Endometriosis Treatment - Dienogest

[Audrey4]

Hello,

I have been diagnosed with endometriosis recently and my doctor prescribed the drug "Dienogest".

I am a bit worried by all the potential side effects and I was wondering whether anyone had used this treatment before?

Many thanks

[Nousername_1]

Hi Audrey4 - I’m on Dienogest and have been on it for most of this year, for the same purpose. It’s done wonders for me - reduced my pain significantly. I can definitely tell when I’m on it vs other pills. I do still have pain but it’s more manageable with Dienogest. Having said that everyone’s body is different so it’s a bit of trial and error to figure out what works for your body! Hope you feel better xx

[Audrey4 in reply to Nousername_1]

Many thanks Nousername_1 , that's helpful to know! Take care

[Hc1992]

Hi, on Dienogest for the past 8 months. There will be side effects so my approach would be to review the list and raise your awareness over these symptoms so that when you get it you’re not as affected by it?

The side effects I’ve felt were anxiety, depression, vaginal dryness due to the drop in oestrogen. I try to manage these symptoms with therapy, self care, yoga and tell myself I’ll be off this medication one day.

[Audrey4 in reply to Hc1992]

That's helpful, many thanks Hc1992 , I hope you feel better soon

[Sabrinacolada]

Hi,

I was on dienogest for about 6 months before my recent surgery so can't comment on longer term side effects. Generally found it stopped menses, worked better then POP for pelvic pain and had far less side effects for me personally then induced menopause ( zoladex). I remember having mild acne, the odd headache, hair thinning ( but had also come out of induced menopause and was under stress so hard to comment which caused it as still losing some hair now over a month since stopping). On the flip side it didn't fully alleviate pain, did nothing for the bowel signs ( but I am stage 4, and was already told it was just in thr mean time before my mdt op).

The drug datasheets list every side effect for legal purposes. Everyone's different and will react differently. I was told wait at least 3 months to gauge the effect. Its always risk versus benefit of any drug unfortunately and discussing with your doctor pro's and cons of each. It was handy to write down a daily pain score and log any side effects to report when they review the medication.

❤ Sabrina xx

[Audrey4 in reply to Sabrinacolada]

Thank you so much Sabrina, that’s really helpful. I hope you will feel better soon

[Louisehart1995]

I've been on it for 4 months now and mostly been coping really well with it vs the POP. Pluses - my periods have completely stopped whereas I was constantly bleeding on the POP, pain is much better, weight have stabilised (I put it on on the POP). Downsides - moods are a bit all over the place, anxiety has got worse and have some very low days, occasional headaches, my bowel movements seem a bit more erratic but I have suspected IBS anyway so this isn't that different to before. Overall I would recommend if you're in pain, and it is meant to help control endo growth too (I'm not sure how accurate this is though!)

[Audrey4 in reply to Louisehart1995]

Thank you Louise! Take care

[redpot]

Thank you for asking the question Audrey! I have just been prescribed Dienogest and am also curious to hear others' feedback. I had a Zoladex implant a couple of years ago but it really didn't work for me (terrible headaches, dizziness and cold flushes) so I had it removed. Unfortunately with endo, it feels like there's a lot of trial and error before anyone finds what works best for them. Good luck with it if you give it a go.

[Audrey4 in reply to redpot]

Thank you! If that helps: I spoke to my doctor and they said Dienogest is usually well tolerated. I hope it will work for you! Take care