Women have described the pain of endometriosis as “excruciating” and “torture.”
Allie Wise, a Shop TODAY associate editor, had such debilitating monthly pelvic cramps that she had a hard time walking a few steps to the bathroom.
“The doctors I’d visited over the years reassured me that what I was experiencing was completely normal for a woman of childbearing age. They saw no cause for concern,” Wise wrote in an essay for TODAY.com.
“The number of times I heard ‘just take pain medication’ was too many to count.”
It took almost 20 years for her to be diagnosed with endometriosis, a frustratingly long wait that many women experience, says Dr. Ja Hyun Shin, director of minimally invasive gynecologic surgery at Weill Cornell Medicine and NewYork-Presbyterian.
It happens because the symptoms are not clear cut, it's challenging to detect the disease and there's a need for physicians to have more awareness of endometriosis, she notes. The recent #BiteTheLemonChallenge aims to raise public awareness.
The condition affects more than 11% of women in the U.S. and can start when they’re in their teens, the Office on Women's Health notes.
“We're seeing patients who have waited for so many years, sometimes a decade or more, trying to get a diagnosis for their pain, and by the time they might find the right provider, they're in their late 40s,” Shin tells TODAY.com.
In endometriosis, tissue similar to what's found in the endometrial cavity of the uterus grows outside of it. These patches or lesions of tissue can affect the ovaries, fallopian tubes, vagina, bowel, bladder or rectum. They can even appear in the lungs, brain and skin. Doctors don't fully understand why it happens.
Shin says that as she treats women with endometriosis, she stays vigilant for any symptoms in herself.
“Sure, I'm always aware,” she notes. “I know not to ignore any symptoms.”
Knowing what she knows, here are the endometriosis warning signs she’d pay attention to in her own body:
Pain Around the Time of Your Period
The typical patient Shin sees has some degree of pelvic pain, especially around her menstrual cycle.
One of the reasons it takes so long to be diagnosed is the common and mistaken belief — even propagated by doctors — that periods should be painful, Shin says.
“They really shouldn't be. Now you can have some cramping, absolutely,” she notes.
“But it shouldn't be severe. It shouldn't be such that it's not relieved by a Motrin or a Tylenol. It shouldn't be that you're now needing to soak in hot baths and place heating pads that leave marks on your skin, which I see on my patients. It shouldn't be that you need to take off work because the pain is so bad.”
If it gets to that point, it's time to be evaluated more closely, Shin advises.
The pain is generally felt in the pelvic area, but since endometriosis lesions can be found elsewhere, women can hurt in those other areas of the body.
Endometriosis pain can start during ovulation, or a day or two before bleeding begins or during the actual period. For some women, it becomes chronic to the point where they just feel pain all the time, she adds.
Pain During Sex
Endometriosis is commonly found in a region of the pelvis that’s behind the uterus, around the rectum, and surrounding the ovaries and fallopian tubes.
“When you have these implants there that cause an inflammatory reaction and scarring in that area, any disruption of it, such as during vaginal intercourse, can aggravate that area. So you can have pain,” Shin says.
Endometriosis can also impact pelvic floor muscles, leading to pelvic floor dysfunction that makes intercourse painful, she adds.
Bowel and Bladder Problems
Besides period pain, women also usually also have a “constellation of other symptoms,” Shin notes, including pain with a bowel movement and urinary issues such as pain when the bladder is full, pain when urinating or the frequent urge to go to the bathroom.
“You could actually have endometriosis implants affecting or on those organs, so you could have direct pain from endometriosis on those organs themselves,” she says.
“It could also be that the nerves are connected in the pelvic area so pain from one organ can be transmitted to perceiving pain from another nearby structure as well.”
Gastrointestinal Problems
Many patients with endometriosis also suffer from irritable bowel syndrome, Shin says.
Symptoms include chronic constipation, diarrhea and abdominal bloating.
It's not fully understood how these conditions are interconnected, but having endometriosis was associated with an almost three-fold increased risk of developing IBS, studies have found.
Infertility
Some of Shin’s patients have never had painful periods or pelvic pain issues, but are referred to her because they're trying to conceive and can't get pregnant.
Up to 50% of women with infertility have endometriosis, according to the World Health Organization.
“Infertility could be the only symptoms someone might present with,” Shin says.
“Getting pregnant is a very complicated, multi-step process, and it really can impact any step in that process, from a chemical disturbance to a structural disturbance.”
Endometriosis can affect the quality of the ovary and have toxic impacts on sperm, she notes. Extensive endometriotic scarring around fallopian tubes can block them.
How to Get Help
Think about the symptom most bothersome to you and talk to the specialist for that condition, whether it’s an OB-GYN or gastroenterologist. Mention your suspicion for endometriosis, Shin advises.
“Advocate for yourself,” she urges women. “Pain that is persistent, that is disruptive and that is impacting your life in any negative way, that's not normal. You should have minimal cramping to no pain during your menstrual cycle. So if you're experiencing this, then speak about it with your physician”
There's no cure for endometriosis, but treatment includes hormonal birth control and surgery to remove the endometriosis patches — though they can recur, even with complete excision, Shin says.
“Removing as much of the endometriosis as possible can certainly improve your symptoms,” she notes.
TODAY.com’s Symptom Check series features doctors, specialists and health experts who reveal the warning signs they’d look for in their own body when it comes to cancer and other diseases.
