Most women agree that periods are the worst. Cramps, mood swings, and the inconvenience of dealing with menstruation are pretty thoroughly annoying. Some women only catch a break with the use of hormonal birth control or pregnancy, until menopause. However, for roughly 10% of menstruating individuals, a painful disease called endometriosis (endo for short) can make periods, and sometimes life, unbearable. According to the World Health Organization, endo affects about 190 million females in their reproductive years across the globe. In the United States, that means more than 1 in 10 women are diagnosed with endo, myself included.
Endometriosis is when tissue, similar to the lining of the uterus, grows elsewhere. It acts like the tissue we shed during periods, thickening and breaking down, then bleeding with each menstrual cycle. But when it grows where it doesn’t belong, it is unable to leave the body. This will cause thick bands of fibrous tissue called adhesions to form, and eventually may even cause the pelvic organs to stick together.
The primary side effect of endometriosis is pelvic pain, which is usually much worse during menstruation, but may occur any time. Other symptoms include pain with sex, pain with bowel and bladder function, bloating, constipation or diarrhea and even infertility. Heavy bleeding both during and between periods is also noted as a common side effect.
It is estimated that most women receive an endometriosis diagnosis six to seven years following the start of symptoms, after seeing as many as four doctors. Knowing the difference between what is normal and what may be cause for concern is important, especially if parents begin noticing that their daughters may be experiencing symptoms of endo.
Jessica Putman, MD, is a fellowship trained Minimally Invasive Gynecologic Surgeon, specializing in the treatment of endometriosis. Putman described a normal period as “lasting 3-7 days with a moderate flow, which is going through one pad or tampon about every four hours.” Regarding pain, she said, “It is normal to have some cramping a couple days before the start of your period and in the first few days, but it should be manageable with over-the-counter pain medication. A period should not interrupt normal daily activities, such as going to school or work, playing sports or participating in hobbies.”
With endometriosis, the duration and intensity of pain will exceed what is considered “normal.” For parents who may notice these symptoms in their kids, Putman encouraged them to start by having a conversation with their pediatrician, but a referral to a gynecologist may be necessary.
“The most important thing is to be specific. Explain you are there to talk about pelvic pain, and have examples of what it feels like, such as sharp or stabbing. Keeping a diary of symptoms is a great way to provide information to help with treatment,” Putman said.
While endometriosis can only be diagnosed through surgery, treatment may include hormonal therapy, physical therapy or surgical intervention. Putman also encouraged being an advocate for yourself. “If a doctor is telling you the pain is normal or the treatment is pregnancy, find another doctor. Getting a second or third opinion is necessary if you don’t feel as if you are being heard.”
For more information on endometriosis, visit endometriosis.org.
SIDEBAR
OKC meteorologist Emily Sutton has been vocal about her journey with endometriosis, which played a role in her fertility. She had this to say about her own experience: “Endometriosis is an invisible disease which is painful and frustrating. I learned that you have to educate yourself and advocate for yourself. Some of the best information I found was from sources like podcasts, Facebook groups and other women in the Endo Warrior community. Find a doctor who listens to you, and believes you.”
Interested in similar health topics for women? Check out this popular article on Keeping Balance With Your Hormones.
