Hi everyone,
Quick question but has anyone found tibolone makes their endo worse? I did one month of prostap with no tibolone and after the initial two week awfulness I was actually pain free for the first time in years!
Fast forward to second injection and nearly a week of tibolone and my pain is back to pre injection levels. Really bad in rectum, back and leg. I’ve left another message for that endo specialist nurse but I have no faith in her getting back to me.
Thanks in advance x
Hi Medicalmenopause that's not something I experienced when taking this treatment with this specific medication, but it may be that some of our Endo Warriors have, I am interested to see
It’s so hard to know what to do and what to take. 😕
I know! It can be a mine field but we make our decisions based on the information we have, which is why this forum is so important, I wish I would of been aware of it so much sooner.
Hi, it might be more to do with your body getting used to the prostrap. I believe that there are equal amounts of progesterone and estrogen in tibolone and a bit of testosterone. It's always kept my pain away thankfully. I had it when I was taking zoladex and I'm on it every day since my hysterectomy. Hope that helps xx
I was wondering about this too. I just presumed by my second injection things would have settled down. But perhaps not. I didn’t take the tibolone yesterday just in case it was that. 🥴 Not sure whether to start it up again today.
I would consider sticking with it if you're only a month in. It takes time for your body to get used to these things. Best of luck x
thank you for taking the time to answer. I really appreciate x
Pleasure x
ooh just dead quick, technically my period should be starting Monday also but not sure if I’m going to bleed or not because it’s second month on the injection?? Maybe this pain is just my body thinking it’s going to have a period but it’s not. Could that be a Thing also? X
Is it the same as zoladex? If it is I did still get my period the first (and possibly second) months and had all my usual endo pain but it kicks in more quickly for some people. Your cycle might explain why you're experiencing pain at the moment. I think that's more likely than the tibolone. X
I’m at the point now where I’m sick of it all 😵💫🙈 Is it too much to ask that I just want a normal life with zero pain now? 😂 Again, thank you for your help. I so really appreciate it xx I’ll see if the period arrives
I know, I get that completely. Its very cruel feeling like your own body is torturing you. You will feel better after this month though. Hang in there x
tibolone has estrogenic properties too
I did think this, and whether it’s enough to trigger inflammation again. But when I read about it, it’s meant to have a small amount of oestrogen that’s why they prescribe it for Endo. I don’t know what to do anymore to be honest. 🤷🏻♀️🥴 I didn’t actually have any menopausal symptoms my first month on prostap so should I just continue without HRT? I feel so let down by the medical team who are meant to be “looking after” me. No one explains anything or gets back to me. Hence I’m on forums trying to get answers but becoming more confused by the day.
I stopped my prostap and tibilone after 4 months because like you first 2 were great and pain free but after that it just became worse.
😕 I’ve hopefully only got one more injection to get through and then my hysterectomy and bowel separation. 🙏🏼 Can’t come quick enough quite frankly. Sick of being messed with x
Ooh good luck! I've been trying to get them to separate my bowel and uterus for awhile now but they seem reluctant.
i was prescribed this with prostap injections
Ive had to decide not to take it because of side effects
I have been on decapeptyl and tibolone for 6 months now. It took me a good 2 months to settle and reduced pain. I have never been pain free but it has made my life so much better. I have had the odd days where pain felt worse but I read somewhere it could be scar tissue which is still affecting certain areas. My consultant yesterday said it can be normal for it to take 6-8 weeks to see a difference after starting. Everyone is different. Xx
thank you for sharing that. I massively appreciate it. Perhaps I’ve been expecting too much, too soon. It’s a character flaw of mine 😂😉 Looks like a weekend of painkillers and heat bag ahead xx
honestly I was so upset after my second injection and then having the same amount of pain. It was my husband who actually noticed a difference in me before myself 😂.
Hi! I was on Gonapeptyl from July to October, stopped in Oct. The pain did settle down to around a 5 max, but honestly the other side effects were just not worth it. I've never found anything makes the pain go away 100%, so it's really been about balancing what works best for me without expecting too much. If you're searching for 100% pain relief you may be a tad disappointed! That's my experience anyway. I persisted for the 6 months but couldn't cope with the zero sex drive, depression, concentration problems etc. I also was very concerned about issues long term, for example bone thinning and dementia risk. So for me the limited reduction in pain wasn't worth the additional risks. Thats me though, and I have to stress we are all very different! But for me I have decided that more surgery and more hormomes is not for me currently, and I'm going to just monitor my health and do what I can to reduce pain for now. Better than yet more surgery and more hormones messing me around lol.
I hear you 😕 There’s a bloody downside to everything I’m finding. I resisted these prostap injections for ages but my consultant is refusing to do my hysterectomy without 3 rounds in it so…I feel stuck 🤷🏻♀️ xx I hope you find something that works my love
I’m in the same position.
I took prostap 3 years ago for 3 months and it was awful I was still cycling just without bleeding (so monthly pain) and the other side affects of it were hideous. Now they will not consider surgery without being on it for 6 months. Gyne told me I needed a radical hysterectomy with bowel resection so will need to be on HRT from starting prostap until past menopause I’m 37 and have been informed not everyone tolerates HRT well either!
How are we to make informed decision about our heath when our options are shit and shittier!
We’re not living we’re existing and it’s not right
Hi, am literally 1 month or so in to the prostap and Tibolone. The first 2/3 weeks I was in so much pain, joints, muscle weakness etc which settled down was starting to feel amazing and then I got to when I should have a period and the pain started and had spotting but couple days later that seems to have settled.
I would maybe keep going but keep talking and trying to get someone to call you back.
Sending big hugs x
thank you for replying! It’s a bloody roller coaster isn’t it?! 😵💫 I’m hoping that my period doesn’t arrive as normal on Monday and everything quietens down again. 🙏🏼 Here’s hoping we’re both ok x x
I would research prostap more, and you may discover it’s not the add back that’s the issue. Prostap is also Lupron.
You can also change to another brand and assess this too.
I’ve had my hysterectomy now, best decision I made even with the impact. But I can tell you that personally, I would never touch prostap/lupron even more so without add back.
Please research this drug especially on legal sites.
Synarel is by far much safer, but also easier to end. Sadly too many doctors will not prescribe this due to cost. It is I believe $200/$2000 in the US.. and NHS doctors prefer to use the pharma pushed cost effective drug.
I recommend the endometriosis book by Dr Cook.
If I could help every person with endometriosis to be symptom free I would, but all I can do is warn them of the dangers and avoid the damage or after affects of certain drugs.
I hope you are treated soon! It breaks my heart that we all suffer so much and so long, this disease just keeps increasing in affected people!
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