I can't find Dienogest anywhere - Help!

[Catl88]

I had a laparoscopy in December and I was diagnosed with endometriosis, and subsequently had it excised. I was prescribed Dienogest (or Zalkya) to take for 6 months post-op as suggested but the surgeon, however it is a complete nightmare trying to find a pharmacy that supplies it.

Every time I request a repeat prescription, I have to wait an extra few days on top of the prescription wait time, for the pharmacy to order the medication as they never seem to have it. It's a pain but I have been able to eventually get it before I run out, until now.

I want to keep taking it as prescribed, but I have essentially been forced to stop as I can't find it anywhere and I've now ran out after over a week of being rejected by pharmacies. It's so inaccessible and I'm really stressing out.

Has anyone had a similar experience, what did you do? I've been to multiple chemists, called 111 and my GP but not gotten very far. Any advice is much appreciated x

[claudia_91 Moderator Endometriosis UK]

Hi Catl88

Hope you are recovering well from your surgery in December.

Sorry to hear about the challenges in finding Dienogest as prescribed by your consultant. What a nightmare! Could you possibly try contacting their secretary and asking if they could advise where to obtain the drug from? Possibly the hospital pharmacy?

Sorry not to be of more help. Hope you find relief soon.

Take care,

Claudia

[Hidden]

Hi! Sorry for the late reply.

I have had the same issue last week getting my prescription. I order mines well in advance as like you say it takes ages to get it in. I was told the pharmacy suppliers are all out if stock just now, with the earliest deliveries being 22 July.

I tried 6 pharmacies before I found one who had a supplier who could outsource it for me. I would phone around (if you can) all of the independent branch pharmacies (not major chains like boots or Lloyds etc) in your area. Just explain its a special order item out of stock by your usual pharmacy and ask if they can do anything to help get it in. I eventually got mines today after a week of trying from a Rowlands pharmacy if you can find one near you. They managed to outsource it for me. Another option is to call round the local hospital pharmacies, they will likely have more suppliers than small community pharmacies.

Hope you get it!

[zbcq]

I had the same experience … had tried 11 pharmacies with no success. Found it at one in Marylebone in London. If you;re London based, try the Marylebone pharmacies. Also, if you ever travel to France get it there. I had my surgery in France and there the drug has been approved for longer i believed and it’s more common to have it prescribed, there is a cheap generic that the pharmacies have. Good luck … literally went through the same stuff.