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[racjen]

Thanks Mary and GRL, your replies are very helpful. Personally I'm willing to take the risk at the moment, because my quality of life is so low I'll end up topping myself before there's any chance of developing womb cancer. Plus, because I feel so awful I'm not looking after myself properly in terms of diet, not drinking alcohol, plenty of exercise etc. in order to reduce my risk of breast cancer recurrence. So it's kind of swings and roundabouts really....x

[GypsyRoseLee]

It is a very personal decision to make racjen. But so long as you make sure to have a regular scan to ensure the 100mg for 7 days is enough to protect your womb lining.

I know just how low and desperate you feel because I have been there so many times too - and yes, there are definitely some things that are worse than death, and severe hormonal anxiety/depression is one of them.

I am confident you will see a big reduction in your symptoms on lower progesterone. And it's true, you are dicing far more with your health by eating and drinking all the wrong things.

Have you decided when to start the new regime? Prof Studd advised me to take 100mg Utrogestan on the 1st - 7th of each month.

[Mary G]

GRL, agreed, apart from having a hysterectomy, there are no other options for progesterone intolerant women other than to seriously reduce progesterone intake and have regular scans and there is absolutely nothing wrong with opting to do this.  You can't just flick a switch and make yourself able to tolerate the NHS recommended dose so what else can you do? 

A former MM member who I am in touch with told me that her gynaecologist said that the NHS are currently trialling 5 days of progesterone for severely progesterone intolerant women.  I don't have any details of this trial but it sounds promising.

racjen, I hope it works out for you.

[racjen]

GRL, I guess I was just thinking that once I'd got past this bleed (hasn't started yet) I'd wait a month and then start the new regime. Seems the simplest option.

[GypsyRoseLee]

That's very hopeful news MaryG!

I get so frustrated that most people are rather dismissive about progesterone intolerance, and seem to think you just need to tough it out every month.

[racjen]

There's certainly no way I'm toughing it out this way again - even only every 3 months the thought of the black hole it's sent me into is awful. I'd consider a hysterectomy rather than have to keep going through this. Bleed is coming on now so hopefully will start feeling better pretty soon.

[Hurdity]

That doesn't really make sense though - there are loads of women here doing Prof. Studd's recommended 7 days a month 100mg utrogestan and getting on fine with it. Mathematically speaking, 10 days of 200mg every 3 months = 2000mg utrogestan in total. 7 days of 100 mg every month for 3 months = 2100mg. So it's pretty much the same dose. Am I missing something here, is there another factor I'm not taking into account? Otherwise I'm just trying it, doctors really haven't helped me much so far, and I'm not paying Prof Studd several hundred pounds just to be given his standard treatment which I can work out for myself anyway...

I don't think it's simply additive and also the 3 month regime has fallen out of favour due to the increased risk of endometrial hyperplasia (even more so I gather than the 7 day regime or as much as anyway) and breakthrough bleeding on this regime - especially with higher doses of progesterone. There was a study on the 3 month regimne which is when Studd started the 7 day one I think?


As I understand it the extent to which progesterone allows complete shedding of an "oestrogen primed endometrium" is dependent both on dose and duration. So I do 200 mg x 12 days every two months but 7 days per month of 100 mg only gives 1400 mg in total. If it was just total dose then you could take a massive amount over two days. Because it is broken down quickly in the body it needs to be sustained over a period of time in order for the structural changes to take place in the uterus. Studd's own research demonstrated that 7 days is associated with more endometrial hyperplasia.

I absoultey agree that women with progesterone intolerance should be permitted to reduce thuis dose but as Mamachunk says - under supervision.

Racjen if you do decide to do this then please talk to your doc so that they agree to let you have 6 monthly scans in the first instance (as your oestrogen levels are high) and surely this would be permitted for someone in your position and with your medical history.

All the very best with trying to find a solution that keeps you healthy mentally and physically.

Hurdity x

[Letmein]

I hate this hrt business. It's seems like there are so many options, type of treatment, dosage etc... yet with consequences if not done safely, yet so little medical advice on what is right or wrong.

I've been prescribed 100mg for 14 days, assumed it was every month. Now I'm not so sure as I was only prescribed the equivalent of 2 months of it. I decided to take it vaginally as read this was better, and stopped after 12 days this month because I was going mad with it (mainly with heart rate that went up quite a bit, impacting on sleep etc...). I did have a 'good' withdrawal period, 4 days of it, first two quite heavy. I assumed that meant it was ok but does it mean that only a scan can decide if it is or not?

How are we supposed to find the right balance between making hrt work for us -because that's the whole point of taking it in the first place- without putting ourselves at increase danger, with GPs who know so little about it (My GP told me that cutting a patch in half in no way meant receiving half the dose and thought the idea was ridiculous).

[Mary G]

Letmein, I agree, it's not very satisfactory and I was left to work most of it out for myself.  My GP knew nothing about HRT and I was forced to seek help privately.

If you struggle with the progesterone part of HRT, the only option is to reduce your dose to something like 100mg Utrogestan for 7 days and then have a scan after a few months to make sure it's working properly.  You might find it difficult via the NHS unless you are severely progesterone intolerant but you can pay for scans privately.   I'm afraid uterine scans are the only way to monitor the womb lining and ensure you are getting proper clearance. 

Utrogestan works more effectively at thinning the womb lining when used vaginally which helps.

[Letmein]

Thanks a lot Mary. It's very informative to know that only a scan can confirm that the womb liningis shredding properly rather than assuming it is because of how heavy the withdrawal period is.

I didn't like the Progesterone but it was bearable and if it gets a bit better after a few months, I think I will try to live with it as I can't afford private scans (trying to reduce my working hours) and my GP certainly won't agree to send for scans on the NHS (at least not until I evidence that I'm about to hurt someone on Progesterone!)

[Hurdity]

Letmein - if you have only been prescribed two months of it then I presume it is because your doc wants to reveiw it with you if you have just started taking it? As I expect you know the licensed dose is 12 days x 200 mg or 25-28 days x 100 mg but there are no variations for oestrogen dose which dose make things tricky - and therefore GPs don't have much to go on ( although yours does sound somewhat ignorant re the patch).

Taken vaginally research shows that more gets to the uterus where it is needed but annoyingly (and absurdly!) it is not licensed to be used in this way in UK. Even in France the dose for vaginal use is given as the same as for oral use (well it was a few years ago).

As well as the effectiveness of the progesterone, the amount of bleeding will depend on where you are in menopause and the oestrogen dose. If you are using the licensed dose and having a good monthly bleed then there is no reason to have a scan. If you are very early peri, ovulating most months but using less than the required amount - then your own prog may well clear the lining. It's when you are later in peri and producing none of your own or very high doses of oestrogen that you have to be careful and any deviation from licensed dose must only be done under medical supervision.

As always if you have any abnormal bleeding or anything you are concerned about then do discuss with your GP (or another doc in the practice!),

Hurdity x

[Letmein]

As I expect you know the licensed dose is 12 days x 200 mg

Thanks Hurdity, this is why I find the whole thing so unsettling. No I didn't know that, but more worringly, I've checked the label on the utrogestan box and it says clearly '100mg capsules, one to be taken daily on days 14 to 28 of cycle' So not the licence dose. Why would that be?
If going by irregular periods, I've probably been peri for about 4 to 5 years now and in the last few months, only had very little bleeding (much less than the withdrawal one I just had).

Do I need to go back to my GP to ask why I'm only on 100mg for 15 days rather than 200mg for 12 days? Does the fact that I do use it vaginally (my GP doesn't know) mean that the lower dose is acceptable?

[Night_Owl]

Racjen and Letmein -  just as an aside - I'm severely progesterone intolerant and suffer just as you describe whilst taking Utrogestan (or any other progesterone) and during the withdrawal (PMT/depression x 100) plus migraines.  I attend the Panay Menopause Clinic and have been prescribed Sertraline AD to take only during the progesterone phase - as for some women prog can affect brain neurotransmitters and serotonin levels, even taken v-route.  Not sure if Sertraline will be a solution as I've yet to try it and somewhat reluctant as ADs haven't agreed with me in the past - however I may pluck up the courage. 

After many years, I've found there is no real solution to the whole prog intolerance issue (apart from hysterectomy) - just to try and reduce prog to the absolute minimum use (I take lower dose Utro 100mg x 10 nights v-route, every 6 weeks) whilst still avoiding endometrial build-up - if that means reducing estrogen then so be it: I am down to low dose 25 patch but then I'm 10 years post meno.

I hope you find a way forward - it really is trial and error all the way and for some women taking progesterone is the absolute pits of hell, just telling it how it is - you have my sympathies.

[Letmein]

Thanks Night Owl, let us know how you get on with Sertraline.

[Hurdity]

Letmein - if it's bearable then take the licensed dose to start with and especially if you are not able to pay for private scans. However as Night_Owl says for severely progesterone intolerant women you should be able to push for this through an (NHS) menopause clinic on NHS. I've no idea why your doc has prescribed 100 mg only but if this is the GP then by all means ask. The printed PIL should state the correct dose. ( some of these were printed incorrectly a couple of years ago). Interestingly I've just chekced the leaflet in my latest box and it makes no mention of the 100 mg dose for continuouis use and only mentions the 200 mg x 12 days. Weird!

Yes theoretically less is needed when used the vag route - according to limited research - but also dose dependent (on oestrogen) - as Night_Owl says 10 days is the accepted minimum time for progesterone to work safely despite the Studd regime - although if you are able to have individualised treatment with scans then this is the best way - and would be great for all of us but would quickly clog up the NHS I expect (more than it is already).

Night_Owl - that's interesting - I hope that works for you.

Hurdity x