Endometriosis Awareness Month: One Woman’s Long Journey to Wellness
It Took Melanie McComb a Decade and Hundreds of Miles to Get the Right Diagnosis and Treatment
Many teenagers describe getting sweaty palms or butterflies in their stomach when they begin dating and their hormones are raging. But when Melanie McComb started having amorous feelings, she says it felt like someone was stabbing her in the back.
“I was 16 years old when I started having the severe pain around my back and pelvis like I was being carved with a knife from the inside out. In the beginning, I often experienced this intense, mysterious pain whenever I was intimate with someone,” said McComb, now 31 years old.
Trying to get answers for her daughter’s physical pain, McComb’s mother took her to several physicians in southern Utah, where they lived at the time.
“I got a first and second opinion, then a third and fourth. The doctors all said the same thing: My intense pain was psychosomatic and caused by my feelings of guilt about dating and kissing boys,” said McComb.
Patients with endometriosis can experience severe and chronic pain, infertility, headaches, fatigue, and bowel and bladder dysfunction. Trying to find out the cause of their illness is often time consuming, expensive and frustrating.
“Endometriosis can be hard to diagnose—or easy to misdiagnose. It means that some patients can experience a great deal of pain and discomfort for a very long time. Unfortunately, some women end up having to live with the negative impact that chronic, unresolved pain usually has on the quality of life,” said Matthew Siedhoff, MD, vice chair of Gynecology at Cedars-Sinai and an expert in minimally invasive surgery.
Endometriosis is a condition in which cells similar to the uterine lining are found growing in the wrong places, most commonly on the ovaries, fallopian tubes and in the abdominal cavity. The condition, which can be very painful, affects approximately 10% of women and occurs most often during their reproductive years.
McComb eventually moved to Los Angeles to pursue an acting career and said her health kept deteriorating into her 20s.
“I couldn’t sleep. I was tired all the time and losing a lot of weight. I was in bad shape. One time the pain was so bad that I couldn’t walk, and a friend took me to the emergency room. That was the beginning of finding out what had been wrong with me for so long,” said McComb.
Physicians on duty in the emergency department could not find a specific cause for her severe pain that day, according to McComb. But the results of their diagnostic tests did lead them to recommend she see a gynecologist and be evaluated for ovarian cysts or fibroids.
McComb then consulted two gynecologists, and both thought she likely had endometriosis. For confirmation and treatment, she was referred to Kelly Wright, MD, a minimally invasive gynecologic surgeon at Cedars-Sinai. At 26, after 10 years of seeking relief, she found it.
“This appointment was different from all the other appointments during 10 difficult years of looking for help. Dr. Wright was like a forensic scientist. She listened well, asked many good questions and came up with a game plan to finally solve the puzzle of my pain and illness. It was the first time I thought a doctor actually believed me and cared about me,” said McComb.
McComb’s endometriosis was confirmed by laparoscopic surgery to examine the tissue outside of the uterus. She then underwent a minimally invasive procedure to meticulously remove the endometriosis without damaging surrounding structures or removing otherwise healthy organs.
“Diagnosing and treating endometriosis and pelvic pain in general can be challenging for physicians. I recommend that patients look for a specialist who practices minimally invasive gynecologic surgery [MIGS] and has extra training in treating endometriosis. Look for a physician who takes your symptoms seriously and can offer a plan composed of different treatment options,” said Wright.
There is no cure for endometriosis at this time, but surgery can be a game-changing step for many patients. Research suggests disease progression can be driven by genetics, reproductive hormones and the immune system. Flare-ups of disease can still occur, so management of the condition may include hormone therapy, lifestyle changes and anti-inflammatory medications.
It has been over five years since McComb began treatment for endometriosis and she says she feels healthy and is managing her disease well. She left Los Angeles and is currently in New York, pursuing a degree at Columbia University and a change in careers. She says her long journey to wellness taught her a lot.
“I want to tell all women who are struggling to find answers that they need to be strong advocates for their health. To start with, they should do their own research. There are so many resources available to us now for finding valuable, helpful information. And most of all, I want to tell them to trust their instincts,” said McComb.
Read more on the Cedars-Sinai Blog: Should I Get a Second Opinion for Endometriosis?