Endometriosis Care Needs a Better Approach
Endometriosis should not require years of dismissal, confusion, and self-advocacy just to be taken seriously.
That sentence is hard to write, but it is even harder to live. As a Physical Therapist, Certified Strength and Conditioning Specialist, and Licensed Massage Therapist, I have seen how often pelvic pain, painful periods, fatigue, digestive symptoms, and exercise intolerance get minimized. As someone who has dealt with symptoms of Endo, I have also felt the emotional weight of not having clear answers.
The frustration comes from a painful gap. Endometriosis is common enough that healthcare providers should be well prepared to recognize it, yet many people still hear the same tired lines.
“Painful periods are normal.”
“Try birth control and see what happens.”
“Your tests look fine.”
“Maybe it is stress.”
Sometimes medication helps. Sometimes lifestyle changes support the body. Sometimes physical therapy is a key part of feeling more functional. But none of those should replace a thoughtful, informed search for the root of the problem.
Real care should be curious. It should be collaborative. It should treat pain as information, not as an inconvenience.
Endometriosis is more than a painful period
Endometriosis happens when tissue similar to the lining of the uterus grows outside the uterus. It can cause inflammation, scar tissue, adhesions, and pain. It may affect the pelvis, ovaries, bladder, bowel, diaphragm, abdominal wall, and other areas.
The symptoms can look different from person to person. Some people have severe pain. Others have mild pain but significant fertility challenges. Some have symptoms that sound more digestive, urinary, muscular, or nerve-related than gynecologic.
Common symptoms may include:
Severe menstrual cramps
Pelvic pain outside of the period
Pain with sex
Pain with bowel movements or urination, especially around menstruation
Low back, hip, abdominal, or groin pain
Bloating or digestive changes
Fatigue
Difficulty tolerating exercise during symptom flares
Fertility challenges
This is one reason endometriosis can be missed. It does not always fit into one neat box.
From a physical therapy standpoint, I often think about how the body protects itself. Pain can change breathing patterns, posture, muscle tone, hip mobility, pelvic floor function, and how someone moves through daily life. Over time, the nervous system may become more sensitive. The body may stay in a guarded state long after a pain flare begins.
That does not mean the pain is “just muscular.” It means the whole system is responding to a real problem.
That distinction matters.
If someone has endometriosis and their pelvic floor is overactive, physical therapy may help reduce muscle guarding and improve function. If someone has abdominal wall sensitivity, manual therapy and graded movement may help them feel safer moving again. If someone has pain with exercise, strength training may need to be adjusted instead of abandoned.
But supportive care is not the same as complete care. A better approach respects both the disease process and the body’s response to it.
Dismissal does real harm
One of the most painful parts of endometriosis care is the delay. Many people go years before receiving an accurate diagnosis or being referred to someone with specific experience in endometriosis.
During that time, life keeps moving.
People miss school, work, workouts, family events, and sleep. They plan around their cycle. They carry extra clothes, medication, heating pads, and backup plans. They learn which foods might trigger symptoms and which positions hurt less. They keep smiling through pain because they have been taught that pain is expected.
That kind of normalization can be damaging.
Painful periods may be common, but severe pain that disrupts life is not something to brush off. Needing to lie on the bathroom floor is not a normal rite of passage. Vomiting, fainting, missing routine activities, or fearing the next cycle should not be treated like ordinary discomfort.
The healthcare system often separates the body into specialties, which can make endometriosis even harder to address. Pelvic pain may be sent to gynecology. Hip pain may be sent to orthopedics. Digestive symptoms may be sent to gastroenterology. Urinary symptoms may be sent to urology. Anxiety or fatigue may be sent to mental health.
All of those providers can play a role, but someone has to step back and ask: What is connecting these symptoms?
That is where better listening changes everything.
A patient’s story is data. Pain timing is data. Symptom patterns are data. What makes symptoms better or worse is data. When providers ignore those details because imaging looks “normal,” patients lose time and trust.
Imaging can be useful, especially for certain types of endometriosis such as endometriomas or deep infiltrating disease. But a normal ultrasound or MRI does not always rule out endometriosis. Some lesions are small, superficial, or difficult to see. Diagnosis and treatment decisions should consider the full clinical picture.
Better care starts with better questions
Endometriosis care needs a better approach because too many visits stop at symptom control without enough investigation.
Birth control, pain medication, anti-inflammatory strategies, and hormone-based treatments may reduce symptoms for some people. They can be valuable tools. But they do not work for everyone, and they do not erase the need for informed evaluation.
Better care asks sharper questions:
When did the pain start?
Is the pain cyclical, constant, or both?
Are bowel or bladder symptoms worse around the period?
Is there pain with sex, pelvic exams, tampon use, or bowel movements?
Has exercise tolerance changed?
Is there a history of abdominal or pelvic surgery?
Does pain radiate into the hip, back, groin, or leg?
What treatments have helped, and what has failed?
Those questions can guide the next step. They can also help identify when more specialized care is needed.
One resource that helped me feel more informed is The Doctor Will See You Now by Tamer Seckin, MD. The book brings attention to how often endometriosis is dismissed and why skilled, disease-focused care matters. It also reinforces something many patients already know in their bones: being told to live with pain is not good enough.
Books do not replace medical care, but the right resource can help someone ask better questions. It can give language to an experience that has felt confusing or isolating. It can also make the difference between accepting vague answers and seeking a provider who understands the condition more deeply.
Local providers with experience in pelvic health, endometriosis, excision surgery, reproductive health, pain science, nutrition, and mental health can all be part of the care team. The key is coordination. The person in pain should not have to act as the only bridge between every discipline.
Better endometriosis care is not a single appointment. It is a team willing to listen, investigate, treat, and adjust.
Physical therapy can support the whole person
As a physical therapist, I think pelvic health care has an important place in endometriosis treatment, especially when it is honest about what it can and cannot do.
Physical therapy does not remove endometriosis lesions. Massage does not cure endometriosis. Strength training does not make the disease disappear.
Still, these tools can matter a great deal.
Pain changes how people move. It can increase tension in the pelvic floor, abdomen, hips, back, and diaphragm. It can change breathing patterns and make the nervous system more reactive. It can make someone afraid to lift, run, travel, have sex, or even schedule plans.
A thoughtful physical therapy plan may include:
Pelvic floor assessment and treatment when appropriate
Breathing and down-training strategies
Hip, spine, rib, and abdominal mobility work
Gentle manual therapy for guarded tissues
Gradual strength training based on symptoms and capacity
Education about flare management
Pacing strategies for exercise and daily activities
Coordination with medical providers
Strength and conditioning can also be adapted to support the person instead of punishing the body. Some days may allow heavier lifting, longer walks, or more intense training. Other days may call for mobility, breath work, lighter movement, or recovery.
That is not failure. That is smart programming.
People with endometriosis are often told to push through or stop everything. A better middle ground exists. Movement can be flexible, symptom-aware, and still meaningful.
Massage therapy may also help reduce protective muscle tone, support relaxation, and give the nervous system a chance to settle. For someone who spends much of the month bracing against pain, safe touch can be powerful. It should always be consent-based, respectful, and responsive to symptoms.
The best conservative care does not dismiss medical treatment. It supports function while the person pursues answers.
Patients deserve informed referrals and real options
One of the most frustrating patterns in endometriosis care is how often patients get offered only a narrow set of options.
For some people, hormonal suppression helps manage symptoms. For others, side effects are difficult, or relief is limited. Some people need surgery. Some need fertility support. Some need pelvic floor therapy. Some need pain management. Many need a combination.
When surgery is part of the conversation, the type of surgery and the surgeon’s experience matter. Many endometriosis specialists emphasize careful excision of disease when appropriate, rather than simply burning visible spots on the surface. This is a complex area, and each person’s case is different. But patients should have the chance to discuss the risks, benefits, and limitations with someone who works with endometriosis often.
A rushed referral is not enough. A vague “we can take a look” is not enough. Patients deserve clear conversations about:
The provider’s experience with endometriosis
Whether imaging can help with surgical planning
The difference between ablation and excision
Possible involvement of the bowel, bladder, or other organs
Whether a multidisciplinary surgical team may be needed
Recovery expectations
The role of pelvic health physical therapy before or after surgery
The chance of symptom recurrence
Non-surgical options and their limitations
This is where self-advocacy becomes necessary, but it should not be the whole burden. The system should not require patients to become experts before they are believed.
Still, until care improves across the board, preparation can help.
Before an appointment, it may be useful to write down:
Top three symptoms
When symptoms happen during the cycle
What symptoms disrupt daily life
Treatments tried and what happened
Family history of endometriosis or related conditions
Questions about imaging, diagnosis, referral, or treatment options
Bring the list. Use it. If pain affects work, sleep, exercise, sex, digestion, urination, or mental health, say so clearly. Quality of life matters in clinical decision-making.
If a provider dismisses severe symptoms without explanation, it is reasonable to seek another opinion. That is not being difficult. That is participating in your own care.
A better approach is possible
The better approach to endometriosis care is not mysterious. It requires providers to take symptoms seriously, understand the limits of basic testing, refer when needed, and work as a team.
It also requires a shift in how pain is viewed.
Pain is not weakness. Pain is not drama. Pain is not proof that someone is anxious, inactive, or overly sensitive. Pain is a signal that deserves attention.
For the person living with symptoms, the better approach may look like building a team one step at a time. A knowledgeable gynecologist. A pelvic health physical therapist. A trusted primary care provider. A surgeon with specific endometriosis experience when needed. A mental health professional if chronic pain has taken a toll. A massage therapist or movement professional who understands pacing and flare management.
For providers, it means staying humble. Endometriosis is complicated. Patients often arrive with years of history, failed treatments, and medical trauma. Listening well is not optional. It is part of care.
I am grateful for the providers and resources that have helped me better understand endometriosis, including local clinicians who take pelvic pain seriously and The Doctor Will See You Now by Tamer Seckin, MD. That kind of information can be validating, especially after years of feeling like symptoms have been minimized.
This article is for general education and is not a substitute for medical advice, diagnosis, or treatment. Anyone with severe pelvic pain, new or worsening symptoms, heavy bleeding, fainting, fever, or symptoms that disrupt daily life should seek care from a qualified healthcare provider.
Endometriosis care needs less dismissal and more curiosity. Less “this is normal” and more “let’s find out why.” Patients deserve a system that listens before they are exhausted from asking.
Karen Baltz Gibbs, DPT, CSCS, CMP, LMT, PN1-NC, Owner of Garage Training & Rehab Gym
Comments