Anyone tried dienogest ethinylestradiol to treat endometriosis?

As a women who has suffered with endo for the last 20 years (since aged 12), I've had every kind of treatment available (laproscopy laser removal/hormone/mefenamic acid/injections etc), and even some natural homeopathic remedies. I've recently moved to Germany and my doctor here has prescribed dienogest ethinylestradiol; Dienogest being a synthetic progesterone to treat the symptoms of endo and ethinylestradiol being a contraceptive which is combined with the dienogest. This treatment has been used in Germany since the late 70's, and contains no oestrogen, which is thought to cause/worsen endo. ncbi.nlm.nih.gov/pmc/articl...

My question to you is: Has anyone had the opportunity to take this pill before and were there any side-effects?

I thank you for the time you took to read my post and wish you all well for your battle with endo!

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  • Hi I have tried just Dienogest (without ehinylestradiol) in Japan. I was given only for 4 weeks worth of tablets and told to get more when I go back to England. However there isn't Dienogest in England.

    I was told this is the only meds which touch actual endo. I had it only for 4 weeks so all I had was a bit of spotting. Unfortunately I didn't feel any effect for my endo pain within 4 weeks. Side effects are so varies but it is a lot less of GnRH type of treatment.

    I wish I could have continued it in England. I hope you get a good results from it.

    Take care.

    xxx

  • Hello just to let you know my gyni doctor in the uk has prescribed me dienogest progesterone only but i can only get it from the hospital pharmacy as they order it from aboard.. it is to expensive for gps to get 😊

  • Hi, that's interesting. Please let me know how you get on with it.

  • I will let you know sure.

  • Dienogest with ethinylestradiol as a contraceptive pill combination and has been around since 1995. ncbi.nlm.nih.gov/pubmed/203...

    It is available in the uk now, and other countries under the brand name Qlaira.

    The combi pill, contains both dienogest as the progesterone element and the ethinylestradiol as the oestrogen element.

    Anytime you spot 'estradiol' in ingredients, whether in medication or foods, that means oestrogen for the purposes of battling endo.

    So if the drug you have been offered does contain both, then it is a combined hormone birth control or contraceptive pill.

    Not specifically targeting endo, but certainly one that you could take to have better control over periods.

    Use the search box on the green bar at the top of the page to Search for Qlaira - there have been recent discussions about it on this forum.

    There are however ongoing clinical trials in certain countries in the world including Germany of a new drug called Visanne. This is the one Shukudai is referring to in her post.

    This is Dienogest on its own - definitely no oestrogen and is specifically targeted at ladies with endo because of the zero oestrogen /estradiol content.

    It would work, by the sounds of it, in a similar way to Depo-Provera shots, if you have had those.

    Visanne is not available in the UK and won't be for some time yet until the various phases of drug trials are completed. Which means not that many forum members have tried it, but some have and there are comments on a previous discussion...

    healthunlocked.com/endometr...

    The combi pill Qlaira may be worth trying, but it is a low dose contraceptive, whereas the Visanne option without oestrogen is a higher dose of progesterone and may be better suited to battling endo if your Dr can prescribe that to you.

    Just be mindful that the countries where it is available are very limited, so if you are only in Germany on a temporary basis and moving away from there within the next 3-4 years you could encounter problems getting Visanne elsewhere if you do go on that and find it helps.

    The cinical trials are set to take 3-4 more years, and it's anyones' guess when they are completed, assessed and the UK decides it is safe enough and fit for purpose and allow it on sale here in Britain.

    Both Qlaira and Visanne are manufactured by the Bayer pharmaceutical company.

  • Hello just to let you know my gyni doctor in the uk has prescribed me dienogest progesterone only but i can only get it from the hospital pharmacy as they order it from aboard.. it is to expensive for gps to get

  • Hi,

    I am in Kenya and my doctor prescribes for me Visanne. I have used it for about 2 yrs and I find it to be very good. I have no pain symptoms but I don't get my periods which is just fine by me. My biggest problem with the drug is its availability. I have been waiting for it for the last three months. My other concern is that its not used a lot in the developed countries but again its on trial.

  • Hi,

    Thanks all for your replies.

    I had decided not to take this pill because I'm worried about a side effect mentioned - hair loss/alopecia, as I had alopecia as a teenager and believe me that was no fun. I've read several stories online of others who have had alopecia as a result of taking a contraceptive pill. I spoke with my GP about it, who said that every hormone that we take has hair loss as a side effect, and that this pill is an anti-androgen, which is also used to target hirutism (excess hair on body) and has good results. It also has good results in studies to improve acne.

    I need to use the pill also as a contraceptive, so I can't take the dienogest only version. After a lot of thought and worry, I've decided to try it, and took the first pill tonight. It seems that there is not much information available online about this drug, so I'll keep readers posted as far as possible on any side effects that I might have, as this might assist others who are offered this as a treatment.

  • Hi I have been taking Denille ( 2 mg dienogest and 0.03 mg de ethinylestradiol) for about 4 years (I'm 25) and I take it always continuously due to endometriosis, so basically no period or pain for the last 2 years! Gone are also my ovarian cysts and pain during intercourse!

    I did not gain weight (still my usual 46kg - ps.: i'm very short so this is a normal weight) or pimples or any kind of skin or hair problems.

    Every once in a while i'll have a bit of spotting but this is to be expected when taking a pill continuously.

    Of course every pill has a different side effect, but this one is a life saver for me!

    I live in Europe so I believe it must be allowed in most EU countries, probably with different brand names...

    Good luck!

  • I'm so glad to have read your post. I just picked up my first pack of Dienogest/Ethinylestradiol, I live in Spain and here it's called Ailyn. I'm going to start it tonight. I sure hope it helps me, I don't think I can go through another episode of feeling like someone stuck a knife in my uterus! 2 months ago I went in to see my gyno after almost drowning during a surf session because I got hit such intense pain. They found a cyst the size of an orange on my right ovary which had ruptured while surfing. After 4 doctors, a CAT scan, and countless ultrasounds to determine that it wasn't cancer (thank god) I have endometriosis.

    Quick question - how many days after you've taken the last pill do you wait before you begin the next pack of pills? You mentioned you take it continuously, so just wondering if that means you skip the 7 day break? Thanks!

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