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Dear Endometriosis, I Haven't Lost My Voice

March was Endometriosis Awareness Month, and during the month of awareness I spent my time speaking up about what it means to live with “Endo” and a chronic illness on my Instagram.

This is a note I shared with my disease:

An open letter to my endometriosis,

I felt you for a year before I knew what you were. Initially, I was sure you were appendicitis, so you and I went to the ER. My appendix was inflamed, but you were deemed “irritable bowel syndrome,” a “ruptured ovarian cyst” and you cause multiple painful other cysts, while having a popcorn party on my right ovary.

You and I were poked and prodded over the next year (all of 2017), accompanying each other to multiple trips to the ER and countless visits to specialists, labs and doctors all over the state of California.

We saw multiple gastroenterologists (GI), had a colonoscopy, saw at least 10 different OBGYNs, had CT scans, MRIs, ultrasounds, more blood work than a lab rat, multiple PCPs, a psychologist and a psychiatrist. Because, obviously, I’m “young, beautiful and healthy,” so clearly, you’re “just in my head.”

Then, finally, someone listened and we had a diagnostic laparoscopy and you were given a name via pathology.

Endometriosis.

I thought, “WTF is endometriosis?!”

You are so painful and draining – emotionally and physically.

You are so expensive.

You cause inflammation and pain like nagging, chronic stabbing in my lower right abdomen, legs, back and feet.

You make my right ovary feel like an erupting volcano.

You cause cyst ruptures and blood to lay around stagnant in my abdomen and my uterus.

You cause gastrointestinal upset, pain and digestion issues.

You cause nausea, food intolerances, extreme exhaustion and fatigue.

You cause hormone issues, painful sex and pain after sex.

You cause headaches, heart palpitations, low iron and vitamin and mineral counts, infections and periods that last me three weeks.

You have no known cause, although your theory pertaining to me and my body is that you were possibly caused by my c-section, since endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus. They think my normal and healthy uterine tissues escaped when my body was sliced open during childbirth.

You have no treatment that actually works; excision done by an endometriosis specialist working alongside a skilled GI is currently the only gold standard. But, excision surgery is not covered by insurance and would require me to travel out of state to have surgery with a specialist.

You have no cure.

Your pain and symptoms are compared to cancer.

But you are not recognized (yet) as an autoimmune disease or as a disability, even though you cause some women to be bedridden and attack some women’s organs, lungs, or in rare cases, their heart or their brain.

You are terrifying and intimidating.

Because of you, I don’t want to carry or deliver another baby, because, you’re scary.

A black and white image of the writer standing against a white wall, holding a sign that reads, "I am 1 in 10."

You give me anxiety, low libido, insomnia, restlessness and sometimes, depression.

You interfere with relationships.

At times, you suck the life out of me.

You try to steal my confidence and my zest for life.

But, even on my worst day, I am still here. I will continue to fight against you and the ignorance on you within the medical community, strangers, and society.

I will continue to spread awareness and demand action for you because out of all the things I’ve lost because of you – I haven’t lost my voice.

Because I am strong.

I am a fighter.

And you do not define me (although I have to constantly remind myself that because of my symptoms and my scars).

You make me a statistic. I am one in 10.

But you do not define me.

This story originally appeared on Shelley Hopper.

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