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Menopause

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Has anyone tried Tibolone?

9 replies

Angbunnyboo · 05/10/2020 17:01

I'm going through the menopause and have a long history of endometriosis and adenomysois, as well as a long and complex surgical history in the area.

Even though my periods have stopped, I'm still getting the same pains associated with endo and adeno and my gynaecologist thinks the HRT could be causing this.

I'm quite happy with my HRT as apart from the pain it has eliminated my meno symptoms and given me my life back, but the gynaecologist wants me to change to something called Tibolone which I have never heard of.

I'm currently on Oestrogel, Utrogeston and testosterone gel, alongside Vagifem, and the Tibolone is supposed to mimic all of them.

I'm not sure whether to agree to the change or just put up with the pain. The pain has been happening for 20+ years so its a part of my life and most of the time is manageable. They are doing scans and tests to make sure nothing serious is going on so thats all fine, I just don't know whether to change. If I change can I change back?

TIA for any responses.

OP posts:
JinglingHellsBells · 05/10/2020 17:24

Have you asked him/her why they suggest this change?

They really do need to explain and discuss with you the pros and cons.

There is a lot online about Tibolone- have a read. It's bleed-free and also totally synthetic- it IS HRT but chemically it's a type of steroid.

Are you having cycles with your HRT or using a no-bleed sort?

If you are bleeding is the idea of Tibolone to make it no-bleed? You can do that with gel/utrogestan.

Angbunnyboo · 05/10/2020 18:19

Thanks for replying Jingling!

They are just suggesting the change to try and limit/eliminate the pain.
He just wrote to my GP and said that we should give it a try. I am seeing him on 22nd Oct for my scans and tests so I will discuss it with him then.
Can I refuse to change, I really am happy with my current HRT and as I said it's been life changing.

I'm having cycles but only a very occasional bleed, and it's not troublesome.

I'm really not sure I want to go on a steroid, I don't want any weight gain and it seems like too much "medication" rather than just hormones.

OP posts:
IdblowJonSnow · 05/10/2020 18:23

Yes of course you can say. It's your body.
I've never heard of it but would also want to avoid steroids.

Angbunnyboo · 05/10/2020 18:28

Jingling thanks for suggesting I read up on it.

I can see why he might suggest it as I am having painful intercourse and having a very itchy vagina/ a lot of dryness so it seems useful for atrophy.

It's not available in the US and Canada as its an anabolic steroid and the side effects are similar to the normal HRT, I've not got those so I don't want to jeapordise this by changing.

I'm so annoyed about it all. I'm only 41 and didn't think Id be having to think about vaginal atrophy for years yet!

I think I just want to know that its ok to say to my gynaecologist that I don't want to change - I know he's doing it to try and help me, but I think I'd rather put up with the pain that risk potential side effects and have to go through finding the best meds/dose again.

OP posts:
Angbunnyboo · 05/10/2020 18:30

Sorry, cross post!

I was hoping it would be you who reply'd as you seem to be a guru on this subject.

I'm going to tell him no. I'd rather some pain than risk upsetting my hormones and my mental health.

Thanks again - you rock!

OP posts:
Angbunnyboo · 05/10/2020 18:32

Jon Snow - thank you for responding, I'm not keen on the steroid idea, and the fact its not licensed in the US and Canada.

I'm going to be a big girl and say no!

OP posts:
DesignerDesigner · 05/10/2020 19:24

It's not a steroid in the way you think it is- not like the steroids that are for other things.

That's the correct term for it.

(Tibolone (TIB) is a synthetic steroid with estrogenic, androgenic, and progestogenic actions that can be used as HRT. Unlike estrogen, TIB has no estrogenic activity in endometrial and breast tissues but has effects in counteracting perimenopause symptoms^

I thought your dr had suggested it to stop any pain you were having with bleeding.

If you aren't, doesn't seem any point changing. Just say you are happy with what you use now.

JinglingHellsBells · 05/10/2020 19:26

No need to change if you like what you have.

Your body!

Liamandlee · 05/10/2020 19:57

Hi I was put on tibolone as an add in (?) when I was having injections to induce menopause, I had to come off them after only a few days they did not agree with me. I felt lightheaded and disoriented after taking them. That is just my experience though other people have been on it and had no issues.

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