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Author Topic: Desogestral as HRT progestin off label  (Read 748 times)

CrispyChick

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Desogestral as HRT progestin off label
« on: May 28, 2025, 09:16:49 AM »

Has anyone been permitted to use desogestral (mini pill - cerazette, cerelle) as the progestin part of their HRT???

It's not licenced as such, but the BMS do refer to double dose. But don't go as far to say it's fine to use, like they do with slynd.

I understand the reasons, lack of research etc. I understand double dose (150mg) would be perfectly safe.

Bur I'm looking for real world experience of a GP or consultant or private clinic agreeing to this? Especially if anyone has been permitted to take very low dose estrogen with just one cerazette. I'd love to hear from you please.

 8)
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Mary G

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Re: Desogestral as HRT progestin off label
« Reply #1 on: May 28, 2025, 10:35:53 AM »

Yes me!  I think it was bomb or joziel who mentioned Cerazette on here as a good, well tolerated form of progesterone so as someone who is always open to trying different types of progesterone, I'm giving it a go.  I just went into the pharmacy and bought a packet of three as it were!

I'm still using the Darstin progesterone gel which I really like but instead of adding an occasional dose of Cyclogest I'm taking 1 x 75mcg Cerazette every day and so far, it's gone very well with zero side effects.  My thinking is if I start bleeding it's not enough progesterone but if I don't bleed, it's sufficient and I will find out at my next scan anyway.  I increased my oestrogen dose to two pumps of gel several months ago and from my personal history I know I don't need a massive dose of progesterone fior womb protection but obviously this is different for everyone.

Crispy, I think you need to find a doctor doesn't stick to rigid NHS guidelines, thinks outside the box and is prepared to go off licence.

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CrispyChick

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Re: Desogestral as HRT progestin off label
« Reply #2 on: May 28, 2025, 10:45:08 AM »

Thanks Mary

Interesting. So you're well post meno and now trying single dose cerazette (75mg) as your progestin? I know you're in Spain - has some doctor agreed to this? Or have you just bought the pill and are trying yourself?

Ah. You're still taking your gel too though, so getting a lot more P.

Oh yes, I absolutely need someone that doesn't stick to rigid NHS guidelines. But... I'm not actually sure I want to pay just so someone can nod their head and let me try cerazette with say E gel. Hence my question.

I'm totally comfortable with using E with double cerazette. And, although I'm not sure my GP will yet agree to this, she's considering it.

But...I'm no longer on 2 Cerazette. It supressed me so far it killed all my estrogen. Who knew?!? Which is not what I need to do as I'm still pre meno. I need stability without tanking. So I don't want to be on 2 Cerazette and need to add in more E than is necessary.

So I'm very interested in people who have been 'allowed' to take low dose estrogen, particularly on conventional 75mg desogestral.
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Mary G

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Re: Desogestral as HRT progestin off label
« Reply #3 on: May 28, 2025, 11:23:29 AM »

To be honest, I do my own thing HRT wise and have done for years because with the greatest respect, most doctors know virtually nothing about HRT unless they are menopause specialists. I visit a gynaecologist every year (or more if I need to) and have all the necessary checks so that gives me the opportunity to experiment. 

I buy Cerazette in the pharmacy and I think you can do that in the UK.  Because it's a birth control pill it's readily available and I wish it had been around when I needed birth control because it's free of side effects.  I used to gained weight with the pill when I was young but Cerazette is completely different.

I would definitely give it a go.

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CrispyChick

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Re: Desogestral as HRT progestin off label
« Reply #4 on: May 28, 2025, 11:30:00 AM »

Thanks Mary.

I used cerazette for years. I'm not sure I'd say it's side affects free, but when pre meno it holds estrogen low so can cause issues there.

Not a problem for yourself.  ;D.

I'm back on cerazette. No problem getting it from my GP. It's just the big question of wether anyone will support low dose estrogen on cerazette alone.

I don't want to spend money going somewhere like Newson to find they don't.

To be honest, I probably am going to do this alone. I'm just looking for reassurance that it ys safe I guess.  ;D
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Mary G

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Re: Desogestral as HRT progestin off label
« Reply #5 on: May 28, 2025, 12:07:40 PM »

Crispy, I'm wondering if perhaps Cerazette has fewer side effects in extremely post menopausal women like me because I don't produce any natural oestrogen. Apparently it suppresses the cycle and oestrogen levels in pre menopause women but it doesn't suppress oestrogen which is externally added in via HRT regimes. 

If it was me, I would add in one pump of Oestrogel will the single dose Cerazette and see how it goes.  You've got nothing to lose because if it's not enough progesterone, you will just bleed out.  I spoke to a menopause specialist about this once when I was desperately trying to minimise my progesterone dose.  I asked what would happen if I didn't take enough progesterone and she said I would probably have non stop bleeding if I took progesterone every day but if I didn't take any progesterone at all, I would have dangerous womb lining build up.

Obviously make sure you book a uterine scan at some point to check your womb lining.
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bombsh3ll

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Re: Desogestral as HRT progestin off label
« Reply #6 on: May 28, 2025, 12:12:19 PM »

When you say low dose estrogen, what dose do you mean?

Women taking single desogestrel for birth control don't have zero estrogen. They can have from about 160pmol/L to first trimester pregnancy levels if they develop cysts.

As most are anovulatory on this POP, they have no endogenous progesterone.

It is often also prescribed to women who can't take combined pills, which tend to have higher endometrial risk anyway eg due to weight or metabolic syndrome.

It is almost certainly safe with up to 50mcg estradiol, which I would consider low dose. The potencies of various progestogens have been quantified and it is many, many times more potent than progesterone.

But nobody is going to openly sanction this, at least not without endometrial monitoring because if you did develop anything (which may or may not have anything to do with desogestrel) they would come under scrutiny and potentially risk their licence.

So you would need to be under a private specialist, have monitoring and very clear documentation about the potential risks given the lack of evidence.

Or you could just get bog standard estradiol and progesterone from your GP and cerazette for "birth control". Nobody has a camera in your bedroom and whether you take the progesterone is up to you.
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bombsh3ll

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Re: Desogestral as HRT progestin off label
« Reply #7 on: May 28, 2025, 12:22:46 PM »

The other issue I would add about using single desogestrel as endometrial protection is that this is likely to result in irregular bleeding.

I don't know how comfortable you would be with this long term, although invariably benign this often leads to invasive investigation if reported to your GP, and you would be questioned about what you were taking.

I know that having to carry some sanitary protection sounds like a very first world problem compared to everything you have been through but women going it alone with their treatment, which I totally get, can end up feeling very isolated and stuck when issues like bleeding arise that cannot then be dealt with by the usual channels.
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CrispyChick

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Re: Desogestral as HRT progestin off label
« Reply #8 on: May 28, 2025, 03:01:47 PM »

Thanks ladies.

Very helpful.

Sorry, yes I should clarify. When I say very low dose estrogen, I mean less than 1 pump of gel. So given that, you say bomb that one cerazette is safe? But noone will sanction it?!

Yes. I get the bit about noone knowing what I do with the prog. And it is where I'm about to go - I think. But it's like the point you've raised - it's a very lonely place to be. And can/could be alarming should new symptoms, like bleeding arise.

So I think that's where I'm coming from. Does anyone see a specialist who sanctions very low dose estrogen on one cerazette???

It's just nice to know someone does/ feels it's ok to do.  :P

Ill never take high doses of estrogen whilst still in peri. I sat on one cerazette for years with a blood estadiol of 200pmol. No low E symptoms.

As I mentioned in my other thread, the double dose has overshot and ive been plunged back into post meno symptoms like I did in chem meno, albeit not quite as severe. With E at 24 pmol. So I've dropped to 1.5 cerazette.  Chat gpt is guiding me.  ;D. The idea, is to lift me slightly from the floor, but remain heavily supressed. Will it work? Don't know.

Will retest in 3 weeks. But I may need to drop back to one. And, because I'm now coming from a place of strong supression, one may hold me, when it didn't last year. But it may not.

But alternatively I may opt to try low dose E on my 1.5 cerazette. I've asked about one cerazette in my post because, let's face it, who takes 1.5  ;D

I react so strongly to any hormonal change, so I never intend to add in a lot of estrogen for that reason. My body won't tolerate. I'm in hell this week having dropped half a cerazette. This I now know is unique to me, and probably central nervous system dysfunction.   

None of this is about high estrogen dose or even protective estrogen dose. Its simply about stability and living without the low E symptoms that suppression can bring.

So yeah, I'll probably be trying this when I'm ready. Was just hoping there are specialists out there who support using low dose E on one cerazette to normalise this for me.  ???

And...if I'm only aiming to raise my estradiol to say 150pmol - surely I wouldn't bleed out on that?!   :-\

Thanks both. Very helpful chat. I'm so niche these days on here.  ;D
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bombsh3ll

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Re: Desogestral as HRT progestin off label
« Reply #9 on: May 28, 2025, 05:41:52 PM »

Pragmatically there almost certainly will be specialists who would support that if you were to have a consultation with them, especially if you were taking 1 and a half cerazette pills which is over 100mcg desogestrel.

Someone like nick Panay, professor Studd's clinic - I don't specifically know the staff but they trained under him, or Louise Newson.

If you think logically about it, 150mcg of desogestrel is paired with 30mcg of ethinylestradiol in the combined pill.

This is MUCH greater than a pump of estrogen gel.

Also there will be plenty of women taking cerazette who naturally have higher estrogen levels on it than what you are aiming to achieve.

It is medically safe without a doubt, but it is medicolegally unsafe for the prescriber.

That's why it is very unlikely to be supported on the NHS.
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