I Knew Something Was Wrong—But No One Listened

I could feel that something was wrong, this much pain is NOT normal.

Endometriosis is one of the most commonly misdiagnosed chronic diseases affecting women and people with pelvic pain.

Because endometriosis symptoms overlap with many other medical conditions, patients are frequently diagnosed with other illnesses before the true cause of their pain is discovered.

Many endometriosis and chronic pelvic pain patients spend years (7-10 years) searching for answers while the disease continues to progress.

Before receiving an endometriosis diagnosis, many people are told they have conditions such as:

• Irritable bowel syndrome (IBS)

• Acid reflux or GERD

• Gallbladder disease

• Colon infections or gastrointestinal disorders

• Chronic digestive issues

• Anxiety or stress-related pain

• Restless leg syndrome

• Asthma

• Fibromyalgia

• Unexplained infertility

• Kinked stomach (personally was diagnosed with)

For many patients, the list of diagnoses continues to grow while their endometriosis remains untreated.

If you’ve been misdiagnosed, dismissed, or told your symptoms were “all in your head,” you are not alone. At the Pelvic Pain Coalition of Utah (PPCU), we are working to change that through education, advocacy, research, and community support.

If you’re living with chronic pelvic pain (diagnosed or undiagnosed), you are not alone.

👉🏼 Explore pelvic pain support, endometriosis education, and upcoming awareness events in Utah.

Why Endometriosis Symptoms Overlap With Other Diseases

Endometriosis is a complex inflammatory disease where tissue similar to the lining of the uterus grows outside the uterus and beyond.

These lesions can grow on organs throughout the body including:

• The ovaries and uterus

• The bladder

• The bowel and colon

• Nerves

• The diaphragm

• Lungs

• Appendix

• Abdominal wall/C-section scars/belly button

• Kidney’s (rare)

• Even the brain (extremely rare)

Because of this, endometriosis symptoms can appear to come from many different organ systems, which often leads doctors to investigate digestive, respiratory, neurological, even psychological (which is completely WRONG) disorders.

Common endometriosis symptoms include:

• Severe pelvic pain

• Pain during sex

• Painful periods

• Digestive problems, vomiting, and bloating

• Pain during bowel movements

• Pain during urination

• Chronic fatigue

• Lower back or nerve pain

• Pain with breathing

• Excessive bleeding

• Infertility

These symptoms can easily resemble conditions like IBS, gastrointestinal disease, gallbladder disorders, or autoimmune conditions, which is why endometriosis is frequently missed.

The Average Time to Diagnosis

Research shows that the average time to diagnose endometriosis is 7 to 10 years.

During that time, patients may experience:

• Disease progression

• Organ damage (even VITAL organs)

• Infertility

• Chronic inflammation through body

• Increased pelvic and back pain

• Fatigue

• Depression and Anxiety

Many patients are also told that their symptoms are normal, exaggerated, related to stress, or their head, which delays diagnosis even further. Hearing that over and over again, eventually you doubt yourself; and stop going to doctors.

Why Endometriosis Awareness Matters

Education and awareness are critical to improving diagnosis and treatment for endometriosis and other pelvic pain.

The more healthcare providers and communities understand the complexity of this disease; the sooner patients can receive appropriate care.

Organizations like the Pelvic Pain Coalition of Utah (PPCU) are working to change how pelvic pain and endometriosis are understood. You can get involved, attend events, or support our mission here.

👉🏼 Get involved, support the cause:volunteer or donate.

Endometriosis and chronic pelvic pain affect millions of people worldwide, yet many patients still spend years, even decades searching for answers.

No one should have to fight this hard to be heard. Or told their crazy and it’s in their head.

And no one should have to face endometriosis and other pelvic pain conditions alone.

If you or someone you love is living with chronic pelvic pain, endometriosis, PCOS, adenomyosis and other undiagnosed problems, your story matters.

YOU matter.

💛 Learn more about PPCU 👉🏼 www.ppcuendowarrior.org

💛Join us at the Endo Warrior 5K 👉🏼Endometriosis Awareness Event in Utah

💛 Support awareness, advocacy, and research 👉🏼Help Further our Pelvic Pain Coalition of Utah nonprofit