Endometriosis Awareness Month

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March is Endometriosis Awareness Month.

When I decided to share our experiences with infertility and gestational surrogacy through a blog, it was met with mixed reviews. Some people thought it was a crazy idea, some people thought it was stupid, and some thought it was both. I know for a fact that my 12-year-old self would have agreed with all of them; she would have been horrified to know that I was willing to talk about these personal and intimate issues in such a public way.

Being diagnosed with a reproductive disease at twelve years old was nothing short of awful. All of a sudden my life revolved around severe chronic pain and I began to worry about the future of my fertility when I was little more than a child myself. In addition, I was exposed to the many limitations and inadequacies of our medical system. And worst of all, it was difficult to find people who believed my pain was real.

But at the time, one of the things that bothered me the most about my diagnosis was that I found it horribly embarrassing. In fact, I forbade my parents from telling anyone outside the family the reason for my illness. I didn’t want others talking about or even thinking about my reproductive system when I was too uncomfortable to deal with it myself. Getting invasive questions from the dozens of doctors (and nurses, med students, etc.) about my last period and whether I was sexually active (again, at 12) was bad enough. I didn’t want my future fertility to be an open discussion among people I would have to see on a daily basis.

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This was me about a year after being diagnosed with endometriosis. They don’t call it an ‘invisible illness’ for nothing… but just because you can’t see it, doesn’t mean it doesn’t exist.

Covering it up wasn’t easy though. People wanted to know what was wrong with a previously-healthy girl who was now in the hospital several times that month. My school wanted to know why I was continually absent. As a compromise, my mom and I settled on telling everyone that I needed to have my appendix out. It was the story I told all of my friends and the story my mom gave each of my teachers. It was the version my dad told our church congregation that Sunday morning. I was comfortable with that; after all, Madeline had had her appendix removed and wasn’t embarrassed by it in the least.

madeline

It would have held up pretty well, too, if my appendix hadn’t ruptured unexpectedly the following year. Since then I’ve had several more surgeries to remove scar tissue, lost my gall bladder and the function of my fallopian tubes, and I’ve come close to losing an ovary due to my scar tissue weighing down one side and causing it to twist. I still live with debilitating pain that dictates my life and it can become so severe that I pass out or throw up. And, following a particularly extensive surgery, I developed fibromyaliga at 17, which has since caused me significant chronic pain and fatigue every moment of the day. Those are just the physical repercussions I’ve faced. The emotional and financial repercussions are far less easy to list. All of it can be traced back to the original endometriosis.

This is probably one of the best illustrations of how it feels that I've ever seen.
This is probably one of the best illustrations that I’ve ever seen of how endometriosis actually feels.

Fifteen years after my diagnosis and here I am battling far more than just endometriosis. It has taken so much from me, and now I can include my fertility on that list. I’ve lost years of my life to this disease. I’ve lost healthy organs to this disease. I’ve lost the ability to carry a child of my own. I may have even lost the ability to have a child in any capacity.

For some, endometriosis is little more than a listing on their medical chart, but it is different for everyone. The earlier it’s diagnosed and the sooner you find a capable doctor, the better chance you have of maintaining your fertility. The more people understand about this disease, the easier it is for those who are suffering from it. That is why raising awareness is so important. I’ve written about this issue on Facebook in the past to help educate others, but over the last several years as my worst fears have been confirmed, it was too painful to write about while still hiding our struggle. Now that I am able to speak openly about our infertility, it is important to me to once again take part in Endometriosis Awareness Month (even if it is the very last day). Please help me in spreading awareness; your fertility or the fertility of someone you love may depend on it.

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A few facts about Endometriosis:

  • You can only receive a diagnosis following surgery. Endometriosis cannot be detected through other, less invasive medical screening.
  • Many doctors and medical professionals are ill-informed or even uneducated regarding endometriosis, which is why misdiagnosis is so common.
  • There are four stages of endometriosis, but the level of scar tissue is not directly correlated with the amount of pain it causes.
  • You do not have to be a certain age to be diagnosed with endometriosis. I was diagnosed at 12 after several months of pursuing a doctor who believed me and could help. He was a top specialist in adolescent endometriosis and my diagnostic surgery took place within six month of my first cycle.
  • Endometriosis is the leading cause of infertility in women. It’s estimated that up to 50% of women with the disease have experienced infertility.
  • There is no cure. There are only treatments that may help preserve fertility and manage symptoms.

If you have questions about endometriosis, feel free to ask me or keep digging for yourself. Here are a few sites that may be helpful:

http://endowarriorssupport.com/

http://endometriosis.org/

http://www.endofound.org/

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2 thoughts on “Endometriosis Awareness Month

  1. I remember it all well. Still very difficult hearing it all and knowing you actually lived it. You are a remarkably strong woman and I pray blessings on you and Kyle. Love you! Gram

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  2. I was diagnosed with stage one endometriosis back in August when I had to have a D/C after a miscarriage. I’ve had three miscarriages between my son and my current pregnancy. I didn’t even think I could get pregnant again, but I did after being on contraceptives for nearly six months. I have horrible pain when my cycle comes and that’s from only two little spots on my uterus. I can’t imagine how bad it hurts if it’s stage four.

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