Inactive endo and adhesion.

[Evanss]

I had my lap yesterday (previous endo diagnosed 12yrs ago and laser surgery). My consultant did not come and see me after the op, a nurse read out the finding on a piece of paper I was handed. My follow up is in three months so I won't get full details until then.

The paper says, 'inactive endo' and there are a variety of answers about this I can find online from 'oh it's just old and burned itself out' to, 'it's old scar tissue that could still cause a lot of pain'. I also had a filmy adhesion on my left ovary, not really sure what that is. The surgeon did not laser this time.

Any words of advice from anyone who has had similar and can shed any light?

I am also waiting on an endometrial biopsy too.

Thanks lovely ladies.

X

[jvg69]

I hope you get some answers x good luck

[Evanss]

Thank you. I was having a lot of pain and loooong periods so on the one hand I'm glad there's not more but in the other I don't feel like I have answers.

I guess the adhesions and the old endo could still be causing the pain as there will be scar tissue. Fingers crossed I get more details in time.

Thanks for your replies xxx

[Evanss]

I've tried going gluten free which has helped bloating and pain form that but not I haven't. Perhaps that's the next step now I know what's going on properly.

[Arcadia-77]

Hi there, it seems like you weren't treated very well. I find it terrible when consultants don't even have a few minutes, to briefly explain their findings to someone.

I'm sorry to say that it sounds really likely that the person you saw is not very knowledgeable on endo. There is no such thing as "inactive" or old or burnt out, endometriosis, it's either endo or it isn't (I have had that confirmed from Dr David Redwine, who knows his stuff on endo!) There is no way that a surgeon can tell just by looking at it, whether the area is causing symptoms or not. So depending on what they saw it either was just "normal" endo, or it was something else different. My guess would be that it was endo though, which is causing inflammation and adhesions, do you know if they treated it at all?

Are you in the UK, if so which region? (I can help you more then) I think it's probably a good idea if your symptoms are troubling you, that you start looking into it all, and consider asking to be referred to an endo specialist now.

[Evanss in reply to Arcadia-77]

Thanks for your help. I am in the north west. I've been researching inactive endo and accordingly some it is a thing. It's essentially stopped bleeding but can be scar tissue?

[Arcadia-77 in reply to Evanss]

No it's really not a thing, It's just a common myth / misunderstanding of it. It's possible that there is scar tissue there too, but if you know you had endo previously, and have only ever had it burnt not excised (= cut out) in the past. It's highly likely that it is endo, as it was never properly removed in the first place. Some studies show that burning endo fails to properly destroy all the disease in 80-90% of cases. Endometriosis does not bleed in the sense that most people think it does, as it's not the same as endometrium, this article explains if you are interested! healthunlocked.com/endometr...

If you are in England you can see whichever endo specialist you like on the NHS. They are listed on the BSGE site bsge.org.uk/ec-BSGE-accredi... please be aware that some are a lot better ie more skilled and knowledgeable than others though. Fortunately you are in a good location, there are a few really good ones in the North West. We are not allowed to name surgeons on this forum, but it's a good idea to get feedback on who you ask to be referred to.

[Evanss in reply to Arcadia-77]

And no they did no treatment. I've had laser in the past. TBH I knew she didn't know her stuff beforehand from some of the answers I was getting but I desperately wanted some help and the lap so went ahead anyway.

[SEB88]

get to a BSGE center asap and dont let that surgeon back! inactive endo, no such thing.

Awful treatment from that surgeon. Call to get a FULL copy of the operation report that goes back to the GP, I got mine and there was lots of things the dr didn't tell me. I am now at a BSGE center.

I hope you feel better soon.

[Evanss in reply to SEB88]

Thank you yes I'll try that. It just feels like this op was a waste of time (it was only yesterday so I'm feeling sorry for myself) I don't want to have to go through the whole process again! I wish it was easier! X

[Simo7]

Evanss, Hi, I'm so sorry to hear about your operation and experience. I do hope that it has given you some reprieve though. I had a laparoscopy yesterday and have been told the same as you: Inactive endometriosis ?! Alarm bells rang after the op hence searching and finding your experience.

As with you I wanted the op and equally I didn't have much knowledge of the expertise of my surgeon. I suspect now that he wasn't very experienced in endometriosis. Could you let me know how you are and what the outcome was?

Sincerely hope that it has bought you some relief.

Thank you xx