It Took Thirteen Years for Her to Get Diagnosed with Endometriosis

 

Lauren Peikoff’s painful and discouraging experience is unfortunately very common. According to an account reported in NBC’s Think section, Lauren, an associate producer of a national news program, manages to travel and maintain production schedules while also managing her disease.

The Beginning of Her Painful Journey

Lauren describes the pain as barbed wire stabbing her internally. It began when she was eighteen and a freshman in college. She will always remember the first episode as she said it almost “knocked her off her feet.”

Her pain continued for years with only minimal relief from various pain medications. Although it is her primary symptom, other people with endometriosis experience urinary issues, fatigue, intolerance to food, infertility, and gastrointestinal problems.

About Endometriosis

The disease affects the uterus of one woman in ten. The reason it may take ten years for a diagnosis is that there is minimal information available to physicians about the disease.

Lisa would like to set the record straight about one aspect of endometriosis. The misconception is that people believe that endometriosis refers to the tissue that lines the uterus. In fact, endometriosis is a disorder whereby tissue similar to the uterine lining grows in other places in the body such as ovaries or fallopian tubes.

There is one more misconception and that is the belief that the pain is really part of the menstrual cycle and it is to be tolerated. The disease is too often treated as a gynecological issue rather than being treated as a disorder that affects all parts of the body. The tissue may grow anywhere from the brain to the lungs. It even causes kidney failure and problems in the colon.

The Long Road to (partial) Recovery

One of the first recommendations by a physician who believed Lauren’s pain was caused by her menstrual cycle was the commonly prescribed drug Lupron. The drug causes the body to mimic menopause. Lauren could not tolerate the drug. She said she would rather suffer the pain than suffer extremely disturbing hot flashes.

So Lauren made her way through years of emergency room and doctor visits, receiving IVs for pain and the same message at each visit: that the symptoms were caused by menstruation. Sometimes she was told it was a ruptured cyst and nothing can be done. Surgery was a possibility but it is considered radical and not always covered by medical insurance.

Another roadblock was the fact that in Lauren’s case (as in some others), CT scans, ultrasounds, and MRIs did not detect the disease.

After all else was eliminated, the focus was on laparoscopic surgery. It is expensive and not available to many patients as insurers consider it to be elective surgery.

Lauren not only felt severe pain but also felt extremely frustrated. She finally resigned herself to accepting her situation and just “living with it.”

But that was until she had thirteen straight days of the most severe pain ever. She decided to take control of her life and learn everything about this illness and how to treat it.

Opting for Excision Surgery

Lauren decided her best option was excision surgery which is a skilled technique that removes the disease at its root.

There is another procedure called ablation surgery that burns the endometriosis, but since it does not remove it, symptoms do not disappear completely.

Lauren had surgery on March 1st which coincidentally was day number one of Endometriosis Awareness Month. Lauren gladly paid the coinsurance amount of $7000 because it would have cost over $150,000 without insurance. This, of course, should be added to the thousands of dollars she had spent on other treatments, doctors, tests, and specialists to give a more accurate picture of her medical costs. The final result of the surgery was the removal of about 24 disease specimens from several organs in Lauren’s body.

Lauren reports that it has been one month since her surgery and the pain has lessened substantially. She realizes that she will continue to require treatment for her symptoms, but this is still the best she has felt in many years.

Lauren’s message to any woman who has been told it is “in your head” is to find another doctor.

It is estimated that two hundred million people around the world are affected by endometriosis, but it is greatly underdiagnosed. Lauren emphasizes that the burden of awareness and education should not fall on sick patients. It is the responsibility of the medical community.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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