Dinogest

[Jako1982]

hi is anyone on Dinogest and is it causing you low mood and weight gain especially on the boobs 🤦🏼‍♀️

I’ve been on Dinogest for 9 months and when I first got put on it I thought it was amazing really helped with endometriosis pain, stopped my periods and gave me a new lease of life.

I had an operation 5 months ago to remove ovarian cysts.

Lately I’ve been struggling with weight gain, really heavy painful breasts and low mood. The only thing I can put it down to is Dinogest.

Just wondering if anyone else has had this? Thanks 😊

[huhfimmie]

Hi, I'm on dienogest and have been for a year, the only side effect I've noticed is tender breasts, but not weight gain/low mood. Maybe this is something worth discussing with your doctor?

[Purplefrenchie]

Hi, I've been on dienogest for a few years. I also had low mood and tender breasts for the first 6 months approximately, but it went away. I still have these symptoms during my cycle but I link it with my cycle, not necessarily the pill, as it goes away after a few days and is very regular. I hope your symptoms eventually go away or you find a solution!

[DaviesTF14]

I came off the dienogest due to low mood, tinnitus and it did nothing for my pain. Only took it for two months and that was enough for me to decide I didn't want to continue

[Camodo_Cat]

Hey, I've been on dienogest for nearly 6 months. It wasn't stopping my periods until possibly this last month or so where I haven't been bleeding so I'm hoping it's a delayed cumulative effect for me. I haven't had any obvious side effects so far so I can't help from experience but it does seem strange to be occuring after 9 months. Maybe it's worth talking to your consultant/ doctor about it to see what they think. Hopefully whatever it is can be fixed so you don't have to suffer with the low mood etc.

[parleystopaz0e]

Hi, I’ve been taking dienogest for about 1.5 years now to prevent disease recurrence after surgery.

I’ve got similar side effects to you - low mood and weight gain. Neither is severe, luckily. My mood wasn’t the best before the medication but it’s different now. And the weight gain is probably contributing to that too. I’ve been trying to find information online about how the drug causes those side effects but so far I’ve not been successful. I’m so tempted to stop taking it (wasn’t thrilled about taking hormones anyway) but I’m worried the endo will come back :/

Hope your symptoms are only temporary!

[Palomino13 in reply to parleystopaz0e]

My surgeon told me to take this pill to prevent the disease from coming back. In the last 6 months I stopped taking it twice and started again as I could not cope with the low mood. After consulting my surgeon and explaining the low mood he advised I mush try and go back on it for 6 months and see if the symptoms settle.

A different surgeon advised that there is no evidence which suggests this drug will slow growth. I’m also at a cross roads. Did your low mood symptoms continue after the 6 months mark?

Thanks

[parleystopaz0e in reply to Palomino13]

Hey! The first few months were definitely the hardest but that's what it said in the leaflet so I was aware it would happen. I didn't keep track of how long the side effects were at their worst but it wasn't more than 6 months. That's not to say my mood now is good but it's definitely not as bad as when I first started taking dienogest. My surgeon also advised me that the side effects would improve with time but he hasn't provided much other information. He did say though that if I wanted to stop taking it it'd be fine, but I'd have to be monitored more closely in case the disease comes back. But the thought of potentially having to go through the initial side effects again is another thing that's stopping me from quitting.

Yeah, I think most research focuses on endometriomas, probably because they're easier to examine and measure. Maybe one day we'll have better research and more non-hormonal drug options

[Palomino13 in reply to parleystopaz0e]

Thanks so much for responding such detail, I really appreciate it. I will give them another go. I really don’t want this horrid disease to grow back.

On the upside there are trial going on at the moment with apparent great results with a non hormonal drug called Dichloroacetate. There is some hope at least 😊

[Purpledinosaur7]

I only took Dienogest for 3 months because it really affected me mentally. I found it really helpful with controlling my endo symptoms but I couldn’t cope with the anxiety and depression symptoms it was causing. I spoke to my endo nurse and she said it’s quite common in progesterone only pills as oestrogen is what stabilises our mood apparently. Might be worth speaking to whoever prescribed the medication and see if they have any advice for managing your symptoms

[Cia12]

Hi, I'm on dienogest a month now and breast pain is really difficult to cope with. They've also increased in size. Wondering if the pain gets better with time. Mood isn't great either. How are u feeling now?