By Allison Danish, MPH
Endometriosis is a condition in which endometrial-like tissue grows outside of the uterus. (Reminder: the endometrium is the wallpaper of the uterus). It affects an estimated 1 in 10 people with uteruses worldwide (although, very rarely, it shows up in cis men too).
Common signs + symptoms include:
- Pelvic pain
- Painful sex (dyspareunia)
- Painful periods (dysmenorrhea)
- Pain while pooping (dyschezia) and peeing (dysuria)
- Heavy periods (menorrhagia)
- Fertility challenges
Sounds like a blast, right? Folks with endometriosis can also experience: bloating, fatigue, other poop problems (like constipation and diarrhea), nausea, low back pain, and upper body pain.
What does endometriosis feel like?
The most common symptom of endometriosis is pain—be it pain during your period, sex, pooping, or peeing. A 2021 study looked into the kinds of pain that people with endometriosis feel, and it really runs the gamut.
- Pelvic pain (period or non-menstrual):
It might feel like: aching, cramping, stabbing, and it can come and go in waves. It may be felt on one side of the abdomen or both. If there is pelvic pain in general, periods may signify an increase in this pain.
- Painful penetrative sex:
It might feel like: drawing and dragging or sharp stabbing. It may be felt during or after sex, during or after orgasm. This may only be during menstruation, or all the time. Orgasm may also be painful.
- Pooping pain:
This might feel: sharp, may start before using the bathroom. May be associated with bloating, constipation, or diarrhea. This pain can be more severe during menstruation, and pain may be exacerbated by pain medication that can cause constipation.
- Peeing pain:
This might feel like: a UTI, burning, may be worse in the morning. Concentrated urine may be a pain trigger.
- Low back/lower limb pain:
Some people with endometriosis can experience lower back pain that may worsen during menstruation. Pelvic pain may also radiate down to the legs, which can make mobility difficult.
- Upper body pain:
Some people have reported chest and upper back pain, as well as headaches or migraines.
Not all endo looks the same, though—in terms of symptoms as well as what it looks like in the body. Some folks might experience a lot of symptoms and require quite a bit of medical treatment—and some folks won’t experience as many symptoms, and will need very little to manage their endo. A recent study, using self-reported data from thousands of people with endo, has grouped endometriosis type by symptoms.
- Group A:
Most likely to have severe pain—including pain in the deep vagina, vaginal entrance, inner-thigh, cervix, rectum, and intestines. People in this group are also more likely to report GI (like nausea and IBS-like symptoms) and bladder symptoms. Their period flow may be heavy or light. They may also experience hot flashes, sweatiness, and numbness. This phenotype more substantially affects the ability to carry out day-to-day activities like walking and getting out of bed. Naturally, these folks are more likely to experience lower quality of life. They are more likely to report use of narcotics and neuropathic drugs to manage symptoms. They are also more likely to report pain during sex and actively avoiding sex.
- Group B:
This type largely experiences moderate pain—most often reported in the pelvis, uterus, and vagina along with moderate GI symptoms. People in this group generally report having a lighter menstrual flow along with spotting, receiving hormonal treatment for their endo, and not having sex (but not actively avoiding it). Quality of life is generally pretty good for this group.
- Group C:
This type also experiences moderate pain mostly in the pelvis, uterus, and vagina as well as moderate GI symptoms. They are not likely to experience heavy period flow and may experience some upper abdominal and chest pain/pressure. This group also reports minimal to no medical treatment and good quality of life.
- Group D:
This type experiences moderate pain across a broad range of locations and moderate GI symptoms. These folks may also also experience upper abdominal and chest pain/pressure. This group frequently reports not having sex, and may experience some itchiness and/or tinnitus. Their period flows may be light-medium. Hormonal treatments, narcotics, and antidepressants were commonly reported as treatments in this group.
Fatigue, headaches, dizziness, brain fog and endo belly are seen to some extent across all groups.
It’s important to note that these data did not take into account age, race, when symptoms started and how long they’d been diagnosed for, and how treatment strategies might be affecting their symptoms (for instance, Group B often reports receiving hormonal treatment, which may account for the lighter menstrual flow and spotting). Thinking about endo by symptomatic group is a super new concept (this study was just published in 2020), but it’s a really exciting development!
Are there different kinds of endometriosis?
Endometriosis can look different from person to person and pelvis to pelvis! It generally comes in three flavors (that can overlap):
- Superficial peritoneal endometriosis (endometriosis that hangs out on the surface of the pelvic cavity and organs)
- Ovarian endometrioma (“chocolate cysts,” a fluid-filled pocket on the ovary that’s brown in color)
- Deep infiltrating endometriosis (endometriosis that digs a bit deeper into the tissues) (2).
Staging is also used to get a better idea of what’s going on and how to treat it (but it’s not necessarily indicative of severity of symptoms).
- Stage I (minimal):
- Some superficial (more surface-level) endometriotic spots (where that endometriosis tissue has grown)
- Usually found on the pelvic walls or the pouch of Douglas (the space between the rectum and the uterus)
- Stage II (mild):
- More endometriotic spots, some of which may be deeper
- Stage III (moderate):
- All of the above
- An endometrioma (“chocolate cyst”) is present
- Minor adhesions (sticky bands of scar-like tissue that bungee cord pelvic structures (like organs) together)
- Stage IV (severe):
- All of the above
- Severe adhesions (usually involving the bowel or bladder) and/or
- Endometriomas (“chocolate cysts”) on both ovaries
What causes endometriosis?
That is a much harder question to answer. There are a lot of theories, the most commonly accepted being retrograde menstruation. Yup, that’s exactly what you think it is: period-ing backwards. Sounds promising (and it’s the most widely-accepted theory to date), but there’s a wee problem: almost everyone who has a period menstruates backwards—but certainly not all of those people are developing endometriosis. So what else is going on?
Here are some other theories that scientists are looking into:
A newer theory, some scientists think endometriosis may come from retrograde uterine bleeding in babies (kinda like reverse-perioding). About 5% of newborn babies experience this uterine bleeding.
This theory proposes that endometrial stem cells (cells that can differentiate or mature into other cells) that get shed during menstruation surf through the bloodstream and/or the lymphatic system. Scientists like this one because it works well with the existing retrograde menstruation theory, and could account for deep infiltrating endometriosis (endo that’s not just surface level) and endometriosis that crops up outside of the pelvic cavity (like around the lungs and diaphragm).
A number of stem cells that come from the bone marrow are thought to be related to the regrowing of the uterine lining after menstruation! Wow!
Scientists think maybe these stem cells get a little lost and start homesteading outside of the uterus. This theory is interesting because it might help explain endometriosis that shows up outside of the pelvic cavity and in people who weren’t born with uteruses.
After those cells (whether endometrial cells or stem cells) reach their final destination, a bunch of factors (like hormonal dysregulation and genetics) allow them to stick and start growing. Endometriosis is really complex, so researchers are still trying to figure this out too.
How do you explain endometriosis pain?
It can be tough to voice your pain—especially if you’re seeking out a diagnosis. As of now, it takes an average of 8 doctors and 10 years to get an endo diagnosis. That’s because a lot of OB/GYNs and Family Medicine doctors aren’t necessarily trained to diagnose endo—or even suspect it.
If you want help explaining your pain to a healthcare provider, take the Pelvic Pain Assessment. It’ll help you think about where you feel your pain, what it feels like, and when it happens. At the end, you’ll receive a printable PDF that you can bring to your next visit.
If you’re looking for a provider who can help diagnose and/or treat endometriosis, check out r/Endo’s user-compiled map of recommended doctors here.
How is endometriosis diagnosed?
There are several methods that healthcare providers use to help determine if
- Patient interview
Just by talking to you, your doctor can get an idea of whether you have endo or not. These questions may include family history of endometriosis, menstrual symptoms, and comorbid (co-occurring) conditions like IBS, autoimmune disorders, or depression and anxiety. This would be a great time to bring up your Pelvic Pain Assessment!
- Physical exam
A pelvic exam allows docs to feel for things like cysts, thickened scar-like tissue, and pelvic pain.
Transvaginal ultrasound (when an ultrasound wand is placed inside the vagina) and MRI are two great ways that doctors can visualize ovarian endometriosis and deep infiltrating endometriosis (and adenomyosis—which is frequently experienced alongside endometriosis). Doctors may also use a transrectal ultrasound (when the ultrasound wand is placed in the rectum) or a CT scan to see endometriosis on the bowel and bladder.
The “gold standard” for endometriosis diagnosis is laparoscopic surgery—going in a teeny tiny hole in your belly with a looooong camera: 1) get an idea of what it looks like in there and 2) to grab some tissue to run tests on.
How do you treat endometriosis?
Some folks with endo won’t need medication (other than over the counter pain meds), some will find hormonal birth control really helpful, and some folks will need surgery to help alleviate symptoms—and some people will pursue a few of the treatment routes below. It really varies from person to person!
- Pain medication
NSAIDs like Advil and Motrin are often recommended to help with inflammation and pain. Narcotics (opioids) may also be prescribed.
- Hormonal treatment
Various hormone therapies (including birth control pills, patches, etc.) may be used to flatten hormonal fluctuations—sometimes preventing menstruation and ovulation—which can help control inflammation and, in some cases, shrink endometriotic lesions.
- Conservative surgery
This is the surgical removal of endometriotic lesions without removing the uterus or ovaries (sometimes the endo is gone for good, but there’s a high recurrence rate). This is generally used to treat folks who have pelvic pain and/or infertility and is usually performed laparoscopically (through a teeny tiny hole in the abdomen).
This is the removal of the uterus, and sometimes ovaries (oophorectomy). This used to be the gold standard of treatment for endometriosis, but experts are moving away from this. Removal of the ovaries can lead to premature menopause, which is associated with certain health risks.
- Assisted reproductive technologies
Inflammation can make getting pregnant difficult; reproductive technologies like IVF (in vitro fertilization) can help you reach your goals.
- Pelvic floor physical therapy
Physical therapy can be a great way to alleviate endo pain. Pelvic floor physical therapists can help you elongate spasmodic muscles, create some more mobility between organs that might be a little sticky with endo, and help downtrain your nervous system. If there isn’t a pelvic floor PT is inaccessible to you or you want a little extra PT support, try Pelvic Gym’s Endometriosis program!
There’s little scientific evidence that certain diets or supplements are useful for treating endometriosis symptoms, but anecdotal evidence is somewhat promising. Essentially: if it feels good to you, do it. If it doesn’t, don’t!
Exercise may have the ability to reduce inflammation (a hallmark of endometriosis), but the jury’s still out on whether this is a promising way to reduce pain or not.
Again, not a whoooole lot is known about using weed and CBD to treat endo pain, but so far it seems promising! A self-report study found that most people with endo who’ve tried marijuana find it’s very effective for managing their pelvic pain. And most who’ve tried CBD have found it’s moderately effective for pain.
As with some of the treatment strategies above, we don’t have a lot of data on the use of acupuncture for endometriosis pain. This study from 2017 looks at the handful of papers that have been published on acupuncture for endo, and found it may help reduce pain, but more studies are needed to further investigate.
- Bedroom additions
If pain during sex is one of the symptoms you’re struggling with, bedroom tools like lube, vibrators, and Ohnut can be really helpful!
Getting an endometriosis diagnosis—or even suspecting you have it—can feel really scary. But it’s important to know that there are treatment options that can really help with symptoms, health care practitioners who know their stuff and want to help, and researchers working every year to make advances in endo diagnosis and treatment.