An Updated Guide to Endometriosis Pain & How to Treat It
If you or someone you care about has endometriosis, you already know that endometriosis — which affects about 1 in 10 people with uteruses worldwide — is one of the most painful and frustrating health conditions to diagnose and treat effectively. The symptoms of endometriosis are so difficult to distinguish from other medical conditions that it's common for people to suffer for years before a provider finally connects the dots. And because the only way to be diagnosed with endometriosis requires surgery, anyone who thinks they have it is forced to take on significant medical risks and expenses to find out for sure.
Everyone's experience with endometriosis is different, but many people start to disassociate with their own body, endure medical gaslighting that takes a toll on their self-esteem, and miss out on major parts of their life as they struggle to manage the pain.
Dr. Beverly Miras, PT, DPT wrote about her experience with endometriosis-related pain for the Origin blog: “My periods quickly became painful. This wasn’t the mild cramping I had expected, the pain felt like someone was crushing my internal organs from the inside. Unfortunately, like most menstruating individuals, I thought I just had to cope, so I managed the pain with feelings of dread and a fairly reliable regime of Advil. With each subsequent period, coping became harder as I experienced progressively worsening symptoms that I wouldn’t learn were endometriosis for 15 years.”
There is far too much confusion around endometriosis pain and how it’s treated — and few people realize the critical role pelvic floor physical therapy can play in managing symptoms. We're here to help with this concise guide that draws on some of the latest research.
What is endometriosis?
Endometriosis is a condition characterized by the growth of tissue that is similar to the endometrium (the lining of the uterus) outside of the uterus. This rogue tissue growth leads to pain and inflammation throughout your body that can become chronic. Over time the formation of adhesions — thick bands of scar tissue that fuse organs together — expounds the pain and contributes to sexual, reproductive, and gastrointestinal dysfunction.
Endometriosis can manifest in various ways, and symptoms depend on the location and extent of lesions. In addition to pain, common symptoms of endometriosis include:
- Irregularities in menstrual flow, cycle length, cycle cadence, or spotting between periods
- Gastrointestinal issues such as diarrhea, constipation, bloating, or nausea
Why endometriosis occurs in certain people is not fully understood. Some factors that may contribute to the development of endometrial-like lesions include cellular metaplasia, stem cell changes, or possibly retrograde menstruation. The development of endometriosis may also be dependent on estrogen, but like so much about endometriosis, more research is needed.
What kinds of pain can endometriosis cause?
The pain caused by endometriosis depends on the person, but more common pain-related symptoms include:
- Pelvic pain associated with and outside of menstrual periods
- Pain before, during, and after vaginal penetration of any kind
- Pain and difficulty while defecating
- Pain and difficulty while urinating
- Radiating lower back pain
Why does endometriosis cause pain?
Unfortunately, experts don’t yet have definitive answers for why endometriosis causes such intense pain. However, research shows that the condition is linked with inflammation and neuropathy—an issue with the nerves that can lead to pain experienced throughout the body. Endometriosis has also been associated with chronic pain and an increased sensitivity to pain.
“Not all pain from endometriosis is related to the menstrual cycle. Pain can occur at any time. It may present as back pain, leg pain, shoulder pain,” explains Dr. Laurence Orbuch, a California-based OB-GYN who specializes in endometriosis and uses a multidisciplinary approach including minimally invasive surgery for his patients. “What these lesions do, they release different factors—inflammatory mediators and growth factors—that stimulate blood supply and enhance the number of nerve fibers that send pain signals to the brain.”
Dr. Orbuch continues: “When the pain keeps coming back, the central nervous system becomes more sensitized to pain. The pathways for pain are complex and not linear. There’s a lot of cross-talk between nerves. So regardless of where pain starts off in the body, it can register somewhere else.”
Dr. Ashley Rawlins, PT, DPT, a physical therapist and the clinical learning and development lead at Origin, adds that people with deep infiltrating endometriosis (DEI)—when endometriosis is more than 5 millimeters deep in the tissues surrounding the uterus, including the bowels and the bladder—are more likely to have pelvic floor dysfunction as well as dysfunction in the muscles of the hips and thighs.
Up to 90% of people with chronic pelvic pain due to any cause experience muscle pain and dysfunction. Pelvic floor muscle function, in turn, can exacerbate other uncomfortable symptoms like constipation, bladder pain, and sexual pain.
Rawlins explains that symptoms may also be worsened by:
- Postural changes that limit mobility and shorten the muscles in the abdomen, hips, and pelvic floor.
- Fear-avoidance behaviors that reinforce the cycle of pain.
- Changes in the central nervous system that intensify pain.
- Less adaptive coping strategies that reinforce pain, like peeing “just in case” or frequently to help with pain during urination and limiting water intake.
Why is endometriosis so hard to diagnose?
People with endometriosis often have debilitating pain. Endometriosis and the pain it causes are treatable—but it takes an average of 7.5 years after the first symptom to get a diagnosis. This means people are often dealing with this pain for a very long time before getting the help they need.
One factor in the severe delays in getting an endometriosis diagnosis is the prevailing issue with people not being believed for their period and other pelvic pain. People are often told that pain is “normal” and just part of the experience of being a person who gets menstrual periods. In fact, as many as 70% of adolescents with painful periods that aren’t improved with medication end up being diagnosed with endometriosis. Folks who were assigned female at birth (AFAB) are also less likely to get pain of any kind treated by medical providers.
Disbelief in pain is an even more significant concern in the Black community, which goes back to the days of chattel slavery and the forced experimentation that laid the foundation for modern gynecology. On average, Black people are about 50% less likely to be diagnosed with endometriosis—and if they do get a diagnosis, they have to wait an extra 2.6 years as compared to white people.
“It’s important to get the word out: If you miss school or call in sick to work several times a year due to period pain, that’s not normal. You may have endometriosis,” says Dr. Orbuch. “You shouldn’t be debilitated by your period. Curled up in a ball on the floor. Needing to sit in a hot bathtub. That’s not ‘normal.’”
How can you get relief from endometriosis pain?
“In those with endometriosis, a multidisciplinary approach is a must,” says Rawlins. This approach can include medication, psychotherapy, dietary changes, surgery, and pelvic floor physical therapy.
Because endometriosis is a condition that may depend on estrogen levels in the body, hormonal medications are often used to treat symptoms. These hormonal medications include:
- Combination estrogen-progestin medications like the birth control pill, ring, or patch.
- Progestin-only medications like the minipill or hormonal intrauterine device (IUD).
- Very rarely, androgen medications like Danazol or gonadotropin-releasing hormone agonists (which block ovarian function) like leuprolide or elagolix.
While medications can provide relief, according to a committee opinion published in the American Society for Reproductive Medicine’s journal, treating symptoms with hormonal therapy alone may delay more effective treatment. As a result, people who want to have biological children will have to wait longer to undergo treatment that improves their chances of getting pregnant.
Minimally invasive surgery
The only way to treat endometriosis itself—rather than simply managing symptoms—is to undergo minimally invasive surgery with an OB-GYN or reproductive endocrinologist who specializes in treating endometriosis. Surgery removes the endometriosis. People with the condition can opt for fertility-sparing endometriosis surgery to increase the likelihood of getting pregnant later on.
“It’s very helpful before surgery to get pelvic floor physical therapy,” says Dr. Orbuch. “With pelvic floor physical therapy, patients tend to start seeing positive results very quickly and begin to feel better.”
Pelvic floor physical therapy
“Pelvic floor physical therapy is a tried-and-true method that effectively improves pelvic floor muscle health and restores bowel, bladder, and sexual function in those with chronic pelvic pain,” Dr. Rawlins explains. “For those with endometriosis, it can be a game-changer.”
“Many endo patients have become hyper-sensitive to pain — you touch them and they flinch. The pelvic floor and back and everything is tense and knotted up,” says Dr. Orbuch. “A pelvic floor physical therapist can help to unwind all of this tension and bring them back to a better place.”
While experts like Dr. Rawlins and Dr. Orbuch have known this to be true for a long time, in 2021, the first randomized controlled trial was published confirming it: The researchers found that pelvic floor physical therapy was a “promising new treatment” for improving:
- Pelvic floor relaxation
- Superficial dyspareunia (when pain around the vaginal opening is felt during sex)
- Chronic pelvic pain in people with deep infiltrating endometriosis
Here’s how pelvic floor physical therapy can help people manage the symptoms of endometriosis:
Manual therapy: Pelvic floor physical therapists can use advanced manual therapy (physical therapy using the hands) as treatment to restore movement and function in the pelvic muscles, joints, and connective tissue.
Education: Physical therapists can also provide education to help with restoring balance in the body, improving bowel and bladder function, and understanding the science of pelvic and chronic pain—as well as how to reduce it. As experts in pelvic health, pelvic floor physical therapists are also equipped to offer guidance on evidence-based endometriosis treatment and information on the biopsychosocial aspects of sexual function and wellness.
Lifestyle changes can also help people with endometriosis feel better. Pelvic floor physical therapists can guide patients through making small, sustainable changes to how they nourish their bodies. Since endometriosis is an inflammatory condition, incorporating as many anti-inflammatory foods as possible—like fatty fish, nuts and seeds, and plant oils—can decrease someone’s sensitivity to inflammation. This is also why teaming up with a dietician is so beneficial.
Exercise: Pelvic floor physical therapy offers a range of movement-based therapies as well as exercises that support moving through daily activities more comfortably and confidently—without fear of experiencing pain or worsening symptoms.
Home programs: Techniques learned in pelvic floor physical therapy need to be practiced outside of sessions to make them second nature. Therapists may advise on stretches, exercises, and self-care strategies to reinforce the goals of physical therapy. Additionally, pelvic wands or vaginal dilators can assist with implementing manual therapy at home.
Referrals: When a patient is first seen by a pelvic floor physical therapist, they’re screened for non-musculoskeletal causes of pelvic pain. Therapists can collaborate with a patient’s care team to rule out concerns about other medical causes of pelvic pain.
If pelvic floor physical therapy does not fully address a patient’s pelvic pain, the therapist will help establish a care team that considers all facets of the issue. For example, they can connect patients with sex counselors as well as psychotherapists. If endometriosis is suspected, they can also bring the right endometriosis experts on board to diagnose and medically treat the condition.
“We will advocate for your health by connecting you with other endometriosis experts—if you don’t already have a team—so that you can get the holistic treatment that is best for your symptoms,” explains Dr. Rawlins. “Pelvic PTs are very endo-savvy, and understand how difficult proper diagnosis and treatment is, so they will refer you to a trusted provider if needed for further assessment.”
Treating endometriosis pain at Origin
Origin’s team of expertly-trained and dedicated pelvic floor physical therapists are here for you if you have any level of pelvic pain — and whether or not you've been given an official endometriosis diagnosis.
For people with symptoms of endometriosis, Origin’s therapists offer education and therapeutic support to help you feel better, as soon as possible. Your therapist will connect you with additional specialists as needed to ensure your health management is holistic and comprehensive.
Therapy with Origin can be covered by most insurance providers. If we don’t take your insurance, we can offer you a superbill for potential reimbursement or referrals to someone who does.
“Endometriosis impacts everyone differently, but you don't have to suffer in silence. You can heal and reduce or even eliminate your symptoms,” says Dr. Rawlins. “But you need are the right tools and healthcare professionals to help guide you.”
Book a visit with Origin today and take your first step on the path to feeling better.