Dienogest UK

[AMJ88]

Hi all.

I've been on Zoladex for 12 months and have had an appointment today with my consultant after being in pain last week.

My scan has showed that my right ovary has fused itself to my womb and that is why I have been in a lot of pain over the past week. My left ovary was removed 4 years ago due to a cyst.

Dr said that due to my age (34) hysterectomy wasn't an option yet and that I need to think about what's next as Zoladex is only licensed for 6-12 months however due to COVID treatment has gone on for longer.

He wants me to go on to Dienogest tablets, he said they are a trail drug here, however Australia have found them really good.

I've done some of my own research this evening and some of the side effects scare me as it sounds very much like the pill, many of which I have had no success with, pain and bleeding throughout.

Has anyone had any experience with this tablet. I just feel like I'm taking a step backwards atm as Zoladex has definitely helped with the pain (apart from my ovary, but that pain has only been in the past week or so)

Thanks all ❤️.

Lana

[Poorna66]

I am on visanne which is dienogest 2 mg and it has honestly given me back my life. The initial 3 months were really bad with non stop bleeding and pain but once I got used to it, it’s been smooth sailing. A lot of my cysts have shrunk too. I am not going to lie, it does have side effects. For me, its mainly weight gain, anxiety and fatigue but I am able to keep these reasonably under control by changing my diet and adopting a healthy lifestyle. I think it depends largely on how bad your pain is and how desperate you are for relief. Mine was so bad that I was depressed to the point of being suicidal so I’ll take the side effects any day. That said, I think you should give it a try. I was in a forum of women who were on it (i forgot the name of the forum) and 80% of them had positive things to say about it. It may take some time for your body to get used to it though. Be patient, give it atleast 4-5 months, adopt a healthy lifestyle and make sure you take the medication at the same time everyday (this is very important). Good luck

[Maxyy93]

hi AMJ88

I have found dienogest to be such a heaven sent. It really reduced my pain to next to nothing. The main side effect I had with it was bleeding. I was taking the tablet alongside the coil so it’s really hard to know if it was the tablet or the coil. I since had the coil removed about 3 months ago and just taking the dienogest. My bleeding has since stopped. I too like you did not agree well with the coil, mini pill, zoladex injections or contraceptive tablets. This seems to be the only thing that’s been effective.

Compared to the other options, I’d definitely give it a go. Worst case scenario, you can just stop it. But give it a good 3 months and see how it goes. Wishing you all the very best.

[F1Lucy]

Hi there!

It's always strange to read a post and it's exactly the same as your own case! I had an ovary removed 12 years ago, Mirena coil 3 years ago and now waiting for a hysterectomy due to a 6cm cyst which has grown through the tube and fused my ovary to the womb/bowel. I'm 42 now so they said it was my only choice of treatment.

My consultant said it has given some their life back and it's been really successful for other patients. I jumped at the opportunity as I was desperate for some help. The first 4 months, nothing changed at all. I didn't have bleeding because of the Mirena and haven't for a couple of years now.

But as I went into the 5th month of these I felt the cramping around my ovary improve. I'm on month 6 now and no cramping at all.

When I read up about it I found out it contains two different hormones but no contraceptive. So it's like it's switched my ovary off, I guess that's why the cramping stopped.

The only side effect I've had is hair loss - to the point I was really worried about it. I've been using a caffeine shampoo for a few months now and it's stopped coming out.

Although it's still a bit of a trial here, it was approved for use years ago and I think they're now discovering how it can help endo. I haven't had Zoladex as they said to start Dienogest first as it was better for your body and you can take it longer term.

I had years of awful times with the pill, even patches etc. We're all different but this at no point felt like I was back on the pill.

Hope that helps a little, I know it's a really hard decision!