Hi all, I was diagnosed with Endo during laproscopy Dec 2024 and I have PCOS.
I have been admitted over NYE and an ultrasound scan shows the Adenomyosis.
I have surgery on January 15th with an Endo Specialist. I am planning to have the surgery and then start Dieongest to stop the endo growing back. I have been on various pills previously and they were not successful and impacted my mental wellbeing.
Please share your experiences with Dieongest.
Any information is really appreciated!
hey crunchie, sorry to hear you’ve been so unwell over the new year! I’ve a detailed post with my experience on dienogest on my profile (I didn’t get on with it very well). Currently using the patch and having a much better experience so far. Take a look at the post and feel free to ask any questions. Hope your surgery goes ok x
Hey Claire. Thank you for your kind words - I have read your post and I am so sorry you have gone through this. I have the same concerns regarding it impacting my mental wellbeing and causing weight gain so I have held off taking the medication for now. Thank you so much xx
Sorry to hijack, but do you mind if I ask is that the evra patch? Just wondering as it's the only one im aware of and I was wondering if there was another! I tried evra some years ago but sadly it didn't benefit me. But I *loved* having something in patch form as I struggle to take tablets due to nausea and mental issues taking tablets (my body simply rejects the idea and I gag constantly) and can't take anything with lactose which is nearly all tablets! Xx
I‘ve been taking dienogest for about 1.5 years now. It‘s the first pill I took so I can‘t compare it to others. I had maybe 2 weeks of hot flashes and heartburn from it, and maybe 2 months of spotting, but after that and ever since it‘s been great. It has stopped my endometriomas from growing back, which were my biggest problem. I still feel my abdomen overall is kind of tight but I‘m 99% pain free and I don’t bleed ever. Honestly with these things you just gotta try and see how you react to it. Fingers crossed you tolerate it fine x
Hey thanks for your reply. I know that but I have had lots of different pills / hormone treatments and recently been put in chemical menopause and my hormones have not regulated from that yet so I am just concerned that it may cause me to be worse. I am thinking though I will have to at least try it. Thank you so much x
sorry to hear what you are going through! I was also put on dienogest after my surgery back in July 2024. I felt my pain was improved, whether that was from dienogest or the surgery it’s hard to know. Also completely stopped bleeding which was nice. Unfortunately it didn’t agree with me in other ways as I ended up having migraines twice a week, difficulty sleeping, brain fog/ low mood. Currently not on anything and waiting to see gynaecology again. It could work for you so worth giving it a good few months in your system, good luck! X
Hey thanks for you reply! I am sorry to hear it did not work for you, I have had this experience with a lot of the pills and even tried chemical menopause and worried about the impact on my overall wellbeing and mental health as dealing with the conditions is bad enough. Thank you!x
Hi there, hope all goes well for you. We are all different with medication so can only speak of my own experience, Diogenest did not suit me and I think effected my anxiety.Post surgery I now take Utrogestan, which is the non synthetic version of progesterone, perhaps that would be worth asking about as an alternative?
Hi Polly, thanks for this! I am going to ask my specialist for this as an alternative. I do have a history of anxiety and depression and believe this is led by PMDD and the conditions I have impacting my hormones. I worry that adding more into the mix will just make me feel low again, thanks again!x
Hi there, I take dienogest but in a combined pill called Qlaira, so the dienogest is moderated with a body identical oestrogen. I’ve been on it for 10 months now and it works well for me - huge reduction in pain frequency and intensity, reduction in bleeding, though I do still take tranexamic acid for a few days each month too ( was taking for 7-14 days each month before).
So far I have no side effects. This was a revelation for me - I’ve been on 6 different pills previously and all affected me negatively, including mood and also sometimes worsening my endometriosis symptoms.
Everyone’s bodies are different, but if you’re unsure about taking dienogest on its own, it could be worth talking to your specialist about trying it in Qlaira.
I hope you find something that works for you.x
Hi Cathy - thanks so much for this! I am going to ask my surgeon about this. Due to past experiences with hormone treatments I am reluctant to mess around as I only stopped medical menopause in November. Thanks so much!x
Hi there. I've been on it for a bit over 2yrs. On the whole ive had a very positive experience but it's not a miracle cure and doesn't eliminate all issues by any means. In the first 6+ months it was very rough, hot flushes constantly, severe trouble sleeping, headaches etc. Not really uncommon for a hormonal treatment but nasty all the same. I was determined to stick with it as I had already decided I could not do any more hormonal treatment, everything has affected me so badly I just couldn't go through any more. I'm glad I did in the long run as it has helped the pain in the sense that I went a good 10 months without a period. I still had daily pain but not the excruciating on-the-floor rocking and vomiting 10/10 stuff. Up until about 4 months ago all was going well. Unfortunately I've gradually had more pain creeping in, nausea, light headedness (though I'm being investigated for a possible heart murmur so I don't know if it's related to that instead), headaches that may or may not be related and finally in mid November started to bleed for the first time and haven't stopped since save for a 6 day gap last week. Still bleeding now in January. The pain is a bit reduced to my normal bleeding pain but very prolonged so hard to cope with. I am desperately hoping its a temporary blip as I take don't want to come off of dienogest. As much as it has been rough on the whole it's been the best thing I've ever had (low bar really as everything else I've ever had has made things worse!). Going months without a period - though still in some pain - was a dream for me.
The only other major cause for concern for me right now it's that I cannot get any more. I can only have the lactose free brand Zalkya and they've temporarily stopped making it due to manufacturing issues. I'm down to my last few weeks and then that's it until they make it again (if they do). I've heard of a lot of shortages of dienogest in general in recent months. So that could be a problem.
From my personal experience I feel it's worth a try as is you benefit from it it could be very worthwhile. However it may well be a rough ride whilst you get used to it. I have heard of a lot of people struggling with mental side effects (depression, anxiety etc) with it too, though thankfully I was spared those issues. But something to be aware of.
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First appointment BSGE Centre - Strange experience, is this normal? 
