Ask any woman about the horror of period pain, and she will definitely vouch for its distress. It’s a kind of unfortunate misery that’s made bearable only by the fact that it surfaces once a month, but what if those mind numbing cramps were something you lived with 24/7? For Jayde Balderston, this nightmarish thought is a painstaking reality and at just 31 years old, is about to undergo a full hysterectomy in a ninth surgical attempt to fight the endometriosis she’s been living with since the age of 11. With endometroisis awareness month just around the corner, we thought there was no better time to catch up with Jayde for some real talk, in an effort to abolish any preconceived stigmas and get the conversation started.
Occupation: Founder and Managing Director of The Grey Consulting, a PR and Communications Specialist Agency, and Trainer at The Fashion Institute – Major in Public Relations
In your words can you describe endometriosis?
Torture. Endometriosis is present when the tissue that is similar to the lining of the uterus occurs outside this layer and causes pain and/or infertility. The lining layer is called the endometrium and this is the layer of tissue that is shed each month with menstruation or where a pregnancy settles and grows.
How old were you when you were first diagnosed?
I was officially diagnosed at 18. My history shows that I have actually been living with endometriosis from the age of around 11 or 12.
When was the first time you realised something was really wrong?
I was a child who was often in pain, complaining of stomach aches, pains, difficulty going to the bathroom, but the issue was that no medical professionals believed me. My parents were wonderful, taking me to multiple GP’s and specialists – I recall a male doctor sticking a tube up my bottom when I was in high school, but there was a strong belief I was a lying, attention-seeking, hypochondriac. And I was still in pain without a diagnosis.
At 18, my first term of uni, I called mum to see if she could book me in for my first Pap Smear. I had an odd internal sensation, nothing you could actually feel, but it was ultimately my mind and body telling me something was wrong. The results were there for everyone to see and finally I had a diagnosis, a real reason for the years of pain I’d already endured.
What were some of the symptoms you were experiencing?
I have had ‘pains in my stomach’ since I can remember. Consistent, constant pain. Also since I can remember, going to the bathroom had been an agonising challenge. I have also suffered from Chronic Fatigue, Irritable Bowel Syndrome and at one point I had Type 2 Diabetes (due to Polycystic Ovary Syndrome – that’s another story). Periods have never been anything but searing . Simply I’m living with chronic pain.
Once you were diagnosed what did the treatment plan look like?
Apart from surgery – I’ve had 8 (I think) so far – there’s no known cure. The surgeries deal with the pain for a while, but then it always comes back. I am having a full hysterectomy in March as a final fight-back against endo (not an ultimate cure for everyone – you must seek out professional help, and make sure your endo specialist/surgeon is an excision specialist!). I also have unrelated (as far as I know) cervical cancer, for which the treatment is the same – full hysterectomy. I finally hope to be pain and endo-free in coming months, all going well.
What are some ways that endometriosis affects your life?
It affects me in every way because the pain is always there, and I’m always dealing with it. Yes, I have to think about it every day and how I’m going to get through what’s in front of me. But, until now that I’m telling my story, you’d have had no idea.
Has it ever stopped you from doing anything?
I never allowed it to. That’s just my personality. I would do everything – every breakfast, dinner, every party, wedding, christening and work event, because I felt for a long time this was my problem and I just didn’t want to let anyone know or let anyone down. I don’t just take a day off due to pain, I’m too used to it. I’m learning to take a break when I need to (learning). But I’m most looking forward to not having to think about it.
1 in 10 women are living with endometriosis, why did you keep your condition a secret for so long?
I was always so afraid that it would affect me professionally. That was a key driver in keeping it very close. My career is my baby and means so much to me – I thought I may lose it if people knew what was going on. Would I be reliable, would I be flakey and ‘sick’ all the time? When discussing this point with a doctor of mine the other week, she pointed out that I’ve done my time, proven my strength and have shown I can continue to work just as hard and passionately as I always have… And will continue to!
What was the final straw that made you speak out?
The fact it’s been going on for so long and I’m now maybe at the stage in my life where I’m wanting to take some control, create some good out of what’s been happening to me. Also, so many women are living with the disease – many secretly – and I want to let as many people as possible know they’re not alone, to reach out and get as much help and knowledge as you can.
Has opening up the conversation changed your life in any way?
It’s made me understand there are so many people out there suffering from their own problems, whatever they may be. We have the opportunity – thanks to online platforms – to reach out to other people, offer support and hopefully reduce suffering just through understanding and contact. Probably the most important – it has allowed me to fully accept that this is what I have, what I’ve suffered from, and can now take action on.
What has the response from others been like?
It’s been sad and beautiful at the same time. I’ve had so many messages of support, so many people saying they loved my story and it had a positive effect on them, or they were going to share it. It’s wonderful to see some good come from my endo story.
Why do you think it’s so important to encourage women to get these types of conversations started?
There’s strength in community – it’s all about information, education and support networks, especially for people who struggle to form their own. This conversation can also assist women to find the right help, which suits and works for them. So many people are misinformed (I was one), and the more we share our stories, the more people can find the best and most targeted professional help. Just like how we seek out beauty reviews, to find our fave product
Also, I want the stigma removed. Period pain (and linked pain) is hopelessly inadequate in describing the true red-hot-coals-in-the-stomach, lying-on-cold-tile kind of pain.
What advice do you have for women reading who are living with endometriosis?
Listen to your body. Trust yourself. Your pain is real, it affects your life and, with a good team around you, you can manage it. Every case is unique. Arm yourself with knowledge (there are amazing professionals out there), friends, and love. Be kind to yourself. Love you. And make sure those around you understand what you live with every day, it will make their lives easier, too.