I have finally got a date for my surgery; hysterectomy, both ovaries and endometrioma removed, endometriosis removed, possible bowel resection and possible ureteric stent - 15th September. After waiting for 12 months.
My consultant has advised me to stop taking Tibolone pre-surgery and since stopping it I have had an awful headache and increased pain. What side effects have other people noticed since stopping Tibolone?
I had awful hot flushes and bad mood swings. Sometimes it’s about the speed of stopping! It’s no doubt a bit late so it may have helped if they had told you to slowly wean off. So take every other day then every 3 to every 4 etc but appreciate you’re too close to surgery. They may suggest staying off if for a while after surgery and then go back on it.
Thank you for your reply. Yeah I think you are right it would have been better to wean off, I had to abruptly stop as I was only told my surgery date 14 days in advance, so not enough time to wean off. Thankfully my headache has eased but having hot flushes now and reduced appetite. Did you stop Tibolone for surgery? Do they usually put you back on Tibolone or a different HRT? xx
It was a different HRT I was asked to stop for mine - femostan Conti - but I only had 3 days notice so couldn’t and just kept going. To be honest I’d had breaks before and my hot flushes, migraines and mood swings were so awful I didn’t really want to anyway. But now you’re through worst it may be good to have a break after surgery too so as you are absolutely sure not to reactivate any tiny bits of endo left. Tibolone is their usual first try for us endo ladies so if it’s worked for you I expect they’ll put back on after hyster - or ask for it!
Having a break from it certainly flares up the menopausal symptoms but on the Tibolone I have more fatigue, bleeding and endo pain so I might see what alternatives my consultant suggests. How did you find recovery after your hysterectomy? xx
Do try another hrt but just make sure it’s combined as endo sufferers need progesterone even after a hyster to give protection against it coming back. Kliovance is a good first try after tibolone and testosterone or more oestrogen can help tiredness but it’s a balancing game! Once you’ve had op get blood test to measure hormones to,help decisions on hrt.
I found recovery v tough as I’d had endo seen into vaginal vault by gynae that wasn’t endometriosis specialist. So took a while to work that out and have proper care.
Overall it’s the tiredness and remembering you’ve had major surgery. I really couldn’t lift a kettle for first few weeks and slept loads. Try to at least get dressed each day in first weeks and slowly start walking outside. Not far but a short walk. Have lots of help! I took 3 months off work and didn’t drive most of that time.
Thanks for this helpful advice, I really appreciate it. It's so good to chat to people who understand. I will definitely make sure that whichever HRT they prescribe is combined. Sorry to hear you had a difficult recovery hope you are getting better care now? xx
Have you had a hysterectomy and did you keep/not keep your ovaries?
Has anyone had bad side effects on decapeptyl and HRT? 
If you had a hysterectomy and/or oophorectomy- what was the trigger?
What treatments have you had for endometriosis?
