Living with Endometriosis?
Hello! Robyn from Newtownards here and I have endometriosis… among other conditions. It’s extremely painful but to look at me you’d have no idea what I go through on a daily basis. To help other women in Northern Ireland like me I wanted to share the story behind my endometriosis. More than 25,000 women in Northern Ireland live with this condition. I’d like to let people know that whatever you’re battling, you’re NOT alone!
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.
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.
Living with a 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.
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.
Committing 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.
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!
“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.”
Robyn’s Tips For Coping With Endometriosis
Advocate for yourself
Listen to your doctor but take responsibility yourself for finding the therapies that work best for your body.
Physiotherapy very useful in understanding the effect pain has on my body and learning how to keep my muscles relaxed.
Belong to an unofficial support group of women with endometriosis. We chat on What’s App and meet for coffee regularly.
Try an electrical heat pad
It’s better than a hot water bottle as it has different heat levels and turns itself off after a certain amount of time.
Keep a diary
Recording exercise, food intake and pain levels every day can help you to work out if certain things make your pain worse.
Taking it day by day
Five laparoscopies, one bladder operation, many doctors’ visits and 16 years since the pain began, I’ve got my life back a bit – but I’ll never be cured. Endometriosis just doesn’t go away.
Like anyone with chronic pain, I have my good days and bad days. But I know what’s important now. I don’t care if I haven’t got make-up on – some days just getting out my front door is a win!
In the meantime, I use the cuddly organ toys (a bladder, a uterus and an ovary) in the picture above as conversation starters. It’s weird being known as the girl who will talk about her uterus with anyone – but I’m okay with that!
Northern Ireland is a conservative society and I know some people hate my frank approach. But we need to have less stigma when it comes to talking about our bodies and I hope sharing my story will help.