“A new breakthrough in a disease that no one likes to talk about” was the tag line for a tweet by The New Yorker this morning that caught my eye. Having a disease no one likes to talk about, I was drawn. Assuming it discussed Chrones or Colitus, I figured it would be ample news for my cousin who is currently raising money for the disease.
I burst into tears the moment I read “endometriosis”. Writing this now I am still fighting back tears.
On of the hardest facts to swallow when being diagnosed is that not only is there not a cure, but the disease is so universally overlooked that even the cause is still unknown. This leaves very little hope at seeing any sort of cure during our generation. This is not to say there are not steps each woman can take to lessen her symptoms in one way or another. Just that there is no known explanation or cure for those of us with the disease.
In the Spring of 2013, after my first surgery and reading anything I could get my hands on, I decided to cut out soy and most dairy from my diet. I switched all meat and dairy products that I still consumed to “hormone free” options and noticed a drastic difference in my day to day functionality. Was it easy? F**k no! But it was worth it.
The most simple thing to understand about endometriosis is that, whatever symptoms you are experiencing, are fueled by hormones. The more regulated these hormones are, the less intense the flair ups. When you consume soy (might as well be a straight shot of estrogen) or dairy/meat products that have been fed added hormones, those hormones are going into your body and adding to your existing hormones. For a woman with endometriosis, this is highly troublesome.
Aside from regulating hormones I tried to eat better all around. I increased exercise and tried to remove all added toxins in my home (primarily by making organic kitchen/bathroom cleaners). I have seen great success with all of these steps. And yet, in August of 2013 I started having severe symptoms again.
Another problem when living with this disease is the wide variety of symptoms. Because the tissue can grow on any organ, every woman has different symptoms. For me, I have sever issues with my bladder, bowl, colan, intestines, stomach and uterus. I have had several days where the muscles from my back and legs have been so severely effected that it makes walking or sitting extremely painful. I have found that the more active I am, the less I experience these symptoms, however, they have never really gone away. This being said, I have read stories of other women with no symptoms at all or with entirely different sets of symptoms. You can imagine how difficult this would make it to find a reason for the disease let alone a cure. Until recently there seemed to be absolutely NO common thread between symptoms and patience. NONE! Lets emphasis the fact that I said, until recently.
The article discusses how researchers at the Massachusetts Institute of Technology have been working together to find a common thread between patients. “The study is important because it shows the power of a new method now being used to probe a complex disease” writes New Yorker journalist Amanda Schaffer. For people who are not familiar with the disease, this may seem like an insignificant fete. But to those of us aware of the complication of the disease, this is the first of what I can only hope is many steps forward.
You could say that I have more or less come to terms with the fact that I will live with this disease and its progressing symptoms for the rest of my life. It is not an easy fact to come to terms with but its the body I was given and I have the satisfaction of knowing I do my best to take care of it. We will only find a cure when the disease becomes one that is universally addressed. Please share this blog, the article, or any information you find about the disease. While today’s new was uplifting, the greatest step that can be taken now, is universal acknowledgement.