DIENOGEST ZALKYA TABLET

[Beige1994]

Hi. I’m currently experiencing pain in my lower bum and into my groin on one side which is so uncomfortable and at times debilitating. It occurs without fail the day I start my period and lasts between 10-14 days and comes back every single month. I’ve now been prescribed this tablet which I was told is fairly new to the uk (2 years old in uk) which is specifically for endometriosis. Has anyone tried this pill? Im a bit worried and I’ve looked online and has side effects such as severe bleeding which lasts for long periods of time and then sometimes stops periods all together. The symptoms on the leaflet says blood clots and breast cancer is a small risk but there is not enough evidence as the tablet hasn’t been around for long. This just worries me especially as I’ve never heard of it before and it’s so new that there’s not enough evidence for its efficacy. Has anyone been prescribed this? And has anyone experienced the same type of pain as I’ve never had this pain before and I’ve now had this pain for 7 consecutive months?

[Herbyvore]

Hi Beige1994

I’m afraid I can’t help you on the medication as I’ve also never heard of it but I do have the same pain as you. I have a deep pain in my left buttock which is horrendous and in the past has been diagnosed as piroformis syndrome and then more recently gluteal tendinopathy but I’ve always known it is linked to my cycle. It was so bad two years ago that I couldn’t physically get out of bed and ended up having to call paramedics as it doubled me over so severely I couldn’t stand.

I’m still waiting for a laparoscopy but it could be the endo is attached to the sciatic nerve and that’s what’s causing the deep glute pain.

The one thing I did have that seemed to work was electric shock treatment directly on the glute which I found did being some relief and also key hole stretch or pigeon pose in yoga to help stretch it out gently.

[Beige1994 in reply to Herbyvore]

Hi.

Thank you so much for replying! It’s nice to hear someone else experience the same symptoms (although I’m sorry you’re experiencing this) as other people I’ve spoken to have never felt this pain so have felt a bit alone with it and not listened too. That sounds awful! Mine was quite bad one month where I had to take a week off work as I could hardly walk without being in so much pain. It’s horrible!

Thank you for telling me your story. I’ll keep in mind that it could be attached to the sciatic nerve. May ask more to my doctor as I feel I always have to go to them rather than them explaining to me. So fed up of having to push them to do something. When I had my laparoscopy it helped with the pain straight away and I feel I may need another one but they seem to not want to do that at the moment.

I hope you get some more answers soon!

[Herbyvore in reply to Beige1994]

It definitely sounds like the same sort of pain so I hope you get it sorted too and if I find anything else out about it I’ll let you know ☺️

[Beige1994 in reply to Herbyvore]

thank you so much 😊

[parleystopaz0e]

Hi,

I’ve been taking Zakya over the past 6 months but it was prescribed for the purpose of preventing endo from growing back after excision. I do have less pain now but the surgery has probably had a bigger effect on that than the medication so I can’t say how good it is at reducing pain.

The serious bleeding, according to the leaflet, seems to be more of a risk if you have adenomyosis or uterine fibroids - it says dienogest could make that worse. I’ve not had any heavy bleeding - what I have had is spotting at weird times of the month and my periods have become a lot lighter but also more irregular. And in the first 3-4 months while the hormones are adjusting in your body I had worse side effects but then they got better. The only thing I’m experiencing now is that my mood is not great, I’m assuming it’s because of the medication but I can’t be certain. I also have suspicions it’s making me gain weight but again not certain. I’ve never been a fan of taking hormones and part of me wants to go off it but the other part is worried the disease will come back if I do.

If you look at the history of dienogest on Wikipedia it’s actually been around for many years, but it’s only recently been approved in the UK. I don’t know why it’s taken so long though. My surgeon advised me to take it for 3 months before we have a follow up to discuss how I feel on it and since I didn’t have any major side effects I decided to carry on. I suppose you could do that or not take it at all if you’re really worried.

The pain you described sounds similar to what I had and they found some endo on my colon. I still have a similar sensation at times but it’s way less intense. Have you had any scans, like an MRI?

[Beige1994 in reply to parleystopaz0e]

Hi!

Thanks for replying to me. That’s like me. I really want relief of the pain but do not like taking things like hormones as they don’t agree with me sometimes that’s why I’m a bit worried.

Think I might speak with my doctor a bit more before taking it.

I’ve had UltraSound scans and Internal probe thing but have not had an MRI for that area before.

[parleystopaz0e in reply to Beige1994]

Yeah, a chat with your doctor is a good idea.

The MRI won't be able to show everything but it might show things like adhesions or deep infiltrating endo so it may be able explain why you're getting this pain and if the bowel is affected.

Hope you get some relief soon!

[Beige1994 in reply to parleystopaz0e]

thank you! 🙂

[zanyv]

I was prescribed this in October 2020 and they wrote to my GP to prescribe it! My GP wanted to query it and there was a back and forth with GP and consultants. December 2020 still nothing! March 2021 they decided to give me the tablets prescribed through the hospital.

I took them for 8 months and no changes to my symptoms whatsoever! This stopped my periods initially like all other medications and treatments and the. I just bled through Jon stop for the rest of the months!

I have been through the mill, I’ve had 4 operations, had multiple contraceptives back to back I have also had the mirena coil, prostrap injections and zoladex injections too! Al help initially and then stop working! This was my last hope but nothing! The last time I had my operation I was pain free and had normal pain less and light periods for over 2 years! I have finally been put back on the waitlist for another one!

Not sure how else to help myself ☹️

Everybody is different and everyone’s symptoms are different, if you’re like me and will try ANYTHING for a bit of relief, try it!

Wish you all the very best and hope this helps xxx

[Beige1994 in reply to zanyv]

That sounds awful! Sorry you’ve been experiencing all of this. It’s so difficult because I feel the laparoscopy is the only pain relief in a way but at the same time we don’t want to be having operations all the time.

That’s what worries me about taking the tablet I’m still contemplating whether to start it or not. Need to speak with my doctor some more I think.

Thank you so much for telling me your experience. Hope you find some sort of relief soon! All the best too! Xx

[crbp]

I'm currently on diegnogest! My first surgery only relieved my pain for about 3 months - after my 2nd i got on dienogest and the pain didnt come back for 10 months.

it took about 2 months of adjusting to the side effects (hot flushes, mood swings) but after that they stopped and its been great. The pain has unfortunately come back but these meds absolutely prolonged the inevitable.

also most birth control pills will have side effects of clotting and potentially breast cancer.