Quick summary tried everything available been on zoledax for 6 months now, specialist has advised to continue and will be having another appointment to get surgery booked in for next year and discuss any new option including trials via nhs.
Anyone who has read or gone through menopause knows the symptoms etc, however how do you manage those symptoms... being on zoledax has
1 improved quality of life in the long run by reducing the pain level dramatically I'm no longer bed bound 3/4 of the year
2 I'm no longer in daily pain where I have to deal with taking pain killers daily just to get simple tasks done.
3 reduced flare ups to 1x a month at a maximum lvl.
However side effects have started to get to me... hot flushes I can deal with, what I'm struggling with is the constant confusion and brain fog...
I am on the add back HRT but are there any other things you have done that seems to help. I know everyone is different but I'm really struggling recently. I'm loosing track of time, days, basic things, important information, etc...
Any advice is welcome.
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Chronic21
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Maybe consider having a Mirena Coil as this has progesterone on it. Everyone’s case if different, it’s suited me over 18 years and insertion is literally 5 mins of pain. 💯 worth it for me.
I have to use strategies for confusion and brain fog by making my own accommodations. Lists, reminders on my phone and recognising my challenges and adjusting as I need to cope. Just organising my life a bit more. I haven’t found a magical thing to fix it. Often with Endo it’s a trade off and it’s crap, so annoying.
Sadly in my case is more complex now and I have Carers in twice a day. And another 2 chronic illnesses 😜 I mean fml I thought Endo was horrific and it is. But with the other 2 chronic illnesses 😅😂🤣😂🤣
It’s so bad I’m laughing because no more tears left now. My dog helps loads 🐶
The coils don't work for me as I have other issues that mean they don't stay in the correct placement.
On top of that it's not just 5 min of pain for me. I have smears under ga because the 5 min of pain for a speculum not even open was too much I threw up, and ended up on fentanol.
what add back HRT are you on? You might not have the right balance if you are still suffering menopause symptoms, have you voiced this with your gynaecologist as it sounds like they need to review your hrt as you will need higher doses given your age. Good luck xx
Yeah tibolone is not as effect as actual hrt especially with your age I had my total hysterectomy aged 35 and I have to have high levels of oestrogen and progesterone to stop the menopause symptoms so I hope that they can come up with a better solution for you as I know how horrible the symptoms are till you get the balance right it took me about 4 months post hysterectomy to feel normal again xx
Hi I'm on zoladex and addback HRT. I'd eliminate gluten and alcohol from your diet if you haven't already. Then get a good range of B vitamins (B complex B6 and B12) vitamin D and K2 and a good magnesium supplement. I'd go on proper HRT which will really help you. You don't need much estrogen if you have endo but you need some. Strip your diet of processed food, prioritise sleep and exercise ( walking is great). I'd also take an iodine supplement which helped me. Good luck xx
I generally cook from scratch I don't buy processed foods never have and never will. I barely drink just the odd occasion. I am on hrt as prescribed they are looking at others but the other options are not as efficient as the one I'm already on, so I do still get some hormones. I have previously cut out gluten and it actually worsened my condition... I also tried swapping to gluten free and it actually set off my endo.I will however look at the vitamins I'm taking and see if I need to up any levels of the ones you've suggested.
Excersise I already do alot with work as it's a physical job on avg I'm doing 6000 steps a day and active for 90min a day (watch tracking).
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