Endometriosis Awareness: Speak Out

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Erika Myers-Khan
I didn’t know that there was a name for it. Like so many others I thought that what I went through was so uniquely me. Like the kid who hides a birthmark or scar, why would I put my unique condition on display? The doctors didn’t have a name for it; they made me believe that I was weak and that my pain was not serious. I didn’t know that I had relatives living with it, and I certainly didn’t know that 10% of all women suffered from it.

After eight years I was no longer able to hide what was happening to me. My pain and fatigue left me with one “normal” week out of four. My thoughts of a post-graduate program in advertising were replaced by the anticipation of a precious hour of pain relief to do the simplest tasks, after lying quietly on my right side for the required thirty minutes. It was not until then that someone mentioned endometriosis.

Common symptoms of endometriosis such as increasingly painful menstrual cycles, chronic pelvic pain, cycles of constipation and diarrhea, nausea and vomiting, painful bowel movements, back and leg pain during menstruation and constant fatigue, were all complaints that I had mentioned to a doctor at one time or another. How was it possible that physician after physician had turned me away without answers? More importantly, how did a strong woman like me let eight years go by without standing up for myself?

For a disease that affects so many, cripples entire families, and prevents some from starting their own families, our society is surprisingly quiet about endometriosis. Many physicians still believe that endometriosis only affects the reproductive organs and that those symptoms can be swept away with pregnancy.

If I had known then what I know now, I would not have accepted being called weak. If I had known that there was a disease called endometriosis that could cause most, if not all of my symptoms, I would have kept looking for a doctor who believed me. If I had known that there was an entire vocabulary enabling me to get through to my doctor, I would have asked more questions. If I had known that the diagnosis of a disease with no cure would bring me validation and relief, I would have given all of the gritty details of what I was going through to every single person that I came into contact with.

Those of us who have traveled the long, dusty road to diagnosis that says “proceed at your own risk”, are responsible for making that road as smooth as possible for those who come after us. There are a handful of pioneers who have tirelessly shouted “en-do-met-ri-o-sis” from the rooftops so that so many of us could find our way to specialists and accurate information on our disease. As long as we neither know what causes nor cures endometriosis, this work will never be done. In the meantime, it is our responsibility to teach our children that endometriosis exists, and to tell our friends that our disease affects more of our lives than we sometimes let on. It is also crucial to build an understanding of endometriosis in the workplace, by holding an open dialogue about how endo affects us on the job, while discussing mutually beneficial strategies for moving forward with employers.

Who hides a birthmark these days? It is what makes us unique. Who hides a scar anymore? It tells the story of where you have been and what you have done. Why hide the havoc that your endometriosis causes in your life? It shows what a strong person you are, and could lead someone else to a diagnosis.

I have been called a strong woman many times in my life; rarely have I believed it. Once as a child I stood up for myself, and then to my dismay, burst into tears. I felt so much shame because of showing what I perceived to be weakness. My grandfather followed me to where I was sitting and said “hmmph, little bulldozer, you can get through anything”. It was then that I understood: strength is not the absence of weakness, but instead the courage to show vulnerability and speak the truth.

March is Endometriosis Awareness Month. I ask you to open up and tell one person about your endo in detail. Your bravery could save someone many years on the bumpy road to diagnosis, and a lifetime of looking back wondering “what if”.

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3 Comments

  1. I am 53. I was diagnosed with endometriosis about 10 years ago, on the brink of menopause.
    But I too landed in my family Dr.s office when I was 13, with my father. It was very embarrassing at the time. The two men looked at each other and decided, its just girl problems. I remember clearly.

    2 miscarriages later, no children now… and menopause behind me, I am finally without pain.
    I thought later, am I the only one? My Dr. Did not know, I was not referred to a gynoclogist, even after ‘suspicious cells’ were found in my uterus and I had a cone biopsy. Good thing I am as healthy as mare, or I would not have made it this far!!!

  2. Thank you for continuing to speak out about endo. I went through all of this in the 80’s and 90’s. Even with a family history of EVERY female having it… it was ignored.

    I went to many OB’s who recommended anti depressants. But none did the simple diagnostics which prove what is going on inside, which doesn’t show up any other way. I had relatively no pain, because I had grown up with horrible cramps since age 11. Fatigue, nearly passing out, was my primary symptom.

    One day I was being examined by my OB – he pushed on the right ovary and I screamed. He concluded I had spastic bowel and prescribed an enema.

    After fuming and telling him I would be finding a different Dr… he finally did an exploratory and found 4th stage endo and a blown up ovary. The pictures from that surgery were then used to train Dr’s in the hospital about endo… what it can look like and how the symptoms are not always according to their check list.

    I had a complete hyster in 1991. After years of being told I was just depressed, or had irritable bowel, or needed to get married.

  3. “Whenever one person stands up and says, ‘Wait a minute – this is wrong’ it helps others to do the same.” – Gloria Steinem

    Thank you for standing up and saying that what you are going through is wrong. You are a strong woman and your post is beautiful.

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