If your period pain feels unmanageable, you might wonder if you’re experiencing one of the most common signs of endometriosis. Even if you typically take intense pain spells in stride, you might be more worried about this than usual because going to the doctor can be extra fraught due to the new coronavirus pandemic. So how can you tell whether you’re dealing with signs of endometriosis or something else entirely? The short answer is that you can’t know for sure without talking to a health care provider, and even then, diagnosing endometriosis can be really complicated. Still, experts know enough about the signs of endometriosis to offer some clues. We chatted with three gynecologists to help you think about your symptoms and communicate them to a doctor when the time is right.
What even is endometriosis?
Endometriosis is a reproductive disorder that happens when cells from the uterine lining—or cells really similar to the ones in that lining—wind up on other organs where they don’t belong. Experts believe roughly 6% to 10% of women are living with the condition, according to the Merck Manual.
During a typical reproductive cycle, your endometrial (uterine) lining thickens to prepare to support a potential pregnancy, according to the Mayo Clinic. Your period happens if you don’t get pregnant and the walls of your uterus contract to shed that lining. (This process can change based on different things like the birth control you may be using.) If you have endometriosis, these endometrial or endometrial-like cells are “subject to hormonal changes” the same way your uterine lining is, Mary Jane Minkin, M.D., a clinical professor of obstetrics and gynecology and reproductive sciences at Yale Medical School, tells SELF. This means that endometrial lesions can bleed during your period, which can lead to many signs of endometriosis. (We’ll dig into what those signs are in just a bit.)
“The exact cause of endometriosis is not known,” Khara Simpson, M.D., assistant professor at the Johns Hopkins department of obstetrics and gynecology, who specializes in minimally invasive surgery for conditions including endometriosis, tells SELF. There are, however, several theories about why this happens, Simpson says. One is retrograde menstruation, which happens when blood flows back through the fallopian tubes and seeps into the pelvis. You can read about that and other theories here.
What are the signs of endometriosis?
Even though pain is a well-known feature of endometriosis, that alone isn’t enough to determine whether you have this condition, Simpson says. In fact, someone can have severe endometriosis lesions without excruciating pain, the Mayo Clinic explains, or it’s possible to have only a few small lesions that nonetheless cause debilitating discomfort.
Here are the main signs of endometriosis, per the Mayo Clinic:
- Pain during your period
- Pain during sex
- Pain when you use the bathroom
- Heavy period bleeding
- Breakthrough bleeding (spotting between your period)
- Nausea
- Vomiting
- Bloating
- Constipation
- Diarrhea
- Fatigue
- Fertility issues
Trying to live your life while juggling these signs of endometriosis can be overwhelming. What’s more, symptoms can get worse with time, and it typically takes years to get an accurate diagnosis, as SELF previously reported. “There are several reasons for this,” Simpson says. Endometriosis can only be definitively confirmed via minimally invasive surgery known as laparoscopy, “where we actually look inside under anesthesia using a small telescope to visualize endometriosis implants throughout the pelvis,” Alyssa Dweck, M.D., a gynecologist in New York City, tells SELF. Sometimes doctors will hold off on a laparoscopy and try to diagnose based on symptoms and other lab tests. Sometimes endometriosis is misdiagnosed as conditions like irritable bowel syndrome or pelvic inflammatory disease, the Mayo Clinic says.
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.
Radiating lower back and leg pain: Endometriosis by definition grows outside of the uterus, and in rare cases it can impact the sciatic nerve, which is the largest spinal nerve in the body. When this happens, you might experience a host of sensations including tingling, pressure, and radiating pain in the lower back that moves down the leg. A 2018 literature review and case study published in Gynecology and Minimally Invasive Surgery suggests that in cases where nerve pain is present, endometriosis cells are most likely prevalent in other areas of your pelvis as well.
What you can do if you suspect your pain is due to endometriosis
It can be a little scary to think you might have a reproductive health condition, especially if you’re making this discovery in the midst of the new coronavirus pandemic when getting to a doctor can be frightening on its own. But if you do think you have endometriosis, talking with a doctor will hopefully be helpful in getting you on the path to relief.
“If a patient suspects they have endometriosis…they should still be evaluated despite the pandemic,” Simpson says, adding that this conversation may first start via telehealth. “Based on the patient’s history, the provider may advise a short in-person visit for an examination,” she explains. Medical staffers are generally taking a lot of precautions to protect people seeking care for non-coronavirus reasons from contracting the infection. (You can read more about that here.)
At the earliest stage of talking through your symptoms, your provider might recommend you take an over-the-counter pain relief medication like ibuprofen (Motrin) or naproxen sodium (Aleve) if you don’t already, Minkin says. These medications help block the production of prostaglandins, which are hormone-like substances that trigger uterine contractions as well as pain, she explains. Over-the-counter medications could help alleviate at least some of your pain, but the key is to take them early; it’s best to begin taking pain medication a few days before your cramps typically start, Minkin says. (Make sure to follow the dosage instructions—if you’re taking the maximum amount and it’s barely touching your pain, that’s another signal that you may be dealing with something like endometriosis.)
As we mentioned earlier, the only way to confirm endometriosis is through a procedure called laparoscopy. Even though it’s technically minimally invasive, it’s still surgery, so your doctor might try to eliminate other potential culprits first. “Oftentimes it takes imaging bloodwork, checking for infections, urine infections, vaginal infections, [and] all kinds of things before we start thinking of endometriosis,” Dweck explains.
Your provider might also prescribe hormonal birth control to help you manage symptoms. “Birth control pills basically help limit the growth of the lining of the uterus,” Minkin explains. Specifically, the estrogen in combined hormonal birth control pills suppresses the hormonal fluctuations that can make endometrial lesions bleed, while the progestin thins the uterine lining, which can reduce prostaglandin production and bleeding. That’s why hormonal IUDs with levonorgestrel (a form of progestin) can offer a bit of relief from pain and heavy bleeding symptoms, the Mayo Clinic says. And according to the Mayo Clinic, your doctor could also prescribe hormone therapies that reduce the amount of estrogen in your body.
If you receive a diagnosis and your endometriosis is considered moderate or severe, the most effective way to get rid of it is excision surgery, the Merck Manual explains. But your doctor would most likely explore the aforementioned treatment options first. It’s also worth noting that removing endometrial tissue during surgery is often a temporary solution, as the lesions can come back, according to the Merck Manual.
Finally, if you’re among the 50% of people who have endometriosis and experience infertility (likely due to complications like fallopian tube scar tissue), your doctor can talk to you about specialized treatment if you’re hoping to get pregnant, the Mayo Clinic says. This can include things like using medications to help your ovaries produce more eggs or IVF, depending on the exact issue affecting your fertility.
It’s very hard to decipher on your own whether or not your period pain is actually a sign of endometriosis. It’s important to try to get help for abnormal period pain and other reproductive issues if you’re concerned. And although getting a second opinion can be difficult to impossible based on things like your insurance and your financial situation, if it’s at all feasible, doing so might help if you believe your own doctor isn’t taking your concerns seriously.
“For a long time, people have been given the attitude of, ‘Hey, you’ve got to suck it up and don’t complain so much about your period pain,’” Dweck says. “But I see young people who can’t go to school because their period pains are so bad—or people who are missing work and can’t go about their normal activities—so I think it behooves everybody to figure this out.”
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