Stages of endo

[bumble_96]

Hi,

So I have never been told the stage of my endo does this mean it’s not bad?

I’ve attached a letter I have form the endometriosis clinic I’m currently discharged because I’m trailing off the pill as I’ve been on it 10yrs but also ready to have a family.

Most we’ll actually all my pain comes from my right side so would that kinda suggest that the endo is definitely just my right side (kinda what I took from this letter).

What are the stages of endo?

I do have it on my bowel due to my symptoms and bleeding from my bum when on my period and a very sharp shooting pain I get which can sometimes stop me in my tracks til it’s gone.

[Username12345678]

Hi there, my understanding is there are 4 stages of Endo 1-4 but the pain you can experience doesn't always relate to the stage you are at. Im 45 and 10 weeks post a total hysterectomy. I always carry most pain in my right side. The doc removed my womb, ovaries etc and widespread Endo but it was only stage one. She said there was nothing in my right hand side and suggested that I have nerve damage from a previous op (I had my appendix removed as it was being crushed by the Endo and then a further survey to remove widespread stage 3 Endo). My perception is that the stages just refer to how mature the Endo is. But I'm not a doctor! Hope this is useful.

[Jenn2022]

If I read that correctly you still have an endometrioma? (Cyst). If so, that would put you in stage 4. It's to do with how far it's spread. But the stage's aren't particularly useful to be honest which is why a lot of drs don't tend to refer to them. I hope you will be able to get some treatment soon.

[bumble_96 in reply to Jenn2022]

Hi yeah still have it it’s been there for 10yrs nothing has ever changed. I’ve chosen to not have surgery yet just because I’m scared about having a temporary bag due to my bowel being stuck to my uterus and worried what if it ends up being permanent so I’ve put surgery off for now

[Jenn2022 in reply to bumble_96]

I just had surgery and yeah I was really worried about that too. But I was fine - I think it's pretty rare that you'd need one and even rarer that you'd need it permanently.

[Marcia71]

Stages aren’t that helpful and quite American. From this letter I’d say you have quite severe endo and could well have deep endo as endometriomas often suggest that. As your bowel and bladder are involved you need to be seen at a bsge centre and I think arrow park is one. Where you referred over to them? If not ask gp to refer you as this letter says you qualify. Also say you are wanting to start a family as with this level and endo and the fact your uterus appears twisted it could well be difficult and it’s best they start by seeing where your endo is at now and advising you on next steps.

[bumble_96 in reply to Marcia71]

Hi, Ahh ok thank you for that.

I’ve literally put off surgery last month and got discharged because I’m worried and scared about having a temporary stoma bag and that is may not be temporary and end up permanent.

But at this point me and my partner where not completely sure on trying to have a family but he is now definitely ready (I always have been) so I may get back in contact with my gp and get referred back.

Thank you I actually understand it more now