The stages of endometriosis are typically classified by the location, amount, depth and size of the endometrial tissue – but the stage does not necessarily directly correlate to the levels of pain experienced, risk of infertility or the symptoms presents.
Stage I – this is described as minimal endometriosis with isolated implants and no significant adhesions. These implants can sometimes be mistaken for cysts or ovarian cancers and are small flecks or patches presenton the pelvic surface. These implants can cause irritation and inflammation, leading to the forming of adhesions.
Stage II – mild endometriosis with superficial implants of less than 5cm and no significant adhesions. This is very similar to stage I, but a more aggressive form in terms of the adhesions present. These adhesions are typically more intense and black spots may be visible on the surface of them. At this stage, adhesions can also be found in the area between the uterus and rectum, rather than just the pelvic surface (as in stage I).
Stage III – moderate endometriosis with multiple implants and scarring around the tube or ovaries. Chocolate cysts can also start to appear at this point. If these cysts rupture, they can contribute to a higher level of inflammation and abdominal pain, which can increase the adhesions found.
Stage IV – severe endometriosis with multiple implants and scarring, including large ovarian endometriomas with thick adhesions. This stage is the final of the ‘official stages’ and typically (but not always) patients will have a large number of cysts and adhesions (although I have stageIV and to my knowledge have only had one cyst). The endometriomas and adhesions can grow quite large at this stage and if you have stage IV, you may experience painful bowel movements, abdominal pain, constipation and nausea.
Stage V – as far as I’m aware, there currently isn’t an official stage 5 (please correct me if I’m wrong), but I have seen a few debates on social media on people being diagnosed with endometriosis. This is a more extreme version of stage IV endometriosis, and is starting to be used when endometriosis is present in other areas of the body outside of the abdomen.This can include, but is not limited to, the brain, lungs and diaphragm. Endometriosis on the brain is very rare, and only reported in very extreme cases.
I think that giving endometriosis stages can be misleading to patients and their families. The stages are relevant to doctors, they understand that the stage is due to the amount found and its location, and it is useful for them when working out treatment plans. But, for patients and their families it can cause confusion, they expect the pain of someone with stage IV endo to be more severe than someone with stage I. This is something I have seen over and over again in those online support groups I mentioned in an earlier blog post. Those with stage IV are saying to those with lesser stages of endo that they shouldn’t be suffering and they don’t have it as bad because they have a lower stage diagnosis.
I also feel that it sounds too similar to the stages of cancer that people are diagnosed with, and can cause concern amongst patients and their relatives. In my opinion, using the descriptive terms of ‘minimal’, ‘mild’, ‘moderate’ and ‘severe’ would be more effective and cause less confusion, but unfortunately I don’t think it will do much to help with the competition some people show within the online support community.
It is always important to remember that stage does not relate to the pain scale, or the impact on the life of someone with endo. The stage is equal to the amount of disease present.