“I Recall The Pain Being Unbearable”: Why Is It So Hard For Doctors To Diagnose Endometriosis?

November 16, 2018  |  

I need a hot water bottle...stat!

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We’ve heard famous people talk about having endometriosis, and the lengths they felt it necessary to go in order to deal with the symptoms of the disorder. It can show itself through long-term back and pelvic pain, menstrual bleeding that requires a change in feminine products every hour or two, pain during sex, vomiting and more. Singers Monica and Halsey talked about how endometriosis impacted them, and actress Lena Dunham was especially open about her struggles with it and her decision to have a complete hysterectomy. Actress Tia Mowry has also been vocal. Each woman’s story had a similar issue: It took way too long for their condition to be accurately identified. For example, Mowry told SELF earlier this month that she knew she was dealing with something very serious, though it took years before she would be correctly diagnosed.

“I’d been experiencing extreme pelvic pain for years and went to several doctors. Each one would brush me off,” she said. “‘Those are just really bad cramps, some women get them more severely.'”

Krystle Bell Saulsbery can relate. One in 10 women of reproductive age have the disorder, and the 33-year-old is one of them. The founder and CEO of pageant consulting company The Glamour Effect suffered for years before being properly diagnosed with endometriosis.

“Beginning in middle school, I started to experience periods with a heavy flow that were painful and made me nauseated,” she said over e-mail. “Each month, I dreaded getting my period because I knew my common symptoms of nausea, vomiting, pain, fatigue and a flow heavy enough to require frequent changes of clothes would come back. I recall the pain being unbearable and hard to manage.”

The pain came so often, it was to the point that Krystle initially assumed what she was dealing with was normal and “something I just had to deal with.” However, the symptoms got worse as she got older. She was nervous in anticipation of her menstrual cycle. When she would speak to doctors about her experiences, the best they could give her for some time was over-the-counter medicine recommendations.

“When I was about 13, I had my first gynecologist appointment including a pelvic exam but I was not given a diagnosis,” she said. “Throughout my teenage years I continued to see doctors to try and resolve my symptoms, but I was often referred to over-the-counter medications to manage the pain. It wasn’t until a trip to the emergency room, when the pain was absolutely unbearable – I compared it to having someone step on my uterus with a steel-toed boot – that I was diagnosed with endometriosis and referred to a local gynecologist. I always say that the night in the ER changed my life because it put me in contact with a doctor who listened to me describe the pain I was experiencing and was able to diagnose and understand my condition.”

She was officially diagnosed in 2008 at the age of 23. When she was finally able to put a name to what she was feeling, everything changed. The doctor who diagnosed her eventually helped her to be able to manage her symptoms.

“Since then, I’ve used both prescribed medications and holistic treatments to manage my endometriosis, which have made a significant difference in my symptoms,” she said. “Also, a diet high in fiber and running has been beneficial to my overall health.”

Nowadays, Krystle uses her connection to young women through her pageantry work to educate them on the disorder. The former pageant titleholder said she wants to empower women and girls to be able to thrive “physically, mentally, emotionally, spiritually and financially.” She even was able to help get the city of Montgomery, Alabama and the state as a whole to designate March as Endometriosis Awareness Month. But more than anything, she wants to encourage all women to speak up and advocate for themselves when dealing with medical professionals who may brush aside their symptoms and concerns.

“While some doctors may dismiss your pain and other discomforts at first, it’s important to keep the dialogue open and ensure your voice is being heard,” she said. “If needed, which was beneficial in my case, I encourage women to seek opinions from several doctors to ensure they feel comfortable and confident discussing symptoms and aligning on a treatment approach. It is important for women to be advocates for their own health.”

“Going forward, I hope to continue empowering other women to advocate for themselves when seeking treatment and educating doctors about the importance of open communication when it comes to endometriosis,” she added. “No woman or girl should suffer in silence like I did for many years.”

If you have endometriosis, or think you may be suffering from it, visit SpeakEndo.com

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