length of zoladex and tobelone- side effects felt?

[Homelove]

I have been having zoladex injections since November once a month. They advised HRT in Jan due to me experiencing headaches/hot flushes and brain fog (which at the time was the worst) . Since then the mood changes have been a lot to deal with feeling unhappy and down. My sleep pattern is interrupted which means I’m tired a lot. But more recently Iv been really struggling with feeling low/ over worrying , so anxious that I wake up nervous and with a feeling of absolute dread. I’m fearful and without proper reason. It has made me feel very alone as I don’t want to discuss it with others who perhaps don’t understand? Or think it sounds like nothing. But when you don’t feel yourself is extremely hard. My brain fog is a lot which makes me forgetful / confused which leads to feeling overwhelmed. I don’t know if this is the zoladex or the HRT. They have prescribed me 9 months of treatment. Just wanted to see if this was just me.

nothing has changed in my life for the feelings that I’m experiencing.

thanks

[ChicaPixie]

Hello lovely, I'm very new to this forum but your description of symptoms sounds very similar to mine. I'm on a 3rd month of Zoladex and tibolone and literally my mood is like a rollercoaster. I'm a passionate crocheter and do it as a side business yet in the last 3 months I felt so low and up and down with so much sadness and kind of depressed that I barely touched my crochet hook. Something I would do to relax too. I wake up wanting to cry for no reason and then I'm ok. It really is scary that this treatment can make such an impact.I'm not sure if it's Zoladex or tibolone as I've been taking them both from the beginning but would love to know. I've experienced a lot of joint pains and unexplained stabbing pains in places. It's actually been worse than when my endo would flare up.

I am so very sorry that you're going through it too. Just know you're not alone in this. I really don't recognise myself these days mentally. I do hope that you will find ways to cope with your symptoms though, I'm trying myself.

[Homelove in reply to ChicaPixie]

Thank you so much for replying. It’s such a worrying time as although they say some side effects I thought more hot flushes etc…

I’m very achey too like I’m waiting to get the flu if that makes sense. I am prescribed 9 months however I think I will discuss the intense reaction I’m having with the consultant Incase there is anything they can do to ease it?

Hope your journey gets easier - thank you again for the reply. Its reassuring to know it’s not just me

X

[ChicaPixie in reply to Homelove]

Thank you so much lovely, yes I definitely agree. I think so many side effects can be so individual based and it's scary when they happen. I've had a similar feeling like flu. That seems to have calmed down a bit. I also get pins and needles. My Zoladex is only for 6 months and I'm half way there almost. I'm due to have a hysterectomy after that so I hope I can continue.

I would definitely encourage you to speak with your consultant and I would be interested to read whether there is something they can recommend to ease these symptoms.

I see lots of other replies too and so much great info it's definitely nice to have such a forum. I'm very new to all this so still learning.

I really hope your journey will improve and maybe there will be something that consultant recommends. I'll keep everything crossed for you and sending strength your way lovely xx

[Qanngoth]

You are certainly not alone. I'm on Prostab, similar to zoladex, and was described Tobelone with it. I've been on Prostab since August 2022. I too have suffered with hot flushes, brain fog and other menopausal symptoms. The brain fog is definitely the worst for me, and my anxiety has been worse too.

I don't tend to get on with synthetic hormones. I did not get on well with the tobelone as it affected my mental health. I was without any HRT for a year, but have now been put on patches. So far they've not made much of a difference, but my gynecologist and GP have insisted I need them because of bone density.

The GP has also put me on antidepressants to help with my anxiety. This has helped with the brain fog too.

I'm hopeful that I will have my excision surgery in the next 12 months, but I still need to see a bowel surgeon first.

Take care of yourself and go back toe GP for more support if need be. Or contact your endon clinic and speak to a specialist nurse, if they have one.

[Shellbell2023]

Sorry to hear that you are struggling like this! When I read your post it was like I had written it, this is exactly how I have felt, I have been switched from tibolone to Evorel Conti patches ( only as of last week), but I do feel slightly better, I am still struggling with brain fog and insomnia, but the headaches have started to subside, might be worth chatting to your GP/ consultant about a change in HRT?

[Sunset-lady]

Morning, zoladex and prostrap both put the body into chemical menopause. Without estrogen and progesterone we do have hot flushes, anxiety and memory loss and around 34 other symptoms of menopause. Everyone is different which is why symptoms vary so much. Some women have paranoia, anxiety and tinnitus whilst others have a rash, a burning mouth and joint pain. Its a highly individual experience. Tibilone is a VERY low synthetic form of HRT. You wouldn't be given it as normal HRT. You've been given it because of bone mass reduction which happens if you don't have estrogen and progesterone in your body over a period of time. Many women on this drug have regular scans to check bone mass, and this should be offered to you.

You don't have to have Tibolone- many women have bio identical progesterone and estrogen gel whilst on this treatment (like me) but then you need to manage the dose as it can make you bleed still particularly, if like me, you were put on it for bleeding and stage 4 endo. With proper HRT you'll experience much less side effects; it's a completely different drug with addback HRT. If you are on it for fibroids and adenomyosis then your consultant will want to limit estrogen as it feeds these conditions and you can support this through your diet.You should take magnesium glycinate and vitamin E, C and Bs to try to feel better. If you can exercise that will help. I hope that's helped. Many women are on zoladex or prostrap while waiting for surgery so it's not long. I can't have surgery as my endo is too well established so zoladex will hopefully take me into menopause. Good luck x

[Sparkles2000]

I just wanted to say it’s ok to have these feelings when you are going through so much. I’m going through the same. I understand how scary the feeling is of complete dread. It’s probably the worst of all of my symptoms. I would also remember the triggers for anxiety and these feelings can be linked to a lack of sleep.. also a major trigger for me is caffeine and alcohol. You can take supplements as your vitamin intake can help. It’s like finding a new coping mechanism until you can feel ok. Also if you suddenly panic immediately distract yourself even if you have to pick up an iPad and watch something calm. Herbal teas can also help. Going for a slow walk once you are past any adrenaline shakes is good to. Please keep talking about it to your family to and friends they can help. Just remember you are a strong person and everything is going to be ok. Your body is going through a lot.