UNDERSTANDING ENDOMETRIOSIS: A WHOLE-BODY DISEASE

What is Endometriosis?

Endometriosis is a chronic, systemic disease where tissue similar to the lining of the uterus (endometrium) grows outside of it. These growths, often called lesions or implants, can be found on the ovaries, fallopian tubes, bowel, bladder, diaphragm, and even beyond the pelvic region.

Although often labeled a “reproductive condition”, endometriosis is now understood to be much more.

It involves inflammation, immune dysfunction, hormonal imbalance, and nervous system changes. Many researchers believe it has features of an autoimmune disease. It is a full body chronic inflammatory disease.

Why Diagnosis is Delayed

Many patients suffer for 7–10 years on average before diagnosis. This delay happens because:

Normal imaging: Ultrasounds, MRIs, and blood tests often look “normal,” especially with superficial or hidden lesions.

Dismissive responses: Patients are told their pain is “in their head,”“just bad periods,” or attributed to stress, anxiety, or depression.

Misdiagnosis: Common mislabels include IBS (irritable bowel syndrome), fibromyalgia, anxiety, depression, chronic fatigue syndrome, or unexplained nerve pain.

ENDO BELLY: WHY THE BLOATING HAPPENS

“Endo belly” refers to the sudden, painful abdominal bloating many patients experience. It can make someone look several months pregnant within hours. Causes include:

Inflammation and immune activation in the abdomen

Trapped gas and slowed bowel motility from adhesions

Hormonal fluctuations around the menstrual cycle

Sensitized nerves in the gut (visceral hypersensitivity)

This bloating is NOT cosmetic—it reflects underlying disease activity.

GI Issues and Nausea

Endometriosis often affects the bowel and digestive tract, leading to:

Constipation or diarrhea

Painful bowel movements

Food sensitivities

Nausea and vomiting during flares

This occurs because lesions can irritate or adhere to the intestines, disrupting normal digestion and causing local inflammation.

Fatigue, Brain Fog, and Memory Issues

Many patients describe overwhelming chronic fatigue that doesn’t improve with rest. Causes include:

Inflammatory cytokines that alter cellular energy production

Hormone imbalances (estrogen, progesterone, thyroid function)

Sleep disruption from pain

Mitochondrial dysfunction, reducing energy at the cellular level

“Brain fog” and memory lapses are linked to chronic pain, inflammation, and changes in stress hormones (like cortisol).

Vitamin D and Joint Pain

Low vitamin D levels are common in patients with endometriosis. Vitamin D plays a role in:

Immune system regulation

Bone and joint health

Inflammation control

When deficient, patients may experience worsening pain, stiffness, and immune dysfunction, contributing to joint pain and fatigue.

Adhesions: The Body’s Internal Scars

Endometriosis can cause adhesions—bands of scar tissue that form between organs. If left untreated, adhesions can:

Bind pelvic organs together

Restrict bowel movement → causing constipation, pain, or bowel obstruction

Limit bladder function

Contribute to infertility

Cause chronic pelvic, back, or nerve-related pain

Beyond Reproductive Years: Menopause and Endometriosis

Endometriosis is not just a disease of young women. Even after menopause, it may continue to cause problems because:

Residual lesions can remain active despite lower estrogen levels

Hormone replacement therapy (HRT) can stimulate dormant lesions

Adhesions and nerve damage from years of disease remain permanent

Chronic inflammation continues to affect energy, brain function, and pain.

The Whole-Body Impact of Endometriosis

Endometriosis is not just about pelvic pain—it’s a systemic inflammatory and immune condition. It affects:

Reproductive system → pain, infertility

Digestive system → nausea, bloating, bowel dysfunction

Nervous system → brain fog, nerve pain, fatigue

Musculoskeletal system → joint pain, stiffness

Immune system → autoimmunity features, vitamin deficiencies

KEY TAKEAWAYS FOR PATIENTS

• Your pain and symptoms are real.

• Endometriosis is more than a reproductive disease—it’s systemic.

• Normal scans and labs do not rule out endometriosis.

• If untreated, endometriosis can affect digestion, energy, memory, fertility, and even post-menopausal health.

Early recognition and multidisciplinary care (gynecology, gastroenterology, functional medicine, pain management, mental health) can make a big difference in managing and controlling the symptoms of endometriosis.

Deep Infiltrating Endometriosis (DIE)

What is DIE?

Deep infiltrating endometriosis (DIE) is a severe form of the disease where lesions penetrate more than 5 mm beneath the surface of tissues. Unlike superficial implants, DIE often grows into:

Muscles of the pelvic wall and diaphragm

Nerves such as the sciatic nerve, obturator nerve, and sacral plexus

Bowel and rectum

Bladder and ureters

Because DIE involves deeper structures, it tends to cause more severe and complex symptoms.

How DIE Affects Organs and Causes Complications

Bowel involvement: When DIE invades the rectum or sigmoid colon, it can narrow the intestinal lumen. This can lead to:

Bowel obstruction (blockage preventing stool from passing)

Fistulas (abnormal tunnels between the bowel and other organs, such as the vagina or bladder)

Severe constipation, diarrhea, or painful bowel movements (dyschezia)

Nerve involvement: DIE can infiltrate or compress pelvic nerves.

Common sites:

Sciatic nerve → radiating hip or leg pain, sometimes mistaken for sciatica

Obturator nerve → groin pain, difficulty with hip movement

Sacral plexus → low back pain, pelvic nerve dysfunction

Bladder/ureter involvement: DIE on the bladder wall or ureters can cause:

Painful urination (dysuria)

Blood in urine (hematuria)

Silent kidney damage if ureters become obstructed

Classic Symptoms of DIE

1. Bowel Disturbances

Constipation, diarrhea, painful bowel movements

Caused by infiltration of lesions into the bowel wall, local inflammation, and adhesions tethering the intestines.

Lesions alter bowel motility and irritate the enteric nervous system.

2. Painful Intercourse (Dyspareunia)

DIE in the rectovaginal septum, uterosacral ligaments, or vaginal wall makes penetration painful.

Nerves in these tissues are highly sensitized by chronic inflammation, so even light pressure can trigger severe pain.

3. Hip Pain

Often due to lesions near the sciatic or obturator nerve.

Pain radiates from pelvis into hip, buttock, or thigh, especially during menstruation.

4. Low Back Pain

Endometriosis on the sacral plexus or uterosacral ligaments causes deep pelvic and back pain.

Pain worsens with menstrual cycles but can become constant over time.

5. Extreme Fatigue

Chronic systemic inflammation triggers cytokine release, which disrupts mitochondrial energy production.

Pain, poor sleep, and iron/vitamin deficiencies (e.g., low vitamin D, ferritin) worsen fatigue.

Endometriosis and the Bladder

When endometriosis lesions grow on or near the bladder, ureters, or surrounding structures, they can create urinary symptoms such as pressure, frequency, urgency, painful urination, and recurrent infections. Lesions may obstruct ureters, silently damaging kidneys. These symptoms happen because lesions infiltrate the bladder wall, tether the bladder with adhesions, and irritate pelvic nerves. Unfortunately, imaging (ultrasound or MRI) often fails to detect bladder lesions, since many are beneath the lining or infiltrate deeply. The gold standard for diagnosis remains laparoscopic surgery with direct visualization and biopsy.

Why Fibroids and Endometriosis Often Co-Exist

Fibroids (benign tumors of the uterus) and endometriosis share similar hormonal and inflammatory pathways:

Both are estrogen-driven conditions (estrogen promotes lesion and fibroid growth).

Both involve progesterone resistance, where cells don’t respond properly to progesterone’s calming effect.

Inflammatory cytokines like IL-6 and TNF-α are elevated in both, fueling abnormal tissue growth.

Genetics: Certain SNPs (single nucleotide polymorphisms) overlap in fibroid and endometriosis patients, suggesting shared genetic susceptibility.

This is why many women are diagnosed with both conditions together, which can complicate symptoms like heavy bleeding, pelvic pain, and fertility challenges.

Scientific Insight: Why DIE is So Debilitating

Lesions secrete prostaglandins and cytokines, causing severe inflammation.

They release nerve growth factors (NGFs) that sprout new pain fibers into lesions → amplifying pain perception.

Adhesions physically distort pelvic anatomy, making normal organ movement painful.

Nerve infiltration explains why pain may not match imaging findings—tiny lesions on nerves can be more painful than large lesions elsewhere.

KEY TAKEAWAYS FOR PATIENTS

• DIE is a deep, infiltrating form of endometriosis that affects muscles, nerves, and organs.

• It explains severe symptoms like hip pain, bowel obstruction, and painful intercourse.

• Fibroids often co-exist because of shared hormonal and inflammatory drivers.

• DIE is not only a reproductive disease—it can continue to affect patients beyond childbearing years, even after hysterectomy or menopause.

• Scientific research shows the systemic and neurological impact, validating that symptoms are not in your head.

Endometriosis and the Bladder

How Endometriosis Affects the Bladder

When endometriosis lesions grow on or near the bladder, ureters, or surrounding pelvic structures, they can create a range of urinary symptoms. This is sometimes called bladder endometriosis or urinary tract endometriosis (UTE).

Common Symptoms

Pressure or fullness in the bladder even when it isn’t full

Frequent urination (day and night), often mistaken for overactive bladder

Urgency (the sudden strong need to urinate)

Painful urination (dysuria), especially around the menstrual cycle

Recurrent urinary tract infections (UTIs) without clear bacterial cause

Blood in urine (hematuria), especially during menstruation, if lesions infiltrate the bladder wall

Why These Symptoms Happen

Lesions can infiltrate the bladder wall or ureters, triggering inflammation and nerve irritation.

Adhesions may tether the bladder to the uterus or bowel, reducing its natural flexibility and creating a constant “pressure” sensation.

Inflammation sensitizes the pelvic nerves, making the bladder over reactive (similar to interstitial cystitis).

Lesions on the ureters can silently obstruct urine flow from kidneys, which may eventually cause kidney damage if untreated.

Why Nothing Shows on Ultrasound or MRI

This is one of the most challenging aspects for patients:

Superficial bladder lesions do not show on imaging.

Lesions often grow under the bladder lining (mucosa) or infiltrate deeply into the bladder wall, making them invisible to standard ultrasound or MRI.

Functional symptoms (urgency, pressure, frequency) arise from nerve irritation and inflammation, which imaging cannot capture.

The gold standard for diagnosis remains laparoscopic surgery with direct visualization and biopsy. This is the only way to confirm bladder endometriosis and to treat it effectively (through excision).

Why Patients Get Dismissed

Because imaging is often normal and urine cultures may not confirm infection, patients are frequently told:

“It’s just recurrent UTIs.”

“You have overactive bladder or interstitial cystitis.”

“Your labs and scans are fine.”

This delay in recognition leads to years of untreated bladder symptoms before a surgical diagnosis finally confirms endometriosis.