Dienogest Advice

[Claire432]

Hi! I got diagnosed with endo in May, about a month later started on Dienogest and despite my concerns (having not got on well with the combined pill in the past) I was told by my gynea that I did not come with many side effects. So I decided to give it a go.

I’m nearly at the end of 3 months of taking it and I spot daily, my mood hasn’t been this low in years and I’ve put on so much weight, feel so swollen/ bloated all the time and just making feel really awful. There are other side effects like nausea but these are the main ones.

I have 2 questions.. has anyone had this same experience? And if so, did you just stop taking it or come off it slowly?

I feel like I can’t win l, without it my endo symptoms are awful and on it I generally just feel not myself/ don’t like myself.

Any advice would be very welcomed!

[Pacotj]

I took it for a month before calling my gp and explained that I was experiencing severe anxiety on it and felt like life wasn’t worth living. He said that he was happy for me to stop taking it as I’d given it a fair trial, was scared to stop but in all honesty taking it didn’t affect my pain levels. I stopped taking it rather than weaned off it

[Joonaspryte]

I felt exactly the same when gynocologist told me to just stop taking hrt, I just wanted to throw myself in front of a bus if I'm honest, this is not like me. So the GP put me on patches and I said I will slowly try to stop them. But I'm scared tbh She mentioned putting me on an estrogen suppressor, but I will not let her, not only do we have bad osteoporosis in my family ( my grandma ended up paralysed in a wheelchair) I've heard the side effects are brutal. Also Dr ken sinervo. Isn't the biggest fan from what I gather.

It's like we are guinea pigs, and they try to avoid surgery.

[KTJohnson]

I took it for 5wks early this summer and started with no side effects but then they just got worse and weren’t resolving the things they were meant to be fixing - swollen tummy and spotting/bleeding. I got terrible insomnia, gastrointestinal issues and just felt like a zombie. It’s scary coming off things that you’re told are meant to fix you but I think we know our bodies best. I stopped altogether and within days felt I was getting my body back. Trust your instincts and good luck!

[TandE]

Hi. I am four months in taking dienogest. Spotting daily, which is driving me crazy, then the odd period of heavier bleeding (assume actual period). Feeling pretty low but I think that is mainly because I don't feel like it is helping as much as I was promised. I still get severe pain although admittedly it is much less frequent than it was. Because there are mild signs of improvement on that front I have resolved to continue on it for six months - any hormonal treatment can take a while to bed in. I am finding a healthy diet and plenty of exercise really help my mental state but it is different for everyone.

However, I should add I am nearly 50 so I am only planning on taking it very short term until I hit menopause because I too am worried about bones. At the end of the day you know your body and if it doesn't feel right then it is time to stop. I was put on birth control many years ago and I lasted three weeks before I thought I was having a full-on breakdown. I stopped taking it immediately and the side effects weren't too bad, well they were certainly numbed by the joy of feeling myself again!

I hope you manage to sort yourself out. Sending best wishes.