Dienogest

[HHuss]

Hello my loves- I’m writing this to anyone that might be able to shed light on their experiences in Dienogest. My gynae dr moved me from Cerelle contraception to Dienogest as that apparently prevents the growth of endometriosis… I had my laparoscopy surgery in Nov 2021 which confirmed what I said all my life as a young girl to a grown adult- I have endometriosis. Post op has been interesting… the pain is still there and I don’t know what to do - is there anyone on here that has had the surgery and come off contraception completely? If so, how has your experience been if you don’t mind sharing? It’s gotten to a point where I don’t know what action to take. All these drs have opinions, there’s all this noise and yet what I’m doing isn’t necessarily working.

Thank you! Love from a fatigued stressed and broke 27yr old

[moonghost]

I didn’t take Dienogest post surgery, but I did have the Mirena coil which is another progestin hormone intervention. I had a laparoscopy and in the following year I had six months without any hormonal medication and then I had the Mirena for six months, which… I’m no doctor, but I think it actively triggered my endo and made it worse by making me bleed for six weeks straight, and then two weeks out of every four, and made me feel like I wanted to die, until I took it out. I took it out against the the advice of my GP, who said if I took it out my periods might be even *longer* because of my stage 4 endo. I thought to myself that seems unlikely, took it out despite her advice, and my periods immediately went back to normal and I stopped feeling suicidal within a week.

So, it’s up to you. It is not easy navigating these things. One consultant I spoke to about it made me feel like I was a conspiracy theorist when I even suggested I thought birth control made my endometriosis worse! There is almost no literature available on progesterone intolerance. I don’t take any hormonal contraception currently, and have also refused Prostap and add back hormones as prescribed by the surgeon who will be doing my next laparoscopy, for similar reasons. Time and again I’ve been extremely sensitive to hormonal changes, taken them anyway on the advice of GPs and consultants, and suffered because of it.

Do what you think is right - I would suggest keeping a log of how you feel and what your symptoms are while on it, and off it, if you choose that route. If it turns out things were better on it, you can always start taking it again!

[HHuss in reply to moonghost]

thank you so much for sharing this! I’m so sorry you had an awful experience with the coil- almost everyone I have spoken to has a horror story of their time on the coil. It’s not fit for purpose I don’t know why they are so adamant we go on it… I’ve been feeling like this for years if I’m honest and I’m always listening to GPs and drs advice above how I actually feel. I’m really sensitive to the hormonal changes etc too and the side effects are just becoming more increasingly difficult to manage. You’ve definitely given me food for thought… thank you so much and I hope you’re keeping well fellow endo warrior xxxxx

[Pizzaaddict in reply to HHuss]

Hi,

I’m almost 20years down the line from diagnosis and have had quite a number of interventions in that time! I’ve always found the pill or other progesterone based hormones very difficult to tolerate and like moonghost I had to remove my mirena coil because the anxiety I experienced was intolerable. My Consultant was very concerned that I didn’t have any hormonal treatment after my last lap, and he was right to be, my symptoms returned within one year and by the time I had my most recent surgery the endometriosis was almost completely obstructing my ureters and the op took 6 hours.

I’ve since started Dienogest on the recommendation from a clinical fellow who has researched tolerance of different hormonal interventions. She discussed with me that like HRT, there shouldn’t be a one size fits all approach to contraceptive prescription, and that often a few different options need to be tried before the right balance is found. She took my history and felt I had an intolerance to a particular type of progesterone which is found in most of the common mini pills, but not dienogest. I’ve now been on it for 2 months, and am finding my mood etc is very stable and other side effects like bloating etc are quite tolerable in comparison to the Endo.

I would say give it a go, but if it’s not right for you go back to your Consultant and ask to stop or try something different. Unfortunately many Endo treatments are a bit trial and error!!!

Hope your symptoms improve soon xx

[Ballsss in reply to Pizzaaddict]

After being on dienogest for 6 months after my removal op I'm a complete mess like i knew i would be, i felt ok for the first couple Of months but now I'm suicidal like i was on any other pill or mini pillnive taken. I'm absolutely furious that again i did as the doctors told me and again i was right about how it would effect me. The doctors actually look at me like I'm mad because i refuse to take something that makes me feel this bad or just suggest taking anti depressants long side them. Nope.

This sadly means that it is only a matter of time before the endo starts progressing again. Thats the choice i have, take the pill and have no pain but be suicidal or have endometriosis and also be miserable. I dont want to choose any of these options. Sorry to be down but it really is that shit. Ive stopped taking dienogest as of this morning. So hopefully my mood will start improving.

But i will say as it's our only treatment option, i do suggest trying it as it may work for others and i hope it does. Just don't suffer on it for to long if it doesn't work. Good luck everyone

[Malirish]

I had the Mirena coil post surgery and I was absolutely dreading it but once it settled down it’s been a life saver! It’s taken away so much of my pain, still have bad days but compared to the pain before it’s minimal.

Recently it’s been getting a bit worse again but I found out that my surgery was done incorrectly last year so my consultant has put me on Diengost alongside the coil.

Bar the hot flushes it’s been good so far. However it looks like I’m going back in for another surgery soon to fix what they did last time but hoping that will compliment the tablets and the coil.

It has to be the right choice for you, it’s trial and error and all the side effects mentioned can be really off putting but it’s worth trying different things and seeing how it goes. Everyone’s so different with hormonal treatments!

Hope this helps x

[Maxyy93]

I had surgery in March 2021 and I had the mirena coil which didn’t stop my pain or bleeding. My consultant then suggested I try adding dienogest with the mirena coil. My body reacted badly bleeding for 9 months straight and got heavy to a point it displaced the mirena coil so I had to have it removed.

I have been taking dienogest only now since February and honestly it’s been a life changer. My periods have completely stopped and I have not needed to even take a paracetamol as my pain is virtually gone. I had tried many mini pills and injections which didn’t seem to agree with my body. So happy I have found this tablet as I feel like I am near to normal after 4 years. Only trouble is I can’t seem to get a prescription for it and I’ve been told it’s also hard to get even once you get a prescription so currently been getting it abroad whenever I go on holiday.

Wishing you all the very best and hope you find something that works for you x x

[kismelo]

Hi, in the UK it's called Zalkya. I just started 5 days ago on nhs prescription. 3boxes/£9.60.

[Goiaba]

Hi lovely. Im sorry this has been a lot. I think it is a bit sad but true that it doesn’t matter what we try and how much we fight back, there’s no cure for endo and it might come back despite all efforts. What we do is try to improve our quality of life and manage pain. Accepting this made my life easier, mental health wise.

I had my first lap in 2020, didn’t take anything after that and was living the best life for about 10 months when my symptoms started again. Was told it came back because I had no hormones to manage the condition so I was listed for another surgery and agreed to fit the Mirena coil. Had that and the lap in 2022. 9 weeks after that I was in hospital flaring up only to find out it came back and I was listed for yet another surgery, this time a total hysterectomy (I’ve got adenomyosis too) and removal of my remaining ovary, meaning the hormonal treatment also didn’t help.

I’ve been on Prostap for about a year since placed on the waiting list and this had been the best I’ve been in years. Still, my latest MRI showed I’ve got 3 new endometriomas so even the chemical menopause didn’t stop it from growing. Hopefully the surgical one will slow things down and I won’t have to have keep having surgery every year 🤷🏻‍♀️

[Ballsss in reply to Goiaba]

Wow this is awful i really feel for you. I admire your positive attitude and i hope to be able to be in a place where i can accept it also, but right now I'm in a place of anger and feeling rather sorry for myself. I know i have every right to feel this way and will move forward to acceptance eventually but right now i feel like i need to be angry! Lol.I wish you all the best

[Blueolivemama]

Hi HHuss,

Dienogest has by far been the best treatment, for me.

You have to give the body time to adjust to new medication but after 6 months, I can only say that I wish I had taken it sooner!

Whilst meds are necessary, I'm a strong believer that we can do a lot of self-healing with the right guidance. Weight management, managing hormonal imbalances in the body through nutrition and movement, reducing stress (getting rid of that cortisol!)

There's a world of information out there and it's certainly a process to finding what's best for you and your body.

I really hope you find your way with it ✌️