Experience of Zalkya - help

[Cleo45]

Hi,

I have been prescribed Zalkya to try and help my endo. I have had 3 keyhole surgeries so far. All helped for around 6-8 months and then back to square 1. I have a mirena Coil and haven't had a period since Dec 21 but I am getting endo pains/symptoms the majority of the month now. Next step if this doesn't work is excision surgery.

My question is really if anyone has experience of Zalkya/dienogest medication and if it really helped them?

Thanks in advance

[TinyRoo]

Hello Cleo45

I did notice an improvement in pain with Zalkya, even in the first week but then I just started painful bleeding for three weeks continuously so it was stopped. I think if I didn't have a history of adenomyosis, this drug might have been the best for my endo.

All the best!

[Cleo45 in reply to TinyRoo]

Thank you so much, I was worried after reading about other side effects, particularly low mood etc. Did you experience any of those? Sorry to hear about your adenomyosis, I hope you are finding something to help

[TinyRoo in reply to Cleo45]

I understand as I was worried about the effects too. I mainly suffered with nausea and insomnia - I struggled to stay asleep. For me the insomnia was the worst effect and I think the lack of sleep affected my mood. If it hadn't been for the bleeding, I really would have liked to have tried to continue it though as that side effect might have reduced as I adjusted. Some lucky people don't have any side effects at all though so it will vary depending on the person and I guess you just don't know until you try it unfortunately.

Thank you. I have now started norethisterone 5mg twice daily and seem to have a bit more energy during the day than before. My pain is breaking through more than it did with zalkya but I don't have any bleeding yet🤞. Still having sleep issues though but I'm hoping to adjust to it soon. Lack of good quality sleep seems to be my main issue with all these meds.

I really hope zalkya helps you manage your daily pain if you try it.

[Cleo45 in reply to TinyRoo]

I already have trouble sleeping so I guess that might not be as bad. Insomnia definitely affects your overall mood. I will definitely give it a go, just a bit worried about having progestrin from the mirena, and then that on top. I was worried about more weight gain as have already gained 4kg on the mirena despite going to the gym and eating a natural diet. That is great news to hear, I hope it starts settling more for you in the coming months and works. It's a terrible illness isn't it, I am glad to have joined this community.

Thanks for your kind words.

[Thecraftyadder]

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've been on it since September 2021. 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. It can't hurt to try it I think. We all respond differently to things. For me the mirena was an absolute nightmare but Dienogest has been ok.

[Cleo45 in reply to Thecraftyadder]

That's amazing, I am happy to hear it is helping you. I am not keen on mirena either, I have gained 4kg and have been exercising more and eating less. Did you experience any of the less desirable side effects?

[Thecraftyadder in reply to Cleo45]

Sadly I have gained weight on Dienogest and like you nothing I do will shift it! From a mental health perspective I found it better than the mirena (I was constantly spotting on the coil to). I would say it caused me a bit of anxiety and my hair went a bit lank initially but that has settled now and honestly now I'm in my early 40's it hard to know what is caused by the tablet and what is perimenopause symptoms!

[Cleo45 in reply to Thecraftyadder]

Thank you so much for your reply and advice. I will give it a go, will report back as to how it is going!

[Blueolivemama]

Hi Cleo,

I've found taking Dienogest very successful, having previously been on the Mirena Coil.

I've had no side effects, thankfully, and live most days pain-free.

I wish you the best!

[kismelo]

Hi Cleo, how are you doing now with having M-Coil and taking Zalkya? I have been on Zalkya since July and by September did not have period but since end of october have been bleeding. My doctor told me, got 2 options..taking 1 week break from Zalkya or Mirena Coil.

[Cleo45]

Hey Kismelo, I didn't maintain the doses as I was feeling depressed on them. Did you get any side effects? I am back on the 12th Dec to see what else to do next. What are you thinking? The only thing is the pain of mirena insertion!