Tibolone?! : I started on tibolone last... - Endometriosis UK

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Tibolone?!

1Poppy1234 profile image
7 Replies

I started on tibolone last Thursday started with a migraine weds pm and can't shake it off has anyone else been like this? I get oestrogen fed migraines when my period comes but since being on decapeptyl I haven't had them. Anyone similar? Thank you.

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1Poppy1234
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7 Replies

Hey lovely I was on tibilone but I've been put on patches as they were just passing into my ileostomy, I too had headaches mine did ease thou I think if there really severe see ur GP hunnie

Sunset-lady profile image
Sunset-lady

It will probably settle. Tibilone isn't real HRT it just makes your body use the estrogen that's there by stimulating receptors but this is probably why you have a headache to begin with. X Try to be patient and see if it goes.

1Poppy1234 profile image
1Poppy1234 in reply to Sunset-lady

Thank you for replying I have such awful period related migraines on top of the awful pains with endo and adeno already it's hard to cope. I don't know if my decapeptyl jabs are working as well so I'm unsure where the migraines have come from. 🙈

Sunset-lady profile image
Sunset-lady

I get bad headaches as zoladex wears off and they are awful xxx acupuncture helped x

1Poppy1234 profile image
1Poppy1234 in reply to Sunset-lady

They've put me on decapeptyl jabs for the foreseeable my hysterectomy is another year waiting now labour are in and the waiting times have been altered! Do you get them at set period times I get mine 2)3 before and 2/3 days at the end then I get awful ones where I'm sick and going to the toilet and have to stay in bed. Mine mostly wake me in the night too.

I don't know anyone else that had these and I just don't know what to do about tibolone as it helps with other things. 🙄 Thank you so much for replying and I'm so sorry you are like it too. 🙂

Sunset-lady profile image
Sunset-lady

Migraines and headaches are very, very common in peri menopause which is what thus drug does - puts you in chemical menopause. I used to get then even worse than now - always over my eye and 2 to 3 days prior to period and then at the start of period. I've got one right now - woke up with it today and yesterday as I'm due zoladex next week and I'm bleeding now. They tried to dova hysterectomy but abandoned it as endometriosis was so bad and they didn't know I had it.

1Poppy1234 profile image
1Poppy1234 in reply to Sunset-lady

That's so awful for you it all seems a right job doesn't it. I've had internal ultrasound saw endo and adeno but on MRI I have nothing!! My last two jabs haven't worked as well either I've period labour type pains most of the time. I'm just trying ions therapy.

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