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Period pain is a common, totally normal part of having a uterus. But if that pain is severe, prevents you from doing day-to-day tasks, or keeps you in bed all day, that’s not normal.
Painful periods, or dysmenorrhea, can be caused by various conditions. One condition in particular, endometriosis, is often misunderstood.
What to know about endometriosis
Endometriosis is a chronic disease that affects about 10% of women and girls (yes, girls too) globally. It’s a condition in which cells similar to those found in the uterine lining, aka the endometrium, grow outside the uterus, causing inflammation and pain.
The pain associated with the disease can be debilitating for some. It can affect your periods, sex life, pelvic floor function, mental health and more … not to mention your finances.
The TL;DR? Endo, and the societal understanding of the disease, sucks.
Getting a diagnosis is hard, too
Too often, it can be hard for people to get diagnosed with endometriosis. The only definitive way to diagnose someone with endometriosis is through laparoscopic surgery, where a small camera is put into the belly. But taking time off for a surgery — and the costs associated with it — can be a barrier for many people.
“Because of that barrier, I think diagnoses have been delayed for a lot of people,” says Sarah Prager, MD, a professor of obstetrics and gynecology at UW Medicine.
Endo can also sometimes be detected on imaging — the technology is improving, and it can now often be an alternative to surgery.
“We now have better ultrasound modalities for diagnosing endometriosis, and that is an easy test for patients to get,” says Prager. “And so that can actually significantly move up the time period in which we check for endometriosis.”
The good news: New recommendations have made it even easier for people to get an endometriosis diagnosis without surgery. Doctors can now make a presumptive diagnosis based on a combination of your health history, symptoms and imaging, and start treatment much faster.
How to treat endometriosis
The first line of treatment typically includes hormonal contraception.
“Using hormones to suppress the ovaries and endometrium is the best way to prevent endometriosis from being symptomatic,” says Prager. “There are some types of hormonal contraception that are strong enough that they can cause some endometriosis to regress. Sometimes people have almost complete resolution of their symptoms if they’re on a contraceptive method that works well for them.”
While hormones can suppress your symptoms and help you feel better, they’re not considered a cure. However, for some people, hormones are the preferred alternative to surgery.
“Even safe, low-risk surgeries have risk, so if we can avoid surgery and still manage someone’s disease, that’s better,” says Prager. “The downside of not confirming the diagnosis with laparoscopic surgery is that there’s always a risk that it could be something else that we’re misdiagnosing. For some patients, it’s a big relief to know 100% what it is that we’re managing. For other patients, they would prefer to skip surgery if they don’t have to have one.”
8 facts you should know about endometriosis
Endometriosis is often called the “missed disease” because many people receive multiple diagnoses before receiving an endometriosis diagnosis. And even with a diagnosis, it can be hard to know what’s true or a myth due to the lack of awareness of the condition compared with other gynecologic issues.
Here are eight endometriosis truths to remember.
Endometriosis is not endometrial tissue
Sometimes you’ll hear the disease described as endometrial tissue growing outside the uterus. But really, the disease consists of tissue similar to, but not the same as, the endometrial tissue found in the uterine lining.
This endometrial-like tissue grows outside of the uterus, most commonly on the pelvic peritoneum (the membrane that lines the inside of your pelvis), but can also present as endometriomas, or blood-filled cysts typically found in the ovaries.
Endometriosis can grow anywhere inside your body
Unfortunately … this is true.
“Most commonly, endometriosis grows around the uterus and ovaries,” says Anita Tiwari, MD, an OB-GYN at UW Medical Center – Northwest. “But sometimes, it can be found on the colon, bladder, and there are rare cases of endometriosis found in the lung.”
Yes, the lung. Cases of endometriosis have also been found on the liver, appendix, diaphragm and brain.
If you’ve received a recent endo diagnosis, there’s no need to panic: Cases outside the abdomen are extremely rare. Still, it’s a good reminder of how aggressive this disease can be and why it should be taken seriously, no matter where it lives in the body.
You don’t need a uterus to have endometriosis
While incredibly rare, endometriosis has been found in those assigned male at birth. However, it’s still more likely to affect people with a uterus.
Even people assigned female at birth who have had hysterectomies can have endometriosis or recurrences of the disease.
It can be hard to diagnose without surgery
Again, ultrasounds and MRI scans can sometimes show findings that are suggestive of endometriosis, says Tiwari, but laparoscopic surgery is still required for a definitive diagnosis. If the surgeons see any signs of endometriosis with the laparoscope, they will take a biopsy, a small sample of the tissue, to send to the lab to confirm the diagnosis.
A quick tip: If you choose to have surgery to diagnose or remove your endometriosis, ask your doctor for pictures of the inside of your body. It might feel strange to see images of your uterus, ovaries, abdominal cavity and more, but having the photos can help in the future, especially if you change doctors or want a second opinion.
Endometriosis can recur even with surgical removal, so having a good record of your surgical history can come in handy if you need another surgery in the future.
Your “stage” of endometriosis doesn’t always correlate with your pain level
People diagnosed with endometriosis via a laparoscopy might receive a stage from one to four that indicates the extent and severity of endometriosis found in the body during surgery.
Stage one consists of a few small implants of tissue, and can progress to stage four, severe, in which the disease is typically widespread and has caused scarring.
But those stages don’t always correlate with the amount of pain someone might be experiencing because of the condition.
“Some people can have significant endometriosis at the time of surgery and have no pain,” says Tiwari. “Others can have very small implants and have significant pain.”
So, don’t feel like you’re making up your pain if you receive a stage one diagnosis and aren’t able to perform day-to-day tasks, and don’t be worried if you’re diagnosed as stage four and haven’t felt much of anything.
Endometriosis has been linked to other disorders
Endometriosis pain is bad enough, but sometimes other conditions coexist alongside it.
Some people with endometriosis may have polyendocrine metabolic ovarian syndrome (formerly known as polycystic ovarian syndrome or PCOS), pelvic congestion syndrome or adenomyosis as well, adding to the tally of incredibly painful conditions that can be difficult to treat.
An endometriosis diagnosis doesn’t mean you’re infertile
Studies have shown that having endometriosis can make it harder to conceive, and for about 30% to 50% of people, can cause infertility. If you’re hoping to grow your family, this can be a big, very real concern.
It’s also important to note that an endometriosis diagnosis does not automatically mean you’re infertile. Many people with the diagnosis can still conceive and carry healthy babies to term. However, if you’re having trouble conceiving, talk to your doctor about different options to help with the process. There are options to potentially increase your chances of conceiving.
And if you’re not looking to conceive, but someone tells you that getting pregnant will reduce or cure your endometriosis — run.
There is no current cure for endometriosis
If a doctor tells you they can cure your endometriosis, they aren’t giving you accurate information.
“Endometriosis is frustrating and can take some time to treat,” says Tiwari. “There is no cure for endometriosis.”
But you can find relief: Many people find relief through surgical excision of the disease, hormone suppression, naturopathic remedies, dietary changes or a combination of these methods.
There isn’t a one-size-fits-all. One treatment method might work for someone their whole life, and others might need to try a few different things to manage the disease effectively.
Tried-and-true tips to advocate for yourself
Tiwari says it’s helpful to come prepared for your appointment when discussing endometriosis.
“Have a log of when your symptoms occur and what those symptoms are. Do your symptoms correlate with your menstrual cycle? What have you tried, and what are you willing to try? Make sure to bring any outside medical records or ultrasounds to your appointment — they are helpful to start the conversation toward diagnosis,” Tiwari says.
In addition, don’t be afraid to ask for what you want regarding your care. For some, adding a hormone regimen might help keep their symptoms at bay; for others, those hormones might cause side effects that create more discomfort than relief. Some people find relief with excision surgery through a skilled specialist; others prefer managing their symptoms differently.
Your journey — and your endo — is unique. When advocating for yourself, stick to your truths and forget about the myths of the disease.
This article was originally published on Nov. 15, 2023. It has been reviewed and updated with new info.
