There’s another incredibly relevant and upsetting reason that endometriosis can take years to diagnose. “It is my experience that pelvic pain is normalized by some medical providers,” Simpson says. “Women are given the suggestion that severe pain…is normal.” This normalization means that, in some cases, doctors don’t accurately diagnose or treat people with endometriosis until they’ve been dealing with the condition, and often its characteristic pain, for far too long.
Endometriosis can cause different types of pain.
Although people with this condition don’t always have symptoms, there’s a reason agonizing pain has become one of the hallmark signs of endometriosis. We asked doctors to break down the specifics of why different types of endometriosis pain can happen and how they might present. “The problem with pain is it’s so subjective,” Minkin says. “It’s not like there’s a pain-o-meter that you can [use].” Equally subjective are the words we use to describe the pain. With that said, when it comes to a condition as medically mysterious as endometriosis, every bit of potential insight helps. Here are the most common types of pain associated with endometriosis.
Painful cramps during your period (but also between periods): Typically, people who have menstrual cramps as a PMS symptom will experience pain or discomfort right before their period, then it will dissipate around four days after their period starts, according to the Mayo Clinic. While endometriosis pain commonly happens during menstruation as hormonal changes trigger those lesions to bleed, it’s also not unusual for people with endometriosis to experience painful cramps even when they don’t have their periods.
As for how that pain feels? A 2019 study published in the *Journal of Endometriosis and Pelvic Disorders( surveyed 737 women, 529 with endometriosis and the rest without, to try to answer that very question. The researchers discovered most respondents with endometriosis used words like shooting, stabbing, sickening, exhausting, and intense to describe their pain.
“Mild discomfort with periods may be normal, but pain that stops [you] from working, going to school, or other daily activities is not normal and should be evaluated by a gynecologist,” Simpson says.
Intense belly pain: If endometriosis has caused cysts on one or both of your ovaries, you might deal with sharp, intense pain in your abdomen that could leave you incapacitated, the Merck Manual says. However, this pain can also be dull, aching, or stabbing.
Abdominal pain might seem like a vague symptom. You can, after all, have massive abdominal cramps for many other reasons. While pain is subjective (and isn’t the only indicator that you could be dealing with endometriosis), intense pelvic pain deserves attention, no matter what the potential cause may be.
Painful sex: “Pain during sex is a classic symptom,” Minkin explains, adding that sexual activity can irritate and inflame endometrial lesions. In that 2019 Journal of Endometriosis and Pelvic Disorders study, 85% of the women with endometriosis said they had experienced at least some pain during sex, compared with 59% of the women without endometriosis. (Which is still way too high a number, for the record.) From 11% to 30% of the women with endometriosis said they “always” had pain during sex (the range was dependent on questions about different variables during sex), while only 1% to 3% of women without the condition said the same. It’s no surprise that, overall, 50% of the respondents with endometriosis said the condition had a serious impact on their sex lives.
Pain when you use the bathroom: How this pain manifests depends, in large part, on where the endometriosis lesions are in your body. If the wayward cells are on your large intestine, for instance, you may experience pain when you have a bowel movement as well as issues like constipation, the Merck Manual explains. If the cells are hanging around near your bladder, the Merck Manual says you might experience pain when you pee.