What is Endometriosis? Symptoms of an Overlooked Disease in Women’s Health

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This post is a part of our Endometriosis Series written by Brooke Haffey. Brooke is an endometriosis warrior and advocate who has lived with the disease for six years. She has undergone three surgeries to treat it, including thoracic surgery to remove extrapelvic endometriosis of the diaphragm.

The first thing I did after being diagnosed with endometriosis was I went home and Googled it. After learning from my gynecologist that there is no cure and very few treatment options (none of which I liked the sound of) I felt lost and was desperate to get more answers about the disease.

I spent hours researching, but when I was done I just felt more confused. The internet was scattered with mixed information and every site I clicked seemed to contradict the one before it, even content sourced from medical professionals. I wondered, how could there be so many different beliefs about one disease? Which sources are reliable and what information is outdated? Three years and three surgeries later, I finally know the answers!

With help from the experts at the Center for Endometriosis Care, Program Director Heather Guidone and Lead Surgeon Dr. Ken Sinervo, we are kicking off our Endometriosis Series by covering what endometriosis is and the symptoms to look out for.

Endometriosis is a condition whereby tissue similar to the normal lining of the uterus is found outside of the uterus on other tissues and organs in the body. This results in lesions that bleed, causing inflammation and pain. Organs are often fused together and moved into abnormal places by tough, fibrous bands of scar tissue. The disease is commonly found on the bladder, bowels, pelvic walls and even odd places like the appendix, diaphragm, and lungs.

Pain associated with endometriosis is primarily in the pelvis, but is often felt in the legs, hips and back. Pain from endometriosis can be felt at anytime of the month, not just during a women’s period.  “Endometriosis is much more than simple, so-called ‘killer cramps,’ as it is often mistakenly labeled, with symptoms routinely occurring apart from menses at any time of the cycle and, in many instances, becoming chronic in nature.” (Sinervo, 2018).  

Aside from painful periods, the disease presents a wide range of symptoms including infertility, painful sex, bowel issues, bladder dysfunction, severe bloating, vomiting and fatigue. In the case of diaphragmatic endometriosis, pain may be felt in the shoulder, neck and chest - some patients suffer from lung collapse during menstruation. Pain from the disease can present itself in many ways, but can be severe and debilitating in each form. Adhesions may feel sharp or pulling, accompanied by cramping and a feeling of heaviness in the pelvis from inflammation. Since many symptoms of endometriosis overlap with other diseases, such as IBS (Irritable Bowel Syndrome) and Interstitial Cystitis (painful bladder syndrome), the journey to diagnosis is often prolonged and complicated, taking on average seven to ten years.

Women who suffer from the disease often miss school, work, social functions and experience a reduction in their quality of life. “The illness accounts for a significant loss of productivity – nearly 11 hours per individual per week; 38% more than for those with similar symptoms who do not have the disease. Endometriosis remains a leading cause of gynecologic hospitalization and hysterectomy (many performed needlessly) and can distort every aspect of the impacted person’s life” (Sinervo, 2018). Despite popular belief that painful periods are an inevitable part of life for women, debilitating pain at any time during the menstrual cycle is in fact not normal.

Delayed diagnosis and misinformation can be attributed to the lack of awareness surrounding the disease. It is estimated that 176 million (1 in 10) women worldwide suffer from endometriosis yet many have never heard of it - and if they have, do not know the cardinal signs and symptoms.

If you are experiencing symptoms of endometriosis, we encourage you to speak up and talk to your doctor. Heather Guidone advises to “give feedback on your experiences to others, including caregivers and health providers. Above all, know that you don’t have to suffer in silence - take every opportunity you can to use your voice and share your story.”  

If you are not receiving the answers or care you need, we encourage you to find a new doctor who treats you with the care you deserve. You can also seek help from the following resources:

The Center for Endometriosis Care
The Endo Coalition
The Endometriosis Foundation of America

Stay tuned for the second half our Endometriosis Series, where we will cover diagnosis and treatment options.