Sunday, March 31, 2013

Courtney's Story

It is the last day of our Endometriosis Awareness Month (and also Easter Sunday...happy Easter!), so I wanted to share the story of a good friend of mine whose journey with endometriosis was not easy. Her story sheds light on how serious this disease can be, and how it can often be mistaken as other conditions or disorders. Thankfully, she is doing well today at twenty-five years old, proving that she can overcome anything with the help of God!

To learn more about endometriosis, read my previous post or visit Resources to Help.

Courtney's Story

At the young age of ten, Courtney started her period. While most ten-year-old girls are still concerned with the simpler things of life, Courtney was beginning her difficult journey of pain, frustration, and hopelessness. Almost immediately she experienced extreme cramping, abdominal pain, and digestive problems. Although she was vocal about her discomfort, she was told what many girls are told: “Cramps are normal.” There was nothing to do except try and ignore what she was feeling.

Years of this passed, and by Courtney’s sophomore year in high school, coping wasn’t an option anymore. She began missing school to deal with the pain, and her grades suffered because of it. She was taking nearly 1000 mg of anti-inflammatory pain medication a day, yet still could not function normally. Doctor’s visits were becoming a regular part of her life, but all of them led to a similar conclusion: Courtney was just a typical teenage girl dealing with PMS and depression. At one point, her doctor diagnosed her with IBS and Acid Reflux, but medications to treat these conditions only intensified her nausea.

It was within this state of frustration and hopelessness that Courtney surrendered herself and her pain to God. She felt incredibly alone, like everyone was against her. Although she knew she was in pain and although she knew something was wrong, no one seemed to believe her. Relying on God helped her: she knew He was with her and understood her, and she knew He had a plan for her life.

Courtney tried to seem normal to those around her. She didn’t want to lose her friends because of her pain, and yet she simply couldn’t keep up with what others were doing. It made it even worse feeling like there wasn’t a “real” reason to give her friends as to why she couldn’t spend time with them. As she completed her sophomore year with barely passing grades, she pleaded with her parents to go on independent study. They believed that she was depressed and so agreed, hoping a different situation would help somehow.

Tests continued, but no conclusive results ever came except. Because of the anti-inflammatory medication she had been taking, she developed ulcers. This pain on top of what she already was experiencing made life seem unbearable. She no longer could sleep or eat normally and so began losing weight each week. Courtney confessed that at that point, she began praying that God would take her life. She could see no hope, no light at the end of the tunnel. No doctor could give her a diagnosis, and it seemed God was not going to heal her. The burden of her pain, as well as the strain it was placing on her family, sent her into a deep depression.

Finally, her doctor requested that she have an endoscopy at Valley Children’s Hospital. Then a junior in high school, she weighed only 88 pounds. While under anesthesia for the endoscopy, her heart rate dropped dangerously low, and the procedure was stopped right then. She came out unaware of what had happened, and that evening she was sent to the eating disorders clinic at Stanford. She had been—without her knowledge—diagnosed with anorexia that was leading to heart failure. Once again, she felt like no one was listening to her or understanding her pain. She was at a breaking point, trying to convince herself to fight when she wondered if anyone cared. 

After a psychological test, the doctors at the clinic confirmed that she did not have an eating disorder, but suggested she stay to treat her heart. Being with girls her own age seemed to be a better environment than the cardiac unit at the hospital. Although Courtney did not have an eating disorder, she learned something valuable while at the clinic: She had to eat, even if it was painful or uncomfortable. After some time, her heart was stronger, but the financial strain was huge on her family. Courtney felt responsible for the burden and wondered if her family was angry with her. She desperately wanted their understanding and support, but felt instead that she had to be the strong one.

As there still were no clear answers for Courtney’s condition, she began slowly accepting a life of pain. She turned to God for help and strength, and even though the pain was still there, she knew she could live with his help. She trusted that He was with her and He would keep her safe. That year she was able to make up credits and graduate with her senior class, an incredible accomplishment for her.

After graduation, Courtney continued to search for answers. Finally, as a last resort her mom suggested going to a gynecologist. They had never considered that Courtney’s problems could be related to women’s health since she was so young when it began. In one visit, the doctor had a fairly certain diagnosis: Courtney had textbook symptoms of endometriosis. She was quickly put on a birth control regimen, which helped tremendously for a short time. After a year, though, the pain returned, and so a laparoscopy would have to be done to see the extent of the situation. Even though Courtney wanted to avoid surgery at all costs, she knew this could offer her a true answer. She agreed to the surgery.

The surgery proved that Courtney had an extremely severe case of endometriosis covering her ovaries, uterus, bladder, colon, and appendix. The endometriosis was so aggressive that her organs were physically weighed down; some of them, such as her appendix and ovaries, had even adhered to her abdominal wall. Strangely, this news brought Courtney a huge amount of relief and peace. After years and years of suffering with no answers, there was a diagnosis! Finally, she knew what was wrong.

With a clear diagnosis, doctors could begin to help Courtney with appropriate treatments. Courtney’s doctor prescribed Lupron, which brought relief from pain but had the side effect of menopausal symptoms. Still, Courtney recognized that for the first time in her life, she had days, weeks, and even months where she felt pain-free.

Unfortunately, endometriosis is not a condition that can be cured. Surgery and treatments help, but they only limit or postpone the inevitable return. Courtney has not given up, though, and she persists with strength, faith, and even humor. “At twenty-five,” she says, “I like to tell people that I’ve already been through menopause twice.” She is a vocal encouragement to others suffering from endometriosis and no doubt has a future in spreading awareness of endometriosis.

Today, she continues to take charge of her health. She is currently part of a clinical study for a new treatment, and this is providing some relief. Even though doctors have recommended a hysterectomy, she clings to the possibility that something else may be done in the future. The years she faced with hopelessness and helplessness are gone. She lives each day with a hope in the God who heard her, even when she felt that no one was listening. She knows that He guided her journey, and He is with her still, directing each step of her life. 

If you would like to contact Courtney, please click here

2 comments:

  1. This is a really intense story. I think the strangest part is that she was diagnosed with anorexia. She was really young that her family didn't take her seriously. I'm glad she is healing and has an accurate diagnosis! Does she feel like that was an answer to her prayer? Or does she still ask God for healing?

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    1. I know, the whole being diagnosed with anorexia is the most disturbing of it all! I've actually asked her about her family not believing her because it seems incredulous! Why would a family not believe? She said she was a bit of a drama-queen when she was young, and she also said none of the test results ever showed anything. As for her diagnosis being an answer to her prayers, yes she feels that way. She had such relief once she knew what was wrong. She still asks for healing, but she has accepted that this may be part of her life now. She's really an incredible person!

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