Hello everyone, I've been started on dienogest and having a nightmare being able to stay asleep. Getting less sleep now than I was due to pain alone.
Has anyone else experienced sleep problems while on this medicine and if you did, did it go away as your body adjusted?
Thanks in advance ☺️
I haven't tried that only zoladex.
I know the body responds differently so I suggest if you can't cope let your GP know.
All the best
Hi there, I am on this just now and waking every 1.5 hours! I get to sleep no problem but like you I can’t seem to stay asleep. I have terrible bone pain that they are saying is saying is a side effect of this medication too so I contacted my gynae team on Friday to ask to be moved to something different. I think you should definitely follow up with your care team to see if you can get moved to something else too. Hope you have some luck. I can agree……not sleeping can often be worse than dealing with the pain! Take care 😍
Thank you for getting in touch. Sorry to hear your having bone pain with it. I haven't had that but I'm only a week into treatment. Will see how the sleep issues go. Just hoping I can get used to it because it seems like it could be a good drug for endo. Not sure what else I can go on now because I've tried a lot of drugs.. prostap was good but my consultant says I'm too young 🤷.
Hope you get sorted soon🙏x
So I've been on it since September 2021, the longest I've managed on any hormone tablet. I did and still do go through patches of bad sleep which seem to be hormone related. However I'm in my early 40's so peri menopause is kicking in to. I've also realized that my pain meds (tramadol) definitely disturb my ability to sleep properly so it hard to attribute it solely to the dineogest. My GP suggested taking a piriton allergy tablet before going to bed as needed since they make you drowsy. If this is the only side effect from the tablet maybe see if they can give you something to help you sleep and stick it out a bit longer. I took about 4 months for things to settle down in general on the tablet.
Thanks for getting in touch and sharing your experience. You did well sticking it out 🙂.
Did you find dienogest has helped your pain?
I suppose it has because I take less pain killers than before. I don't bleed at all on it now which means I'm spared flooding every month! I had surgery in February and there wasn't too much Endo compared to last time so it may have contributed to that outcome. I do have another condition they found called pelvic venous insufficiency/congestion and this is contributing to my pain. I've had really bad experiences on the combined pill and the mirena coil so this was bearable by comparison. I hope things improve for you on it. It's so hard to find something that suits us x
It does sound like it has helped but sorry to hear you still had some growth. Glad it's been removed though. I see, I've never heard of your extra condition, but googled it and it sounds painful 😣. These conditions are so cruel. I have adenomyosis and notice that dienogest can actually make periods worse so hopefully it won't be too bad.
Have you, I tried the combined pill and was okay but still bled through unfortunately. I'd rather go back on prostap and the medroxy depot but feel that won't be a possibility.
Take care X
Just to clarify I was off hormones completely for more than 2 years so regrowth may have taken place then before I started the dineogest.
It's interesting though because I had new growths on my bowel despite no treatment break and was taking prostap/hrt but like yourself there was less. I guess it will vary depending on the person and treatment. my doctor has prescribed some zopiclone to help sleep. Hopefully this can help in the short-term 😴
Hello tiny. I'm in the 3° month and j have the same issue. I can't sleep too much and I have many nightmares per night. I don't know what I should to do. 
I'm sad and falling in a bad dark way. Regards . I would like to hear some experience of somebody who took the pill for more than 3 months.
Hello Magdalena,
Really sorry to hear that your still having sleep issues and feeling like this after 3 months. The nightmares are terrible. It's not acceptable for you to suffer like this. Are you still under the care of a gynaecologist? I just wondered if you could speak to their secretary? I think you should try, or even speak to your GP?
Hope this helps a bit. Sending hugs x
Hello tiny! Yes. Fortunately next week I have an appointment and I'll try to change the pills. My brand is Desire Dienogest, I should try with Visane Dienogest . Let's see what happens. It's terrible! Regards !
Or maybe just take off my ovaries and live in peace hahaha. (, I was thinking about it. I'll ask about it as well)
Aw bless, it does make you feel like that. Keeping fingers crossed for you 🤞
Hi Magdalena, all the best for next week. Hope you get some clarity with your options 🤞. Let us know how you get on. X
✅👍
Hi TinyRoo,
As with all medication, it can take a while for your body to adapt. I've been taking Dienogest for 6 months now and it has been the best medication I've taken.
Whilst I have had very little side effects, initially I did find myself waking up in the night, but this didn't last and I have been sleeping very well lately.
I take Magnesium before bed - it's said to help you to fall asleep, improve sleep quality and reduce symptoms of restless legs syndrome, which can interfere with a good night's sleep.
I hope you manage to find a solution ✌️
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