By Rachel Burke
After first being diagnosed with endometriosis, it didn’t take me long to research the condition. I started with a customary google search. Not content with the answers, I began to look a bit deeper. I read countless medical studies, followed social media accounts of others with the disease, joined online support and education groups and spoke with different medical professionals. I wanted to know as much as I could about the condition and what treatments were available. I was also curious about what caused endo, and importantly, if there was anything I had done to cause it?
I think it is a common question to ask when you are faced with a relatively vague diagnosis. Yes, you have endometriosis. No, we don’t know what causes it and apart from invasive and expensive surgery, we don’t really have many options for treating it.
In my research, I read articles linking the cause of endometriosis to genetic, lifestyle and even mystical factors. Some stated that the disease was linked to the age of the first menstrual cycle, the length of menstrual cycles, to height, weight, a lack of anti-oxidant rich foods, auto-immune conditions, stress, hormonal imbalances and even state of mind or sense of self-worth.
I was speaking with a friend a few months ago about the endless search for answers. She stated she had been searching high and low looking for what might have caused the disease. Her case is extreme, involving over 10 cm of her bowel being removed, a temporary ileostomy bag and a hysterectomy. Yet even in her recovery, she was wondering if there was a link to hormonal birth control, immune conditions, genetics or something else?
The fact that we simply don’t know, can be upsetting.
The more I searched, the more information I found. It appeared that endometriosis, the cells similar to the lining of the uterus growing outside of it, was not only causing havoc inside of my body, but appeared to be baffling the medical profession to a certain degree.
I started to get confused. Surely the cause of the disease that was forcing me to reshape how I lived my life, couldn’t be a lack of celery in my diet, too much sugar in my tea, or my inability to partake in a daily mantra, as some of the articles suggested it might be? Surely there had to be more known about the condition.
Unfortunately, just as there is no known definitive cure for the disease, there is no known cause. The research into the cause continues in the hope that a cure will be found.
As time went on, I continued to be curious. Some of the information I found seemed to be questionable. There were people stating they had cured the disease by following a certain diet. Others claimed that in order to treat the condition a natural hormone balancing and expensive protocol must be followed at all times. Yet others promoted a concoction of herbs and oils promising revolutionary results. While all of these people may wholeheartedly believe in their products and protocols and maybe these therapies have worked for them, it’s important to remember they don’t have all the answers. Alternative therapies and lifestyle changes make a difference and can help, but they aren’t accessible to everyone, nor will they help everyone.
I fully understand the importance that diet and lifestyle have when it comes to health and endometriosis and I encourage everyone to try what works best for them when it comes to the treatment of their own condition. If possible, speak with your doctor about what changes you could make to help treat your symptoms.
I wish I could offer my own ground-breaking research into what causes this horrible condition, but I can’t. I wish I could provide you with a product or an alternative form of treatment that will work, but I can only offer you what I’ve learned.
For those of you searching for information, please don’t punish yourself based on a failure to follow unrealistic and unproven protocols. Anything that suggests that you are not doing enough to treat your condition unless you get 10 hours of sleep a night, exercise at a high intensity for an hour a day, drink twelve glasses of water and eat a diet without gluten, dairy, meat, processed foods and refined sugar is for most unrealistic and unhelpful. I find it helpful to remember that while all these things might help in part to treat some symptoms, they are yet to be a proven cure.
I would encourage you to try to do your best. Try to make small positive changes to lifestyle that work for you. Seek out credible information or speak with others that have the condition. Remember no individual’s condition is the same but sometimes, speaking with someone who understands what you are experiencing can go a long way to helping.
And on the days when you are bloated, bleeding, nauseous and have pain that feels like hot knives are being twisted slowly inside you, be gentle with yourself. Sometimes staying in bed with a heat pack, lying on the couch watching tv with a glass of wine or some chocolate, soaking in a bath or simply getting through the day as best you can, is a big achievement – don’t discount it.
You did nothing to cause this and in time I hope that more will be understood about the disease and what causes it. I hope this so that treatments improve and we can step closer to finding a cure.
Photographs by Cole Bennetts