Dienogest?

[Lavenderpetal]

I've finally seen a specialist and he's told me I haven't got deep infiltrating endo as it's not showing up on scans but I could have mild so has put me onto the list for surgery (which is a relief) but he also wants me to start dienogest. I've never mentally reacted well to birth control but was willing to give it a go until I scared myself by looking up people's experiences and found a lot of people report it mentally makes them so much worse. I guess my question is for anyone on it, how has it made you feel and has your endo symptoms benefited from taking it? Thank you! Xx

[ChilliLemonPie]

I took dieno for two years after my laparatomy to get rid of the nightmare of a cyst (18cm) i had. This was also the time my endo was diagnosed (on the bowels, liver and many other places). As I didn’t know of endo back then, they suspected it could be cancer due to its rough edges etc.

Before dieno and surgery: i had pain that made me pass out and bled out of my tampon and pads within hours. This lasted about 4-5 days every 28 day cycle. Side note: I believed this was „just normal“ and sucked it up as I thought everyone with a period goes through this. Lots of pain medications for survival.

During dieno( started immediately after surgery): I bled lesser, but more often. Wasn’t cyclic anymore. Faced with constant fatigue and low energy levels, mood swings, gained 10 kilos within the year and cut off social interactions. At some point, adhesions from the surgery and some superficial endo were visible on the ultrasound. On the positive side, no new large cysts. Lots of pain medications for survival continued.

I stopped Dieno 4 months ago, as I would like to try to make a baby sometime. My cycles resumed within 5 weeks. I have shorter cycles(22 days) and it’s a bloodshed for 5-8days, with crippling pain again. The visible endo is still superficial, so far no new cysts. Lots of pain medications for survival continues.

Side note: dieno should not be used as birth control pill(risk of ectopic)

TLDR: dieno may or may not have helped with the growth of endo, didnt alone didn’t help me manage my symptoms and came with additional complications. But this is just me. A friend of mine says it worked well for her.

[Lavenderpetal in reply to ChilliLemonPie]

Thank you for sharing your experience with me. I'm so sorry you have to go through so much pain along with everything else. I really hope things get better for you! I have a feeling I'm not going to react well and seem to be managing with the pain medication I'm on. I really appreciate you sharing thank you xxx