Reader’s Choice : Endo made my life better

Quote: Endo is such a stupid disease, but your image symbol for endo gives it so much more meaning to me. I am a woman, I have an invisible illness, I still have value, and I am still beautiful! Anonymous

“Endo made my life better!” Now there’s words you don’t hear everyday…

I was 35 years old when I received the word after a routine cystectomy that I have Endometriosis.  Learning I had this disease, then coming to realize how many women have it, and how little is known about it; that there is no cure…I had to learn more!  I had to do something!   Granted, the peace of mind that all of the pain I’ve endured over the years wasn’t normal was a fantastic thing. But still…!

So I searched for San Diego area support groups.  Found none.  Then searched for San Diego, or even Southern California, walks for March 2015.  And found none.  So I became frustrated at the lack of concern for our illness.  Nobody seemed to care out here.  Nobody seemed to even know about it, other than my surgeon and his staff…So I started the gofundme campaign with the determination to walk in March 2015 without an organized event.  And to raise funds for an organization that DOES care and DOES do something for our Endo.

And on my bad days, I had to create art.  When I created the Bloomin’ Uterus graphic, it was just to make me feel good on a bad day; just to reassure myself that I am still as beautiful as I ever was.  But it exploded into a symbol for women all over suffering with Endometriosis.

And due to social media, the Bloomin’ Uterus has spread like wildfire among my friends and family, and women all over the United States AND the world!  I initially ordered 100 buttons be made of the Bloomin’ Uterus, and will soon be ordering a second run of them made!  These supporters who do not have Endometriosis step forward and ask questions, or tell me that their sister or mother suffered from Endometriosis.  Some with family members or friends who have Endo never knew how truly devastating it really is.  And for my Endo Sisters, they share their stories of suffering and survival.  And they tell me how the Bloomin’ Uterus brought a whole new perspective to our disease.  Reminds them that they are still beautiful.  Acts as an advocate for us.  And continues to spread cheer and beauty throughout their days.

One Endo Sister bought a spare button and left it with a note at the bedside of a patient who was recovering from her Endo hysterectomy. Her story brought me to tears.  Each email, each note, each text, and each story has touched my heart beyond measure.  I never knew that this creation would touch others as much as it was meant to touch me.

Today our Bloomin’ Uterus support group has 241 members…and that’s for just Southern California and San Diego-based EndoWarriors. We’ll soon be having our fifth annual Endometriosis Awareness walk, have raised over $7,500 for the Endometriosis Foundation of America, host workshops when we can about Endo and different treatment options, and meet once a month to support each other. I am honored. And amazed. And I will never stop.

This is much bigger than I.  And I never would have been a part of this life-altering network of support and friendship had it not been for the diagnosis of this horrible and debilitating disease.  I would never have been able to touch these lives, and never would have been touched by them.

Am I happy that I have Endometriosis? No.  But, I am so grateful and happy for the lives it has brought into mine.  Almost five years later and a total of four surgeries, I wouldn’t trade it for the world.

May our family of Sisters and support continue to grow ever stronger.

Yours, Lisa

*This blog was a suggestion, “How do you feel this condition has changed your life for the better?” brought to you by my best friend and sister, Rosie N.

(Updated March 22, 2019)

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