Anyone on it? How long does it take to kick in? Any success stories? Xx
Tibolone: Anyone on it? How long does it... - Endometriosis UK
Tibolone
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I'm on tibolone and I have been for about a year now I had to go on it before having a hysterectomy then I had to continue with it after my op a couple of weeks after starting it i noticed a few side affects not really bad ones but it seems to be helping if you don't mind me asking why are you on tibolone I mean what's the reason for you being on it xx
Hi,Just woke no surprise st the moment! Thanks for replying.
4 years ago they during surgery (open surgery as couldnt get enough air in to do by keyhole) to remove what they thought was an ovarian cyst causing huge amounts of pain, they found I had stage 4 endo, frozen pelvis and the ovarian cyst was also stuck to my bowel. They couldn't do anything as that bad for this hospital. I then had 6months of zoladex and then they tired the coil both helped.. fast towards to now and after being referereed to a specialist women's hospital last year I've had surgery 2.5 weeks ago. I had hysterectomy, plus removal of both ovaries and fallopian tubes, all endo and the huge cyst.. in surgery 6.5 hours but they did keyhole! 7 incisions!. Started on tibolone on Wednesday, 2 weeks post op.
Sorry just ranted full history to you!!!! I'm so tired, achy, swollen, emotional, the works at.the moment and just want to.sit and eat junk! Hence need tibolone to kick in..
Thank you for bearing with me xx
Bless you i had a hysterectomy last year in July and I was in surgery for five hours and it was only key hole as well I was really poorly after my op i had three infections I was on morphine for two months i think about 4 months after my op I kept getting hot flushes but apart from that nothing else I was constantly tired still am lol I have to take tibolone because my specialist said I'm too young to go through the change so I'm on it for eight years 😕 I still have a lot of problems due to endometriosis even though I have had a full hysterectomy I still have it in places which I'm not sure what can be done about it I hope you feel better soon 💓xx
Wow.. you've been through the mill. Glad you're feeling bit better now. That's why they've put me on it because of my age, I'm 45. They said if 50 may be different but also as I've got rheumatoid arthristis they don't want me to have the menopause just yet. Has it grown back then with you? Guess they took your ovaries? Wasn't sure if could grow back if had literally everything taken out? This is one of my questions when see my surgeon again in June. Xx
It's on my bowels and my bladder but my specialist said it has been there for a long time but he didn't know I had endo there until he done my hysterectomy but since my op i have had a lot more problems with my bowels and bladder it's awful and also I got diagnosed with fibro myalgia a few months ago so I never know when I'm in pain whether it's the endo or the fibro that is causing it 😡 xx
Thank you I'm on tramadol at the moment which kind of takes the edge off the pain and yes it can come back it feeds off your hormones even though you don't have your ovaries you are on hormone treatment and the endo will feed off that I was so shocked l when my specialist told me all this after my hysterectomy I thought once I had the hysterectomy it would be gone for good i don't even see my specialist anymore because he said there is nothing he can do for me he said I just have to live with it 😯 xx
I asked about further treatment but my specialist said where the endo is on my bladder it's too risky to remove the endo and he said he's not sure what else he can do for me 😞 I don't know what else to do about it I hope you feel better soon my lovely make sure you get plenty of rest xx
Hi sorry now it's my turn to apologise for replying to you so late it's been a hectic day 😰I still get hot flushes in fact I had one today when I was in the supermarket i was ok one minute and the next i just felt all hot and flustered I had to sit down for a few minutes I found after my op i had a lot of hot flushes but after a couple of months they calmed down i hope you are ok and getting lots of rest if you try to do too much so soon after having your op you will find it leaves you feeling so drained I couldn't do anything because it just wore me out after a few minutes I spent most of my time in bed either watching Netflix or sleeping lol 💖