endo left after hystorectomy still pain even though this has been removed - help!

[caroljane80]

has anyone any experience of bio identical hormones and whether these cause less pain than synthetic hrt. Im having a terrible time. Post hystorectomy with ovary removal really bad pain more so than before. i feel my HRT stimulates the pain but i need it for night sweats sanity etc. Had a second opinion lap privately last week. he found endo that had been missed to rear of bladder and he divided some adhesions. But i still get the same pain when i take HRT! He burnt the endo off ! ( i only saw him immediatly post op so wasnt really able to ask more as i was a bit out of it ) I worry he has used laser and this is no good ( we discussed excision was the best but dont know what he did yet he said removed it " burnt it off" yikes !!) but i see him in a week and will ask more. This nightmare is never ending for me. Next step going to ask for a pill camera to check inside small intestine to see if anything in there as people just keep saying there is nothing there or that they have dealt with what they found. I was really hopefull this had sorted it but no. Not so far still same pain if not worse, He did some adhesiolysis which i think means dissolving the adhsions . I will have to ask more when i see him. Anyone got any ideas im thinking im gonna have to get a section of bowel removed at this rate. Im losing my job , my home and my sanity over this and money!! Im hanging by a thread with it and havnt much time as i had hyster in oct 2016 been off work nearly a year now on half pay and at risk of being made unemployed due to this. Thank god i have my mum as a safety net but it doesnt come without sacrifices . Any ideas welcome. It seems concentrated around my belly button the pain as well. Thinking about asking doc for oxycodone or something although we have had "fun" with the fact i was on tramadol and docs only focus * gp ) was getting me off that and told me i couldnt be in pain. Im also consulting a solicitor about this GP and possible misdiagnosis and medical negligence as endo missed first time and pressured into hyster as they waated me to stop the injections ( gonadaptrophin agonists prostrap/ zolodex ) . I was actually better on th einjections althoug i did get a few days of pain here and there but not like i am now it is far worse! The gyne bsge centre i had hyster at wont even look into it and not getting any help form them ( hence private lap and treatment last week ).

[Marcia71]

Sorry to hear your story but it's also like reading mine! I had hyster and ovaries out in Feb 2015 but done by a general gynae and he left endo behind. I was left in so much pain I paid for private lap with another gynae who said they were endo specialist. They burnt it off and put me on an oestregen only hrt. So actually pain got worse. I then lost my job ☹️

Finally heard about bsge clinics and got referred to one and after a bit of a struggle got them to do a lap and excised endo and removed adhesions and scar tissue and unstuck things - most importantly my bowel was unstuck from pelvic wall as was appendix and it taken out. I had two gynaes a colorectal surgeon and two anaesthetists there. They felt pain was most likely from bowel being stuck. Thankfully pain has gone and I'm just returning to normal life.

Along this journey my bsge gynae changed me to a combined hrt tablet which seems to help me with my hot flushes. As well as being at bsge clinic she is head of menopause clinic so feels she knows more than most.

Finally if your on Facebook I'd recommend joining a group called endo revisited Uk as lots of helpful info.

[caroljane80 in reply to Marcia71]

Hi thanks so much for your reply it gives me some hope. Sadly mine was at a bsge centre !! but it might as well not have been! I have had some adhesionlysis and some endo removed from back of bladder. I still have pain but not sure if this is post surgery or original issue or worse. I had a lap ( claimed endo not there in july 2016 ) then a hystorectomy as you read with ovary removal and 7/8 months now of pain. The good news is a solicitor is now taking on my case. Like you my job is at risk , i worry constantly and i amd kept awake at night with severe pain. Just been to doctors now to get some morphine again . Criky they shouldnt have had you on estrogen only hrt!! Im on tiblolone which i think is a synthetic bit like combines but im going to check and it seems to aggrivate the pain whereas it wasnt this bad before. Im going to try the progesterone cream only when it comes and not tak ethe HRT. I skip days of HRT as it is cos of the pain. Its a bit like what mine was saying in that they wanted to keep my ovaries in. I was like are you crazy!! I had gonadatrophon agonists for 2 years and life was unbearable without them ! Maybe you could consider legal advice. Crazy to have you on estrogen only just because you have no uterus ( which is what they think is ok ). Feels like we are in the dark ages here with this condition sometime. Thanks for reply c xxx

[Hidden]

I had a hyst + BSO plus excision nearly 10 weeks ago at a bsge centre - I'm not on HRT yet as they asked me to wait so I don't know anything about that but I did wonder if you could possibly get yourself referred to a different centre for help - it seems from posts on here that not all centres are created equal. So far I'm (touch wood) pain free - I'm happy to tell you who treated me if you want to message. I'm so, so sorry you're having such a horrible time.

[caroljane80 in reply to Hidden]

Hi thanks for repy. If you could tell me who treated you that would be great but im in west yorkshire and i think maybe to bat on with these private surgeons possibly. I will see what happens tomorrow when i see him. I just cant afford the time sadly that nhs might take due to the massive delays following my hystorectomy. I lliterally have weeks before i lose my job now. BUt thanks anyway.

Cxx

[caroljane80]

Hiya thanks for reply. Im currently with a private surgeon as i dont have much time after being messed around by a bsge centre in my area . I beleive one of them is very good on endometriosis here but i went with the bowel surgeon as we discussed endo and at that time i felt he knew the equivalent. However i am in a great deal of pain after this second surgery. I hope its post surgical but im not convinced . Im going to see him tomorrow to discuss it and i will ask more what he did/found etc. He did find a couple of things but i think the words burnt off bladder were used which filled me with dissapointment and that he had divided/ says adhesiolysis on the form some adhesions. I need to ask if these are new adhesions from the hystorectomy or really old ones that were never found or removed. I just want my life back. Really fed up of people assuming that ive now had this hystorectomy and it should be some big cure all. " Are you better now" ? just makes me angry at the moment as i hav eto then explain the ins and outs of endo against this prejudiced view. Ive totally given up on the nhs endo centre . I was going to go to LOnon but felt ot was a bit of a trek . bUt to save money it could be an idea but i have just lost alot of faith in nhs at moment. And it takes forever especially as they wouldnt help me after the hystorecomy and had to endure pain for 7 months. I did go back to them several times but they just were patronising or obstructive.