Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[lillith112]

Long story, used to be on HRT for a couple of years, came off due to a pituitary tumour as consultant thought it was raising my prolactin and cortisol. I've had insanely heavy periods, soaking through everything 😞 so was recently put on desogestrel mini pill to hopefully stop my periods.

Since Being on it I feel weird, like I'm in a daze and not full clarity if that makes sense 🤷 I take it in the morning. I wonder if switching to it before bed might help ? Did it help anyone else with heavy periods and any side effects ? x

[bombsh3ll]

First of all that's a rubbish reason not to be on hormone therapy if you were finding it beneficial.

It doesn't make medical sense - either you have a hormonally active pituitary lesion requiring treatment in it's own right, OR you had a slight elevation in prolactin and cortisol secondary to exogenous hormones, which is a known phenomenon, is benign and doesn't necessitate discontinuation.

If there was any suggestion that estroprogestins were hastening the growth of the pituitary tumour, the progestin desogestrel should be equally contraindicated.

So firstly I would establish exactly what is going on medically. Nothing you have said should contraindicate hormone replacement - if it did then they should be getting you booked in for bilateral oophorectomy or shutting you down with Zoladex, because you are still menstruating and hence producing the exact same hormones that you have been told to stop taking.

Regarding desogestrel, I have been on it for menstrual suppression - one 75mcg tablet did not work and I needed 150mcg.

This did the job nicely however this is a properly suppressive dose and will reduce your own ovarian estradiol production to a very low level.

Mine was 44pg/ml on this, and whilst I was not symptomatic I was not happy to remain on this long term and chose a combined pill instead.

In my opinion the desogestrel mini pill is neither use nor ornament as it doesn't shut ovarian function down properly at the usual dose and contains no estrogen, although I recognise it has a role in the therapeutic arsenal.

You may be better with either a mirena IUS that doesn't have the same systemic side effects, or a combined oral contraceptive pill taken continuously like me- I take Zoely.

Or you could go back onto the MHT you were taking before, which is unlikely to make a jot of difference regarding the pituitary tumour, but will also not provide menstrual suppression.

[joziel]

Totally agree with Bombshell there.

Very chop logic reasoning and sounds like whoever you're dealing with isn't confident in prescribing HRT really.

I used to be on desogestrel for 10 years (the regular 75mcg mini pill dose). It stopped all bleeding for me, but I also had zero libido or sex drive, not much motivation or interest in life and felt very flat. I also have no idea what it did for my bone density to take it for so long and have the low estrogen levels it causes. I didn't actually realise what I was experiencing was the desogestrel until I came off it and realised the difference.

I would echo bomb's suggestion of the Mirena coil if you have heavy periods, or the combined pill with body identical estrogen like Zoely.

[lillith112]

First of all that's a rubbish reason not to be on hormone therapy if you were finding it beneficial.

It doesn't make medical sense - either you have a hormonally active pituitary lesion requiring treatment in it's own right, OR you had a slight elevation in prolactin and cortisol secondary to exogenous hormones, which is a known phenomenon, is benign and doesn't necessitate discontinuation.

If there was any suggestion that estroprogestins were hastening the growth of the pituitary tumour, the progestin desogestrel should be equally contraindicated.

So firstly I would establish exactly what is going on medically. Nothing you have said should contraindicate hormone replacement - if it did then they should be getting you booked in for bilateral oophorectomy or shutting you down with Zoladex, because you are still menstruating and hence producing the exact same hormones that you have been told to stop taking.

Regarding desogestrel, I have been on it for menstrual suppression - one 75mcg tablet did not work and I needed 150mcg.

This did the job nicely however this is a properly suppressive dose and will reduce your own ovarian estradiol production to a very low level.

Mine was 44pg/ml on this, and whilst I was not symptomatic I was not happy to remain on this long term and chose a combined pill instead.

In my opinion the desogestrel mini pill is neither use nor ornament as it doesn't shut ovarian function down properly at the usual dose and contains no estrogen, although I recognise it has a role in the therapeutic arsenal.

You may be better with either a mirena IUS that doesn't have the same systemic side effects, or a combined oral contraceptive pill taken continuously like me- I take Zoely.

Or you could go back onto the MHT you were taking before, which is unlikely to make a jot of difference regarding the pituitary tumour, but will also not provide menstrual suppression.

My Endocrologist has passed the buck saying it's down to my GP whether they agree to let me back on HRT 🤷 According to him my tumour is non functioning and was only raised on HRT, yet a couple of months ago my prolactin level was 914, highest reading yet and I wasn't taking anything.
I've been on desogestrel for 10 days now and agree with joziel in that I feel very flat.
I don't think the combined pill is an option due to my age and history of migraines. 

[lillith112]

Totally agree with Bombshell there.

Very chop logic reasoning and sounds like whoever you're dealing with isn't confident in prescribing HRT really.

I used to be on desogestrel for 10 years (the regular 75mcg mini pill dose). It stopped all bleeding for me, but I also had zero libido or sex drive, not much motivation or interest in life and felt very flat. I also have no idea what it did for my bone density to take it for so long and have the low estrogen levels it causes. I didn't actually realise what I was experiencing was the desogestrel until I came off it and realised the difference.

I would echo bomb's suggestion of the Mirena coil if you have heavy periods, or the combined pill with body identical estrogen like Zoely.

Thanks for your reply Joziel, I am absolutely feeling like you describe. I feel flat, no motivation, I've totally dried up down below and feel itchy like when I had thrush, I have zero libido or interest.
Merina is definitely an option then, but symptoms on that must be similar if it shuts down your ovaries as well ?

[bombsh3ll]

The mirena IUS doesn't suppress ovarian function.

It is a good option for bleed control and can be used as endometrial protection alongside estrogen.

On its own however it will not address menopausal symptoms.

[joziel]

lilith, you probably need the Mirena plus some transdermal estrogen (patches or gel). These are safe for people with a history of migraines.

The Mirena does not suppress ovarian function for the vast majority of women. I think there is some tiny percentage of women it does, but anyway - if you are adding estrogen back in again separately, that doesn't really matter.

I'd insist to your GP that you are allowed to restart estrogen....

[lillith112]

The mirena IUS doesn't suppress ovarian function.

It is a good option for bleed control and can be used as endometrial protection alongside estrogen.

On its own however it will not address menopausal symptoms.
[/quote

Thanks for your reply, it makes perfect sense what you are saying. I thought anything that suppressed your cycle stops ovarian function.

[lillith112]

lilith, you probably need the Mirena plus some transdermal estrogen (patches or gel). These are safe for people with a history of migraines.

The Mirena does not suppress ovarian function for the vast majority of women. I think there is some tiny percentage of women it does, but anyway - if you are adding estrogen back in again separately, that doesn't really matter.

I'd insist to your GP that you are allowed to restart estrogen....

Yes I will definitely ask if I can start HRT again.
I wonder if the Merina will affect my IBS, it's really bad at the moment. 😞