Living With Endometriosis – What I’ve Learnt Along The Way

My name is Abbie (@cheerfullylive) and in May 2019 I was finally diagnosed with endometriosis after a 9 year battle with pain. 

If you aren’t aware, endometriosis is a chronic and debilitating condition where cells similar to the ones in the lining of the womb are found elsewhere on the body. These cells breakdown and bleed, causing painful periods, as well as possible infertility, fatigue, bowel and bladder problems, as well as many other symptoms.

Living in pain

I can remember the first time I had severe pain was about a year before I had my first period, it was absolutely terrifying and things only got worse from there. My periods started when I was 15 and month by month the pain gradually became more debilitating until I could no longer get out of bed or go out and do normal activities. I would miss school, university and even work, but yet my pain and symptoms were just deemed as normal period pain. I was told repeatedly that “I just had a bad period”, “I had a low pain threshold” and “it was just something I would have to endure as a woman”. Even when I was having fainting episodes and vomiting due to the excruciating pain I was getting between periods, I was just told I had a bad UTI, despite having no bacteria on my cultures. However, because I was being told this was normal, I genuinely believed it was and put up for it for many years of my life.

It was only until my pain became chronic in December 2018, that my health was investigated fully. After going backwards and forwards to my GP, A&E, urology and gynaecology, I was sent for an MRI in April 2019. After so many years of believing this pain was normal, I didn’t expect my MRI to come back with severe endometriosis adhesions all over, but it did. I was immediately booked in for an appointment with an endometriosis specialist consultant who told me he could see on the MRI, extensive endometriosis on my left side of my pelvis, my left ovary and my bowel (sigmoid colon) being attached to the back of my uterus. I was also told that it was highly suspected that endometriosis is growing on my bladder, my kidneys and on the right side of my pelvis also, but only this will be known until I have surgery.

Managing my endometriosis

It’s been over a year since I was diagnosed and I’ve tried so many different things to help with managing the pain. I’ve gone from being on the combined pill to the mini pill to extra hormones on top of that, coming off those extra hormones, deciding to go on the waiting list for excision surgery, taking different painkillers, trying yoga and gentle exercise, hot water bottles and TENS machine to trialling sacral steroid injections! It’s been a long, hard journey and there are definitely still many difficult days, but I seem to have found a few things that have personally helped me along the road.

I thought I’d share with you the things that have helped me manage my endometriosis: 

• Making the decision to have expert excision of my endometriosis, even though I’m still waiting for a date, being able to make an informed decision with my consultant made me feel empowered and like I was able to have some control over my endometriosis and how much it affected my life. 
• Being on the mini pill is something that has helped me, as I no longer have periods anymore, which reduces the debilitating monthly pain and anxiety that comes with it. However, I understand that hormones are a very personal choice and you have to do what’s right for YOUR body. 
• Investing in a hot water bottle or a heat-pad, as well as a TENS machine has really helped me manage my everyday chronic pain. 
• The support of a pain team and having the opportunity to try sacral steroid injections, which for me, really gave me back my life! They reduced my pelvic pain drastically and it enabled me to start investing more time into my blog, being able to do Instagram and content creation as my full-time job!

Despite the struggles I’ve faced and the pain I’ve had to endure whilst living with endometriosis (Myself and a fellow Endo warrior wrote a powerful blog post on “What Endo Means To Me”. I’m very grateful for all the positive experiences that have come out of this journey – I started up my own blog, enjoyed being creative on Instagram and found an incredible community of #EndoWarriors! 

You can find me over on my blog at www.cheerfullylive.com or on Instagram at @cheerfullylive www.instagram.com/cheerfullylive. I’m always open to having a conversation around women’s/period health, pelvic pain or endometriosis! Let’s break down the stigma and have more of these conversations!