Stages of Endometriosis.

[Nicob32]

Can someone enlighten me about the stages of Endometriosis please? My consultant is fab but has never mentioned a stage of Endometriosis. Any info that could be offered would be much appreciated.

[Catness]

Endometriosis is 'graded' between 1-4 with 1 being the Least extensive and 4 being the worst. However the "grade" of the endometriosis often doesn't reflect the pain or level or symptoms. Someone with grade 1 can experience more pain then grade 4. I for example have grade 3/4 extensive endometriosis but pain wise it's not that bad. Hope that helps xx

[Nicob32 in reply to Catness]

Thank you.x

[Impatient]

Stage 1- is a subtle, might be a small patch causing raging pain... and is the most common at 80% of women, but the endo itself is shallow, isolated and doesn't cause pain and may only be found if having surgery for something else. It doesn't cause infertility issues.

Stage 2- is typical endo and is the majority of ladies who have fertility problems and endo pain..the endo is still at the lesion stage so no cysts but can be v.painful..Can be operated on by a regular gynaecologist as it is basic surgery

Stage 3- is with cysts, infertility issues, pain and accounts for 10%...you may need a specialist Endo gynaecologist for this one

Then stage 4 or severe is with cysts and deep infiltrating endo..the endo is invading the walls of bladder or bowel etc and is about 3% of cases but does require highly specialised surgery and more than just a endo-gynaecology surgical expert, you will probably need a team of surgeons- colorectal and genito-urinary surgeons etc.

Stage 5 is a recent American invention...and i am not quite sure what in their stage 5 is any different from stage 4 elsewehere other than they want to be more severe than anyone else.

If someone is classified as severe endo, then it is cystic, they will have or will have had endometriomas (blood filled cysts) and will have or will have had invading endo that is deeper than just a superficial surface endo (the sort easily attacked by lasers).

It doesn't really match up with pain levels, and some time ago I suggested on the forum that we should also apply a letter of the alphabet for the levels of pain. It seemed a popular idea at the time...i shall have to try and find that post.

[Nicob32 in reply to Impatient]

Thank you the information was really helpful.x

[Noorahikari in reply to Impatient]

Does stage 4 sufferers always have to operate on it? When there’s no pain or bad effects from it.

[sanchia46 in reply to Noorahikari]

It's up to you. I have stage four endo but declined the op.

[Noorahikari in reply to sanchia46]

I was just diagnosed when they did a laparotomy to remove 2 chocolate cysts. I’m not into going for another surgery again but when I was told how it was sticking some of my organs inside (my dr didn’t explain much he wasn’t helpful, I’ll ask another dr on my next appt which is mths away tho he did say that usually they just treat it based on pain and many women have it w/o operating on it), I do get worried like what will and can happen in the long run. Though I did found on a website somewhere that states if it doesn’t cause any pain, it’s a wait and see approach. So I want to hear from others who have stage 4 and who just live with it. Thank you for replying! What makes you not want to do the op?

[sanchia46 in reply to Noorahikari]

Because the op they would do for me is a major one and carries risk of me wearing a catheter bag at least on the short term but possibly permanent as well. As my endo is by my bowel. I decided to take the pain instead and be able to use the toilet on my own!

[Noorahikari in reply to sanchia46]

Oh! I understand, that’s going to be tough... I couldn’t get a clear answer about where my endo is but I remember him mentioning it (my ovary maybe?) was sticking to my lower bowel/rectum area. Did your doctor say any other concerns of not doing anything asides from having pain?

[sanchia46 in reply to Noorahikari]

It can cause infertility.

[Noorahikari in reply to sanchia46]

Ah yes.. thank you. I hope it won’t affect my other organs. 🤔😞