasounds and blood tests, the decision was made to perform a laparoscopy (something that had been mentioned the very first time I was admitted to hospital) which is a minor surgery involving a scope being inserted into the abdomen to look for signs of conditions like endometriosis. This surgery showed scarring and the remnants of a burst ovarian cyst, but I wasn't formally diagnosed with anything at this stage. To this day, I still suffer from chronic abdominal pain and have had a number of different investigative procedures with the aim of finding a cause. I had a second laparoscopy in November 2015 where endometrial tissue was discovered and removed, which eased my pain slightly but did not eradicate it completely. The only way to diagnosis endometriosis is through a laparoscopy, but even then it can still be missed.
The thing is, though, I'm actually lucky. My endometriosis experience has been far from a walk in the park, but it could have been so much worse. I've learned to deal with the majority of my pain so that I can live a relatively "normal" life, but I do have my limits. I have flare-ups which leave me exhausted, my periods are an absolute nightmare at best, and hormonal migraines are a regular occurrence. I'd be completely lost without the pill, and as much as people slate it, it's absolutely changed my life. There is no specific "cure" for endometriosis, and there's no way of telling what impact this is going to have on the rest of my life.
One of the most difficult things about endometriosis, for me, is the loneliness. So many people don't understand the condition or how it can impact someone's life, so I guess that's the whole reason I'm sharing this. I cope okay for the most part, but like I said I am so lucky in that respect. It takes an average of 7.5 years to reach a conclusive endometriosis diagnosis, but this needs to change. It's the second most common gynaecological condition in the UK and a diagnosis can be life-changing. You can read more about the symptoms of endometriosis here.