Melanie's Personal History &
Mission Statement
Beyond the Pink Ribbon was inspired by eMily Christie

 

The project is dedicated in memory to Bertha;

also in memory - Kate Goodman

The concept for Beyond the Pink Ribbon (BPR) was inspired by eMily Christie while experiencing prolonged illness after continuous misdiagnosis for the common reproductive conditions, endometriosis and polycystic ovarian syndrome (PCOS). Our conversations began while she was on post-surgical estrogen based therapy. eMily - like myself well over a decade prior - experienced diagnostic error, delayed surgery, and a lack of communication on post-op treatment involving hormone therapy. 

In 1988 I was incorrectly diagnosed over a half dozen times, and as a result I almost died from extreme conditions due to a relatively common auto-immunity disorder called endometriosis. Immediately after my 19th birthday I underwent emergency surgery for advanced endometriosis and pelvic inflammatory disorder (PID). Repeat treatments with incorrect antibiotics inspired cross-infections, exacerbating the actual condition, creating complete reproductive "fall-out". After my surgery I was placed on a very high dose of progesterone. As a result I went through what is called "surgically induced premature menopause". I was told the hormones had no side effects. Unfortunately those side effects were real, and were permanent. Not only have I been told I will never have children, I have also been on off-label use injections of medroxyprogesterone acetate for 15 years as preventive measure against endometrial recurrence, and to balance the  extreme side effects of the original measures. (note: due to side effects finally kicking in from the Depo 12/2009 was my last injection.  We are going to switch over to estrogen based therapy to see if that is less abrasive on my system.) 

What surprised me after speaking with eMily and other women in similar situations (note: the field research / qualitative data completed in affiliation with this project are not posted due to privacy concerns), is that misdiagnosis, partial diagnosis, lack of diagnostic and treatment information, along with a lack of long term care directives for women undergoing hormone based therapies are still common place! The information and treatment options are all accessible, but for some reason many young/women are not getting complete information and care from their family doctors and/or gynecologists. 

I decided to pursue a project that would act as an education and advocacy forum. We all understand the importance of screening and treatment for breast cancer. That "pink ribbon" is essential and vital, but there is also a need to go beyond the pink ribbon:  I envision Beyond the Pink Ribbon (BPR) inspiring important interest and action in evolving women's intimate care to a more scientifically tested, spiritually integrated and politically balanced level. We are so worth it!

This project is dedicated to:

the memory of my Grandma Bertha who died of ovarian cancer in 1978

after being mis-diagnosed with severe indigestion.

also the memory of my Goddard classmate Kate Goodman. 

The contributions you made to domestic & global women's issues,

along with your humanitarian interests were/are stellar.

  You are missed!

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eMily is blessed

 

in that - though told she would be childless -

she conceived after undergoing multiple surgeries and hormone based treatments;

she now has a wonderfully complete family -

CONGRATULATIONS!

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