ENDOSTRONG Patient of the week: Ginny is back to Zumba and she wants you all to know!

ENDOSTRONG Patient of the week: Ginny is back to Zumba and she wants you all to know!

The Evolution of Ginny’s Nervous Stomach

How many endometriosis patients have explained away their inconvenient bowel issues by saying, “Oh, I just have a nervous stomach!”?  Probably too many to count! For so many years, Ginny used that line to explain to her family and friends why she was feeling sick all the time. It wasn’t until much later in life that she would finally learn that her stomach wasn’t nervous after all. She had endometriosis.

From her first period at age 11, Ginny had bad cramps. By the time she was a teenager she was perpetually tired, sick to her stomach and would often have to miss gym class due to chronic pain. No one took Ginny’s health issues seriously. People would say to her, “suck it up!” and “what’s the big deal?” She was also told, “Everyone’s pain tolerance is different!” and “What you are feeling is normal.”  At the age of 18, Ginny went on a birth control pill that helped a little bit with her painful cramps. Every night she slept with a heating pad.

Starting a Family

Ginny got married at age 25 and soon thereafter went off of birth control.  She became pregnant right away and like so many other endometriosis patients delivered her baby a few weeks early via c-section. Her baby was foot down breech. Ginny got pregnant again one year later and had a very rough first 8 weeks of pregnancy. She had a lot of cramping and spotting and her beta wasn’t rising as expected. Her doctor told her she was going to miscarry. The doctor was wrong and she was relieved to deliver her second child via c-section again, a few weeks earlier than expected, like with her first child.

Something Isn’t Right

Ginny had an IUD put in after the birth of her daughter and for a few years she was feeling okay.  Gradually, her pain started escalating. At around age 30, Ginny had a cyst rupture on her ovary. The pain was intolerable and she told her gynecologist, “something isn’t right.” Her gynecologist did a laparoscopic surgery on Ginny only to find her abdomen full of endometriosis. The doctor cauterized whatever she could, but admittedly couldn’t get all of it. After the surgery, Ginny felt okay for about 6 months. Then she started feeling terrible again. She frequently would grow ovarian cysts that would rupture.  Her gynecologists said to her, “There is nothing more I can do for you. It is what it is.” Ginny found another doctor with a kinder demeanor who was more sympathetic to her pain. The doctor put Ginny on Lupron for 9 months. The last four months of Ginny’s Lupron cycle was hellish for her. She was exhausted, had hot flashes and was incredibly grouchy. She searched for more solutions.

A Deadly Surgery

Ginny found a gynecologic oncologist who said she could help her. This doctor eventually teamed up with a reproductive endocrinologist to perform Ginny’s surgery. During the surgery, the doctors removed a significant amount of endometriosis by cauterizing it and also took out her fallopian tubes and her appendix. Ginny came out of surgery feeling worse than ever and continued to feel terrible. She called the surgeon to talk to her about her overall sick demeanor, especially her new symptom, painful urination. The doctor brushed her off and assured her she probably just had a urinary tract infection. Ginny was prescribed an antibiotic over the phone. Two weeks after surgery Ginny attempted to go to work for a half a day to try and get back to her routine. On her way to work, Ginny was in a car accident, a driver hit her car from behind. Ginny was worried about the impact from the accident on her freshly operated abdomen. She decided to go to the ER to get checked. A CAT scan showed that Ginny’s surgeon failed to take out a piece of her appendix during surgery and she had developed a serious infection. That is why Ginny had been feeling so sick. Ginny was brought immediately back into surgery and came out with a Jackson Pratt drain and a 6-day stay in the hospital.

A Life of Pain

Ginny never felt well after the surgery. Her endometriosis kept getting worse and worse.  She was having trouble working and playing with her young daughters. Her gynecologist could only offer her a 30 day prescription of Oxycontin to help with her pain. Ginny would take one every night before she went to bed. Her gynecologist would always give her trouble refilling her prescription. Her doctor would say, “this is not the answer.” Ginny responded, “I agree! PLEASE, you’re my doctor, make me better!! I will do anything and try anything.” Her doctor had no answers.  Ginny would sit at her desk at work, crying from the pain. The pain felt “like a barbed wire that was on fire” had wrapped itself around her organs or “an ice pick was being scraped back and forth” her pelvic region.  In her desperation to feel well, Ginny again took to the internet to find an answer to her pain. That is when she found Dr. Seckin.

A New Surgeon: A New Life

Ginny was lying on the operating table, tears rolling down her cheek, thinking about her children as she prepared for surgery with Dr. Seckin.  She was scared that she wouldn’t wake up.  Dr. Seckin wiped her tears and said to her, “I promise I am good. I am going to make you feel better.”  And he did. Ginny left the hospital with 30 pain pills and only took ten to make it through recovery. She now lives without the daily use of medications such as Ambien, Oxycontin and Lexipro. She is also back to her Zumba class and is looking forward to shedding the almost 50 pounds she gained while struggling with this debilitating disease over the years.

Advice to Other Patients

“Be your own advocate. Know your own body. Trust your body. Follow your gut. If I would have listened to my own body, I would have been my own advocate until somebody listened to me. “

For Her Daughters

Ginny’s biggest fear is that her girls will have endometriosis. Her hope is that Dr. Seckin will be there to take care of her daughters if they need him. Ginny stresses the importance of educating young women about endometriosis and telling them this pain is not normal!

Thank you, Ginny, for bravely sharing your incredible story! Ginny embodies perseverance in adversity which is one of the many traits that make her ENDOSTRONG. She hopes by telling her story, women will get the help they deserve.

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