What It Feels Like To Have Endometriosis

Endometriosis is a lifelong condition that can bring severe chronic pain. But how can you tell if your pain is from endometriosis or something else? And if it is endometriosis, what can you do about it?

Minimally invasive gynecologic surgeon Megan Billow, DO, shares what you need to know about identifying, understanding and managing endometriosis pain.

What does endometriosis pain feel like?

Endometriosis pain may feel like:

• Intense period pain and cramping
• Severe pelvic pain
• Pelvic floor spasms
• Pain or aching during or after vaginal penetration
• Digestive problems, like nausea, constipation or diarrhea
• Severe bloating, especially during your period

“The symptoms of endometriosis can be really complex, and some people have a lot of significant pain symptoms,” Dr. Billow says. “The main symptom we see is very painful periods.”

A 2015 study on adolescents with endometriosis found that 64% had painful menstrual cycles (dysmenorrhea). But you could also experience pain:

• Between periods
• When peeing
• While pooping
• During sex

Pain levels vary based on where endometriosis lesions grow, whether they’re affecting your nerves, how much inflammation you have and whether you’re receiving treatment.

Remember: You may not experience all of these symptoms. But painful periods alone are reason enough to speak with a healthcare provider.

“You should not be incapacitated by your pain,” Dr. Billow stresses. “You should not be calling off work or school because of painful periods. If you’re experiencing this type of pain, it’s important to talk about it with your provider.”

Where is it felt?

Pelvic pain is the most common location of endometriosis pain. But where you specifically have pain will depend on where the disease develops within your body.

“With endometriosis, tissue similar to the uterine lining grows outside your uterus,” Dr. Billow explains. “It can really implant anywhere — and that means you can feel endometriosis-related pain anywhere.”

Most often, endometriosis develops in the uterosacral ligament (behind your uterus) or the peritoneum, also called the pelvic sidewall. This is why painful periods are so common.

But depending on where you develop endometriosis lesions, you might feel pain in your:

• Back
• Side
• Chest
• Neck
• Diaphragm

The location of your pain gives your healthcare provider clues about where endometriosis has developed within your body.

“Pain is oftentimes the primary symptom that patients come to us with,” Dr. Billow adds, “but if there’s a delay in diagnosis, it can evolve to other systemic concerns related to mental health, pelvic floor, fertility and more.”

Can you have endometriosis with no pain?

Sometimes, you can have endometriosis but no pain symptoms. In that case, you may not learn that you have the condition unless you try to get pregnant.

“Some people don’t have any symptoms at all,” Dr. Billow confirms. “In those cases, we don’t realize that endometriosis exists until they start trying to conceive and have difficulty becoming pregnant.”

She explains that there are four levels of endometriosis, called stages. Stage one is the most superficial, meaning lesions develop on the surface of tissue in your abdominal area and don’t go deeper. Stage four infiltrates the deepest, affecting other tissues or organs. But your stage doesn’t necessarily dictate your pain level.

“Some people with superficial endometriosis have terrible pain,” she notes, “while some with deep endometriosis don’t really have pain.”

How does endometriosis pain compare to other conditions?

Some people say endometriosis pain compares to the pain of:

• Giving birth
• Having a ruptured appendix
• Passing a kidney stone

But these comparisons aren’t really fair or accurate.

“For some people, endometriosis pain is mild. For others, it’s unbearable,” Dr. Billow reiterates. “Everyone’s endometriosis pain is different, and so is everyone’s pain tolerance.”

The bottom line, she says, is that if your pain impacts your quality of life, it’s a sign that something is off — whether it’s due to endometriosis or something else.

What can be mistaken for endometriosis?

Other conditions share pain symptoms with endometriosis, so it can be mistaken for issues like:

• Adenomyosis
• Irritable bowel syndrome (IBS)
• Interstitial cystitis
• Ovarian cysts
• Pelvic floor dysfunction
• Pelvic inflammatory disease (PID)
• Polycystic ovary syndrome (PCOS)
• Uterine fibroids

So, how can your healthcare provider tell what you’re dealing with?

“As providers, we consider a combination of factors that can give us a pretty good idea whether somebody has endometriosis,” Dr. Billow explains. Those factors include:

• Your pain: Your healthcare provider will ask what type of pain you’re feeling, where it’s located, whether it’s worse during your period, and other questions to help differentiate between endometriosis and other possible causes.
• A physical exam: “If, during an exam, we feel areas that seem firm or that cause you pain, that makes us think endometriosis may be involved,” Dr. Billow says.
• Genetics: Your provider will ask you whether you know of any family history of endometriosis. This is because you’re 7 to 10 times more likely to develop the condition if you have a first-degree biological relative who has it.

Struggling with how to explain your pain? If you think you might have endometriosis, Dr. Billow recommends keeping track of your symptoms and being as detailed as possible when you describe what you’re experiencing.

“Log all of your symptoms, including their location, timing and whether they correlate with anything else,” she encourages. “Is your pain worse during your period or ovulation? What about during intercourse or while urinating or having bowel movements? All of those things are helpful for your doctor to understand.”

Final thoughts

Endometriosis is a chronic condition that can affect every facet of your life, so finding ways to manage your pain is vital. The first and most important way to cope with endometriosis pain is to ask your provider what type of treatment they recommend for you.

“Keep in touch with them every step of the way so they can continually reassess your needs,” Dr. Billow encourages.