All You Need to Know About Stage 4 Endometriosis

The severity of endometriosis can vary among individuals and the disease is usually classified into four stages: stage 1 endometriosis through to stage 4 endometriois. However, the staging is not as straightforward as it may seem.

There is no well-defined staging for endometriosis

A total of 22 different classification systems for endometriosis were published between 1973 and 2021. However not of all them find clinical applicability.

Most doctors today use the revised American Society for Reproductive Medicine (rASRM) classification. According to this, stage 1 endo0metriosis is the mildest form of the disease and stage 4 is the most severe.

However, the rASRM staging is not adequate to accurately describe endometriosis symptoms. Instead, it is more of an indicator for endometriosis-associated infertility. For example, it is possible that a patient with stage 4 disease may show no symptoms while a patient with stage 1 endometriosis suffers from debilitating pain. 

Dr. Seckin’s approach

Therefore, Dr. Tamer Seckin uses a descriptive approach to grade endometriosis that considers the patient’s symptom severity. This correlates with histological analysis of the endometriosis lesion to arrive at a logical understanding of disease progression.

Dr. Seckin also classifies endometriosis into four stages. These are early peritoneal, ovarian endometrioma, deep infiltrating endometriosis (DIE), and frozen pelvis.

Frozen pelvis is the most severe form of endometriosis

Frozen pelvis is a rare form of DIE. It happens when adhesions that form due to inflammatory reactions wrap around organs and form web-like interconnected structures. These adhesions can spread from the ovaries to the fallopian tubes, pelvic side walls, and cul-de-sac and even extend deeper into nerves and muscles. 

As a result, the pelvis becomes “frozen”, i.e. cannot move freely. This manifests as severe radiating pain in the legs during the onset of periods, inability to sit cross-legged or even sit comfortably, changes in bowel movements, increased and painful urination, and painful sexual intercourse.

Given the extent of lesion and adhesion proliferation in frozen pelvis, treatment is very difficult. Only a skilled surgeon experienced in laparoscopic deep excision surgery can carefully navigate around pelvic organs and the sciatic and pudendal nerves.

I have stage 4 endometriosis, now what?

As per the rASRM system, a score of 40 points and above indicates stage 4 endometriosis.

Some doctors may recommend a hysterectomy or oophorectomy to treat stage 4 endometriosis but it is important to consider that these approaches lead to permanent surgical infertility.

Irrespective of your disease stage, it is important that your symptoms are not brushed away without being fully examined with empathy. An honest discussion with your doctor is essential to devise an effective treatment strategy.