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[Reed Bunting]

Hello all,

have trialled my new 'regime' for four days and going back on to the progesterone straight after the break for withdrawal bleed has been awful.  Even with rough 50mg quantity I still had the same symptoms of negative thinking/low mood and irritable for no reason/teary/pelvic dragging and need to pee.  Even went so far as to cut the quantities down to 25mg and this still brought on the symptoms.  I do try to place it as high as possible.  I reread Night Owl's posts from two years ago and agree its like taking poison.  It's like a naked light bulb going on in the room of unhappy experiences - stuff pops into your head completely unbidden.  So I'm giving up taking it all the time and going to try a long cycle of 8 weeks (is that too long?)  just to get a break from it.  Anyway, I read also of Hurdity's vagifem regime so I will try that also.  I just want to stop taking it for a while.

thanks for everyone's help, you've all been very kind. xx

[Night_Owl]

Hi RB

Sorry to read you're having such a dreadful time with Utro - can so relate!

For some of us, even when taken vag, the effect is (immediate) systemic, progesterone affects brain neurotransmitters -  and creates horrid depression/low mood, eg. negative experiences and conversations I'd had years before would come right back at me, truly ghastly. 

I've spent c.10+ years attending Chelsea & Westminster Hospital Meno Clinic trying to find a prog regime that I could tolerate - they all had the same horrid effect.  I've been on  high to low estrogen, gels and patches.   I was classified 'highly progesterone intolerant' and it was assumed that I had been intolerant to my own progesterone, when I was producing it, as I had bad PMT.

For quite I few years I struggled by on long cycle:

Lowest dose 25 Estraderm patch (for a while I was on half a patch) and taking Utrog 100mg x 10 nights vag route SIX WEEKLY (often I couldn't manage to 10 x Utro, only 7).  So SIX CLEAR WEEKS between each use of Utro.   The Clinic would only allow this on the lower dose - although latterly they did say I could go up to 37.5.  I always felt hideous on Utro (and other progs too) and the withdrawal was vile too.  I had yearly endo scans. 

Less estrogen = being able to take less progesterone.

 I dreaded taking Utro with every fibre in my body.  It also made vag atrophy / urge incontinence worse.  Although I used it vag route, the effect was systemic and straight to the brain - I think I have low serotonin (I get hideous migraines) and the prog exacerbated that.  At the time I was also using Vagifem so the vag walls were as 'plumped up' as they could be.  The progesterone intolerance effect did seem to get worse over the years and I asked why this could be - told the body gets less effective at processing it.  I strongly felt there was a cumulative effect too, I'm 'medication sensitive' though and all meds affect me.

Many years ago, I tried Utro 100mg alternate nights but couldn't tolerate it.  I refused Mirena/Jaydess as I just knew I wouldn't be able tolerate either and not able to remove it myself!

I can't afford to see any private meno specialists / clinics - last October I decided to throw in the towel.  I never felt that great on HRT, only had partial symptom control, couldn't take higher dose estrogen as that would mean taking more progesterone - even when I did try higher estrogen there was no real benefit. 

Maybe you could try 'long cycle' 6 / 7 weeks estrogen only - then Utro x 10 nights - and safeguard by having an annual endometrium scan.  What do you feel is the lowest estrogen you could get by on?

Hope you find a way forward, it is so frustrating not being able to find a sustainable regimen.

x

[Reed Bunting]

Hello NIght Owl,

thank you for saying hello - I have read your posts in the past with great empathy and yes, I understand exactly what you experienced and it's what I too find so distressing.  I blithely cut back the Utrogestan to 5 x 100mg permonth with 50mg Estrogen. Then I started to use the pills as pessaries because I thought the effect would be stronger and have taken even less.    I agree with you about the IUD - you can't control it if things get bad - puts me off too.  I think I will try the longer cycle but how long for I dont know now I realise that intolerance increases.  Thank you for telling me you regime, perhaps I can plot a course between yours and Hurdity's.  I still take 50mg estrogen patches - not as gentle as the gel but less messy.  Initially it was 75mg and then I seemd to get topped up after a few months and cut it back. 

How has the absence of estrogen affected you?  Has it been marginal?  When I came off it for that year I had a range of symptoms that basically felt like total dessication - dry joints - vaginally - and also the rampant insomnia, worst of all... but its the thought of 10 consecutive days taking progesterone...

You may have read about my DIY pessaries(!) but that was the result of reading about women who take progesterone to support pregnancy.  Their product is progesterone carried in vegetable fat but the other contributors are right to say that my method isn't an exact science.  I don't understand why we cant get what we need and why there are different products (Utrogestan and Cyclogest) which appear to do the same thing but prescribed for differenct conditions.  There is something not joined up in it all.  Anyway, thank you for telling me about you regime.  I realise that I need to book myself a scan and pay for it, although I feel a bit aggrieved about it.  I want to persist a bit longer as I have a low T score in the lumbar spine for osteopenia.  Thanks again! RB xxx

[KiltedCupid]

Reed Bunting - I know what you're going through. Utro and my own prog do exactly the same to me, as do large synthetic doses of prog - 2 unsuccessful Mirenas and a dreadful time on standard hrt doses. I've tried everything, freezing utro and cutting in half (the liquid doesn't freeze), alt day, squeezing out and rubbing into skin with vit e oil, weighing, very accurately on jewellery scales to 50 dose- they all got me in the end, and therefore they were all absorbed. For those ladies who scoff at us doing this, they clearly don't understand the extent of our intolerance and berating won't stop us being creative - we have no choice.

Having zero sympathy from my GP and meno clinic I eventually bit the bullet and went to Studd. He immediately identified that I had severe prog intolerance, his words ‘my god, you've really been through it', and boy was he right. He put me on 7 days utro which I took vaginally but eventually, I just couldn't take it, the depression and deterioration in life quality  forced me into experimenting with other regimes. I stopped hrt entirely for a while but realised I still need something, soooo, I've landed on a quarter fem7 sequi patch plus quarter oestrogen only patch, essentially a 25 patch conti. I have twice yearly private endo scans and everything is fine. Mood good, libido good, sleeping well so I'm happy with this.

If you've used any prog in the past with the pill and got on with it, it might be worth going back to that and trying a different dose. Don't give up, but utro sounds like it's not good for you. I felt like I was being poisoned on it.

[Countrygirl]

Hi Reed Bunting sorry to slightly derail your thread, but I saw this sentence and it jumped out at me as every 4-6 weeks this what happens to me, but I have struggled to describe it. I just know it's hell to get through, and I struggle with the increased anxiety level and low mood x

It's like a naked light bulb going on in the room of unhappy experiences - stuff pops into your head completely unbidden. 

[KiltedCupid]

Hi Reed Bunting sorry to slightly derail your thread, but I saw this sentence and it jumped out at me as every 4-6 weeks this what happens to me, but I have struggled to describe it. I just know it's hell to get through, and I struggle with the increased anxiety level and low mood x

It's like a naked light bulb going on in the room of unhappy experiences - stuff pops into your head completely unbidden. 

Exactly what happens to me too. As soon as the prog goes, the thoughts go. No fun.

[Hurdity]

Hi Reed Bunting

Just checking back in again after the last few posts. Re your experimental regime – I'm glad you are thinking of going to a long cycle at least using the proprietary products available. As I know you are aware they have been carefully formulated to give a measured dose within themanufactured preparation with its coating (ie the pill) micronized and carefully suspended in the oils in order for it to get into the system. Once you do something else with it – who knows how much will get through?  I'm not sure how you were taking your coconut fat balls of progesterone (!)? You said earlier you swallowed them and then talked about putting them as high as possible implying vaginal use? Either way you do seem very aware that this is not ideal re your endometrium and have sadly also experienced horrible progesterone side effects even on a reduced dose.

I am sure I said earlier that the reason we feel so bad on it ( well some of us anyway) is because we have to take a large dose in order for sufficient to get to the endometrium and this is much larger than the ovaries would produce because the molecule is so unstable. I feel your pain!

Yes I totally agree re the Cyclogest – I never understood why it was never properly trialled and licensed for HRT as well as fertility (and at appropriate doses) when Utrogestan performs the same function. However I don't think the result would be any different – there would still be systemic absorption and high doses would still be needed vaginally ( or rectally) in order for sufficient to reach the endometrium. Cyclogest was the first progesterone I used for 4 years – prescribed by my knowledgeable NHS doctor – before Utrogestan was available in UK and licensed for HRT or at least not known about.

It sounds like a longer cycle is the way to go especially as you are not on a high dose of oestrogen – yes do get the OK from your doc but they might not be quite so enlightened! The more docs know about the various degrees of progesterone intolerance and the solutions, the better.

Wow, let's not curb the inventiveness! As long as RB tests her lining then why not go a little rogue?

Bringing some controlled creativity to the forum is no bad thing.

Dangermouse – creativity in science and medicine is a wonderful thing and is the main way science progresses. However in this case we're not talking about a face cream or even a supplement, we're talking about a pharmaceutical product intended to protect the endometrium – so unless you have access to quite a bit of money – probably left to the professionals to experiment with. By the way Reed Bunting – I do applaud your creativity but like you suspected – don't think it's the way to go in this instance!! However of course it's up to you to decide what to do and if you can afford scans then go ahead - but if you end up with a thickened lining then you will need a stronger or longer course of a progestogen in order to thin it so probably best to work out a sustainable long term regime.

By the way the extent of your bleed on your current regime and whether you have had any breakthrough bleeding may be an indication of how your own uterus reacts to your current regime? Is the bleed heavy or light, short or prolonged, does it come after the prog withdrawal or during the prog course etc? (You might have already answered this!)

For those ladies who scoff at us doing this, they clearly don't understand the extent of our intolerance and berating won't stop us being creative - we have no choice.

Kilted Cupid – I'm not sure who the “us” is you speak of and I presume you have experienced “scoffing” and “berating” on another forum or menopause group before you recently joined this one? What a pity this might have had happened to you in the past, but rest assured that doesn't occur here as we are (mostly!) a very polite and civilised lot – as you can see from the discussion with Reed Bunting!

Reed Bunting – once again I hope you have sufficient information to help you decide what to do in order to continue to take much needed oestrogen, protect your endometrium but mminimse the horrible side effects.

By the way did I tell you about the vaginal plumping (!)? I use daily vagifem in the week leading up to starting the utro and every alternate day while taking it – in order to minimise systemic absorption? Apols if I've already mentioned it! No idea if it works but makes me feel better!

Let us know what you decide!

Hurdity x

[KiltedCupid]

Thanks Hurdily - I'm not on any other forums, the scoffing and berating was on here.

The ‘us' I refer to is those ladies who are severely progesterone intolerant and for whom progesterone changes their lives dramatically. Unless you've experienced it, and been diagnosed with it, you wouldn't really understand.

[Graciemouse]

Goodness. As someone who's hoping to go on Utrogestan when I see a menopause specialist in a couple of weeks - all this worries me somewhat.
It makes me think of Walt and Jessie on Breaking Bad!  Is all this taking capsules apart and weighing and mixing something that's normal? Yikes.
I think I need to find a thread where there's some positives about Utrogestan (please be some) Otherwise I'm going to scare myself silly before I even get into the consultants chair.

[KiltedCupid]

Graciemouse - not at all. Please don't be worried, there's lots of ladies who get on famously with Utro and in fact, feel better on it. You may be one of them. You'll find posts on here praising it as much as dissing it, it's just that for ladies who are truly progesterone intolerant, utro seems to be a no-no. Possibly because it's so similar to our own natural prog and we can't handle that either!

You'll never know unless you try it, and you may love it.

Good luck.

[Hurdity]

Thanks Hurdily - I'm not on any other forums, the scoffing and berating was on here.

The ‘us' I refer to is those ladies who are severely progesterone intolerant and for whom progesterone changes their lives dramatically. Unless you've experienced it, and been diagnosed with it, you wouldn't really understand.

Well –  I don't recall you receiving any such treatment in the short time you've been here Kilted Cupid– but I don't read all posts  , and if you have - it's definitely not typical!  I don't want Reed Bunting's thread to be derailed but felt I had to come back on these points because it gives the wrong impression of this forum to newbies! In the past and going back several years there has been a lot of discussion and quite rightly criticism for example of the safety of the Studd 7- day progesterone regime with regard to endometrial protection, but women receive a sympathetic response, help and support for being progesterone intolerant – and when they have come and asked for help, opinion or advice.

Although we are not all severely progesterone intolerant - many of us are intolerant to some extent - hence the need for and discussion of alternative off-licence regimes - which we share. We don't all need to have suffered to the extremes you refer to, in order to give advice, help and support. We just come and do our best to help within the parameters of safety, and usually within what NHS will sanction even if off-licence.

Hurdity x

[Hurdity]

Goodness. As someone who's hoping to go on Utrogestan when I see a menopause specialist in a couple of weeks - all this worries me somewhat.
It makes me think of Walt and Jessie on Breaking Bad!  Is all this taking capsules apart and weighing and mixing something that's normal? Yikes.
I think I need to find a thread where there's some positives about Utrogestan (please be some) Otherwise I'm going to scare myself silly before I even get into the consultants chair.

Most definitely and emphatically not normal Graciemouse - like I said in my other post PLEASE DO NOT TRY THIS AT HOME!!!! Most definitely not advised either! (I'm sure Reed Bunting won't mind my saying this?).

Like kilted cupid says many are happy on it in fact some love it! Some prefer the stability of being on a constant dose (the continuous utro) and some like the sedative effect - ie helps with sleep.  Dotty is one I think who is on it daily and very happy - maybe she will appear and say so herself!

Some like me get around the neagtive effects by taking it on a long cycle.

Please don't worry and remember the vast majority of women who are happy on Utrogestan don't come anywhere fora like this! Good luck with your appt!

Hurdity x

[Reed Bunting]

Hello Everyone,

I feel as if I've been wrong in talking openly about my desperate attempt to cut down my dose of utrogestan through the kitchen cupboard.  I do think that Hurdity is absolutely right to flag up caution - I know I'm playing fast and loose a bit - I felt a bit desperate a few weeks ago and had just come to the end of my tether.  So I do not advise anyone else to try what I've been doing though I have been a bit more systematic than I sound.  I am lucky enough to be able to afford a uterine scan and that's the vital bit of the test. Because if I know it's all gone wrong I can retrieve the situation.  And Hurdity is also right I'm sure when she reminds us that these options are not readily available on the NHS.  And I certainly know this from having two very unsympathetic gps in the past.  I think what it really boils down to is the unavailability of sized doses which is down to drugs companies and lack of research in an area in which one size definitely doesn't fit all.  These issues have turned some of us into experimenters to get the right dose.

From reading all the wonderful warmhearted posts on Mumsnet about progesterone users getting to grips with it to support pregnancy, and all those women who take hrt and find success and get on with their lives, it's clear that those of us who find this hormone difficult to cope with are in the minority.  It is a natural part of being human and we have all got used to producing differing amounts naturally before 'the change' set in.  If I didn't have osteopenia, and if I hadn't got such bad insommnia when I tried giving up hrt I would have just stopped, but I felt as dry as dust without it.  And only for those reasons did I recommence - have persevered a bit longer.

I'm not going to discuss my off piste methods any further (!) but I'm going to visit the gp and I am going to get a scan one way or another to see how everything's going.  I thank everyone who has contributed or read the thread because just having a place to be open and to realise that others go through similar feelings and have found ways through the hrt regime is a great blessing.  My friends have been in denial, or sailed through, or refused to discuss anything about it.  And that dismayed me.   It's a process and something half the population goes through and some go through the portal more easily than others.

Thank you Hurdity, Night Owl and Mary G and Dangermouse and all the other mices and (wo)men (oh did you catch my literary illusion!!?) Much love and best to everyone.  Reed Bunting xxx

[Hurdity]

Hi Reed Bunting (are you another bird lover actually?)

What a lovely encouraging and thoughtful post!

Please don't feel you were wrong to discuss anything at all like that - after all you were genuinely wanting to find out our opinion and share your creative ideas with us! Nothing wrong with that! However I am always the boring killjoy in the sense that I always urge caution (while using an off-licence regime myself!) and remind other women who might read the posts the conventional and licensed regimes as well as what is available and practical on NHS - as I am a strong believer in our health service and as I often say I feel for those who do not have the wherewithal to try other regimes only available privately. I realise you have thought a lot about it! It's good to share these ideas - in fact better to have them in the open so that the pros and cons can be aired and shared as it hopefully helps others to understand what's going on. I mean we don't actually know how much progesterone would have been absorbed using your method - was just applying logic and a little bit of science....!

Great you are visitng GP and getting a scan! In the short term anyway there should be no serious issues beyond maybe a bit of thickening - problems can arise through prolonged use of insufficient progesterone.

Your point about pregnaancy - I might have said earlier - it is as you know a special case. For a start oestrogen is enormously high so when extra progesterone is taken, even though it makes women tired and exhausted sometimes ( I was always tired in pregnancy especially early on) you are also energised from the very high doses of oestrogen so somehow don't notice it. Also I think there is something psychological going on - after all when you're trying to maintain your pregnancy and hoping for a baby - it is so exciting that your body and mind is willing for there to be a positive outcome so any side effects are probably seen as minor - I mean look at what some women have to put up with? Morning sickness etc, sometimes for weeks!!

Anyway do please update us - and let us know how things go - either on this thread or start another one in All Things Menopause - we will be really interested in your progress. Please do continue to be open

All the best
Hurdity x

[KiltedCupid]

Good luck Reed Bunting, hope you find something that suits you. I know women with really difficult progesterone issues find a workable solution with bespoke regimes at either the Jan Toledano or Marion Gluck clinic. These are private clinics based in London who provide non NHS tailor made bio identical regimes and clearly, you'd have to pay. It's an avenue I'm considering, as the only other option for me if my current prog doesn't work out, is a hysto. You may well find a workable solution with your go though.