I knew something was wrong. I just didn’t know WHAT was wrong. I tried to use my voice and speak up about what was happening to me. No one listened. I eventually just accepted that no one was listening and there was nothing I could do about it.

After collapsing while doing laundry and waking up in a hospital missing body parts I finally received the answers I was looking for. Stage 4 Endometriosis and severe Adenomyosis.

 I remember being confused by these words because I had never heard them before. I will never forget being told by this surgeon who’s name I still hadn’t gotten, “There is no treatment, no cure and nothing you can do about it. You will have endometriosis for the rest of your life. You should find a specialist ASAP. I lasered the endometriosis which is a surgical band-air but you should find someone to cut that stuff out before it kills you. Oh and by the way….we did have to remove your reproductive organs to save your life and put a stint in your ureter (leads from bladder to kidneys) because yours completely collapsed and you were in organ failure. so…you take care.”

Um….ok. All of that devastating information was thrown at me in less than 30 seconds and I really only absorbed one part of what he said. There was NOTHING I could do about it. Because I was told there was nothing I could do and everything I read online confirmed that I was now a pawn in my own life; I simply sank into a dark place and accepted that quality of life for me-would never exist again. Life as I knew it-was over.

The love and support of my boyfriend Christian and my family lead to the discovery of Dr Camran Nezhat who quite literally saved my life and put me on a path towards wellness. Stanford Hospitals and Clinics put together a team of 9 specialists to take care of me and get me as close to quality of life as possible. I endured 3 more surgeries to repair the extensive organ damage from Endometriosis.

I never missed an appointment. I always tried to muster up a smile and occasionally a sarcastic comment while bringing in stool samples and 24 hour urine collections every week. I went to countless Dr appointments every week for a year and there were ER visits followed by hospital admissions for 3 days or more. Complications followed and there were procedures, poking, prodding and exhaustive efforts on all parts to be proactive and deal with the seriousness of my case. Meanwhile- I was living a half life. I was existing; not living.

Until one day I realized that I was a shell of the woman I used to be and I thought to myself…..when did I lose Lindsay? In my old life I was a Communications Guru of sorts. I was captain of my mock trial team in high school and awarded 1st place in the state of CA for the pre trial prosecution attorney or the year. In 1996 while in my 1st year of pre law education I was offered a job at a law office after I shook my finger at a superior court judge while arguing which penal codes and city mandates supported my case. I traveled the US speaking at symposiums and training seminars for a living. Endometriosis proved to be more destructive than I thought it could…..Endometriosis had broken me; it had stolen my voice.

One day I started thinking about how there was “nothing” I could do about my situation. I thought about a quote from one of my favorite writers and poets Maya Angelou, “If you don’t like something; change it. If you can’t change it; Change your Attitude” and at that moment the light-bulb turned on and I realized that there WAS something I could do. I could talk to people about Endometriosis!

Endometriosis may had taken away my ability to be a mother but it wasn’t going to take away my greatest asset-my voice. I started talking to anyone and everyone about Endo. The neighbor I saw while taking out the trash, the post office worker who retrieves my larger packages from the back room, the lady behind me in line at Starbucks, the guy pumping gas next to me, the grocery store clerk, my friend I spoke to on the phone, anyone, everyone! If you had a pulse breath oxygen and you crossed paths with me…..you and I talked about Endo.

I didn’t even need a reason to talk to a person. I would simply ask them if they had ever heard of endometriosis. People always had 1 of 3 responses. The first possible response was the person would have no clue what Endometriosis is. The second possible response was to have heard about Endo or known someone who had it but not having the facts. The third response which was less common but enlightening was to be talking to someone who has endometriosis. What I now know if called an Endo Sister.

I slowly realized that day by day; I was talking to more and more people about endometriosis. I was a walking talking medical journal article about the 411 surrounding this little known disease that had dropped into my life and almost taken it. I found solace in spreading the word. It felt good to take some control back in my life and be interacting with people again. I also appreciated the shift I saw occurring in myself. I was finding myself again and it was because I had found my voice and was using it.

After my 4th surgery at a post op appointment with Dr Nezhat at his office; he was telling me about the 1st Annual Million Women March for Endometriosis that was being planned for 2014. The man who saved my life via multiple surgeries looked me in the eye and told me that my voice has power and I do so well with people that I should use my voice and help with endometriosis awareness and the endo march. I accepted without hesitation because it was empowering to think there was going to be an event to recognize a disease that I have to deal with for the rest of my life.

Those months when I was talking to people everyday about Endometriosis had ( unbeknownst to me ) been the training grounds for me finding my voice. Now that I had found it…..the powers that be decided it was time I start using that voice…..and so I did, I am and I will. I was honored to be asked to be a guest speaker at the 1st annual Million Women March for Endometriosis in Washington DC and it was a life changing experience. I am now a co-founder of a Non Profit organization called EndoSisters.org to become a one stop shop for endo sisters and endo supporters to get info about all things Endo.

In a matter of months the entire core of my existence has become focused on being an Endometriosis Awareness Advocate. I have worked the color yellow into my wardrobe, I have a yellow awareness pin on my jacket and purse strap and I always find a way to talk about Endometriosis. My voice is just one and there are 176 million women worldwide battling Endometriosis and the devastating effects it has on the mind, body and spirit. 

Endo Sisters are the strongest, most tenacious, most compassionate women I have ever met. Our voices have power….but only if we use them. Together, we must empower each other to all find our voices and use them.

Lindsay Murphy

 

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MUCH LOVE!