Can Endo be Mild with bladder and bowel involvement?

[atealdeer]

I finally got diagnosed but all I remember being told (and all it says on my discharge letter) is endometriosis - mild. I saw an Endo expert privately who said he expected it would be on my bladder and bowel and possibly diaphragm, but I couldn't afford to continue privately so my lap was done in general gynae on the NHS. My biggest issues other than pelvic pain are rectal pain and huge issues with my bladder.

Because I'm due for a med review with gynae, I will be able to ask questions just before Christmas but I'd love some guidance in the meantime. Can it be considered mild but on bowel and bladder? Can it be on the bowel and bladder but not be deep infiltrating? I know diaphragm endo can often not even be seen until it's extremely advanced there, so I wasn't expecting that to be spotted if it's even there, and that might just be referred pain.

I've been on Decapeptyl for the whole year, and the doctor in recovery did say something about maybe the Decapeptyl has been doing its job. Sorry if this isn't clear, I'm only just really becoming alert now. I guess what I'm asking is can they have seen it on bowel and bladder and still class it as mild, or does mild mean it can't be on those places?

[Anna_EndoUK Moderator]

Hi Atealdeer, good question! Unfortunately, I don't think it's a straightforward answer. I've had a look and there's a scientific paper here that explains how surgeons stage endometriosis: obgyn.onlinelibrary.wiley.c.... It looks pretty complicated, but I think the take away message is that having endometriosis on your bladder/bowel doesn't necessarily mean it will be a higher stage (and vice versa), it depends on how much endometriosis there is overall, where it is and how deep it is. One thing to note is that endometriosis stage doesn't correlate very well with symptoms - a person can have stage 1 endometriosis and really severe symptoms, whilst another person can have stage 4 endometriosis with minor symptoms. Sorry I can't give you a better answer, but hopefully your gynae will be more helpful when you go for your med review xxx

[atealdeer in reply to Anna_EndoUK]

The link is really helpful, thank you so much for answering. I know I'm very lucky that I don't have long to wait to speak to someone and I'm still pretty out of it right now, so no need for it to be sooner! I was aware that there can be little disease with lots of pain and vice versa, but I haven't fully grasped the staging criteria. I suppose I have been a bit anxious that rather than endometriosis being the answer, they'd need to keep looking, but maybe it could still be responsible for all the pain. I thought I'd just feel relieved to finally have the evidence that it isn't all in my head, but I still have a bunch of questions. Anyway, thank you for helping me!

[Jade2006]

you need to ask to get referral to a bsge center , general gynaecologist is crap .

Hope you get the answers your looking for and I’m sorry you suffer with this awful disease, don’t let anyone down play you xx