Dienogest

[Ljmajor86]

Hi everyone.

Just looking for abit of advice.

I’ve been on prostap injections for almost 4 years now. I have stage 4, had over 9 surgeries for endometriosis over the last 9 years and the only thing that has ever controlled my endo symptoms and given me a lease of life has been the prostap injections. Obviously I’ve been on prostap a lot longer than recommended because nothing else worked and I was growing cysts & having surgery every 8-12 months like it was on sale on any other treatment. It really gave me my life back. The only downfall was weight gain & still having endo belly. I put on around 4 stone and have never been able to get rid of it but I took it on the chin because I had my life back.

The last 4 years have been bliss with only one surgery in all that time. Which I see as a great success. It really helped me live a normal life again.

I was prescribed HRT with the prostap but I ended up bleeding constantly on them which basically was pointless. I bled constantly for over 6 months so I took myself off them & went back to not bleeding. So the specialists were happy aslong as I had regular checks (bones etc) and luckily I’ve been fine.

I’ve had lots of specialists over this course of time and my newest specialist has told me to come off prostap and has given me “the new wonder drug” dienogest. Im worried this tablet isn’t going to be as strong as the prostap. Does anyone here take it or has gone from prostap to dienogest? I’m very worried as my endo is very severe & grows back at the speed of light. Let’s just say my last surgery without prostap I had a cyst the size of a VERY LARGE MELON around all my organs and I was in surgery 8 hours to remove it and the endo had grown through my bowel walls als, I was very sick for a long time. Bed ridden for a year with all this mess, I’m terrified I’m going to go back to that point of my “life” again. I’m worried they are just finding a cheaper alternative without taking my severity seriously.

[shadyshaderton]

Hi Sorry to hear about your experiences and totally get how worrying it is when they want to change your meds which have made such a big difference to you.

I didn't think I had heard of dienogest but think maybe I was tried on it before I was last put on prostap and it didn't agree with me. My body does not seem to tolerate contraceptive type pills and similarly end up with constant period. Prostap has been good for me too.

My understanding with prostap is as you say it's ok long-term if you have add back therapy to prevent things like osteoporosis

I would say go back to your current consultant with an outline of your history (if you've changed hospitals as well as consultants like I have they don't have all your history ready to hand so short bullet point list can help with discussions) and a list of concerns you have about being switched to this new tablet. Does it still keep you in menopause or is it more like birth control is one question I would have of I was you. And if say no to being kept in artificial menopause following it up with how will it prevent your Endo from becoming less quiescent as it has historically when on similar types of medication.

[Ljmajor86 in reply to shadyshaderton]

Thankyou I will, it’s still the same hospital/clinic I’m under but the specialists seem to change every year or two now. I have agreed to the dienogest for now to see if it is the medical drug they claim it is.

I’ve also not done well in the past with other contraceptive pills, it’s usually about a year-ish my body stands it then the endo takes over again. If it doesn’t work out I’ve asked to be put straight back onto prostap & will fight to be put back on it x

[HedgehogMad]

Hi lovely, there have been studies comparing dienogest to prostap and they have similar rates of endo symptom and disease control with dienogest having much more tolerable side effects overall. Of course this is over a study population so individuals may have different responses but on a personal note I have been put on dienogest and it's brilliant. Minimal pain, no bleeding and no side effects really that bother me. I'd say it's definitely worth a try.Happy to send you the study if that helps reassure xx

[Ljmajor86 in reply to HedgehogMad]

That would be great Thankyou x

[HedgehogMad in reply to Ljmajor86]

pubmed.ncbi.nlm.nih.gov/340... is one trial comparing GnRH agonists (eg prostap) with dienogest after surgery for deep infiltrating endo

fertstert.org/article/S0015...

And this is a good review of the two treatments

They are both written for medical professionals /research but hopefully you can unpick enough of it to get the gist 😊

ncbi.nlm.nih.gov/pmc/articl...

And another review article on dienogest

There's loads of research out there in favour of it. I think you just have to try it to find out if it works for you! I have had awful side effects with desogestrel and the combined pills but have been absolutely fine with dienogest thankfully (had some bleeding and pain for the first few weeks but that settled fairly quickly)

[1Poppy1234]

I had desogestrel and it did absolutely nothing for me I stuck with it for three months upping the code etc and had to go back on decapeptyl jabs. Hope it's effective for you. Different things sometimes have different reactions to things don't they. 🤞

[Flewks]

hi! Not exact but I did it the other way round, Dienogest then ended up on pro-stap. I had tried nearly everything when specialist prescribed Dienogest, it isn’t a birth control but I was told it’s new and really good and can reduce estrogen etc (it doesn’t put you in menopause tho) so I was very hopeful but it was the worst thing I’d tried making my pain worse and causing me bleeding I lasted 3 months which felt like eternity but I was told it can take 6 months to work but I couldn’t stick it out any longer. I did read positive comments from endo sufferers on it so I may have just been unlucky and everyone’s different. I started on pro-stap last year and it’s the first thing to properly help and take most pain away and give me my life back too! Same as you any HRT causes me to bleed and brings back some of the pain, I’m on my 3rd type still trying to find a HRT I can cope on as my specialist said I can’t be on the injections without it said no one will prescribe me them without! Which reading your post I now know isn’t true.

It’s worth a try as everyone is different and it may work for you especially going straight from the injections to it as your levels will be at 0 to start and if not you’ve got the injections to go back to as fall back - good luck!! Xx

[Ljmajor86 in reply to Flewks]

I’m so sorry you’ve been through such a hard time too! I’m nervous but willing to give it a try but if it just starts everything back up I’ll tell them I need the prostap again. Fingers crossed & enjoy the new lease of life on the prostap ❤️ it made such a difference to mine x

[Ladybug09]

Hi, I have grade 4 endo and am on the waiting list to have a fallopian tube removed and a few bit including my bowel unstuck…. I was on Zolodex injections for 3 months but came off due to side effects. Am now on dienogest, only been on it for a month so far, all my previous side effects have pretty much gone now, no bleeding so far. I would say I’ve had more bloating and sensitivity to food. Also I’ve had some niggly pain in my stomach and dull ache in my groin the last week, nothing compared to my usual endo pain but I do worry it will get worse. I am relieved the hot flushes and sweats have gone now though, also my rage and low moods have also gone. Hope this helps.