dienogest!? Advice needed please xx

[Laulou87]

I had an appointment today with my endo consultant, he’s suggested I start taking Dienogest,he said it’s relatively new in the UK but medical data suggests to can work. Have any of you tried it? From what I can see online there’s mixed reviews so I’m not sure what to do for the best.

[Nbubz]

I was prescribed this after my surgery in July 2021 (confirmed endo). I don’t have medical insurance and the NHS won’t prescribe it, so it’s massively expensive… worth bearing in mind if you’re in the same position. I took it for about a month and then had to give it up because I’ve never had such low mood! Wasn’t long enough for me to start seeing any benefits. Sorry that I can’t be more helpful! I’m sure other people have had more positive experiences.

[puzzleprincess]

I don’t have much experience with this medication, but started taking it around a week and a half ago for my endo. So far it has increased my pain a little (I was on the POP before switching on to this) and I have been getting a lot of nausea (but had that when I started the POP too).

I was prescribed this through the NHS, but it is a little tricky to get hold of. The only place I could manage to get it is boots pharmacy.

Lots of mixed reviews, but seems to be one of those medications that people absolutely love or hate! I came to the conclusion that I needed to give it a go and see! X

[Mumpet11]

I may have posted my experience with Dienogest before on here, so apologies if you’ve already seen this.

I was on it for a month and it did minimise pain slightly but I developed severe anxiety and depression and intrusive suicidal thoughts. Whilst I can’t pin my mental health difficulties purely on taking this, I imagine the stress and burdensome nature of having endo and other health difficulties / childhood experiences also contributed, I think this pill did trigger this depressive episode. I have been having therapy as a day patient at a psychiatric hospital for the last 2 months and am finally now feeling back to my usual self.

Of course, everyone reacts differently but I would just say to keep an eye on your mood if you do take it.

I paid around £100 for 3 months’ worth (but only ended up taking it for a month). My GP said they would cover it after 3 months, given I’d already had one endo surgery and tried numerous other contraceptives before trying it.

Hope this helps in any way!

[Myl0]

Yes - i took it for 3 years after being prescribed VISANNE (Dienogest) in Italy. It was a new drug back then in 2019 & I was only supposed to stay on it one year, but I moved to China where I was able to also find it, so I just continued.

My period quickly stopped completely, I had no pain at all. I also have 'chocolate cysts' on my overies, so I continued to get them checked regularly. They stayed the same size, maybe shrunk a fraction, but they didn't grow.

The side effects I noticed were: spots on my chin, weight gain & zero sex drive !!

But at the time my pain was so bad I couldn't walk or talk, even with 1000mg of paracetamol, these pills saved my life.

Now I'm back in Italy & my Doc immediately took me off the pills, as I was only supposed to stay on them for 1 year! She gave me lots of cancer tests to check I was ok (there was nothing) & suggested I have a similar medicine through a coil.

I waited for my 1st period, eventually it arrived about 3 months later, there was no pain, my 2nd one (2 months later), still no pain & my 3rd one (6 weeks later) very slight feeling of cramps but almost nothing, I didn't need any pain killers.

So now I'm still waiting to see if the pain comes back. I still have the cysts but I haven't had an MRI. My spots went, my sex drive came back, a bit, & I haven't lost any weight !!!

Hope this helps

[JustLiLi]

Hi,I'm at the moment on them, bit is hard to say as I'm taking only for a month and I'm taking double time as my Gynecologist recommended, what I notice I'm more frustrated then I was before, still watching myself..

Pain still here still.in agony.

Hopefully they will work for you soon xxx

Stay strong xx

[Eternalwarrior]

Hi, I took it for 6 months and it affected my mood very badly and made me very depressed. The pain was a tiny bit better for a few months but it didn’t really make a difference. The positive thing is that I had endometriomas on both ovaries and they didn’t grow. In fact, the endometrioma on the left ovary become a bit smaller. I ended up having excision surgery and was diagnosed with DIE and adenomyosis. I sometimes think Dienogest didn’t really work for me because my endo was severe. Good luck xx

[Hidden]

Hi,

I recently stopped taking my hormone medication, but was prescribed Dienogest (Zalkya) to take with the POP (Cerelle) for 11 months.

Initially it reduced my pain quite a bit, but not completely. I bled lightly for approx a week or two and then my periods completely stopped. Overall I would say it had advantages (no periods/reduced pelvic pain/improved bladder and bowel function) but these were outweighed by the side effects (deep depression/brain fog/crippling fatigue/joint pain/loss of libido/acne). I have also noticed a few small bald patches on my head that I can't be sure I developed during use or after I stopped taking Dienogest.

My period took 6 weeks to return after stopping, and although initially super painful, was much more manageable. It only last 3 days (used to be 7) and the blood was very bright with hardly any clots. So I do feel it done its job.

My friend used it for a few months, and she found it really impacted her mood too, but unsure what other side effects it gave her. She had to stop taking it due to the mood.

Another note is that Zalkya is quite hard to get. There are often stock shortages, so you need to be really proactive to find which pharmacies use which suppliers and order your prescription in plenty of time. I'm in Scotland but found Boots and Rowlands were able to get it most often, and usually had to special order it.

Goodluck 🙂