Living With Endometriosis - What Is It Really Like?

What is Endometriosis?

Endometriosis is when the tissue that lines the uterus (womb), called endometrium, grows outside of the womb. It causes internal bleeding and scarring. Find out more about the symptoms here.

Along with endometriosis, I also live with interstitial cystitis (inflammation of the bladder) and gallstones. Basically, my abdomen hurts all the time. And although it doesn’t stop me from having a life, it’s extremely hard to cope with.

Diagnosis takes time

My symptoms started at the age of 13. From my first period, the pain was so intense it would make me collapse and I’d have to be sent home from school.

As I got older, my daily pain increased. But I was told that it was just ‘growing pains’. Because you couldn’t see my illness, some people thought I was doing it for attention. It was hard to recognise that what I was going through was different.

My second year as a History student at Queen’s University was my worst time. I had to give up choir practice – even though I’ve always loved to sing – because I was so drained by constant tummy pain.

I was 23 when I decided I’d had enough. My mum had struggled with endometriosis so I knew I had the symptoms too. I asked my GP to refer me to a specialist and that’s when I was diagnosed. It was a relief because it meant I wasn’t crazy!

But I was also terrified because I didn’t know what the future had in store. I’m quite a career-driven person so I swore then and there I wouldn’t let it affect my education.

I committed myself to find the right treatment to ease the pain from my endometriosis and let me continue doing the things I loved.

Searching for a pain-free life

A common treatment for endometriosis is surgery. The surgery is called a laparoscopy and it doesn’t cure you. It removes endometrial tissue and lesions, but they often come back and then you need another operation.

I took this selfie before my last surgery. My uterus (womb) and colon (bowl) had become stuck together with scar tissue and I needed an operation to separate them.

I might look okay, but having surgery is scary. Before every operation, I re-read the entire Harry Potter series of books. It takes me into another world and calms me down.

Along with surgery, I’ve taken regular doses of painkillers since I was 20 to keep the pain at bay. I have pelvic floor physiotherapy to relax my muscles and lessen the pain. And I find an electrical heat pad is the best thing to ease tummy cramps.

Despite these treatments, my life isn’t what I imagined it would be and I have days when I feel sorry for myself. I wish I could be more active and do dance classes or go swimming but endometriosis is really exhausting to live with.

Thankfully, my mum has been a great support and I’ve got good friends who send me care packages and funny Facebook pictures when I’m going through a bad spell.

I’ve found a sense of purpose through my studies. And guess what? I completed a History PhD and won a national research prize with endometriosis – so anything is possible!