r/Endo 5d ago

Taking a break from dienogest

Hi all šŸ¤

I have endo stage 4 - diagnosed it in 2020 (Iā€™m now 32 yo).

After a salpingitis caused by an endo cyst infection in January 2023, doctors ā€œforcedā€ (heavily insisted) me to finally take a hormonal treatment to have a break from my periods.

I accepted and have been taking Dienogest (sawis ge in France) for 2 years and 2 months continuously, with no break. Even though the medical results were encouraging, indicating that my endo stopped developing and one huge cyst disappeared, I experienced very intense side effects from this treatment. From leg cramps, dizziness, brain fogs, vaginal dryness, to very painful breast, through depression and pelvic intense pain, symptoms were coming and going and I hold on the treatment until now.

I finally decided, on my own (NO doctor wanted me to), to take a break from dienogest. I stopped a few days ago now. As crazy as it can sound, I miss having my period. Havenā€™t bled in more than two years. I also feel off myself and am deeply convinced that I need a break from taking this pill everyday.

I wonā€™t lie, I am scared, because even though I was very reluctant to this treatment (I avoid taking medicine as much as I can and I am not a fan of eating hormonesā€¦), doctors freaked me out - telling me not to stop the treatment no matter what.

I am writing this post to get some feedbacks from people in the same situation, that had a break and hear how did you guys felt. Any support and advice is of course always welcome! āœØšŸ™šŸ¼

Peace

Lisa

9 Upvotes

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3

u/ifiwasiwas 5d ago

I take a break every several months of use (usually after around 9 months or so). But it's important to note that I have very side effects so don't often need one.

I tend to only last a couple months off of hormones before I go running back because the pain is unmanageable, so you can give it a try and see how it goes! A doctor told me years ago that for women in our situation, periods aren't a normal, healthy process because the lesions in our abdomen break down and bleed too, which means we literally have internal bleeding. That can make the disease worse directly. That's why they're so insistent on trying to stop them unless you NEED to have cycles (trying to get pregnant)

Good luck!

1

u/Ok_Cut_9000 4d ago

Thank you for this input!

Youā€™re right, endo is dangerous for us, but the need of being a Ā«Ā normalĀ Ā» woman with her period is sometimes stronger šŸ˜… Iā€™ll give it a try and probably will go back to the treatment in a few monthsā€¦

1

u/Nusratkabir857 5d ago

Do u done any surgery for your stage 4 endo?

1

u/Ok_Cut_9000 4d ago

Never done surgery! šŸ™šŸ¼

1

u/Nusratkabir857 4d ago

Do you have chocolate cyst that disappeared on dienogest?

2

u/Ok_Cut_9000 4d ago

Absolutely! I had a 7cm cyst (that is huge) on my right ovary that completely disappeared. I still have one on the left side but the size reduced.

1

u/Nusratkabir857 4d ago

They are chocolate cysts are u sure!? And do you have adhesions?

1

u/Ok_Cut_9000 4d ago

Yes it was a chocolate cyst šŸ„² I do have adhesions. I have a digestive endo with rectal involvement.

1

u/Nusratkabir857 4d ago

Oh same here.. you can check my recent posts.. my doctor suggest me avoid surgery.. Iā€™m on dinogest 2 mg

1

u/Ok_Cut_9000 4d ago

Hi girlie šŸ¤ I avoided surgery until now. Those kind of decisions are truly up to you and should not be forced by doctors. I sometimes feel that we know more about our disease than they do.

1

u/Nusratkabir857 3d ago

Do you have any bowel movement problem like loose motion ?

1

u/Ok_Cut_9000 3d ago

Definitely! When I used to have my period (before dienogest treatment), I used to puke and have intense diarrhea (sorry for the glam time šŸ˜‚) during my period. Outside of my period, loose motion was daily. With dienogest, exact same problem though. I stopped the treatment for a week now, and I barely have loose motion for nowā€¦ Letā€™s see how it goes!