It's half past 6 and I've been...

[Amanda2409]

It's half past 6 and I've been up all night in agony, just needed to speak to people who understand!! A total hysterectomy 2years ago, just diagnosed with fibromyalgia also, my dr won't listen, he says I can't have Endo I had a hysterectomy and I feel like I'm hitting my head against a brick wall....sorry for the rant xx

[caroljane80]

Hi there so sorry for you. I'm not much better have had hysterectomy with removal of ovaries and three days after op bam my usual pain came back and its been pretty constant for 7 weeks now. I'm on HRT tibolone and last zolodex was due to run out of my system about end of sept. I was actually better on the zolodex than I am now very much much better. Gp not helping said I cant be in that much pain and delays in seeing consultant and when finally saw him he was aggressive and unproffesional and put the blame on me for apparently "asking for the hysterectomy". The real scenario was they did a shit laparoscopy not looking everywhere like bowels etc and said no endo so come off the zolodex which was helping me very much. They used the excuse that I needed to stop because of the effect on my bones. However the effect on my bones is exactly the same with a hysterectomy with ovary removal - but they were more than happy to go down that route. Anyway I'm sure this doesnt help you. can you get to a different consultant go private if you have to and/or get the zolodex or other gnr agonist. In my case I strongly believe I have ovarian remnant syndrome. It does exist and it has increased in prevalence with the increase in laparoscopies , it can be just a few cells left behind even- although the consultants seem to be blind to this. Maybe have a blood test as well after stopping any HRT for a month to see if estrogen still high and FSH low or vice versa. If it is you have ovarian remnant syndrome. I don't know which country your in but you can get a blood test privately just go online. No need for gp referral with some of these. I'm going to get a blood test as well after stopping the hRT to see what its like - the more evidence I have the better. Also if you havnt had your ovaries removed then endo will still be an issue if your ovaries are still there and working. If your on HRT maybe stop it and see if it helps the pain. Good luck if you get chance le t me know how you get on - hugs I know the feeling counting the hours and days with the pain and the depression that comes form it . xxx

[Hidden]

Are you on hrt? That could cause endo to grow

Another thing to look at is Pelvic Floor physiotherapy since what might be causing pain is trapped muscles, nerves, and adhesions from surgery

[caroljane80 in reply to Hidden]

Hi thanks for post Hannah - ive stopped taking the HRT and that seems to help a great deal. NOt sure how much I will get night sweats etc though but they don't seem too bad . I'm getting away with just 1 hrt a week . I get pain after that but it lasts me thoughout the whole week in terms of keeping hot flushes night sweats at bar - I'm on tibolone . I ws ok with this before. Defo will try the pelvic floor strengthening. Does feel so bad like a trapped nerve as nothing works on it. I take tramadol also but that doesn't do anything much ast all been on it 5 years.

[Marcia71]

Hi. Had hyster and ovaries out in feb 2015 due to endo and adenomyosis and in worse pain now

Finally after a long fight I've got a gynae to listen to me and I'm on waiting list for lap for excision of endo and adhesion removal and they will also put barrier gel in to help stop more adhesions growing which is probably some of the pain

Whatever they say endo can grow after hyster with or without ovaries and doesn't need hrt. But if in hrt tibolone or a combined one must be used else you are at greater risk.

Get GP to refer you to bsge specialist as they are only Ones that will believe endo returns after hyster and even they take convincing!!

Good luck. You'll need a lot of strength to get someone to help but you can get there. Take care

[caroljane80]

Just a bit of an update in case it helps anyone in the same position. Hyster 14th oct 2016 with ovary removal cervix removal etc . Bad pain 3 days after ( no pain really after the immediate surgery ). Pain constant really bad but found went away if I didn't take HRT. I found this out like 6 weeks later and was seriously desperate as pain meds not work on it etc and doc said no to anything stronger ( cow but theres another story ). I had been takeing 1 tibolone say once a week usually got pain for a day after but then I could cope with the night sweats about for 5 days before going through it again. Had a shot of zolodex about 3 weeks ago - just in case ovary material was still in there or just to see if it helped. Bear in mind ive had my ovaries removed on 14th oct 2016. Anyway took tibolone today this morning as bad sweats last night hardly slept last night and no pain ??? Wow !!! so when I wears off I'm going to see if the pain comes back and then whilst off the zolodex try to get my hormone levels tested privately ( you can so this in uk I found don't need a doctor ). I wont take my tibolone at all if pain comes back when I take it and see if by some miracle my hormone levels are rising again - maybe ovarian remnant but I'm really not sure. Consultant no use has scheduled next appointment for 6th March 2017 this was after seeing him on 1st Dec 2016 and multiple pleading I was in agony needed help etc etc and I got an angry consultant who blamed me for alledgely pushing him to do the op!!! Nice Keep on keeping on I will update if anything significant. I also wonder if this is just recovery or a trapped nerve who knows!! I'm just trying to get the pain stopped for now. And no bloody help from consultant at all and attitude. Also booked a privet consultation in London with a further bsge surgeon who sounds lik ehe knows what he is talking about - Not mr T . Happy Xmas everyone and hope you all get some relief and answers as quickly as possible. Anyone welcome to pm me if they want to ask me anything privately. All the best carol xxx