Visanne/ Dienogest

[EndoRabbit08]

Has anyone been prescribed this?

Did they work? Any side effects?

It seems to be the golden drug for treatment of endometriosis. I haven't heard of it until now. 🙃

Would appreciate any input

Thanks xx

[Chinaxo]

I’m keen to know too. I know it’s now available in the uk on the nhs but haven’t heard of anyone in the community being prescribed it so far.

[Jenova]

After the first surgery, I took "Visanne" (dienogest 2 mg) for six months at the appointment of a doctor without a break. The drug did not work for me and did not fit me because I felt all the side effects (alopecia, shortness of breath, tachycardia, sleep disturbance, stomach problems, acne etc.I got almost all the side effects that could be, in addition, I got a subfebrile temperature, but this is not indicated in the side effects of the manufacturer. And I still feel old and ugly and disgusting. It's like these pills drank my life away. Because of the pills, I had suicidal thoughts, so my doctor canceled it. I am 34). After the second surgery and now I take "Duphaston" (dydrogesterone 20mg). My body takes it better. The pain's gone completely, but... recently I did a control ultrasound and they found 2 foci on the sigmoid intestine (bladder and ovaries are clean now). One of the foci damaged the wall of the intestine🤷‍♀️

[EndoRabbit08 in reply to Jenova]

Oh dear. Sorry to hear that. As with all modern medicine, there's always the side effects to think about. Reason why I've always been so skeptical.

Thanks for your input. Appreciate your honesty. This only strengthens my belief In using a more natural approach to help heal my symptoms.

I really wish you health from now on. Sorry we're all going through this relentless condition.

All the best

Xx

[Jenova in reply to EndoRabbit08]

Thank you so much. I sincerely wish you to stop endometriosis, and l send you the warmest embrace.🤗

[EndoRabbit08 in reply to Jenova]

Thank you. You too. Hugs back!! Xx

[claudia_91 Moderator Endometriosis UK]

Hi EndoRabbit08

Thanks for your post. I have heard of Visanne but have no experience of using it. Please remember that, as disappointing as it is for those of us who fight this battle against endo every day, there is no golden/magical cure for endometriosis. Take care when choosing your treatments and be sure to discuss your options with an endometriosis specialist 😊

Best wishes,

Claudia

[EndoRabbit08 in reply to claudia_91]

Hello there.

Yes I do realise there isn't a cure, let alone a magical one. 😄

It's been a long bumpy road and I've learnt the hard way that there really isn't much that can be done. Treatments are a temporary fix and are only there to try and manage symptoms.

What's worked for me mostly is fixing my diet and eating cleaner now, I'm almost vegan (can't stop eggs) . I am also gluten, dairy and sugar free.

I still get flare ups and there are times when pain is manageable other times not so much. It's a confusing condition. Feeling frustrated and lonely are feelings I've had to get used to.

Was researching maybe going on the mini pill to help with heavy bleeding ( and hopefully control endometriosis - says she)

Then I came across Visanne and just wondered about it.

Onwards and upwards.

I'll take each day as it comes.

Hopefully someday a proper cure can be found.

Xx

[BookBimbles]

I asked about this when it was licensed in the UK and I first heard about at the end of last year, and whilst on the waiting list for a laparoscopy +/- excision. GP couldn’t prescribe it and not sure I actually heard back from the Gynae Consultant at the time. I tried other contraceptives whilst waiting, but to be honest progesterone pills really don’t seem to suit me, due to side effects. Trying the Mirena coil now, inserted during surgery, so I’ll just have to see how that goes.

[EndoRabbit08 in reply to BookBimbles]

I was just about to ask my GP for the mini pill. Oh dear 🙁. What side effects did you get?

Xx

[BookBimbles in reply to EndoRabbit08]

I had very frequent periods / bleeding, after the first month of taking the mini pill. They were very frequent periods of varying lengths. And when not having periods I was spotting or having very light bleeding. I also still got PMS (headaches etc) and period pain. So this defeated the point for taking it - so I stopped after 3 months. The pains I got on the mini pill weren’t any worse to what I was used to though.

So to be honest I’m not sure the Mirena coil is going to be much better, particularly as I have had two period bleeds in the past 5 weeks, but it’s early days and over the past few days since my last period, I haven’t had spotting. So maybe it’ll be ok.

During surgery they did excise superficial endometriosis, I don’t know if that makes any difference to how your body responds to progestin? The mini pill was pre-surgery.

But they say it’s all individual, trial and error - sigh.

Have you tried any formal nutritional support or just changes your diet on your own?

Xx

[Lizpascoe]

I've just been formally diagnosed after years of suspected endo. Been on almost every contraceptive, nexplanon, combined pill, injections and had constant pain.

I've just been given this pill for my endo as an alternative to surgery (they don't want to operate because I'm fat). I'll let you know how I get on!

[EndoRabbit08 in reply to Lizpascoe]

Hello there. I'm glad you've finally gotten a diagnosis. That's half the battle over!

Oh dear. I haven't heard of someone not being operated on because of their weight? Sorry to hear it.

I really hope the pill gives you relief. And yes please let me know how it goes.

All the best.

Xx

[RZ94]

Hello,

I was on Vissane for 6 months and it was amazing in the beginning. It helped even reduce the size of my cysts so fast and I was so happy. Until I was rushed into A&E with Stroke symptoms and I had what they believe was a mini stroke and had very bad migraines for around a month after.

The doctor asked me to stop vissane while they investigate if it was the cause and I did for 3 months and during that time felt no migraines or cluster headaches. I tried taking one pill after 3 months and I had a very very bad migraine with stroke like symptoms (migraine with an aura) and was told to stop visanne completely.

Unfortunately, looking at the research vissane has one of the highest risks of stroke and migraines in any of the pills. I had no previous history of migraines/strokes and was 26 when this happened.

So i would say take it with caution and always always keep an eye on weird symptoms with it because at least to me, it wasn’t worth the risk.

Let me know if you have any more questions. Happy to help with my experience.

[EndoRabbit08 in reply to RZ94]

Hello there.

I'm so sorry to hear about what happened to you whilst on this pill. That's tragic😖😖

If anything after hearing this, I think I'll pass! I've never been a fan of taking tablets and always try and heal myself naturally as much as I can, because I was brought up like that. The one exception I made was iron supplements but even now I have just been told that I've got early stage iron overload and so I've had enough of tablets tbth!!!

I do understand that everybody is different and everyone reacts differently but I'm not taking that risk, no matter how small. I'm sorry it has taken your bad experience to make me realise that, ( I wish you never went through any of this) but I'm grateful that you've come on here and said it like it is. Thank you for sharing. ♥️

You know what? I'm at crossroads now. I don't know where to go next but hopefully things will start to make sense someday soon.

Wishing you health and happiness. Chat anytime. 💐💐

[RZ94 in reply to EndoRabbit08]

Thank you for your kind reply, I shared my experience in hope that it helps someone else. Because, to be honest when I started Visanne it was like a miracle cure; my cysts went down in size and I was feeling much better. But at the end it all comes with side effects, I was taking nothing for around 4 months after and my cysts are growing in size at a fast speed. So currently, I am on the pill and the symptoms seem to be a bit more manageable.

I think it might be wise to look into different options and choose whatever works best for you. Changing my diet into an anti-inflammatory diet also really helped me so much. I am not the biggest fan of pills, but sometimes they are an unnecessary evil and you have to decide what works best for you.

[anamarti]

Hi. I've been using Visanne since june 2021. I have deep pelvic endo + chocolate cyst 6cmx5cmx5cm. Since I didn't want the surgery back then, the specialist recommended this drug. It has improved my life so much! The only 2 side effects in my case:

- pain and cysts in breasts (only the first 3 months),

- gaining weight.

I am aware that we are all different and the same medicine acts differently in different people, but Visanne has improved the quality of my life and I've never felt better.

[EndoRabbit08 in reply to anamarti]

Thanks for sharing.

I'm glad it's improved your symptoms.

We all deserve some pain relief and to live a normal life again. Xx

[Hidden]

Hi!

I have been on Dienogest (Zalkya) with Cerrelle (mini pill) for 2 months. I was prescribed it after a private consultation with an endo specialist who wrote to my GP to prescribe me it on the NHS whilst I am on the huge waiting list for a laproscopy.

So far it has had good and bad points for me. The good is that since starting I've had no massive flare ups and my pain has been reduced. I frequently get pain in my back and hip that prevents me from walking, and so far not had this. I still however have a chronic ache deep in my pelvis just about every day.

Period-wise I bled for the first week on it, but haven't done so since (just finished week 8). I previously had heavy, painful periods with migraines and tender breasts. I also had break through bleeding and have previously been on the normal combined pill, low dose oestrogen pill and the implant all to no aviail. So am happy that it has so far managed to stop me bleeding.

The bad is that it has massively impacted my mood, and I no longer sleep. I've known a few people to say this is a common side effect, with depression being the biggest side effect in everyone I have spoken to. I have struggled a lot with low mood swings and been told from family that I've developed a short temper (I'm not completely aware of it). This has just been made worse by an inability to stay asleep and I've had frequent episodes of "brain fog".

I've also developed spotty skin, especially on my T-zone. I had clear skin previously, so this has taken some getting used to. I had also been losing weight but have stayed the same since starting the medication despite still continuing to diet and exercise, so weight gain may also be an issue.

I've heard it takes about 3-6 months for side effects to fully settle down, so am persevering. I think it is worth a try if you are able to have it prescribed and are happy with hormonal solutions.

[EndoRabbit08 in reply to Hidden]

Thank you for your reply. Appreciate the input. It's interesting the different side effects different people get. I've no idea where I'll be on the spectrum. Jury's still out I'm afraid. Going to have to think long and hard about this one.

Thanks anyway xx

[urubucomendo123]

I’ve been using dienogest for 4 months now and it has really improved my symptoms. A follow up MRI also showed my endo lesions did not grow and stopped internal bleeding, so so far so good! No side effects whatsoever, im 29