Yes, endometriosis can be painful. However, not all people with endometriosis experience pain all the time. Here’s what we know and when to contact a medical professional.
In fact, some people with endometriosis never experience pain.
“Some people have endometriosis but don’t have any symptoms whatsoever,” says Monte Swarup, MD, OB-GYN, founder of the leading health information site Vaginal Health Hub.
Meanwhile, other people have symptoms, but pain isn’t one of them, he says. These folks could have any other collection of endometriosis symptoms, he notes. For instance:
- difficulty sleeping
- gastrointestinal distress
- sexual dysfunction
- fertility challenges
For people who experience pain as one of their symptoms, the quality and location of the pain can vary person to person and day to day.
“The pain can be throbbing for some people, but sharp and stabbing for others,” says Swarup. Depending on the individual, the pain can also be described as:
In short: There is no one-size-fits-all answer to questions about endometriosis-related pain.
This is a good, but tricky, question.
There is currently no cure for endometriosis. An individual can, however, manage their symptoms.
“The options for treatment depend on your individual symptoms, the extent of the disease, and whether you plan on having children,” says Swarup. “Mostly, treatment involves medications.”
These medications could include:
“The medications do not get rid of endometriosis tissue that has already formed,” he says. Pain medication can help manage pain associated with the conditions. Meanwhile, “the hormonal medications may help slow or keep new adhesions from forming,” explains Swarup.
Many people will need additional surgeries later in life to remove any endometrial tissue that grows in its place.
To understand what modulates endometriosis pain, you must understand the condition more generally.
Quick refresher: Endometriosis is an inflammatory condition marked by the growth of uterine-like cells in and around the pelvic organs. These cells function just like the cells along the uterine lining.
Like the cells lining the uterus, “the endometriosis tissue cells are affected by changes in estrogen levels,” says Swarup. In response to changing estrogen levels, these cells can thicken, break down, and shed.
However, unlike the uterine lining, which the body can expel from the vaginal canal, these uterine-like cells have nowhere to go.
The result? They get trapped in the body, usually creating painful adhesions that, over time, can force the affected organs to stick together.
“The tissue bleeding, scarring, and inflammation are what causes most of the pain related to endometriosis to occur,” he says.
Given that the endometrial-like tissues usually grow in and around the pelvic organs, many people make the incorrect assumption that all endometriosis-related pain is in the pelvis.
“The pain varies in location,” says Heather Jeffcoat, a doctor of physical therapy who specializes in sexual dysfunction and incontinence and author of “Sex Without Pain: A Self-Treatment Guide to the Sex Life You Deserve.”
“One patient may experience constant low back pain, terrible abdominal pain leading up to their period, and additional interspersed pains, like bladder pain, constipation-related pain, and even temporomandibular joint dysfunction,” explains Jeffcoat.
Another person may experience little to no pain except for when they’re trying to receive vaginal or anal penetration, she notes.
“Every person’s experience with pain is unique and may be isolated to one distinct region or can affect their entire body,” says Jeffcoat.
When is endometriosis most painful?
Just as the cells lining the uterus thicken and shed during menstruation, the endometrial cells typically do, too.
As such, “It’s common for the pain to be the most intense during and just before the menstrual period,” says Swarup.
Depending on where an individual’s adhesions are, “the pain can also occur during sexual intercourse, and there can be pain during bowel movements and during urination,” he says.
Most people with endometriosis require an interdisciplinary approach to the disease to find relief, explains Jeffcoat.
“The best approach for getting chronic pain patients out of pain — or to a point where it’s significantly less impactful on their lives — is having multiple providers communicate with one another to coordinate a patient’s treatment plan,” she says.
Members of this team will typically include a:
- gynecologic surgeon specializing in endometriosis excision surgery
- pelvic floor physical therapist with strong orthopedic skills
- pain management specialist, such as a physician or acupuncturist
- massage therapist
- somatic stress therapist
“Not every person with endometriosis or chronic pain will need all options, but many are seeing a minimum of three providers at a time,” she says.
Generally speaking, if you’re experiencing any new or unusual symptoms, consult a healthcare professional.
As far as this article is concerned, contact a clinician if you’re reading this article because you:
- experience pain and think it could be endometriosis-related
- think you have endometriosis, but do not ever (or always) experience pain
- recognize your lived experiences in some of the symptoms
“Your OB/GYN will talk to you about your symptoms and do a pelvic exam as part of your physical exam,” says Swarup.
Your clinician will look for obvious signs of growth and adhesions during your pelvic exam. They may also order an:
An ultrasound will determine only if you have endometrioma, which is endometriosis of the ovary, says Jeffcoat.
“If your ultrasound is negative, it doesn’t mean you do not have endometriosis — it means you do not likely have endometriosis of your ovary,” she says.
An MRI can pick up deep infiltrating endometriosis, explains Jeffcoat.
“But if you have a negative MRI, it doesn’t mean you are endometriosis-free,” she says. “It means that it’s unlikely that you have deep infiltrating endometriosis.”
The gold standard for endometriosis diagnosis is with a biopsy through laparoscopy surgery. This is a surgical procedure where doctors can see some endometriosis scarring and lesions visually and potentially remove them for a biopsy.
Endometriosis can be painful. For individuals who experience pain as one of their symptoms, that pain can vary in quality, location, and timing.
While there is currently no cure for endometriosis, there are things that you can do to help manage your condition.
So, if you have endometriosis-related pain or other symptoms, work with a healthcare professional (or three) to devise a pain management protocol that works best for you.
Gabrielle Kassel (she/her) is a queer sex educator and wellness journalist who is committed to helping people feel the best they can in their bodies. In addition to Healthline, her work has appeared in publications such as Shape, Cosmopolitan, Well+Good, Health, Self, Women’s Health, Greatist, and more! In her free time, Gabrielle can be found coaching CrossFit, reviewing pleasure products, hiking with her border collie, or recording episodes of the podcast she co-hosts called Bad In Bed. Follow her on Instagram @Gabriellekassel.