MARCH IS ENDOMETRIOSIS Awareness month, but it’s only been in the last three years that I’ve been really aware of this disease. Before that, I was aware of it, but I didn’t really know what it was.
Endometriosis is an invisible disease that does its damage on the inside, leaving deep physical scars and significant psychological ones.
When asked what it’s like to live with this disease it’s hard to answer. There are a lot of things in life you can’t really imagine until you actually experience them yourself: that first bite of sushi, the adrenaline rush of parachute jump, the exhaustion of having a newborn in your home.
Imagine a permanent stitch in your side during every activity, a giant blister on your foot that you feel with every step you take, things people can’t see but you can certainly feel.
The symptoms
Endometriosis causes pain and discomfort, constipation and diarrhoea, nausea, fainting, muscle ache, bloating and heavy draining periods. It’s a real giver.
While I’ve always had heavy periods with strong pelvic pain that was difficult as a teenager and more pronounced in my early twenties, it’s really been in the last five years that it has become ever present.
In 2014 I reached an all time low when I found myself lying on the bathroom floor having fainted from pain. From there started a battle to find out what was going on.
Getting a diagnosis
Following a number of visits to my GP and various consultants, I realised my options were: the pill, the coil or getting pregnant (which is not a solution). It seems there was no point investigating further until I started trying to have a family.
That is phenomenal pressure and it put a great strain on my relationship at the time. The consultant who finally performed a diagnostic laparoscopy in 2015 acknowledged that psychologically I needed to know what was there.
While getting that diagnosis doesn’t bring much in the way of solutions, it does however bring relief of its own kind: that you are not going mad, that this is not all inside your head. There is a name to what’s going on with your body and you can’t imagine what a difference that makes.
The medical options I was offered were still limited to the coil or injections to start early menopause. You have to sit down with those and weigh up the pros and cons. There was talk of operations to remove my ovaries and using ablation to separate the organs, but research has shown that multiple operations can cause more adhesions because of scar tissue, and multiple operations can also damage ovarian reserve.
I haven’t given up hope of becoming a mum one day, and I don’t want to jeopardise those chances.
It’s part of my life
Endometriosis is part of my everyday life. It affects decisions I make, but I have reached a certain truce with it. I realise its not going away so and I work around it. The adhesions are on my left ovary, womb and bladder, so they are in effect “glued” together. I have pain in my lower pelvis and side all the time, and I can only dream of a full pain-free night’s sleep.
Through a lot of perseverance, my monthly visitor does not wreak so much havoc on my life and overall we’ve come a long way from the bathroom floor. What worries me is the damage it is doing on the inside, damage that I can’t see.
I have days where it just hurts everywhere and I get overtired from lack of proper sleep but I’ve learned to be kind to myself on a bad day, to stop feeling guilty that I probably won’t achieve very much or be that active but hopefully tomorrow will be better.
Living with pain
I’ve learned that I might have a run of good weeks but I can’t get complacent. Regular exercise and a good balanced diet are essential.
The ultimate treatment we are all hoping for is excision surgery by a skilled surgeon but that is not readily available here. I spend my limited disposable income on alternative therapies that have given me relief, from acupuncture to osteopathy and pelvic physio.
I’ve also learned that support and sympathy comes from unexpected sources, and that it is important to talk about it. You cannot expect understanding without increasing awareness of what it means to live with chronic pain.
I do wish I’d known all this in my twenties. I often wonder would it have changed anything. Chances are the disease wouldn’t be any different but I know it would have been.
Cate O’Connor lives with endometriosis. See endometriosis.ie for more information and an online support group.
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