Zoladex and headaches: Hello. I’ve been... - Endometriosis UK

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Zoladex and headaches

Suds1980 profile image
4 Replies

Hello. I’ve been getting monthly injections of zoladex (I’ve just had my third today), for suspected adenomyosis and endometriosis. I’m also taking livial to counteract any menopause symptoms. Two weeks after the first dose I had a migraine type headache which has lasted over 6 weeks, with varying degrees of pain. I just wanted to know if anyone else has had this experience? I was prescribed amitriptyline which didn’t make a difference, and now I’ve been given beta blockers to try. I haven’t taken them yet, but I’m interested in hearing anyone’s experiences on taking these for migraine prevention?

I have suffered with aura migraines for years and take Sumatriptan when the attacks happen, but I’ve never had propranolol before and a bit anxious to start a new medicine!

I’m scheduled for an abdominal hysterectomy in the new year, and having a six month course of zoladex before this.

Thanks so much for reading!

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Suds1980
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4 Replies
ChicaPixie profile image
ChicaPixie

Hi lovely, so very sorry you're going through this. I've had 6 months of Zoladex but with me they used tibolone to combat any menopausal symptoms.

I've had various side effects sadly but headaches were one of them. Though they lasted on and off two months and then I was fine. It always happened just before I was due for another dose of Zoladex for some reason.

I've never been prescribed any meds for headache or migraine so I wish I could help with that.

With me to this day I'm not sure if it was Zoladex or tibolone causing the headaches. Though I would say with Zoladex related symptoms it would usually be two weeks after the injection that my body would start with certain symptoms like rash etc.

Are you able to see your specialist to discuss this? Only after my course of these and my hysterectomy I was told by another specialist that it could have been the tibolone also and at the time it would have been good to try something else. I'm not sure if livial in your case could also be the culprit too?

I truly hope you will get it to calm down, sending lots of strength your way xx

Suds1980 profile image
Suds1980 in reply toChicaPixie

Hi ChicaPixie, thanks so much for your response! I really appreciate you sharing your experience with me. I had discussed the possibility with my GP of the headaches being a side effect of the livial (I think perhaps this is the brand name for tibolone?) and she agrees it’s a possibility. It makes sense actually, as I find I start to get cramping/bloating and the usual adeno/endo symptoms in the days before I’m due my next injection! The one thing that has been consistent is the headache, so maybe that isn’t necessarily the zoladex causing it?

Do you mind me asking if your hysterectomy has helped you? I really hope so! Thanks again xx

ChicaPixie profile image
ChicaPixie in reply toSuds1980

No problem at all, I found so much help on this forum that I am more than happy to share my journey if it can help.

Wow I never realised livial is the same as tibolone. I just looked it up and it appears so.

It is just so confusing isn't it, when I was on Zoladex the 6 months on it were a nightmare I know every one on here experienced it differently as we're all so different. But it was hard for me. I hope your journey is going to calm down. A lot of the initial symptoms like the rash and few others calmed down for me in the 3rd month. I think it takes time for your body to adjust to the change.

I've had my hysterectomy 10 weeks ago and in really hope it helps. I think it's probably too soon to tell. But unfortunately with my previous lap and this op they could not remove my rectovaginal endo meaning it might still cause trouble. Just not sure to what extent. Plus the specialist who performed this op was not very helpful in explaining what they found apart from it was really complicated statement..

I've just changed my specialist to one that is recommended on the BSGE register and he was the one who actually said it might have been the tibolone that caused some of my symptoms. So he wants me to try tibolone as a form of hrt to see if I can continue with it. Though if it causes any of the previous symptoms I experienced with Zoladex he will move me on to something else. I should know soon.

Do you mind my asking if you are going to have a full hysterectomy and ovaries out too?

I truly hope you will get through this part of your treatment and you will notice some improvement. One thing I have to say that while it was very difficult it seemed to have helped me with some of the pain I was in before.

Keeping everything crossed for you lovely xx

Suds1980 profile image
Suds1980 in reply toChicaPixie

Aw it sounds like you’ve had a tough journey! I really hope the hysterectomy will help you and you won’t have any further issues as they couldn’t remove all the endo. Keeping everything crossed for you that you’re pain free and the tibolone works for you.

You’re right, this seems like such a fantastic place for support and advice. Sometimes it can feel so lonely dealing with pain when you think you’re the only one! I am getting a hysterectomy with removal of my ovaries as my consultant believes I have bad ovarian function - I suffer really badly during ovulation as well as my periods with pain, bloating, migraines etc so she’s advised it’s the best way to go. I have my review appointment in November, so will be asking all the questions and hope it all goes according to plan!

Thanks again for being so helpful xx

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