This post aims to unravel the layers of endometriosis, symptoms, and the critical role that the stages of endometriosis play in diagnosis and management. Whether you’re seeking clarity about your own experiences or supporting someone on their journey, join us and read on as we navigate the stages of endometriosis and help shed light on this often silent and challenging condition.
What is Endometriosis?
Endometriosis is a serious and chronic disorder where the tissues from the endometrial lining grows outside of its home in the uterus. According to latest research, 11% of women are affected. The condition is found to have genetic components as 40 genetic risk factors have been mapped, including some genes which have mutated in a way similar to cancer cells.
It is different from adenomyosis in important ways.
The Importance of Staging in Endometriosis Diagnosis
The staging was created by the American Society for Reproductive Medicine (ASRM) based on the number and depth of lesions in the endometrial cavity. Later, they revised the stages to include a point system which allows for the scale of the disease and to help determine proper classification.
The ASRM was founded 80 years ago and is currently a nonprofit organization located in Washington D.C. It’s members are comprised of 100 members from all over the world. It’s about us page is quite revealing about what the organization stands for and supports.
The American Society for Reproductive Medicine (ASRM) Staging System
These criteria are included in the ASRM’s staging:
- The disease’s location,
- The extent and depth of endometriosis implants,
- The presence and size of ovarian endometriomas,
- The presence and severity of adhesions.
|American Society of Reproductive Medicine Severity Classifications
I don’t know about you, but stages evoke certain feelings in me that aren’t always pleasant. In my own non-medical opinion, stages are classifications for surgeons, and not necessarily the prognosis of your health forever.
What are the Different Stages of Endometriosis?
The organization EndoFound (founded by a famous celebrity with endometriosis) has their own classification for stages of endometriosis as the disease can be more complex and nuanced than just lesion size, location and depth.
We will look at those for purposes of more fully exploring what each stage may entail. (I say may, because everyone is different and minimally invasive surgery known as a laparoscopy is the current gold standard for evaluation and diagnosis; however, certain organizations are looking for new bloodwork to help identify how aggressive he endometriosis may be presenting).
What are the Stages of Endometriosis?
Let’s jump into what EndoFound classifies as each of the various stages of endometriosis.
Stage 1 (Minimal) Endometriosis
Also known as Peritoneal endometriosis, this stage includes endometriosis tissue on the the peritoneum. It is considered the most mild phase.
Please keep in mind, though, that any stage can involve intense pain, menstrual discomfort, difficulty conceiving and a host of other health issues.
Stage II (Mild) Endometriosis
This stage, know as ovarian endometriomas, involves endometriosis established within the ovaries.
What does stage 2 endometriosis look like?
It can look like the ovary has a growth on it that is blood filled (aka chocolate cyst, also known as an endometrioma). The ovaries may be larger than normal, may be at risk for torsion or twisting for example.
What is the difference between Stage 1 and Stage 2 endometriosis?
The main differences between the 1st and 2nd stages of endometriosis involve the location of the endometrial tissue (in the peritoneum versus more widespread cell damage).
Stage III (Moderate) Endometriosis
This stage, also known as deep infiltrating endometriosis, includes endometriosis on the organs of the pelvic cavity. These organs would include the ovaries, rectum and uterus. Sometimes, the adhesions can be so widespread that a woman’s pelvis becomes frozen (and where pelvic floor physical therapy can be instrumental in resolving abnormal structural function especially post-surgery).
What does stage 3 endometriosis look like?
Stage 3 can have adhesions and scar tissue throughout the pelvic cavity. Organs may lose the ability to move freely, and become trapped by the fibrinogen based adhesions.
Stage IV (Severe) Endometriosis
This 4 stage of endometriosis is also labeled deep infiltrating endometriosis II. It is a more intense form of stage 3 and involves endometriosis inside and outside the pelvic cavity. Endometriosis cells may migrate to the bowels, appendix, diaphragm, heart, lungs and the brain.
Some classify an extreme form of this as stage v, though unofficially.
Why does this happen within the body? Some newer research is showing that in women with endometriosis the immune system is not working properly and therefore “bad actor” cells are going where they do not belong, though there are multiple inter-related factors within the body allowing for the spread of endometriosis.
Diagnosis and Treatment Options Across Stages
The current gold standard for the diagnosis of endometriosis and diagnosis of the stages of endometriosis is a laparoscopic surgery.
However, cutting edge lab testing may someday replace the need for surgery to formally diagnose endometriosis. Certain immune and inflammation markers may help tell the story about severity of endometriosis.
Some doctors test the CA-125. This lab is generally used to pinpoint cancer, though low levels that are still out of range can help confirm endometriosis from a doctor’s point of view. (Note: this test does not mean you have cancer).
There are a host of medical pharmaceuticals that your doctor may prescribe you based on symptoms and life goals. You can look those up on other sites, research the side effects and long term effects of those medications, and speak with your doctor about those further.
Holistic or Integrative Care Models for Endometriosis
While surgery may be the best course of action for your particular situation, rushing into surgery can be daunting. My personal advice is to not do something you feel rushed into, unless you have all of your questions answered and you have done your homework which can take at least a little bit of time.
I had heard enough horror stories about surgery for endometriosis that I took my time to find the right surgeon.
What I wish I had known more about was integrative care prior to surgery. I had done just about everything I could think of to help myself via diet and supplements, cleanses and herbs, varied exercise, sleep and prayer, but it was a lonely road on a tight budget.
I also recommend finding a good Traditional Oriental Medicine practitioner who is qualified to support you with herbs (certified) and acupuncture (licensed to practice).
Traditional Oriental Medicine has been a part of my healing journey and something I highly recommend. TOM sees diseases and conditions from a different lens than Western medicine, and can offer a host of solutions that are minimally invasive, have no side effects and are relatively inexpensive (though acupuncture can be a financial investment).
Did this post help clarify the 4 main stages of endometriosis as defined by EndoFound? Use the comments section below! Hopefully you found what you were looking for – wishing you wisdom as you navigate this space!