Due to the portrayal of chronic illnesses in media, many people are under the false presumption that once an illness is diagnosed, your medical struggles will come to an end and you can easily be treated for your condition. But, with an illness like endo, one that lacks a lot of research and understanding, this is not the case. During my journey with endo, after experiencing 3 years of pain, missing months of school, I was told I probably have endometriosis at 15 years old (if you want to learn more about my story please see the post titled "----". I was so relieved to have answers, but little did I know that my journey was far from over. Many medical professionals don't know how to treat grown women with endometriosis, much less a minor. My GYN at the time told me that I could easily go on birth control and supress my period, helping mitigate my abdominal pain. But, it was anything but easy. I tried several different birth control methods - many pills and an arm impant - all of which didn't control my bleeding, gave me panic attacks, or made me sick. I then went on a medication called MyFembree made specifically for endometriosis. This medication puts you into pre-menopause, but has an add back of estrogen hormone to mitigate side-effects. This medication didn't work after the alloted three month trial. Now, I am working on getting the Depo shot, another form of brth control which I had only done once previously. All this to say, having endometriosis is not easy and I would not get your hopes up that dealing with it will be simple. I wish it was. But, through this experience I have learned a lot about what more than 1 in 10 women are dealing with. And now, me and my mom are working tirelessly to help bring awareness to this disease so someday it can hopefully be cured/treated more effectively.
Let's talk more about treatments for endometriosis. There is NO cure for endometriosis. Nor any treatment that prevents it from growing. There are only treatment options that help mitigate the pain. Some women experience severe pain, and some don't feel anything at all. To reiterate, the amount of endo present doesn't correspond to how much pain a women can be in with the condition. Most treatment options available are hormonal medications, which can have some bad side effects, such as disrupting bone growth. This is why more research is needed. No one knows exactly what causes endometriosis. It is sometimes linked to genetics, although this is not scientifically confirmed. We need more options for endo patients. We also need more screening options. Sometimes endo can be seen on ultrasounds if it has moved organs out of place or MREs if fibroids are present. The MRE protocol for endometriosis is very invasive. And after experiencing it as someone who is not sexually active, very traumatizing. Otherwise, the only way to definitively diagnose is through laproscopy or surgery. None of these are good options and on average, women must get surgery two years after their first to remove the endo that has grown.
We wanted to spread the word of our experience to help guide others and to help check expectations. Each step of this process we thought would be our last and wasn't. The truth is, dealing with endo is a process, on that doesn't ever end completely. I am always navigating my symptoms. I have good days and bad days, but it's important to not give up and to be willing to try new things. Stay connected to what you love. Make sure to make time for self-care. Learn how to communicate how you are feeling and what you need with people you trust. Learn what techniques work for you. Everyone may find something different helpful, since no two people are the same.
We created this website and non-profit to help endo warriors keep fighting. It is really easy to give up when you have been pain for so long and don't know why. Or if having an answer isn't enough of a solution. When I learned I had endo, I cried in relief. I had been told for so many years that I was just having stomach aches and that I was just stressed. And I really believed that all the pain I had learned to live with was in my head, but it turns out I have many chronic conditions that interact with each other, which has caused my nervous system to be all out-of-whack (that is the official term). Please read through our other posts to learn tips of how to manage the pain and to learn more about endo and how you can get involved in making a difference. I hope we can help you on your endo journey.
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