Endo excised but still in pain

[nicolajones63]

Its now nearly 3 months since having endo excised from Pouch of Douglas, both ureters, bowel and other spots yet ive still got all the same endo pain as before. If anything, its getting worst the more time goes on. Has anyone else had this problem as the way i see it is if its not there anymore, how can it still be hurting or could it have grown back this quickly

[xnanookx]

Its possible its back, more likely to be the areas healing if you FEEL it follow your instinct go to your gp and ask for a refferal to the endo clinic, if the hospital haven't discharged you yet just call and ask for an appt xx

[nicolajones63 in reply to xnanookx]

Ive got a follow up appt in 3 weeks so hopefully they will suggest somethingelse. Many thanks x

[xnanookx in reply to nicolajones63]

I had a lap in Oct by Xmas I was in agony I saw an endo gynae for the first time yesterday. My post-op was a waste of time who did your surgery? If it was general gynae like mine you need to ask for a meeting with the endo Dr don't let them fob you off xx

[nicolajones63]

It was an endo specialist who has a very good reputation. When i came round from op he said if this didnt work he might remove both ovaries next but that just seemed like they were thinking it might not work anyway which i thought was weird x

[xnanookx]

Oh, hun I really hope its just healing and not failure be clear about the things you want to talk about at the post-op, I'm keeping my fingers crossed for you xx

[nicolajones63]

Thankyou, you too xx

[dugadoo]

Hope you don't mind me asking...i have been turned down for a hysterectomy due to the risk of bowel injury during procedure as my pouch of douglas is completely obliterated with endometriosis...did your consultant discuss any bowel injury risk pre-surgery??

[nicolajones63 in reply to dugadoo]

Hi there, yes before my last op he said that there was a possibility of having to have a colostomy bag and asked if i wanted to see the stoma nurses beforehand, which i declined. Fortunately my bowel wasnt as bad as they first thought so they managed to remove endo without any damage. Ive never been turned down for hysterectomy because of bowel injury. For me they dont want to do it as i am 46 years old and they think its only a matter of time before i go through the menopause and dont want to force it unnecessarily. Ive never heard that being a reason for not doing a hysterectomy. Have you had a colonoscopy or sigmoidoscopy to see if its gone inside the bowel.

I hope you get some answers soon xx

[dugadoo in reply to nicolajones63]

the consultant is reluctant to go ahead with hysterectomy due me being 37, the risk of bleeding and risk of colostomy...not had any bowel investigations....going to ask to referred to endometriosis specialist centre

[nicolajones63 in reply to dugadoo]

Thats definately the best option, its just the waiting between appointments that does your head in . Fingers crossed your bowel isnt as bad as they think x

[xnanookx in reply to nicolajones63]

Sorry I took so long to reply :/ I'm back in June for the preparations to start, colonoscopy etc before the op, the words bowel reconstruction came up but he wanted to wait until June before he commited to anything. As far as I'm aware hysterectomy and or menopause do not stop the spread women have it their whole lives in some cases, there is no guarentees xx

[Hidden]

It's possible. Please don't forget that all these 'treatments' aim to minimise pain or are just a temporary cure, you may find that you'll have to repeat surgeries every year or 2 to stay on top of it (but who wants that?!) There is no cure for endo. The main reason why i am avoiding surgery ( GP and many consultants too) is because I've known some women who have come back with worse pain ( read many horror stories too) and even more lumps than before surgery and and seeing them suffer like that made me realise that i shouldn't "poke the bear" so to speak. The thing that caused it in the first place (surgery) cant be the thing to cure it. So i am sticking to healing by diet/ exercise etc.

Please don't forget that more surgeries create more scar tissues/adhesions which in the end could be far worse to deal with than the endo itself.

I am sure other women have had some relief and will tell you different but that's just it with this endo thing, nobody really knows how it will affect YOU because it affects us all differently. What works for you may not work for me etc etc and that's what makes this thing so darn hard to diagnose and treat because no 2 symptoms are the same!

I really hope yours is just healing and that you'll find peace and live a pain free life.

All the best

M x