Endo Can’t Take My Happy Project: Tara Hilton

By March 10, 2014Uncategorized

Tara lives in Newark, Delaware. She was diagnosed with endometriosis in 2006. This is her story.

Tara

It began with a surgery that left her family in shock.

“I was first diagnosed after undergoing surgery to remove two large cysts on each of my ovaries that were discovered in a pelvic ultrasound,” explains Tara. “When my gynecologist came out to let my family know how surgery went, she left them with the impression that I was completely full of cancer and wouldn’t live much longer. So initially, I was devastated and thought I was going to die.”

Tara had been suffering with pain since the age of 14. Over the years, the pain got worse, and her surgery had left her with more questions than answers. Did she really have cancer?

After visiting a Reproductive Endocrinologist, she was finally diagnosed with stage IV endometriosis. “I was still very devastated as there is not a cure, but I was also relieved that all of the other pain and suffering I had endured since the age of 14 was finally validated,” she says.

Years of Medical Treatments

To relieve the symptoms of endometriosis, Tara has undergone countless medical and alternative treatments including over 10 cleanup and excision surgeries, continuous birth control, Lupron injections, physical therapy, taking up an endometriosis diet, massage therapy, monthly scans, blood work and finally, Zoladex implants.

Still, the pain endured.

“One of the most severe pains I deal with is actually having endometriosis on my bowels; my bowels are actually fused to my uterus,” says Tara. “The pain is so severe that it causes my nose to run as a reaction and I usually have a trash can in front of me because the intense, continuous pain causes me to get sick.”

What many women do not know about endometriosis is that adhesions (endometrial tissue that is displaced and fixes itself to other parts of the body) can implant just about anywhere – even in your brain. Some women suffer from digestive problems, urinary problems, and painful bowel movements because the endometriosis has fused organs together.

My doctor once said, “think of your intestines as a snake, and the adhesions have stuck the snake to a wall. If it’s not able to move, then you are not able to properly digest.”

Tara says her adhesions have made it difficult for her to travel or even plan out her day.

The treatment that has seemed to have helped her the most were the Zoladex implants. Zoladex is a strong drug often used to treat prostate cancer. The drug was found to have an affect on treating women with endometriosis.

“I still have pain, but since starting treatment with the Zoladex implants, it has been much, much better,” she says. “I have to limit my physical activity as it always has a direct impact on pain level. Walking long distances or heavy lifting usually leaves me in pain for a couple of days. The downside to Zoladex is that I need to have my implant every 21 days, so I feel as if I live my life on a revolving 21 day cycle. I have to consider this when planning vacations, traveling as part of my career and in any other plans I do in life. I have to ensure I am able to get this implant or there are severe pain implications.”

Happy and Hopeful

Tara has hope that there will be a cure for endometriosis. In the meantime, she wants to make sure to spread the word and raise awareness.

“Please pay attention to your body and know that it is NOT normal to live with severe, chronic pain and bleeding,” she says. “Go seek advice and look up endometriosis experts in your area. Not all Doctors or gynecologists are knowledgeable on this disease, so please don’t assume one doctor knows everything. There is help out there!”

Though her journey with endometriosis is hard (her next surgery will be a risky, 8 to 10 hour hysterectomy), she still keeps a smile on her face.

“Endo definitely tries to take my happy away but my own perseverance helps pull me through,” says Tara. She has lost many friends in the process, because “they don’t understand when I suddenly have to cancel plans or cannot attend a gathering because of my pain.”

She has her bad days. “I am human so I do have the “why me” days and I have had breakdowns after leaving my doctor’s office and feelings of hopelessness, but I bounce back quickly!”

Happiness, for her, comes through traveling and seeing new sights. “Being a part of other cultures and experiencing new things is so rewarding to me,” she says. “I love to entertain others, whether planning a fun party or cooking for them, it brings me joy to make others smile.”

She is excited to be part of the Million Women March for Endometriosis and to meet other women she can identify with.

In the meantime, she is trying to stay happy and hopeful through advocacy. “I want to help others so they don’t reach the critical state I am in. I want to help implement early detection through education in high schools and colleges and help battle the insurance companies to ensure they cover our treatments and to demand a higher quality of healthcare than throwing a pack of birth control pills at us as a treatment. My long term hope is for scientists to identify the genes and traits that cause endometriosis and to find a cure!”

She is thankful for family and friends: “I have to say that if it weren’t for my boyfriend, John, daughters Audrey and Bree, mom, brother, sister and a handful of close friends, I wouldn’t make it through each day. But in the end, I am strong and determined to make a difference and help find a cure!”

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No, endometriosis, you can’t take Tara’s happy!

 

Main photo credit:photo credit: <a href=”http://www.flickr.com/photos/34905917@N08/4479633852/”>Bill Kuffrey</a> via <a href=”http://photopin.com”>photopin</a> <a href=”http://creativecommons.org/licenses/by/2.0/”>cc</a>

 

 

Main photo credit:photo credit: <a href=”http://www.flickr.com/photos/34905917@N08/4479633852/”>Bill Kuffrey</a> via <a href=”http://photopin.com”>photopin</a> <a href=”http://creativecommons.org/licenses/by/2.0/”>cc</a>

 

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