Endometriosis UK

So confused ???!!! To have surgery or not ??? Is it my endo or bladder ?? Really appreciate some advice please

I have been diganosed with endo 5 years. I didnt have any sysptoms pre the birth of my second child. after was digansoed with endo, pelivc vein congestion and IC (painfull bladder syndrome). I had 6 months of prostap, 6 months of low dose abx for recurrent uti ( started in my pregnency), mirena coil fitted and veins embilised. I was ok for a couple years but about 1.5 yeasr ago started to get worse. I prusumed it was my endo. I had a lap, hyster and cyst in january these were the findings...........

uterus normal size to just bulky, cavity 7.5 and mobile, cavity smooth, mirena in sititu. both ovaries and f tubes looking healthy. pelvic peritoneum few areas of superficial scaring one pseudo pouch close to left utero-sacral ligament and scaring rpund it. wide spread corkscrew vessels indicating early stage endo. bladddeer normal on second filling.

I am under 3 specialist the above who suggest the way forward is to remove the entire peritoneum pelvic tissue and uterus leave ovaries.....my gyn who i was under orginally (shown her above results) say my endo isnt bad enough for this type of surgery. my third specialst is a doctor who tests and treats for uti s. since having the lap in january i have found and been to see this bladder doc who had found E coli and entraccous in my bladder. she thinks the pain the burning and stinging (not while i wee though) is coming form these bugs in my bladder. I am been treating for these bugs but its a long process.

I am booked for surgery in may dont know if i should hold off on surgery (gyn doc says she has a patient that have had this done for stage 1 endo and they are in worse pain then before surgery, she said this surgery is for endo stage 3 and 4) and treat bladder see if pain is from there. Can endo develope i have stage 1 at the moment, worried if i dont have the surgery it will spread and dont want to get to stage 3 or 4. Having hormones, full thyriod testing and mri in the next couple of weeks?

Sorry for the long post but would like to hear your thoughts as the doctors are all confusing me???? Really appreciate you reading my post


2 Replies

i'm afraid i dont know the answer to your question,but wanted to acknowledge how hard this must be for you! it would be great if your doc's could agree on a plan of action, because how are you possibly to know who's opinion to follow. would it be worth trying to see what happens after bladder treatment is finished? I believe endo can develop and become worse but that some peoples will not. is it not possible for you to have a lap to burn off the endo you have? and see what happens? what they are proposing sounds quite extreme for minimal endo, especially if gynae is worried it would cause worse pain?

im sorry I cant be of much use, but good luck trying to figure out what to do, at the end of the day try and get as much input from the professionals overseeing your care, and ask your questions like what would happen if you dont do it? could it get worse? and follow your heart, i imagine deep down you have an idea about what you really want

take care x


Hi nayjay

Thank you for your reply to my post, it is so helpful to get a view point from a neutral perspective . I have decided to put the surgery on hold going to have a MRI and some other tests with original gyn doc and follow the bladder route for now. Thank you again I wish you all the best x


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