Dienogest London: I got diagnosed with endo... - Endometriosis UK

Endometriosis UK

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Dienogest London

cdlendo profile image

I got diagnosed with endo in France and got prescribed dienogest there. I just moved to the UK and I'm trying to transfer my prescription to my London GP, but they told me they don't have it/don't prescribe it. Any advice for getting a prescription here or convincing my GP to prescribe it?

18 Replies

Hi Cdelndo, I don't understand why they've said that.. I live in Wales and got prescribed dienogest through the NHS, literally yesterday. Surely if I can get it here in Wales, you should definitely be able to in England? I'd get a second opinion!!

cdlendo profile image
cdlendo in reply to Purpledisco

Thanks - based on everyone's responses it seems this is a problem in England only, just my luck! Hopefully it gets approved here soon and then it'll be easier to access.

My consultant told me about dienogest but in the UK, it’s not yet on their list of medications they can prescribe. I’ve had a lot of issues getting it through my GP with my consultant advising me to change GP practises to one that does. It’s also very difficult to get the medication even if you have been prescribed it. Currently I am having to get this medication from abroad. My advise to you is if you can still get it from France, it might honestly be the easier option.

cdlendo profile image
cdlendo in reply to Maxyy93

Ah yes that's what everyone seems to be saying - how frustrating! I think I'll try to keep getting it from France but how are you getting yours from abroad? Just asking because at the moment I'm having to travel back and forth a lot which is expensive, ideally I'd love to just order it online and get it delivered to the UK.

Maxyy93 profile image
Maxyy93 in reply to cdlendo

I’m currently getting the medication from Africa! We have a family friend who is a doctor so I’ve been getting private px that way and asking friends and family that travel there to get the medication to me (that’s how desperate the situation has become). So getting the tablets from France doesn’t sound too bad. If you have family/friends there you can always get them to post them to you ahead of time I suppose

It’s not licensed in England yet so if you can keep getting it from France that’s probably you’re easiest option!

Thanks for the info, that's really helpful!

It has been licensed in the UK for over 2 years - since Feb 20.

Oh really? Where are you getting that info? I was trying to get it a few months ago and this is what I was told!

The NICE BNF

GP's can't prescribe it unless a consultant has requested it for you.

I wrote a post on here 2 years ago when Zalkya was starting to be distributed in the UK. Whether or not it is available will depend on whether the local Area Prescribing Committee has yet approved it to go in their formulary but at that time several London boroughs were able to get it.

healthunlocked.com/endometr...

cdlendo profile image
cdlendo in reply to Lindle

That's really interesting - it sounds like maybe GPs (or mine at least) might just not have the information about it

Lindle profile image
Lindle in reply to cdlendo

It's not available in all health authorities

I have just posted on the group I run and several have come back already saying they are on it in various parts of the UK on the NHS. If you would like to pm me I can give you the link to the group and you can then join and read the replies.

cdlendo profile image
cdlendo in reply to Lindle

Just DMd you, thanks so much!

I'm currently on dienogest but it's also called zalkya..I live in the north east of England and havnt had a problem with getting this..been on it for three months my next 3 month is due soon

I’m on dienogest too. I’m in the south west of England … was prescribed by my consultant. Just about to start my second month of tablets.

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