Okay, I have Endo… but what does that mean?

Endometriosis is a chronic inflammatory condition characterized by immune dysregulation. While the disease is estrogen-dependent, estrogen does not cause endometriosis, rather, it fuels lesion growth and inflammation. Although symptoms are often tied to the menstrual cycle and reproduction, endometriosis can have systemic effects, including inflammatory and neurologic impacts that extend well beyond the pelvis.

With endometriosis, tissue similar to the lining of the uterus grows outside of the uterus. These lesions can be found on the ovaries (like me) and fallopian tubes (like me), as well as other pelvic organs such as the bladder (like me), intestines (like me), and appendix (…also like me). They respond to hormonal fluctuations throughout the menstrual cycle, which can drive inflammation, pain, and scarring over time. It is important to keep in mind that sometimes there is no pain with endometriosis, and you will need to rely on other signals from the body. We will cover this in another post on the blog shortly!

It’s estimated that about 1 in 10 women have endometriosis, and many experts believe this is an underestimate due to the fact that it is highly under-diagnosed in teens. On average, it takes nearly 10 years to receive a diagnosis. For the record, it took me 20 years. ALSO, I was brushed off by many OBs before I got a diagnosis at stage 4, so even though it is sucky , if you have a diagnosis you are lucky to have one.

Although endometriosis is often localized to the pelvis (and sometimes it isn’t), it’s important to remember that this is a systemic disease. It can affect, and be affected by, the whole body.

Endometriosis may worsen, improve, or remain stable over time, and its course can be unpredictable. This variability is well documented and is part of what makes the disease so challenging to navigate.

There are currently four stages of endometriosis, based on lesion depth, location, and adhesions — not symptom severity:

• Stage 1: Minimal disease with small, superficial lesions

• Stage 2: More abundant lesions with some deeper involvement

• Stage 3: Both superficial and deep lesions with adhesions

• Stage 4: Severe disease with extensive deep lesions, dense adhesions, and cysts

( At Stage 4 cysts may be visible on ultrasound — this is how I learned I was immediately classified as stage 4)

Endometriosis looks different in every body. While inflammation and estrogen signaling are key players, how the disease shows up and how it responds to treatment is deeply individual. This is why care should always be personalized and guided by a knowledgeable provider. There are many OBs and specialists who are genuinely passionate about supporting and educating the endometriosis community.

Most important takeaway: you did not do anything to cause your endometriosis. This is not your fault — and it never was.