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[Christyover50]

Hi I'm new here, and am hoping I'm nearly menopausal, although also a bit nervous!

I have endometriosis and adenomyosis, I took desogesterol for that for a few years and it was a wonderful relief. But I developed an arythmia as a result and had to stop about 12 months ago.  My periods are shorter and less painful, and also not as frequent, so I'm hopeful I will soon be in menopause, because this will finally end all the pain. I'm 52, but my only other symptom is less libido.

But. I'm also worried that decreasing estrogen will be like desogesterol, and make the arythmia worse again. And if it does, I don't know if I will be able to take hrt because of the endo...

I would really welcome any information from women who have been on a similar journey? Thanks so much.

Happy to provide more details, but didn't want to write an essay and look like I expected you all to read it!

[CLKD]

 

Some medications have side effects which may be unexpected. 

MayB keeping a mood/food/symptom diary would help chart progress?  My periods waxed and waned for a few years B4 disappearing: then I had overall body dryness which caused itchiness in various parts: insteps for ages, I would wake with one ruff heel scratching the other  and my back will itch all over ...... a good scratch helps.

Browse round.  Make notes.

[Konijntje]

I just started (yesterday, so too soon to tell how I respond to it) with dienogest as my progestogen as part of my hrt (I’m using oestrogel as estrogen). Dienogest is often prescribed for endometriosis, in fact that is the only thing that is mentioned on the leaflet. I don’t have endometriosis myself (or rather, I don’t have a diagnosis, I do have some symptoms), so for me the reason to start dienogest is because I’m progesterone intolerant and I’m hoping to do better on dienogest.

Some women that are on dienogest are able to add transdermal estrogen back in without their endo flaring up, so that is why I’m mentioning it as an option. There is also a multiphasic bcp with dienogest and estradiol that some women with endo can take without endo flare ups (I don’t respond great to oral estradiol myself, so that is why I chose the combination with transdermal estrogen), so that might be worth looking into. It’s called Qlaira and I think it’s registered upto 55, but I’m not sure. My doctors (I’m in the Netherlands) had no problem prescribing the bcp’s with bio identical estrogen at my age (50), but it might be easier to get it prescribed as a standalone and then start with a low dose of transdermal estrogen.

[bombsh3ll]

It is difficult to see how desogestrel which is a non diuretic progesterone analogue, could have caused an arrhythmia.

Especially as you had been taking it for several years. This is biologically implausible.

It is likely an innocent bystander, and there is a tendency for women who develop any kind of issue and happen to be taking hormones to be whipped off a beneficial treatment, with the new problem blamed on this by clinicians who either don't understand or disapprove of hormonal treatments, without regard for the gynae condition now left untreated.

This happens in clinics in every area of medicine every day; sore ears - must be the pill,  better stop it, itchy feet - must be the HRT, better stop it etc.

What type of arrhythmia did you have and how was it treated?

[Christyover50]

Well, that's what all the doctors said, so I kept taking it and it kept getting worse. I had benign ventricular ectopics, but they got so frequent (every other beat, sometimes running into each other) that I reached the point where I was often too dizzy to stand up or think). Then I was sick, forgot to take my desogesterol, and they got much better. I tried taking it again and they came back within hours. Did that 3 times to convince myself it wasn't a fluke. My cardiologist said that hormonal changes can bring in ectopics, so she thought it made sense. I have a low heart rate anyway, so she had been reluctant to prescribe beta blockers, and I was about to start flecanide.

I still have the ectopics, but the frequency is much less, only if I'm tired or push myself exercising. Ie I don't think the desogesterol created the issue, but amplified it.

Because of that experience I'm concerned what happens with menopause, but we will see.

[Christyover50]

@konijntje, thank you, that's really helpful and reassuring. I will definitely do some research on this so I'm armed with knowledge and specific requests when I need.

[bombsh3ll]

That's really interesting, a clear pattern then.

I wonder if these were possibly vasomotor symptoms of low estrogen, exacerbated by desogestrel which can lower endogenous estradiol production?

Might explain why you had been on it for years, then your ovarian function reduced further due to perimenopause

[Christyover50]

Yes it could be. I don't really understand what desogesterol does to estrogen.

My cardiologist said I should consider hrt if they get worse as I get into menopause. So I am here to learn!

[bombsh3ll]

Your cardiologist is a keeper 🙂