An Uncommon Diagnosis

At the young age of 24, Julia Costa, standing on a pristine white-sand beach in Costa Rica, seemed to have the world at her feet.

She was still feeling the pleasant after-effects of a recent study abroad trip she took earlier in the year. She was in a good place spiritually and mentally. Just one week before, however, in early October, she had received some very strange news from her gynecologist. Costa was told that she had endometriosis.

1 in 10 women have endometriosis.
Source by endometriosis.org (Graphic created by Lori Perdichizzi)

“I was distraught. I didn’t know where I was. I had thought I found my place with all this traveling…and then I got that diagnosis and we had to go on this trip, it was already planned, so, we went.” Costa said.

Trapped in the joyous atmosphere of a family vacation, Costa kept silent and did her best to stay positive. She knew something was wrong internally and had been for a while but couldn’t pinpoint the problem specifically. At the time, Costa was on her menstrual cycle, which made it hard to distinguish between normal period side effects and endometriosis symptoms.

Costa describes the symptoms she was having prior to a family vacation to Costa Rica. (Video produced by Lori Perdichizzi)

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Costa collecting her thoughts on the beach before an encounter. (Photo courtesy of Julia Costa)

Feeling uncomfortable and confused, she tried to get through the vacation without her symptoms being noticed. As Costa collected her thoughts on the beach, she was approached by a concerned looking local. In broken English, the woman said, “you’re having trouble having a baby?”

Taken aback, Costa looked at her wide-eyed and said, “what?!”

“You’ve just been diagnosed, you can’t have a kid?” the woman repeated.

Costa was stunned. Though she kept up her guard, she was intrigued by what the stranger had to say. Costa pushed forward with the conversation. As it turns out, this was no random encounter – the woman standing in front of her was a fertility doctor who had seen many cases of endometriosis. She recognized Costa’s symptoms and kindly explained to her that although the disease is debilitating, it doesn’t have to be the end of the road. Costa might still be able to manage her condition and live a normal life.

Costa took these words with comfort, but unable to escape her persistent pain, she feared that the future would not be that simple.

According to endometriosis.org, endometriosis (or endo, for short) is found in the pelvic cavity. Pain associated with the pelvic area often correlates to the menstrual cycle, but women with endometriosis can also experience pain between periods and at other times during their monthly cycle.

ENDOMETRIOSIS BODY GRAPHICS
Source by endometriosis.org, pelvic-image credit: scientist.com (Graphic created by Lori Perdichizzi)

“I lived in like a sort of foggy limbo for a while,” Costa said.

Upon returning from Costa Rica, she began to feel the full weight of her symptoms. Far from improving, the pain was actually getting worse. After a few unbearable months of pain and indecision, Costa finally decided to call her gynecologist and ask what options she had.

Costa discusses going back to the gynecologist after her symptoms worsened. (Video produced by Lori Perdichizzi and photo courtesy by Julia Costa)

Costa was re-examined by her OB-GYN in mid-January, at which time her gynecologist discovered cystic growths forming near her ovaries. She would need laparoscopic surgery.

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Dr. Julianne Hughes, a pediatric resident for Cohen’s Children Medical Center. (Photo courtesy of Julianne Hughes)

“The diagnosis is definitely made with laparoscopy (an open surgery), so typically only an OB-GYN or surgeon would make this diagnosis,” said Dr. Julianne Hughes, a pediatric resident (PGY 3) at Cohen’s Children Medical Center in New Hyde Park, NY.

The Mayo Clinic confirms that the most reliable way to diagnosis endometriosis definitely is through laparoscopic surgery. This minimally invasive procedure can provide information about the location, size, and extent of endometrial tissue growth. Endometriosis and cysts can also be removed during this procedure. There is, however, no guarantee that the disease will not return.

Costa knew that surgery would not treat her permanently – it would only allow her to live pain-free for up to a year before her symptoms returned. She also knew that it could potentially jeopardize her chances of conceiving a child. But, with worsening pain and few alternative options, Costa knew that something had to be done.

Laparoscopic Surgery Options:

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Source by DrSeckin.com and CenterForEndo.com (Graphic created by Lori Perdichizzi)

Laparoscopic surgery (laparoscopy or “lap surgery” for short), according to HealthLinkBC is widely considered the most effective treatment method for this disease. The procedure removes misplaced endometrial tissue (by laser, heat or excision) from the body and can – if performed correctly – dramatically reduce or totally eliminate the symptoms. As such, it is a preferred treatment option for endometriosis specialists and sufferers alike.

But, despite its prevalence and popularity, ‘lap’ surgery is not a permanent cure for endometriosis. It is, rather a temporary solution that restores near-normal body function and provides women with a brief window of time (typically six months to a year) before their symptoms return.

“It’s not a fix, it’s a small band-aid. You can either feel less pain for a year or have enough space to potentially have a baby,” she explained.

In July of 2015, Costa went into surgery. She was comforted by the thought of living without pain but knew deep down that it would only be temporary.

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