A lot of women may experience menstrual cramps right before and during their menstrual periods, but for some women there might be more to the pain than mere discomfort.
One in 10 women of reproductive age is affected by a chronic disease called endometriosis, a disorder in which the type of tissue that forms the lining of the uterus, the endometrium, is found outside the uterus, according to the American College of Obstetricians and Gynecologists.
With endometriosis, the tissue can be found on the ovaries, fallopian tubes or other organs in the pelvis. The misplaced tissue responds each month to the hormonal changes of the menstrual cycle. It builds up, breaks down and bleeds. But the blood has nowhere to go, according to Advocate Health Care officials. This causes surrounding tissue to become inflamed or swollen, and it can also cause scar tissue. Some of the symptoms include unusually severe menstrual cramping, serious cyclic pelvic pain and painful intercourse.
Endometriosis Awareness has been taking place across the world during the month of March to raise awareness about the disease that affects about 176 million women worldwide, according to the website endometriosis.org. Many women remain undiagnosed however, and are therefore not treated.
“I see patients everyday with pain where it might be endometriosis,” said Dr. Denise Elser, a urogynecologist at Advocate Christ Medical Center in Oak Lawn. “I see a lot with urinating pain and painful bowel movements where if they don’t get better with a muscle relaxer and physical therapy, I expect it’s endometriosis.”
Elser saw such a patient about a couple of weeks ago -- a 20-year-old college student who was athletic, but couldn’t work out or run for several months. She was treated for burning urination and pain with sex, but it wouldn’t get any better with antibiotics. She was diagnosed with endometriosis.
Elser said when there’s severe cramping that causes women to lose their quality of life – they miss school or work - then they should seek treatment.
“There are a lot of ways to treat (endometriosis),” said Elser, who has said most women with endometriosis tend to experience symptoms in their 20’s, but cases can appear during the teenage years or into the 30’s. “If it’s not treated it can lead to chronic pain and infertility. We want to catch it and prevent suffering from happening.”
She said the first line of treatments is hormone therapy, which may be an injection or oral birth control. And there’s also surgical treatment.
“You treat it like you would cancer,” Elser said. That would include hormone, surgery and chemotherapy. The ultimate treatment is to remove the ovaries, but “we don’t want to on young women unless there is no other option,” she said.
A new treatment is a hormone called letrozole, which Elser said shows great promise of treating endometriosis without side effects doctors have seen with other hormones.
“There are always new things on the horizon,” she said. “Scientists are always working on testing.”
There is no cure for endometriosis, but treatment can help reduce pain and infertility risk as well as improve overall quality of life, according to Advocate officials.
The cause of endometriosis is not clear, though genes may have something to do with it.
“It can run in families. There’s definitely a heredity trait,” said Elser, whose 20-year-old patient’s mom and aunt also have endometriosis. “Women might think that’s how the family is and don’t think to get it treated. I’ve seen women who’ve been to a gynecologist, complained about cramps, and told to take birth control pills and that was it. It was not explored further.”
Holly Brenza, Oak Lawn’s Advocate Christ Medical Center and Advocate Children's Hospital public affairs and marketing specialist, said she thinks she would not have explored her severe cramping any further and learned she had endometriosis if it wasn’t for a cyst growing on her ovary, which was causing a lot of pain.
Prior to that, she always had severe cramps, the same problem her mom had. Her mom told her that’s “what it is, what we go through as women.” But when Brenza, who was always in tears and couldn’t walk or stand up at one point, started complaining about the pain in her lower abdominal area to her mom, her mom realized that maybe it wasn’t normal. Brenza went to see her primary doctor and learned she had a large cyst on her ovary.
“I was 18 when I found out so I didn’t know too much about (endometriosis) at that point,” said Brenza, who was diagnosed with the illness in 2012, following her surgery. At the time, she was a freshman in college and worked part-time during the summer for Advocate Christ Medical Center physicians at their private practice.
She had surgery to remove the growth and was then started on birth control. She later had a second surgery in 2013 to remove the endometriosis growth as it had returned. Now she’s on a birth control that suppresses her menstrual cycle to four times a year.
“That’s what has been working best for me,” Brenza, 23, said. “Luckily I didn’t have to have any more surgeries. I’m having periods less, which means I have less pain. There is definitely an improvement with frequency of pain.”
Brenza sees her doctor every year. She and Elser encourage other women with endometriosis to be seen by their gynecologist on a regular basis.
“The most important thing is to stay on top of it,” Brenza said. “If you let it go, it’s going to get worst and come back. Make sure you are keeping your appointments and at least your annual checkups with a gynecologist. Be honest about the symptoms you are having, keeping a log with what happens helps. You’re in control. Don’t let it ruin your life.”