“You must be very sensitive”

Nov 28 _EndoGraves.jpg
Sarah Gay-O’Neill ©

By Sarah Gay-O’Neill

This temporary flesh housing….

Used to feel like home.

Or maybe it never did.

It’s very easy to normalize pain when people in authoritative positions, like doctors, tell you everything is fine and ‘normal’…but is it normal to feel the drag of a rusty pitchfork clawing at your insides?

So many people told me that it was normal.

That it was normal for a body that menstruates…to be painful.

“You must be very sensitive”, they would say.

So I normalized it.

I normalized it for 21 years…until the pain became so loud…that it would throw me to the ground…and I would nearly lose consciousness…

Apparently this isn’t “normal”.

This is endometriosis…and it has destroyed my reproductive system…

I was diagnosed with stage 4 disease after having undergone a 5 hour surgery…losing my right ovary and fallopian tube as well as disease that had spread throughout my uterus, entire pelvis, and abdominal wall…

Post surgery I learned that endometriosis is a chronic disease for which there is no cure. I also learned that while there is so little information about it…1 in 10 people with a uterus have it.

It is more common than diabetes…

But if it is this common…why is it that the average person has never heard about it….?

Why are the treatments for it still a mystery?

Drug treatments like Lupron injections, a chemotherapy drug more commonly used for prostate, breast, and ovarian cancers; are the common practice. However, since the disease has no cure, these injections only stun the disease temporarily- and often have their own cocktail of miserable side-effects. Excision surgery is the only known effective treatment for endometriosis…and despite the disease being so common….there are less than 100 doctors who specialize in endometriosis excision surgery…

2 months after my surgery… an ultrasound has revealed that the disease has already returned… and is currently chewing away at my one remaining ovary…like a weed overtaking a garden…slowly choking the plants…

I have another surgery scheduled for August of this year…it’s the soonest my doctor can get me in…

I am so fearful that I will lose my one remaining ovary…

My family is pretty small…

I had always had this romanticised idea that one day if I had children…I would somehow be able to connect their lives with the lives of my family who has come before me. See faces of grandmothers from generations ago…mannerisms and quirks that weren’t mine….but someone’s from deeper in the family tree. To be able to meet my past by way of meeting this fresh new human that I had some part in creating.

But that won’t happen.

Once upon a time I thought it was student loan debt that would prevent me from having children…

Then it was finding employment during the recession….

Then it was finding affordable housing….

Finally…my life has settled down in some kind of way where if I wanted to have children…I could…

But endometriosis has stolen that from me…

And it fucking sucks.

I am 34.

It took 21 years to finally be diagnosed with endo…despite having seen no less than 20 doctors for agonizing pelvic pain, having 2 D&Cs (to check for cancer), 100’s of ultrasounds/ CT/ MRI scans, countless hormone therapies fail to make the pain bearable…etc…etc..etc…..

Unfortunately female pain is normalized too often…and situations like mine aren’t unique.

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Sarah Gay-O’Neill is an illustrator and multimedia artist living in Somerville, MA. She is curious and observant, revealing tiny truths that others may miss in the world around them. Sarah has a particular fondness for the daily quiet of everyday life, with a passion for activism and community engagement all while riding her bike around the city. Sarah draws inspiration from her love of nature, and her varied travels. She counts Vermont, Wyoming, and Connecticut as former homes. She has, however, spent the majority of her life living in the Boston area.

Sarah is regularly showing work in local galleries and recently finished two large scale murals in downtown Boston. She frequently live illustrates for Saks Fifth Ave, Jo Malone London, and various other fashion and perfume companies. Sarah is a professor of illustration at Lesley University College of Art and Design, works in media technology at Harvard University, and teaches youth programs at both the Museum of Fine Arts and MassArt, where she received both her BFA and Masters degrees.

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1 Comment Leave a comment

  1. Dear Sarah, my best friend has exactly the same story and she suffered a lot. She ist 36 and was diagnosed finally last year. She used to suffer from several symptoms like heavy pain, eating problems, peeing problems, intestinal problems. The endometriosis had many bad effects on her body. Doctors told here she should change her eating behaviour, they denied tests, they told her she is overly sensitiv, they told her it is psychosomatic and that she should relax. Finally someone took her serious after many years and they found an endometriotic cyst in her belly as big as a an orange. She cannot have kids anymore and she suffers again. Thank you so much for the article! People should be educated about this. Lot´s of Love from Europe…Eva

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