Painful, heavy periods. Sharp, stabbing pain. Infertility.
Although endometriosis affects about one out of every 10 women, there is still no known cause or cure for this intense disease. Nebraskan physicians share their knowledge of endometriosis and the difficulties it presents.
Mary Kinyoun, obstetrician gynecologist at the Olson Center for Women’s Health at Nebraska Medicine, said the endometrium is the lining of the uterus and that is what sheds every month during menstruation. Endometriosis is a condition in which these same kinds of cells that line the endometrium are located other places outside of the uterus, such as on the ovaries or on the appendix.
Abby Delaney, reproductive endocrinologist at Methodist Women’s Hospital, said endometriosis affects approximately 10% of reproductive-aged women.
“It is a disorder that is relatively misunderstood,” Delaney said.
Endometriosis is believed to be caused by retrograde menstruation, which means when a woman’s menstrual flow moves in the wrong direction, but Delaney said it is ultimately the presence of endometrial glands and stroma that appears outside of the uterine cavity.
“Ultimately, because those cells are not where they are supposed to be, women with endometriosis generally suffer a lot of inflammatory-related symptoms and severe pain,” Delaney said.
Endometriosis symptoms can vary widely and do not correlate with any stage or progression of the endometriosis, Delaney said. For example, some women can have a very minimal visual appearance of endometriosis in their abdominal cavity, but they have severe pain and infertility. On the other hand, some women have multiple affected areas within the pelvis, but do not experience any pain and have no conception issues, according to Delaney.
Generally, the most common symptoms are pain during periods, pain during intercourse, pain during ovulation and infertility, Delaney said. Kinyoun said symptoms do not develop at any certain time, but rather develop over time.
To determine if someone has endometriosis, professionals perform a laparoscopy, in which a camera is placed in the belly and the doctor looks for endometriosis within the abdomen and biopsies it, Kinyoun said. A pathologist examines the biopsy under a microscope to see if there are endometrial cells or evidence that the lining of the uterus is present outside of the lining of the uterus, Kinyoun said.
On average, it can take several years before women are ultimately diagnosed, Delaney said.
If left untreated, one of the most common long-term effects of endometriosis is the toll chronic pain takes on a person’s physical and mental health, Kinyoun said. Other effects if left untreated can include cysts on the ovaries, difficulty conceiving and infertility, Kinyoun said.
Kinyoun said not all painful periods are endometriosis, but she recommends to always get a consultation with a gynecologist if someone suspects that they might have endometriosis.
When someone is in chronic pain for a long period of time, their pain receptors get increased and some stimuli that would not be that painful for people without endometriosis can be a lot more painful for people with it, according to Kinyoun. Also, the pelvic floor, which are the muscles of the vagina that gives a lot of support for women’s bodies, can get really tight and have spasms due to chronic pain from endometriosis, Kinyoun said.
“I think also people kind of can discredit the pain that these women have from endometriosis,” Kinyoun said. “It’s an incredibly painful disease process.”
Kinyoun said the pain from endometriosis often has many factors and it can also include neuropathic pain and muscular pain.
“I think anytime you have chronic pain and endometriosis pain can be super debilitating,” Kinyoun said.
The pain can cause women to miss work or be unable to complete daily activities, Kinyoun said. It can affect intimacy in their relationships since intercourse can be a painful experience, Kinyoun said. Since endometriosis can cause infertility or problems with conception, it can be emotionally painful as well, Kinyoun said.
“Infertility is a huge issue, and something that many women struggle with and can be absolutely heartbreaking,” Kinyoun said.
Some treatments include birth control pills, hormone therapy, pain medication that affects the nervous system, pelvic floor physical therapy, IUDs, injectable medication and surgical therapy, according to Kinyoun and Delaney.
“I think the importance is promoting awareness and understanding and empathizing with women who suffer from this really common yet really debilitating disease,” Delaney said.