This month I will be sharing information about a condition called endometriosis. It is a condition that directly affects 1 in 10 women worldwide. When someone has endometriosis, it means that the lining of the uterus has gotten outside of it. This is problematic because of two main reasons:
1. The lining of the uterus is native to that environment but when it gets outside, it’s essentially a foreign body that’s affecting your organs, tissue, blood and anything else it may come into contact with.
2. The lining of the uterus sheds every month as a part of menstruation. This is fine when it happens inside the uterus. It’s much more problematic when it happens outside of the uterus. Essentially your uterine lining is bleeding in areas where it shouldn’t be.
One of the more commonly mentioned symptoms of endometriosis is pain. Those of us who suffer from it often have VERY painful menstrual cycles. We also often have pain during times of the month when we’re not menstruating. It can take a toll on the body, mind and spirit to live in constant pain.
I was diagnosed with endometriosis when I was 20 years old. I went in for surgery to remove a cyst from my ovary and the doctor found endometriosis (which she didn’t know I had) and fibroids (which she did know I had). So a 1 hour surgery ended up taking 3 hours. She removed the cyst and burned away as much of the endometriosis as she could (this is not a cure, only a temporary treatment–more about a better treatment later). She left the fibroids behind because they may die on their own and are shed as a part of the menstrual cycle. So while the plum sized cyst that was on my ovary was gone, I’d officially entered into the vortex that is an endometriosis diagnosis.
They started by prescribing me lupron which puts your body in a pre-menopausal state. I experienced hot flashes and night sweats. As it was explained to me, the purpose of the lupron was for it to stop my cycle and allow my hormones to balance out.
Sidebar: While endometriosis has no clear cause, there are lots of ideas about why it may exist. One of which is the estrogen in our bodies contribute to it’s growth and spread. So by stopping my cycle, it should reduce the estrogen and helps reduce the endometriosis.
This didn’t work. But at the time, I didn’t know that. I did experience the hot flashes and occasional night sweats. I also experienced severe hair loss.
Sidebar 2: No one told me I would experience hair loss but it happened at the same time that I took the lupron so the correlation wasn’t hard for me to make. I will write a WHOLE post about lupron and why I am very opposed to people taking it.
So I took the lupron for three months (I think). It was a once a month shot. After that, I was given depo provera which was a less severe form of lupron. I stopped having hot flashes and night sweats but my cycle didn’t return. (in my lupron post, I will discuss depo too. I’m also opposed to it).
So, fast forward to today. I’ve had endometriosis for almost 17 years. I live with it every day and thanks to the power of Facebook and social media, now I have a community of fellow endo warriors. I’ve gotten more educated, shared my story and found about some new treatments. So for the next 30 days, my social media, blog and life in general will be steeped in endometriosis awareness and updates.
Often, those of us who live with this condition suffer in silence. We grit our teeth, push through the pain and move forward in spite of things because we have to. Now we have a month where we can and will talk openly about our condition and how we push through it. If you have questions about endo, please ask. If you have questions about my experience, please ask.
For more info, visit: http://endometriosis.org.