Dienogest side effects

[Vee2508]

Hi all, I’ve been taking Dienogest for 10 days and I’ve not really felt any positive effects from it so far. I’ve had my first cycle since being on it and have had the regular debilitating shooting pains from the endometriosis. I’m not sure how long it’s meant to take for the medication to work but I’ve been feeling really unwell since I’ve been on them. I’ve had severe headaches which don’t help considering the fact that I’m also on Amitriptyline for my migraines and it causes agonising pain, I’ve had the nausea that I was warned about and have lost weight from not being hungry and have had the worst mood swings and depression. I’m not sure what to do because I’m meant to be on them until May but I feel awful and have been cranky to everyone around me because they just make me feel worse. Should I tell my gp or should I continue the course and see if it gets better with time? I’m just so frustrated from the pain and hot flushes.

[1Poppy1234]

I've just come off that after three months and double dose for me it's done nothing I've bled throughout taking it and had all symptoms etc. I was told three months to be sure it wasn't working but I couldn't even tell I was taking it migraines all back etc.

[Vee2508 in reply to 1Poppy1234]

I’m really sorry to hear that I have to take them until the 13th of May which is when my next appointment with the gynaecologist is but my headaches have been horrendous since I started taking them with no pain relief either. I read through the patient information leaflet and it says that it’s not recommended for individuals with breast cancer in their family which I do have. I already had a breast cancer scare in 2022, my nan had it but survived and my first cousin is currently going through chemotherapy for it so I’m really apprehensive about continuing it. It seems like it’s not worth the side effects if it’ll make everything worse.

[Fulham85]

I have just been taken off these as I was having really bad side effects to. I lasted 4 weeks and couldn't cope no more. So I rang GP and he wasn't happy with what I was going through and told me to stop taking them. He has now changed me to the mini pill and it took a week for the dienogest to get out of my system. This weekend is first time I've felt back to myself in whole 5 weeks them tablets were absolutely awful . Speak to your GP x

[asread in reply to Fulham85]

Hi

I’ve been suggested to take this - do you stop taking the pill? Then do you have a monthly period? I’ve been back to back on the pill for three years which a breakthrough bleed and then stop for five days taking it which has been working fine.

[Fulham85 in reply to asread]

I have been told to take the pill everyday without a break x

[Vee2508 in reply to Fulham85]

I feel relieved to hear that it’s not just me, the gynaecologist made it seem like it’s an amazing medication with great results but I’ve just felt awful on them. My migraines are a lot worse with the pain radiating through my entire head, including the back and I’ve just been miserable on them. I’m still getting the shooting pains through my uterus and left leg as well, luckily it was just a trial, he said that if the Dienogest doesn’t work then he’ll have to put me on Zoladex or Prostap injections to just stop the periods. I’m really glad that you finally found some relief and are doing a lot better, these tablets really are terrible.

[Ash24601]

I swear every endo treatment is a migraine trigger (for me at least) and I'm sure most of us also have a migraine condition alongside endo!

[Vee2508 in reply to Ash24601]

I feel you completely! I’ve been on Medroxyprogesterone and Dienogest so far and they’ve both trigger the worst migraines ever for me. I’ve had migraines for about five years now but these tablets make them so much worse to the point that my migraine medications don’t do a thing either. I think the statistic is that more than 50% of women with endo also have migraines, there is a link there somewhere. It didn’t really strike me until recently that all of my chronic illnesses are all intertwined to a certain degree.