During these years women see an average of eight doctors before finally being properly diagnosed.
No one believed me, Claire*, 27, tells SELF.
They made me feel like I wanted to be sick.
Design by Stephanie Indrajo
Before that, they checked my kidneys, shot me up with penicillin, all kinds of things.
One physician even treated me for an STDI didnt have one.
I was a virgin, but she never believed me.
To say I felt crazy is an understatement.
Costly laparoscopic surgery is the only way to confirm an endometriosis diagnosis, which complicates matters even more.
Still, red flags for endometriosis are often brushed aside.
I was diagnosed with endometriosis in 2013, at age 27, Sharon, 31, tells SELF.
The endometriosis had gone undetected for 15 years, even though I showed all the signs.
Related:Lena Dunhams Endometriosis Has Hit a Painful New Extreme
Janelle, 33, experienced something similar.
Her health history had no red flags.
And then it all changed.
It was March 2014.
I had just had my cycle, Janelle tells SELF.
I went to pee and felt a sudden pain, like someone was stabbing me in my stomach.
I couldnt pee because there was this constant dull ache.
I called my husband, and he carried me into the ER.
They told me I hadpelvic inflammatory disease, and my thought was from what?'
The doctors prescribed Janelle antibiotics, but the sting persisted, so she made an appointment with her gynecologist.
Her ultrasound showed a cyst, so she took contraceptives to help it shrink.
But things got worse.
I couldnt get out of bed.
Nothing alleviated the pain.
I cant function with the amount of pain Im feeling.
Janelle was right: The cyst had tripled in size, meriting emergency surgery two days later.
When I woke up, the doctor personally apologized to me.
She wasnt expecting what she foundshe told me I had endometriosis everywhere.
I had never heard the word before that day.
The system is ill-equipped to deal with [endometriosis.]
The disease requires different specialties that often dont communicate with one another.
Related:Doctors Are Debating What Endometriosis Really Isand How to Treat It
Janelle agrees.
Shes been bouncing from fertility specialists to acupuncturists regularly.
Theyre not used to communicating about this disease at all.
Why isnt there an age where women are diagnostically examined like with breast cancer and mammograms?
Even if nothing is detected, it would at least begin a dialogue.
I wouldnt wish this on anyone, she says.
Cohn hopes improved research will change this.
Marel, 35, knows this all too well.
I struggled with horrible periods since I was a teen, she tells SELF.
I was missing school or laying in the nurses office; I dreaded that time of the month.
Those missed school days became missed work days as Marel matured.
This is why a growing number of doctors recommend laparoscopic surgery to remove the lesions.
Destinees adolescent periods were regular and light, lasting four days max.
I never even had cramps!
After I had my son in 2006, my cycles got longer and heavier.
It took five months of bleeding to end the back-and-forths to the doctor.
Sure enough, an exploratory laparoscopy found endometriosis.
I didnt know what endometriosis was until I was diagnosed.
Fast forward years later, and I also developed fibroids andadenomyosis, rendering me infertile.
I decided to have a total hysterectomyremoval of my cervix, uterus, and both of my fallopian tubes.
I feel much better, but its not easy to accept.
Undiagnosed endometriosis has the potential to wear down ones mental and emotional state, as well as close relationships.
That was the case for Maria, 40.
The hospital visit turned into a five-day stay.
When I got the official diagnosis, I relayed the news to my partner.
He accused me of having the illness and covering it up all the years we had been together.
I had never felt so completely worthless as a woman.
Ive never confided in anyone about this, until now.
Abandonment, she says.
That’s what endometriosis feels like.
*Some names have been changed.
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