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[KittyKats]

I've been told I have to switch to oral Utrogestan to see if it helps my bleeding issues but I am scared to do so as I have read anxiety or sedation/dizziness can be a potential side effect. I have hyper PoTs dysautonomia and live alone and am worried that I would have any of these symptoms. I already have dizziness, brain fog and anxiety with the condition which causes a ramped up sympathetic nervous system. Has anyone switched to oral and been ok? I have fear of new medications on top of this and am a very big baby!

[bombsh3ll]

Hi kittykats,

I also have dysautonomia so I know exactly where you are coming from!

First off if the reason for switching is to control bleeding, this is not a particularly good reason as bleeding is more likely with oral.

Less of it is absorbed, and most of that is converted into other metabolites, which MAY cause dizziness and sedation - however this is not a given, and if you took it at night when you had no early morning commitments the next day at the lowest available dose, you could test this out.

Unlike many medicines, taking progesterone on an empty stomach REDUCES the amount absorbed, so you could do this as well.

If bleeding is the main issue though, especially if progesterone presents tolerability issues - I don't tolerate my own progesterone well, so am on back to back COCP to prevent ovulation - I would recommend looking into other non-diuretic progestins like desogestrel 150mcg daily for example.

I don't know about you but I would never have an IUS because of the increased risk of a severe vasovagal response - you may get clinicians unfamiliar with dysautonomia suggesting this.

[KittyKats]

Hi bombsh3ll - thanks for all the info. Very helpful!

I didn't know that an IUS could cause a vasovagal response. How dreadful. This is my concern with all meds as I have funny turns quite frequently and almost fainted whilst out yesterday with the increase in temperature.

My consultant is from UCLH and he said that they have found some women bleed less on oral Utrogestan. Plus I am quite sore from using it the other way so he said he would treat the atrophy once I'd switched.

Apparently I'll be forever on cancer pathways if I continue with the bleeds on HRT as GPs get very worried and have to do these urgent referrals. He said some women bleed a lot on HRT and only the Mirena seems to stop it but I've already made up my mind that I don't want it. He said there's a patch with a progestogen alongside the oestrogen that I could try. It must be Everol Conti.

Thanks for all your help.

[bombsh3ll]

There is evorel conti however this is a fixed low dose 50mcg estradiol patch which is subtherapeutic for most women. You could wear two but many prescribers will not support this.

Seriously, look into desogestrel 150mcg daily. I would be extremely surprised if this didn't get rid of the bleeding completely and permanently after a few weeks. This is 2x desogestrel 75mcg mini pills Cerelle/cerazette, which you can buy over the counter if you say it is for contraception if your prescriber won't play ball.

It is off label as endometrial protection but supported by the BMS based on available evidence.

You then have the freedom to use the type, route and dose of estrogen that suits you.

It is devoid of antimineralcorticoid activity so is a perfect choice for those with dysautonomia.