Dienogest V’s Mirena Coil - Advice/Prefer... - Endometriosis UK

Endometriosis UK

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Dienogest V’s Mirena Coil - Advice/Preference please

Elleseason profile image
4 Replies

Hi all,

I was officially diagnosed with advanced Endometriosis last year after having a large endometrioma removed from the left ovary. I subsequently had 9 x Decapapetyl injections which I found increasingly difficult to endure primarily due to side effects of hot flushes plus aggressive/depressive/anxious tendencies and at times, insomnia. I have now been advised to take Dienogest to suppress return of the disease … or alternatively get the Mirena coil. What would your advice be? I keep reading about people feeling depressed on Dienogest and that frightens me as I greatly disliked the feelings of low mood on Decapapetyl! All thoughts much appreciated! Thanks in advance!

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Elleseason profile image
Elleseason
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4 Replies
Maxyy93 profile image
Maxyy93

Hi Elleseason

I’m so sorry to hear that you’ve been having a hard time with low mood on the injections. As everyone will say, everyone is different and will respond differently to each treatment.

I had zoladex injections for a while and like you, I struggled with hot flushes and insomnia. Also weight gain after I stopped taking them. I had the mirena coil put in when I had my last surgery. I found that I was bleeding for the first 6 months with it. My periods also continued and I also had pain with it too. I was always emotional looking back as well.

My gynae recommended dienogest alongside the mirena. I was constantly bleeding on it for months every single day. But the pain was very much improved. The mirena ended up getting displaced and I had to get the mirena taken out. I’ve only been taking the dienogest now and it’s been wonders. I have zero pain and bleeding as also stopped. It’s been a month though so I’m keeping any eye on things. I feel more like myself than I did when I had the mirena.

Ultimately the decision is yours but I’d say dienogest is a less invasive option to start with. If it doesn’t quite work for you, then you could always stop taking it and go for the coil. I hope this is helpful and wish you all the very best. X x

Elleseason profile image
Elleseason in reply to Maxyy93

Hi Maxyy93,

Thank you so much for your reply! Any info is so helpful and these forums are great as I know nobody in my own friend circle who has any full understanding of all this so it’s nice to connect with people who have experienced something similar.

You’ve had a rough time of it - I’m sorry to hear all you’ve been through.

Yes, I think you’re right! I’ll give the Dienogest a try first and go from there. As you say - the less invasive option.

Thanks once again for your kindness.

Best of luck & hope you stay well and out of pain! 😊

Thecraftyadder profile image
Thecraftyadder

I got really depressed with the mirena to the point of suicidal thoughts. It was also very painful as my body was rejecting it. I had it removed after 3mths. I've had a bad time on other hormones but I did reluctantly agree to try dineogest. I'm been on it for 18mths now and for me it's been the most tolerable of anything I've tried. At least being a tablet it's easier to stop if it's not suiting you. I hope you find something that helps. It's such a minefield trying different things.

Elleseason profile image
Elleseason in reply to Thecraftyadder

Thanks so much for your reply and I am so sorry to hear of your horrific Mirena experience. Yes anything hormonal is a minefield and it’s horrible that we even have to tamper in any way with our hormones simply to keep the endometriosis at bay! It all seems so unnatural but you’re right … at least with a tablet you can stop it more easily if it isn’t suiting. I’m glad it has been a more tolerable option for you. I appreciate your response so much. Best of luck with everything!

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