Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

"Come back when you're pregnant" They Would Say

by Jillian

"Um, miss Jill, have your doctors talked to you about endometriosis yet?" the radiologist asked as she looked at the blank ultrasound screen.

"Yes," I answered as I slowly sat up from the table, the pain limiting me to just my arms for support, "it was diagnosed in the laparoscopy in September."

She glanced back and forth between me and the file in her hand with all the notes about it, "oh, well that might explain some things..."

I wondered what she could've possibly meant as she searched for the right words. I knew I had it. I could feel where the new endometrioma were growing. I knew what it was doing, the photos in that very op report only confirmed what I felt.

"Well," she finally answered, I could tell she was trying to seem confident in knowing what she was saying, "well, now that we know the hemorrhagic cyst is gone, w-we think the endometriosis may be growing much larger and faster than what we normally see... W-would you like to make an appointment to follow up on this?"

I tried to hide my frustration with being told what I already knew--it wasn't new, they're just starting to understand what I've been talking about, "I already have an appointment, so I'll bring this up when I go in."

"Okay, great." she smiled nervously, relieved.

She said farewell as I left, letting my girlfriend know I was safe to start physical therapy to correct the deformity of my uterus now that there was no fear of a rupturing internal cyst. The fear of an internal haemorrhagic cyst rupturing was gone, for now, but having the endometriosis slowly move up my torso like checker pieces brought a whole new type of fear and frustration.


It wasn't until a few months ago that I finally found doctors that took my concerns seriously and believed what I had to say. We were lucky to catch these problems literally days before I could've suffered real damage.

Old doctors didn't think anything of it, maybe even made it worse with prying the uterus from the intestines like pulling apart two sheets of paper glued together, but the muscles of the uterus are permanently deformed. It's believed that this is the result of rougher handling in prior operations and doctors not treating my pcos and endometriosis sooner.

As a result, one ovary is highly prone to internal haemorrhaging while the other gets uterine tissue backed up, likely the cause of the endometriosis. There are plans for physical therapy to correct as much of the deformity as possible and strengthen pelvic organs and muscles. The doctors worry that they may be too weak to handle various surgeries. Now that I have doctors who don't care that I'm "only 23" or that I don't have kids, I can focus on getting better, not feeling trapped.

I was unlucky to be genetically prone to this--at least one to three women per generation suffering infertility, but I was lucky to have my grandmother educate me on my future before she left me.

"Many men will see you as less of a woman for not having their children," she had said to me, "but that doesn't matter. A real man will love you anyway. If they can't look past that, then they aren't worthy of dating you. I just wish someone had told me that. It took me two divorces to learn that for myself."

She had warned me how menopause will start right after the hysterectomy. She had also told me there was no shame in having excess body hair. I was lucky to learn about what I would one day face, even if I was unlucky enough to be the one of my generation to get the complications.

Up until I started going to the public hospital I go to now, doctors complained of feeling uncomfortable removing the cause of my health problems because of my age and lack of children. I've had a few even deny further treatment until I had a child or two.

That's a rather unfair catch 22.

I grew up in foster care--I'd rather adopt. I don't want to risk having a daughter suffer this. What about the high chances of miscarriages or still births? What if I can't even conceive in the first place?

Although I understand the possibility that I'll change my mind one day, that's something I have to deal with every day after, no one else. It's not a tattoo across my face. I'll have my own regrets and sense of it being worth while.

Right now though, I'm grateful my doctors don't care that I don't have kids or that I'm "only 23". They know many diseases and illnesses know no bias or prejudice, endometriosis being one of them. If endometriosis isn't picky, then I shouldn't be either. I know what works and what doesn't, so if I want to get better, I have to respect who I am and how my body works.

A woman isn't defined by her fertility or parental status just as a mother doesn't have to be related to the children they raise. I'm glad my grandmother taught me that, or else I might not be here. I look forward to a better rest of my life.

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