pain responding to HRT after hysterectomy with removal of ovaries tubes and cervix

[caroljane80]

Hi all can anyone offer any advice or help. I'm 8 weeks post hysterectomy as above. I was on zoladex for 2 years was going ok but they wanted to withdraw the injections following a lap that showed no endo??? The hysterectomy puts me in the same situation as the injections regarding bones / osteoporosis risks as I'm 43 . I wish id fought my corner and said what is the point if it has the same risks?? I suspect it was cost cutting. I have had really bad pain in one side ( pretty much where it usually is ) since 2 days after the surgery. It responds and gets really bad when I take my HRT ive tested this about 50 times and its always the same. I struggle if I don't take it from horrific night sweats and very little sleep / anxiety etc but its better than the pain ive decided for now. I'm thinking its bowel endo or something as no one seems to check for this and its higher up than ovaries slightly. My last appointment with consultant after waiting a further 3 weeks was him being aggressive and blaming me for having the hysterectomy - apparently I begged him to remove my ovaries in my 4 page letter !! I said I just want to find and deal with the pain !!! Does anyone know or been successful at having bowel endo diagnosed what scans are good . Ive not had any gastro examination in any of this and I'm 10 years down the line 4 laps 4 ops to remove endo / remove cyst etc etc .

[Marcia71]

Hi there, sorry to hear your suffering.

Whilst I've not so far been diagnosed with bowel endo I have had a hysterectomy and ovaries out and am still in pain. Unfortunately hyster is not a recognised treatment for endo. You need to get referred to a BSGE centre, your GP can do this if you find one you want to go to: bsge.org.uk/

I had endo in pouch of Douglas when i had hyster, and at lap after, and also on bladder and uretha. The lap I had was only ablation and done by general gynae, so I'm now on list for excision by BSGE surgeon to hopefully rid me of pain. (I didn't know about BSGE before my other ops, which was before I found this forum!!)

As to HRT you need to be on a combined one (both progesterone and oestrogen ) as endo ladies we need this. If you are on only oestrogen there is a higher likelihood of endo regrowing. It can even on combined, but less likely - well according to menopause clinic! Which mine is run by the same surgeon as the endo clinic at the BSGE centre.

I agree HRT is needed to cope with menopause as I had awful sweats at night and during the day before HRT. I'm on Kliovance as a tablet which I prefer, but Evorel Conti are patches if that's your preference. Tibolone is ok too.

Best of luck and keep fighting!

[caroljane80 in reply to Marcia71]

Hi Marcia thanks for responding - the difficulty is that I am supposedly at a bsge endo centre and I have also been taking tibolone which was fine for me while on the zolodex but it hurts now when I take it post hysterectomy . I continues straight through on the zolodex which should have been working uts way out of my system after 1 month from 28th sept 2016. My pain started post hysterectomy 3 days after in fact. Went away a bit after having antibiotics and diarreah . There it stayed very painful whenever I took the tibolone - th pain seems to stop if I don't take anything. I'm going to give it a month then try agan as per consultant advised - but it is strange I know and doesn't make sense. I tried an old combination pill one day just to see what happened and it was the same.

[Marcia71 in reply to caroljane80]

It does all sound very odd.

Maybe it's just healing from hyster?? Check out hysterectomy association website if you haven't already as loads of useful info there.

Maybe just give it the month as you say and see.

It really is rubbish when you have such radical surgery and are then in pain!

Hope you do get some relief soon.

[caroljane80]

I'm beginning to think this is ovarian remnant syndrome as I'm not getting the night sweats hot flushes and I havnt taken hrt for 2 weeks - either that iv got 3 ovaries and one is lurking somewhere ( joke ). very very strange and I usually get very very bad night sweats when I'm on zolodez or anything like that - I have supposedly had both my ovaries removed. I will keep you all posted . Hugs to everyone suffering with endo and gyne issues xx

[caroljane80]

I'm not sure where to put this update but I'm happily pain free now. I don't know and the docs don't know what was causing it I even had an MRI. But just in case anyone is influenced by what happened to me I did get better . I even came off the tramadol I had been on for 7 years ( that was hell and another story for another time) but I'm ok back at work . I'm only talk half a tablet of hrt at the moment but it's sufficient to make me feel like a woman and no night sweats etc. Good luck with your endo issues ladies and I wish you all freedom from this terrible disease god bless xxxx

[caroljane80]

Hi all I'm just updating my last post questions as it may help someone. I went private and they found ashesions on right and endo missed on my bladder behind it. This was after having a hysterectomy in oct 2016 with ovary and tube and cervix remove. My nhs gyne didn't want to know did nothing and was bloody rude. 7 months off work! Loads of hassle , finally decided someone needed to look again and nhs ( in uk ) wouldn't , put blame on me., obstructive and all sorts. It seemed to get worse when I took my hrt and I needed my hrt as 43. So pls fight if need be get a good private surgeon who knows about endo on other organs. This guy is a bowel surgeon that did it but he is experienced in endo snd not as expensive as some surgeons mentioning no names who are world leaders in it. I will update about if it's helped as I'm only 2 days post surgery . Hysterectomy is not a cure If endo on other organs and excision is the best way to remove it. And a surgeon who cares to find it. I was told initial I had no endo after a lap! The MRI and ultrasound didn't show it either and I had to endure all kinds of mistreatment from s gp who kept telling me nothing is wrong and decided to take away my pain meds too. Needless to say I'm now taking legal advice about this treatment from surgeon and gp . Stick to your guns you know if your in pain and you need an expert ! 😉

[caroljane80]

Just to update on my progress in case it helps anyone here. It seems my pain is caused by bowel issues since the hystorectomy. I saw consultant last week who did the further surgery ( which was missed by our state health care provicer and remobed endometriosis to back of bladder ( i may have put bowel by accident ) and some bad adhesions where my small intestines joins my large intestine. he showed me the pictures together with what he called rocks in my lare/small intestines in this area. The adhesions were about in the similar place but the rocks were inside. Now these rocks are faeces .We agreed his is likley to be cause of pain and i described how it is like th ewaste gets to a certain point and struggles and causes pain ( this is despite taking stool softner and minimising pain meds opiates and i take tiny amounts of codeine now if any at all ) . I explained this problem has happened since my hystorectomy. The only thing that helps is a bowel cleanse. Im talking the one you drink and you get waterey diareahha not an enema . The pain then goes but when the stools start to return to normal and the pain returns. The pain isnt when i open my bowels its more as it moves through ( at night usually which is bad as it hurts and stops me sleeping ). Im going back to him next week to discuss having a look inside with a ( i beleiv ethere is a camera that can do it - this isnt an endoscopy or colonoscopy as it has to go right into the small intestine - i think there is one you swallow like a pill camera in some hospitals ) it is lik ether eis something that gets in the way whether this is inside or just from movement and displacement in the hystorectomy ( the bowel does change position after hysterectomy with both ovary and tube and cervix removed - vaginal laparoscopic hystorectomy ) I dont know. BUt it seems we are on the right track. It may also me that the removal/ sectioning of the adhesions in this area is aggravated by a bowel movement so we shall see. I just thought id post as it may help someone. I was completely blanked by the government health care provider over this i had thi sis not gyne and the general surgery guy said not my department i visited several times got nothing no pain relieif no tests nothing for 7 months so im taking legal action now and solicitor says i have a good case. Also my gp at the time wouldnt listen and was more fixated on getting me of tramadol ( but happy for me to take codeine which is probably just as bad or worse for bowels as makes hard ??? go figure ??? ) she felt the pain was because was a drug addict !! again no further tests abuse and no help. I went into meltdown over it. That and my shitty boss messing about with sickness targets. Ive never felt to stigmatised and alone. But im rising from the ashes sword in hand to take on the people who have been negligent and trie dto put tis all back on my. I gave up morphine and tramadol on this journey and benzodiazapines ( i had became so stressed i ended up taking them ) and it was hell . But the pain has nothing to do with these medications. I do know opiates can slow the bowel but it seems for me it doesnt feel happy even when the stool is normal and soft even. I remember when i had antibiotics early on after the hyster and it went away . It seem its only pain free when i have bad water diarrhea and this has been my pain. Just be strong beleive your body dont let medics say its all in your mind or muddy the issue because youve been taking pain meds ligitmately for the pain. Good luck and anyone welcome to pm me for info and help if they wish. I have known better than several surgeons and gps on this one its terrible and im going to seek recompense for this. Hugs to all.

ps it appears im ok to take my tiblone now the pain is from the movement and/or something wrong so i seem ok with my synthetic hrt tibolone ( which i think is synthetic not estrogen/ progesterone but similar ) i was just confused as it was daily pain at teatime/ night for 8/10 hours.