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Understanding Endometriosis

  • Writer: Natalie Cooney
    Natalie Cooney
  • 3 days ago
  • 7 min read

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For many people, the journey toward understanding their pain is long, confusing, and at times. deeply invalidating. Endometriosis is one of those conditions that can make you question your body, your worth, and even your sanity. It’s often misunderstood, misdiagnosed, and dismissed—especially in a medical system that still struggles to take women’s pain seriously.

If you’ve been told your pain is “just part of being a woman,” or that birth control is your only solution, please know this: your pain is real, these are not your only options, and you deserve to be believed.

Endometriosis is not “just bad cramps.” It’s a whole-body inflammatory, neuro-immune, and genetic condition that affects millions of people worldwide—many of whom wait years to get a proper diagnosis.


What Is Endometriosis?


Endometriosis is uterine-like cells that grow outside the uterus and attach to organs within the whole-body system. This creates adhesions of the fascia and organs, thus creating pain and rigidity. It is classified as a whole-body inflammatory-neuro-immune-genetic disease. It contributes to pain, bloating, gut dysbiosis (leaky gut), CNS sensitization (raw nerve of body and brain), pain with sex, pain with cycle (pain/inflammation doesn't have to be in line with cycle), infertility, etc. This leads to widespread pain that’s often mistaken for digestive issues or “normal period pain.”

Endometriosis isn’t confined to the reproductive system—it’s a whole-body disease. It involves the nervous system, immune response, hormones, and even the fascia (the connective tissue surrounding your muscles and organs).

This is why symptoms vary so widely. Some of the most common include:

  • Chronic pelvic pain

  • Pain with sex

  • Bloating or digestive distress (“endo belly”)

  • Fatigue and brain fog

  • Painful periods—or pain that isn’t linked to the menstrual cycle at all

  • Infertility or difficulty conceiving

Endometriosis can make you feel disconnected from your body, like it’s working against you. But with the right information and care, it’s possible to reconnect—to find trust and agency again.


Why It’s So Often Misunderstood


On average, it takes 8 to 10 years for someone with endometriosis to receive a correct diagnosis. Many endure years of dismissal of real symptoms, being told their pain is psychosomatic, hormonal, or “normal.” This can inevitably cause feelings of despair and hopelessness. It's a true injustice to see the lack of care people suffering from endometriosis receive.

Medical schools are estimated to be 15 years behind in teaching accurate, up-to-date women’s health information. This gap leads to widespread misinformation—even among doctors.

There is a massive amount of misinformation about endometriosis. RUN, if the doctor wants to "treat it" with birth control, ablation surgery, supplements, diet, and lifestyle. Yes, AIP (autoimmune protocol), birth control, supplements, and lifestyle changes might give relief for some--but endometriosis CAN BE expertly removed (excised) from your thoracic and abdominal cavity down to your pelvic floor. Nancy's Nook is the most up-to-date resource for learning about this.


Here are a few myths worth unlearning:

  • Myth: Endometriosis can be cured with birth control.

    • Truth: Birth control may mask symptoms, but it doesn’t remove or heal endometrial tissue.

  • Myth: A hysterectomy cures endometriosis.

    • Truth: Endometriosis occurs outside the uterus; removing the uterus doesn’t remove endo lesions.

  • Myth: Ultrasounds can detect endometriosis.

    • Truth: Ultrasounds MAY detect endometriosis, but only by an expert eye. Don’t count on your regular OB/Gyne standard ultrasound to be valid. The condition can only be diagnosed through surgical evaluation—most accurately by a trained excision specialist.

When someone says they’re in pain, believe them. Endometriosis ranks among the top 20 most painful medical conditions in the world.


Quick Recap and Some Facts to Reference


  • Getting a hysterectomy will not remove endometriosis.  

  • Endometriosis is a whole-body condition: neuro-immuno-inflammatory and genetic. 

  • Acupuncture and herbalism are often VERY supportive and helpful for stabilizing (may not "remove it" but can reduce many symptoms or slow the growth).

  • It can take an average of 8-10 years for a uterus haver/woman to get a diagnosis. Medical gaslighting plus Med Schools being 15 years behind in women's healthcare...

  • Its pain is rated in the top 20 of the most painful conditions in the world. When someone says they are in pain, believe them. 

  • An ultrasound alone cannot diagnose endometriosis. Must be assessed from symptoms, lab testing, laparoscopy, etc. An excision specialist will do a thorough testing process, which always includes a patient history and symptomology assessment. A regular gynecologist is not trained for this.


The Gold Standard: Excision Surgery

The most effective treatment for endometriosis is excision surgery, a procedure that removes the lesions from the root. This is very different from ablation, which only burns the surface of the lesions and leaves much of the disease behind.

Here’s a quick breakdown:

  • Ablation: Cauterizes the tissue. 80% recurrence rate. Often performed by general gynecologists.

  • Excision: Removes the disease completely, from the root. 5% recurrence rate. Must be performed by a specialized surgeon.

Unfortunately, many doctors still recommend ablation or hysterectomy as first-line treatments, simply because they haven’t been trained in excision techniques.

If you’re considering surgery, seek out an endometriosis excision specialist. Two trusted providers include:

You can also find an up-to-date list of excision specialists through the Nancy’s Nook Endometriosis Educational Facebook Group, a highly respected and research-based resource.


Finding Reliable Education and Support


Navigating endometriosis can feel isolating, but you’re not alone in this—and there are trustworthy resources available.

Nancy’s Nook Endometriosis Education Group is one of the best starting points for anyone newly diagnosed. It’s not a traditional support group, but rather a hub of educational materials, research, and vetted lists of specialists.

Once you join, start at the Guides tab to learn the basics, and explore the Files tab for the most recent list of excision experts.

More recommended resources:


Supportive and Complementary Care


While excision surgery addresses the root of endometriosis, supportive care can make a world of difference in managing symptoms and improving quality of life.

  • Pelvic Floor Physical Therapy: A must after surgery or for ongoing pelvic pain.

  • Acupuncture and Herbal Medicine: Can support the nervous system, reduce inflammation, and ease hormonal imbalance.

  • Somatic Therapy: Helps regulate the nervous system and rebuild a sense of safety in the body—especially after years of medical trauma or chronic pain.

  • Nutrition: While diet alone can’t treat endometriosis, anti-inflammatory and gut-supportive foods may help ease symptoms. (Nancy’s Nook recently compiled a research-informed eating guide for those with active endo as well as Sarah Rae’s article: Diet for Endometriosis: Can Diet Cure or Improve Endo Symptoms?)

Healing endometriosis is rarely linear. There are moments of relief and times of frustration. But building a network of providers who see you as a whole person—not just a diagnosis—makes all the difference.

Endometriosis and the Nervous System

Endometriosis doesn’t just affect the body—it impacts the nervous system on every level. The chronic pain and inflammation can cause the body to stay in a constant state of alert, known as central nervous system sensitization.

This can look like:

  • Feeling “raw” or easily overwhelmed

  • Heightened emotional reactivity

  • Exhaustion and brain fog

  • Difficulty trusting your body or relaxing

This is where Whole-person therapy (aka Integrative Somatic Therapy) can help. By learning to notice sensations, regulate the nervous system, and create safety in your body again, you begin to untangle the fear and tension that chronic pain creates.

Healing isn’t about forcing the body into calm—it’s about listening to what it’s been trying to tell you all along. Don't get me wrong, this is so so hard. I'm sure the frustration with your body is present, and it is frustrating not being able to function the way you want to. Your body does not hate you.


A Note on Advocacy and Self-Trust


Endometriosis can leave deep emotional scars—not just from the pain itself, but from the years of being dismissed or misunderstood.

You may have been told that your symptoms were “normal,” that you’re too sensitive, or that you’re imagining things. This kind of medical misguidance and misinformation can erode self-trust. But part of healing is remembering that your experience is valid.

You know your body better than anyone else.You deserve providers who believe you.You deserve answers grounded in truth, not convenience.


Reconnecting With Hope



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Endometriosis may be a lifelong condition, but it doesn’t mean a lifelong sentence of suffering. With the right care—rooted in up-to-date science, empathy, and body-based awareness—healing and peace within your body is possible.

If you’re navigating this path, start small. Learn. Connect. Listen to yourself and your body. Build a community that honors your story. And treat yourself with compassion and kindness on the hard days.

You are not broken.

You are your own best advocate.

And your body still holds deep wisdom and resilience. 🌿


Another Look at the Recommended Resources (more expansive)


Final Thoughts

We know that healing from endometriosis is not just physical—it’s emotional and relational.

Whether you’re seeking somatic therapy to reconnect with your body or looking for guidance through chronic pain and medical trauma, we’re here for you.

You don’t have to navigate this alone.


🌿 Reach out today to learn more about our integrative, somatic approach to healing in Colorado and California.

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