Should I start taking Dienogest (again)? - Endometriosis UK

Endometriosis UK

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Should I start taking Dienogest (again)?

KatKittyKat profile image
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I was diagnosed with endometriosis back in april this year and they have found 2 chocolate cysts on both of my ovaries, one measuring 4 cm and the other 5 cm. Although the doctor informed me that the main solution would be a laparoscopic surgery, I cannot afford it at the moment.

The doctor recommended me Dienogest for one month, which decreased one of the cysts by a few millimeters. However, I informed the doctor about the side effects (deteriorating mental health, increasing anxiety, and constant hot flashes), and she advised me to continue the treatment for the next 7 months. Although the doctor knew that I am a smoker she did not warn me about the risk of blood clots, which I have only found out later by researching myself.

I did not start the treatment again as I am scared of the side effects, especially the ones related to my mental health, and I continued having my period during the past 3 months. I am scheduled in a few weeks for a new examination outside of my home country, hoping for an alternative treatment and opinion, but my 4th period is about to come.

Should I skip starting the Dienogest this time as well, or am I only making things worse? Can I stop the treatment after 2 weeks, if the next doctor would recommend me a different one, or would that cause any side effects?

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Blueolivemama profile image
Blueolivemama

Hello KatKittyKat,

Speaking from my own experience, having taken Dienogest for almost 6 months now, I have not experienced any side effects you have mentioned as a result of this medication. I've also not had a period since taking the medication which has been a relief.

Have you considered trying to give up smoking? While the exact mechanisms are unknown, smoking is understood to increase levels of oestrogens which may induce the growth of endometrial tissue.

To reap the benefits of any medication, I personally feel it's important to ensure you are doing everything in your control to optimise your health. Nutrition, sleep, movement, getting sunlight, journaling, all these things reduce cortisol in your body. Less cortisol equals less stress and inflammation, supporting better physical AND mental health.

Try not to be scared by the reported side effects, it is not to say that everyone will experience them and your anticipation could prevent you from what could be a very successful treatment.

Wishing you all the best 😊

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