Dienogest

[SmallTalk]

Hello,

I have been on Dienogest for 3 months now. It has helped with my endo symptoms but I am unsure about some of the side effects I am experiencing. I had a call with my gynae yesterday but he rushed me off the phone in 2 minutes and didn’t allow me to ask any questions, so I am turning to the community for support. If people don’t mind sharing, what side effects do you have with Dienogest?

My main ones are constant spotting, I haven’t stopped spotting for about 3 months, I also get a lot of breast aching. Lastly, if I am late on my Dienogest by even an hour, I almost have a full period.

Lastly, the gynae, in his 2 minutes convo with me, suggested I double my dose for three weeks to stop the bleeding, has anyone done this, and did it work?

[TandE]

Hi there. All sounds very familiar. I’ve been on dienogest for about a year now, started with a three month period - joyful - then it eased up, but I do still have frequent spotting, sometimes more, and it kind of follows my cycle - such as it is! For some it completely stops bleeding but not for others I guess. I’m not sure about the double dose, seems a lot so I would read up on that, or get some advice from somewhere bsge registered if you can. Other side effects I’ve had, migraines, aches, hair loss… quite a few tbh! What I would say is that a year in I’m resigned to it until I get the op to remove the endo. I do still get pain but it is most definitely less than it was. And the side effects are manageable. And I don’t want the coil - which was the other option. I wish you good health, hope you find someone more responsive to talk to!

[kismelo]

Hi, I have been taking it for almost a year. Started in July..in December I experienced some bleeding,my gynaecologist advised to take 1 month break. That helped and my period stopped again. This year end of September I had a very heavy bleeding with blood clots,almost fainted..in my period tracker,that meant to be the first day of my period...I got Tranexamic Acid for the bleeding and my Gynaecologist advised break again. Ever since I haven't taken it. I have stage 4 endometriosis and normal periods without any pain. Your spotting might settles soon. 🙏

[miha]

Hi! I’ve been on Dienogest for three years and it’s the best management for my endo symptoms. I don’t have a period anymore. I sometimes spot just a ting bit from time to time. And I have some minor cramping like periods but it comes and goes. I spotted like a period for about 1 year if I remember correctly. And then one month it just stopped. I always take it religiously at the same exact hour.

I still get some bloating, light cramps but not like I used to. It helped a lot as well as my surgery. I am kinda scared to stop it some day. That’s my experience.

[Chennbee]

Hey! I’ve been on Dienogest for an almost a year and a half and it has been a life changer. The first 6 months were rough, constant spotting and bleeding but eventually I adjusted. I get breast pain, insomnia and light cramping and have gained some weight. Also clot quite alot on one day during my period. I do get my period every month but pain is manageable with paracetamol or ibuprofen. It was so worth the adjustment period. . It also massively helped after my surgery. Just like one of the replies I’m scared of what might happen when I eventually have to stop it when I start trying for a baby.

I would suggest setting an alarm on your phone to take it everyday at the same time. Best of luck, sending you positive energy.

[SmallTalk in reply to Chennbee]

Stopping it to try for a baby is a real fear of mine and I would love to have a proper discussion with my gynae about this, but as is always the case, its impossible to get an appt and even if I do, he is incredibly dismissive and wants to get rid of me quickly. Its a difficult situation!

[Aloo_cholay]

Dieno for 8 months now. First 3 months I had lots of side effects. Lots of bleeding (not just spotting), breast pain, hair loss, back pain, weight gain, PMS, headaches. Since then I have almost daily spotting and do get somewhat of a period but not too heavy. I bleed during ovulation too. Vaginal pain before dieno was severe and daily. It's there only a few days a month now

Early on I asked gynae if I needed to increase my dose as the bleeding was significant and I am plus sized. She said no.

I am quite happy with it. Told to supplement with calcium and asked to have a bone scan in 3 months as it increases osteo risk.

[SmallTalk in reply to Aloo_cholay]

Interesting about the calcium supplement, I was never told about this and recently I have been having trouble with my joints. Again the information I have recieved about dienogest has been terrible, so i am defo going to start on some calcium supplements

[East_end]

I also have been on dinogest for about a year now, I hate the side effects, but I have no alternatives. Gynae is impossible to get a hold of.

[ClaudiaGrace]

Hey, I’ve been taking it for coming up to 3 years now, noticed a massive improvement in my pain for about 6 months but I’m not confident that has been retained. I have a lot of symptoms that I’m unsure whether to attribute to deinogest or endo, fatigue, brain fog, body aches, new/different stomach pains, heart palpitations 😂 but yeah I mean what other options do we have sadly. I am going to go back to the private consultant and review whether or not to continue with it but I’m not hopeful there will be any alternative other than surgery. Never had anyone suggest increasing the dose but I have no periods as I’m taking the mini pill also.