What is Endometriosis?

Endometriosis (endo) is a chronic inflammatory disease that has no known cure and is poorly misunderstood by medical professionals—including OB-GYN’s. Endometriosis affects an estimated 1 in 10 people assigned female at birth.

Endometriosis is characterized by tissue found outside of the uterus. This tissue looks similar to the normal cells of the uterine lining, but endo consists of functional stroma and glands that are different from the endometrium (uterine lining) when viewed under a microscope.  It is vital that medical providers and patients understand that endometriosis is found outside of the uterus and has nothing to with the uterus or uterine lining; except in the event of adenomyosis (a “sister disease”). Believing in theories that endo comes from the endometrium can lead to decades of delayed diagnosis, ineffective treatments, and worsening disease.

Endometriosis is commonly found in the pelvic region of the body but is also known to be found in extrapelvic sites (extrapelvic= outside of the pelvis). Though extrapelvic endometriosis is thought to be rare, endometriosis experts are finding that it is not rare and just underdiagnosed, undiagnosed or misdiagnosed.

common endo sites

Of note, there have been documented cases of endometriosis on all organs of the body, including the brain, skin, and spleen.  This is why it is so important we recognize that endometriosis is NOT a disease of the uterus. Again, believing in this outdated theory can lead to decades of delayed diagnosis, ineffective treatments, worsening disease, and interventions that are unhelpful and sometimes irreversible.

extrapelvic endo

Symptoms of Endometriosis

First off, endometriosis is complex and individualized in its presentation. No two patients are the same. Some people have severe and debilitating symptoms, while others may have no symptoms at all. Many endometriosis patients have worsening symptoms during menstruation, but symptoms can be present at any point in the menstrual cycle or in the absence of a uterus.

endo symptoms

Many people may claim that endometriosis sheds in the abdominal cavity just like the uterus sheds during menstruation. But this is not entirely accurate.
Endometriosis is more often secreting inflammatory fluids that cause damage to nearby tissues. The damage oftentimes leads to scar tissue and adhesion development. However, it is possible to have bleeding around the endometriosis if veins have formed around the tissue (angiogenesis).

Does Endometriosis Have A Cure?

Endometriosis is a chronic inflammatory condition that has no cure. However, it is possible to decrease and control symptoms by integrating holistic practices and implementing lifestyle changes. Most importantly, remission is possible for endometriosis patients who are able to access skilled and expert laparoscopic excision of their endometriosis. With the help of an expert endometriosis excision specialist, quality of life can be significantly improve!

The problem is there is no board certification that tells us that a physician is a skilled expert excision specialist.

Finding A Skilled Endometriosis Surgeon

For several years I have led people to the many online lists of skilled surgeons who have been vetted by various groups and online platforms. Though these lists can be valuable, I have found that the best way to find expert care is to educate yourself on what makes a surgeon a true expert.

To help you navigate the learning, I have written a blog post that will help you understand the questions to ask a surgeon and what to look for in their answers.

 >>>>All the Questions to Ask Your Endometriosis Specialist<<<<<

An additional and AMAZING resource is the My Illness Will Not Win community founded by Rosemarie Philip. Rosemarie is a Professional Certified Coach and advocate in the endometriosis community. She is an endometriosis, PCOS, adenomyosis, and Raynaud’s warrior. She has put together a FREE and comprehensive endometriosis course in collaboration with some of the most admired advocates in our community. This is truly the only course that I fully endorse without reservations. I recommend joining her free community for access to the endo course, but I also highly recommend her paid community, which has given me so much in personal health journey. She even has an option to apply for a reduce rate because she get’s that chronic illness can be financially taxing. You can learn more about the My Illness Will Not Win Community HERE

Education Is Key!

Before you can successfully go on to advocate for the best endometriosis care, education is key! Because the fact is, many healthcare professionals (doctors, nurses, advocates, etc) are misinformed and unaware of what exactly endometriosis is and how to treat it. Endometriosis warriors are forced to become their own advocate. We are forced to fight big pharma and our regular ob-gyn’s to get expert care. We are forced to fight insurance for surgeries that NEED to be covered, but aren’t. 

That is why I created Eighty-Six the Endo!  I am here to help you educate yourself and navigate the changes required to manage your symptoms in a way that is holistic and empowering! I want you to know that you are not alone! There is strength in community, and you can find it here.

Ultimately, Eighty-Six the Endo is one resource, but your first resource is yourself. You know your body and you know when you don’t feel well. Listen to your body throughout this journey and be your own advocate! You deserve a life well lived, a pain free life. It’s about time you gain your life back!

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Printable Resources

  1. Center for Endometriosis Care (2021). Endometriosis: A Complex Disease. Retrieved May 22, 2021, from https://centerforendo.com/endometriosis-understanding-a-complex-disease
  1. Center for Endometriosis Care: https://centerforendo.com/
  2. Extrapelvic Not Rare: https://extrapelvicnotrare.org/
  3. Endo What?: https://www.endowhat.org/
  4. Endometriosis Foundation of Houston: https://www.efhou.org/
  5. The Endometriosis Summit: https://www.theendometriosissummit.com/
  6. Endo Girls Blog: https://endogirlblog.com/