Tiberlone and zoledex: I started hrt... - Endometriosis UK

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Tiberlone and zoledex

Chartolfrey profile image
5 Replies

I started hrt tiberlone 10 days ago same time as my 2nd injection and after i take the hrt with 2 hours ive got major flare ups that last hours then i feel great.Do i stick it out as the pain is awful, ended up in a&e and after tests told its flare ups

Really getting me down as my surgery is 12-18 months away

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Chartolfrey profile image
Chartolfrey
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5 Replies
Neenz1 profile image
Neenz1

Hi,

Sorry to hear you’re feeling this way. I am on the same combo as you and was advised to do so by an endo specialist consultant. He told me my symptoms would be worse for the first couple of months - and they were - but they have settled down now. Persevere with it if you can and hopefully you won’t be waiting too long for your surgery.

Sunset-lady profile image
Sunset-lady

After my second injection I had a flare up which lasted hours. It was the worst I've had in years. I think it's the fact the drug stimulates the ovaries and then the pituitary gland stops working. Zoladex is an implant and it runs out so the next implant has to do some of the work of shutting it all down again. Our ovaries don't want to shut down hence the pain. I think the HRT has little to do with it particularly as it's Tibilone which is an incredibly low form of HRT designed to protect your bones. After the second injection I haven't had the pain again. My issue is the 3 month injection runs out at 10 weeks then I start hemorrhaging and it takes the implant 4 weeks to work ; the anaemia is awful. I have stage 4 endometriosis and a bunch of fibroids x good luck x

AngelaL profile image
AngelaL in reply to Sunset-lady

Hi I would ask for the monthly injections, mine would run out of steam, but managed appointments so I didn’t get any breakthrough bleeding. I had monthly injections for over 2 years waiting for total hysterectomy. I found tibolone wasn’t enough hrt once my body had adjusted and my consultant allowed me to move to kilovance and still not enough so moved to kliofem. I know how tough it is, I walked that road for a long time waiting for surgery. Sending big hugs.

Sunset-lady profile image
Sunset-lady in reply to AngelaL

Thanks x I'm having the 3 month one every 10 weeks. I have to get it administered at the hospital as my local GP don't do it and it's an hour from my place of work so I can't take the time off every month to have it. It's working at the moment - god it's incredible when it works after bleeding for 2 years x. I can't have a hysterectomy as the endo is too severe x

Flewks profile image
Flewks

tibilone set off my pain when I tried it for HRT alongside pro-stap injections within 3 days I had awful endo pain back so I changed to another, only lasted 3 weeks on it made me feel like I had the flu and a flare up. Maybe yours will settle down but it’s whether you can stick through the pain I couldn’t :( and I think when something causes that much pain it’s not just going to go away and work well x

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