Dienogest - can you take it before a diagnostic lap?

[mistygrey]

Hi has anyone been prescribed Dienogest before a diagnostic lap at all? Or do they only prescribe it after you’ve had a lap and confirmed diagnosis of endo? Thanks

[senselessmind]

Good question, I’ve been to my private gyno in Poland and found there I don’t need laparascopy first to get dienogest. In UK I went private to (also a Polish) gyno and I heard is only after surgery. I don’t even know how to get appointment with NHS gyno here since last time I spoken via Babylon I heard I have 6mobths to 1year waiting for appointment based on referral. I want to know how people here get treated here at all via NHS if I just feel… left and hopeless.

[Cia12]

I was prescribed it a couple of months afterwards, but I've heard of it being prescribed beforehand as well.

[BlackPugs93]

I was prescribed it after my lap but my case is different as I had a lap to remove a dermoid ovarian cyst and they found endo at the same time which was a surprise!

[RissRiss]

hi, I have been prescribed Dienogest before my lap which I find weird as I have not been diagnosed with endometriosis as of yet. My MRI did say “ I have a degree of fibrosis to the posterior aspect of the problem that may indicate presence of endometriosis” but not officially lap date yet been waiting since March ☹️

[mistygrey in reply to RissRiss]

Hi thanks for replying it is good they can prescribe it before a lap as I wasn’t sure if they could do. Does it help your endo symptoms at all? Like you I’m waiting on a lap date but it will be years prob

[TandE]

Hi there. I was diagnosed via mri earlier this year and then subsequently advised to go on dienogest (by a private gynae/consultant) while waiting for an appointment at the NHS endo clinic (where hopefully I will be offered a lap). The idea being to try and reduce pain/heavy periods and minimise further lesions. So in short yes, it is prescribed pre-lap but is uncommon on the NHS to my knowledge but I reckon you could ask. I can’t say as I’ve enjoyed the experience of taking it so far, the initial month was awful. Things have settled down a bit now though so while the pain hasn’t much subsided I’m giving it another couple of months. They say it can take a minimum of three months to notice changes. Game of perseverance!

Hope that’s useful to know. And good luck getting your appointment, I finally have an initial assessment in November but it’s taken almost a year to get that. Really hope you get one much more swiftly than that. Best wishes.

[dopelemon in reply to TandE]

Same for me, I was diagnosed after the doctor saw endometriosis when he was doing a pap smear and then another doctor saw it on an ultrasound. I haven't had my lap yet, I have been on the regular pill, 5 months of hormonal induced menopause, mini pill and dienogest (Visanne) and nothing has helped me so far. Even though the menopause was super intense in terms of side effects, I think Dienogest is definitely worse for me. I am trying to stay patient, since I also read it can take 3+ months, but it's not easy. How did it end up going for you?

[mistygrey in reply to dopelemon]

Hi there I haven’t had my lap yet either still waiting but I might be going for hysterectomy now as Adenomyosis was seen on ultrasounds. I’m on dienogest for the past month and a half now it seems to be ok, no bleeding just tiny spotting the odd day here and there but no periods and stomach pain seems to have easier on the right side for some reason. I’m exhausted a lot but I don’t think it’s linked to the dienogest as I had it before this too. Are you staying on the dienogest? I’ll give it a while longer I think, no idea when surgery will be at the moment could be a long wait too!

[dopelemon in reply to mistygrey]

Ah that's good to hear. Sorry to hear you're exhausted a lot, our bodies are still going through a lot so it makes sense. I am continuing (I think), but I am getting to the point of stopping this treatment. Especially the nausea is hard to deal with and the pain has increased since I started taking it. But I am in the 6th week of the 12 so let's see if I can push trough! 😬

[TandE in reply to dopelemon]

Hey. I’m now about 9 months into Dienogest. I really wanted to come off it a month ago but the consultant was keen I didn’t before I got a LAP… I have now been referred but am still waiting for a date :/

Things did settle down, my periods stopped and the pain was much reduced for about 4 months. But since November I’ve not been having a good time. Endo pain is very much back as are - although light - very long periods of bleeding/spotting. Doesn’t feel right.

I should say that I have the added confusion of being peak perimenopause so my hormones are nutty anyway - even without the endo! I note you’re on visane, I’m on zalkya, no idea if one is better than the other.

I’ve another consultant appointment in February and if things don’t improve I’ll be asking for alternatives again. It’s so difficult to know what is best. For all I know if I wasn’t on it the pain could be twice as bad.

I wish you luck with the next few weeks, I really hope it settles for you. I know it has worked for many women, but we’re all different I guess.