Why Isn't There Enough Endometriosis Awareness?

A Lifelong Condition That People Are Afraid to Talk About

Artist Ellie Kammer turns her story of Endometriosis suffering and pain into art

My partner and I went for a walk in the snow; romantic and magical. The tranquility made me think, reminded me of my Endometriosis—a life long condition found in women, often undiagnosed but debilitating.

So, what is Endometriosis?

Endometriosis is caused when the Endometrium (the lining of the womb) is found outside the uterus. When a women gets her period, the endometrium thickens to prepare for fertilization. But when a woman does not get pregnant, that's when the endometrium sheds and a woman has her period.

So, the endometrium tissue that is found outside the womb bleeds every month and then heals as scar tissue. This causes a cobweb effect and sicks the free flowing organs together. The period blood cannot escape, causing infection. 

What symptoms does Endometriosis cause?

Women can have mild or extreme symptoms that include:

  • Extremely bad period pain and cramps during and not during menstruation.
  • Very heavy periods with blood clots.
  • Difficulty conceiving.
  • Irritation, infection, and inflammation.
  • Painful bowel and urination movement.
  • Painful sex.
  • Bleeding in between periods and during sex.
  • Difficulty inserting tampons.   

What is my story?

I was diagnosed with Endometriosis after going to the doctors with complaints about painful sex that felt like my boyfriend's penis was covered in razor blades, heavy periods that no sanitary product could stop; waking up at 2 AM having to shower blood off me and wash my bed sheets, painful cramps that would make me throw up and unable to move.

It actually took the doctors nearly TWO YEARS to diagnose me. I had endless ultrasounds and cervical swabs and biopsies. I was asked so many times if I had a sexually transmitted disease. I would wait four months for appointments, traveling for two hours to hospitals.

Finally, I had my laparoscopy date—the 28th July 2017. A laparoscopy is keyhole surgery to diagnose Endometriosis, amongst other things. What they found was scar tissue that had cemented my intestines to my uterus. Not an attractive image.

I woke up, oxygen mask over my mouth and a heated blanket. Under me was what I would describe as a puppy training pad due to bleeding due to an internal camera inserted into my vagina and uterus. I immediately started to have a panic attack. I had never experienced anything like it. I felt so bruised and swollen. Inject some morphine into me now. 

Ellie Kammer, a sufferer of Endometriosis, depicts the feeling of Endometriosis and surgery.

Why does this condition take so long to diagnose?

I was lucky; only a two year wait to be diagnosed. The average time taken to diagnose a woman with Endometriosis is eight years...eight years of trying to manage your pain but not knowing how or why. Eight years of feeling broken and not good enough. Eight years of being afraid of being intimate because you fear the pain. Eight years of going to the doctors asking for help but being told you are overreacting. It only took me two years to get my answer...I couldn't imagine the eight year torture.

I was 17 when I started going to the doctors with complaints. They'd say "You're too young to have anything wrong with you...no one will give you a cervical check at your age." I was persistent, going every single week, going to emergency walk-in clinics when I could because my pain was not fake, was not in my head—I was not overreacting.

I was never educated about the female body. Like many, I had to discover it for myself. Being told it was just my period over and over again was so frustrating and mentally draining.

I was, and still am, scared to be intimate. I am learning and adjusting to my body and new life long condition. To help reduce scar tissue growth, I take Yasmin (contraceptive pill) for three months and have a four day break for my period. I still have horrid pain, but hopefully long term, my scar tissue growth will be prolonged.

Why is Endometriosis not spoken about? Why do women have to wait eight years to be diagnosed? Why is our pain not valid? Why are we told we are "overreacting?" Why is there no education for young girls? Why do we fight this battle alone with no representation?

Why?

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