Experiences of Dienogest/Zalkya?

[puzzleprincess]

Currently taking the mini pill which I started around 4 months ago, but unfortunately I am still in quite a lot of pain on a daily basis. My specialist has suggested dienogest for my next line of treatment but I am absolutely terrified of the side effects I have read on the internet. I can deal with having low mood, but I am worried about hair falling out or vomiting (I have a thing about being sick)!

Just wondering peoples experiences of this medication? Especially if the mini pill wasn’t working for you?

[Circe3]

I am in a similar situation, on mini pill Cerazette and feel it’s causing more damage, thinking of going on Zalkya but scared I will have the same issues if not worse.

I am thinking to come off the synthetic hormones all together and try to treat it with diet and supplements.

I have read good reactions to Zalkya but again it’s so different for each person. If I find out anything useful I will let you know

[puzzleprincess in reply to Circe3]

Thank you!

[Hariyama06]

Hi Puzzleprincess, I havebeen diagnosed for adeno and endo about 17 yrs ago and tried so many progestogen pills as my endo is so sensitove to estrogen. If I bleed my cysts blow up to unbrarable sizes. I was given cerazette which is ok in stopping the bleeding but if i wish take time off it due to its daily side effects i get worse. I got the chance to be checked privately and outside Uk and was given dienogest/visanne brand by Bayer. It helped me immediately and have been taking it for nearly 5 years without side effects as cerazette. The gyne also gave me probiotics supplement to counter possible stomach upsets that can cause vomitting or diarrhea. Which helped so much. Returning to Uk, i was informd that zalkya has been pulled out of the market and dienogest/ dimetrum brand is the only available which you have to pay by yourself. I recently got them at Boots but am still finishing up my visanne brand for another month. Hopefully, anyone on Dimetrum brand can speak up about their experience. I will let you know if the Dimetrum is any way near or off compared to the visanne brand. Both are Dienogest only produced by different pharma.

Feel free to send me a dm if you need more info.

[puzzleprincess in reply to Hariyama06]

Thank you for your response! It’s nice to hear a positive experience as there doesn’t seem to be too many people in the UK taking this.

My specialist also thinks I have adeno (having a MRI next month to check) so glad to hear the medication has helped you in comparison to the mini pill.

[Naribeth1975 in reply to Hariyama06]

Hi Hariyama,how can I contact you directly. Im interested on your post. Thank you for reading

[Hidden]

Hi,

I recently stopped taking my hormone medication, but was prescribed Dienogest (Zalkya) to take with the POP (Cerelle) for 11 months.

Initially it reduced my pain quite a bit, but not completely. I bled lightly for approx a week or two and then my periods completely stopped. Overall I would say it had advantages (no periods/reduced pelvic pain/improved bladder and bowel function) but these were outweighed by the side effects (deep depression/brain fog/crippling fatigue/joint pain/loss of libido/acne). I have also noticed a few small bald patches on my head that I can't be sure I developed during use or after I stopped taking Dienogest. I have still not resumed my periods (it's been 6 weeks since I stopped using it), so it does take a little longer than the pill for your body to adjust to a new normal.

My friend used it for a few months, and she found it really impacted her mood too, but unsure what other side effects it gave her. She had to stop taking it due to the mood.

I believe it's a really individual experience and I think if you are able to tolerate the progesterone pill well currently, you may have less issues. I have now used all progesterone contraceptives (except the mirena) and found that my body simply doesn't like them.

Another note is that Zalkya is quite hard to get. There are often stock shortages, so you need to be really proactive to find which pharmacies use which suppliers and order your prescription in plenty of time. I'm in Scotland but found Boots and Rowlands were able to get it most often, and usually had to special order it.

Adding to what Circe3 suggested, I am now managing completely medication free, and feel a lot better for it.

[Louiseelaine in reply to Hidden]

This is so great to hear you are managing mediation free, I am really interested in trying this. What are you doing to manage your symptoms?

I been having difficulty getting zalkya each time it’s prescribed and this time the pharmacy gave me the dimitrum which I’m unsure about as some of the ingredients varied slightly one had lactose and one didn’t. Iv been feeling horrendously sick for the last two days and it’s when I started the new brand so it could be a coincidence but if anyone has any experience between the two brands I’d would be really helpful to hear.

x

[Tpower in reply to Hidden]

Can I ask how you are managing medication free please. I'm in a similar situation. After coming off prostap I an in terrible joint pain as well as endometriosis pain. Consultant has prescribed me dienogest I am too scared to take it as I have suffered terrible depression in the past with other hormone treatments xx

[Maxyy93]

hello. I tried I think 2 or 3 different mini pills and they all made me bleed every single day. When I had surgery, I had the coil put in which didn’t ease my pain or stop bleeding.

My doctor recommended dienogest to take alongside the coil. I’ve been taking it since February. I have to say I practically have no pain with it at all. However, I have been bleeding since March but worked out it was that my coil had displaced and had it removed a few weeks ago. This has improved my bleeding greatly to just spotting once a day and I had the coil for a year and 7 months so I’m hoping my body is just in a transition phase from having the coil and the bleeding will stop. So I’m trying to be optimistic.

Hopefully you will have a better experience with it should you go with it.

[puzzleprincess in reply to Maxyy93]

Wow to say you practically have no pain sounds amazing! Hoping I get good results like that because I am so sick of being in chronic pain.

I hope your bleeding clears up soon and you’ll be feeling better soon x

[Cleo45]

Hi, did you take the medication and what was your experience? I have been prescribed it just today and I am also scared of the wide effects. I have stage 3 and have already had 3 surgeries

[puzzleprincess in reply to Cleo45]

Hi,

I did and I am still taking it while I await excision surgery. I was worried about the side effects, but dienogest has really worked for me! It took a bit of adjusting and my pain initially got a little worse, but now I would say my pain is 95% better! I have been taking it for almost a year now though. It really gave me my life back, as I was struggling with just doing the day to day before I started the medication. I did feel emotional and down when I started it (I have had the same effect with other hormonal treatments) but unlike other treatments I have had, my mood levelled out after a while and I feel pretty much like my normal self ☺️

I am hoping to TTC after surgery, but I would definitely go back on this in the future if the normal mini pill didn’t work again. The only thing that puts me off being on this long term is the risk of insulin resistance and I have seen things about effects on bone density

Hope this helps and you get on okay with your treatment!