Zoladex and Tibolone: Hi, I’ve had endo for... - Endometriosis UK

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Zoladex and Tibolone

Dahlia_D profile image
7 Replies

Hi, I’ve had endo for 20 years plus, had 2 ops was treated using Mirena but that doesn’t seem to work anymore so and am about to have my first Zoladex injection combined with taking Tibolone. I’m pretty nervous about it after reading others experiences. Any reassuring advice welcome.

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Dahlia_D
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ccsmith profile image
ccsmith

I got myself in a right state when I started zoladex. I read all the pros & cons and also all the comments on here. Sadly you mainly hear negative comments rather than positive. I will say it’s not a drug that doesn’t come with its side effects and my gp was clear when I went to speak to him. “We’re putting you in the menopause in a month rather than several years - therefore you will have all the symptoms of menopause suddenly”.

I’ve had 11 injections now and my pain has dramatically reduced. I do get some pain most days but very manageable (most my endo is on my bowel). It took about 3 months for period to stop and pain to ease. I still get extreme fatigue and days when I want to curl up BUT I do feel better.

I did try it for 2 months without HRT and hated it. Once consultant put me on tibolone I can say my hot flushes are just an irritation rather than horrid. I do have changes to my skin, hair a little thinner but nothing major. Sadly I do think I still have hormonal surges as I get mood swings & heaviness like I’m coming on.

I’ve chosen to stay on it until I have my hysterectomy as I do not want to go back to where I was before.

Good luck and best wishes

Dahlia_D profile image
Dahlia_D in reply to ccsmith

Thank you, I think my menopause was starting anyway as I already have the bad skin/hair, anxiety, moods and generally feeling crap. I’m 50 and have suffered with endo since I was 24 :-(

Good luck with your hysterectomy

Moonglo profile image
Moonglo

Zoladex/tibolone saved me. From day one it provided me with relief from periods, pain and fatigue. I did get hot flushes at the start, and I have to have regular bone density scans, but I’d rather have that. Just keep an eye on your symptoms- small things like hot flushes and mood swings are ok while your body adjusts. However, if anything feels extreme or worries you then go back to your doctor. Good luck!

Dahlia_D profile image
Dahlia_D in reply to Moonglo

Thank you that’s very positive.

Jac99 profile image
Jac99

Hi well as I’m sure you’ve already read my bio or comments & you do sound very similar to me In symptoms! I had my last zoladex injection yesterday I can honestly say other than the usual side effects of zoladex hot sweats mood swings etc I have been absolutely fine, I had my last period around Beginning of July & iv had NO OVARIAN PAIN AT ALL since then I have had a slight reaction to it & have developed a really itchy hive rash on my neck & arms but they’re hoping that will go once iv finished this final injection! It certainly seems to have done its job with me. In my experience I would really consider trying it, if it’s not for you you’ll know soon enough. I wish you lots of luck & hope you get the result you want

Jacqui x

Dahlia_D profile image
Dahlia_D in reply to Jac99

Thank you x

Clairabelle73 profile image
Clairabelle73

Hi I’m on my third injection of zoladex 1st one I felt brilliant 2nd pains came back but not as severe after my third they are back 😥 you need the TiVo lone as hrt as you will have menopause symptoms but I haven’t had any really hope all goes well

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