Print

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

[Reed Bunting]

Hello everyone,

I don't know where to start except by saying thank you to all contributors esp Hurdity and latterly Mary G and Night Owl... a heartfelt thank you all, because I have been scanning this website for help since 2015 I think when it all started. It helped to educate me about what was happening.  So I have now joined because it seems like this is never over...  Have been badly served by two gps and now found a third who has some understanding but after the first two help was so deliberately unhelpful I just came off combined sequential hrt because I was so progesterone intolerant.  Norithisterone had been better but I came off it all because half a month I felt so drepssed.  Then I gradually ground to a halt.  Joint aches, such dryness down below I thought I had some form of thrush, rampant insommnia, my mouth went white and puckered, no energy and depression and anxiety.  I write them down for anyone to view because I myself did not know at the time that these were symptoms of hormone deficiency.  It took a passing remark by Jo Brand and an article by Trinny woodall who explicitly stated her hrt regime that made me realise what was possible and what I could actually try if I sought it.  So I went to Prof Studd and saw Neale Watson. By this time I new I was post menopausal anyway. Can't say much for his beside manner I'm afraid.  But I paid £350 basically for a perscription of estrogel and Utrogestan (7 pills each month) and testosterone and a firm hand betwen the shoulder blades.  But he did suggest a bone scan which showed I had osteopenia so that was something. The symptoms passed within two or three weeks, after six months I was able to reduce the estrogel to 50 and I felt myself again but since then ie since a year of the regime the reaction to the progesterone has got steadily worse.  Sorry this is so long but I feel a bit desperate!!  I have been taking less Utrogestan and using it internally and that helped for a while but now I feel like Im going mad.  Can't stop weeping, over reacting so making poor decisions, negative thinking, constantly anxious and to be honest suicidal thoughts.  There, I have admitted it.  So when I read Nigfht Owl's post I realised that it must be the build up of the progesterone.

Don't know what to do about it.  I have considered now taking even less Utrogestan and hoping for hte best and getting a scan done after six months or so.  A couple of years ago I paid and emailed Dr Currie and she said I should be taking 200 mg of Utrogestan for about 12 days a month I think and I thought crikey if I do that I will never get out bed.. I cant face the mirena though maybe that's my only choice.  Has anyone drastically reduced the progesterone and found a way to cope with thickenng of the womb lining?  Thank you for stopping by anyone bless you x

[Hurdity]

Hi Reed Bunting (another bird lover?!)

 

Those of us who have been around for a while like to try to pass on info we've gleaned to do our bit to try to help others, little bit by little bit!

Re your problems - not new as you say. Night_Owl would be the best to talk to re going without prog and having regular scans on NHS. I think she is with the Chelsea and Westminster clinic (where Nick Panay is based). She hasn't logged into the forum for a while though so might not see your post. You could send her a pm (although she might not get e-mail notifications - as mine don't work either - something to do with the website).

From my point of view I hate the prog but don't feel suicidal or depressed on it. Just foggy-headed, sometimes migrainey, tired and lacking in energy and oomph - while taking it. My solution like some others - is to go long cycle rather than reduce the length of time on it -  because in principle it is the duration rather than the dose which is critical. Obviously some women get good womb clearance on very little prog and these women are extremely lucky - but you can't assume this will be the case for you. So in my case I have drastically reduced but by having a 5-8 week cycle so I have longer on oestrogen only during which time I feel fine once I've got over the prog withdrawal phase. I still do 200 mg x 12 vag although if my cycle is on the short side eg 5 weeks I just do 100 mg. My (NHS) GP is happy with whatever I do and always sends me for scans if I get spotting or bleeding at the wrong time. My lining has always been within normal limits - but I must stress this is very individual and also depends whether you have eg fibroids too (I have a small one).

You could ask for a referral to the C and W and see if you can get a reduced prog regime with appropriate monitoring?

I can see you want to get this sorted as you have osteopenia - so that you can continue taking oestrogen.

Btw you didn't say how old you are?

Hope this helps - I'm sure others with approved non-standard regimes will be along too.

Hurdity x

[Reed Bunting]

thank you for that advice Hurdity and a big hello to you at last!!! - what you've suggested is another pathway and I can't see myself giving hrt up again yet, the insommina is worst of all.  What you say makes me wonder whether those of us who react so negatively to the Prog don't need as much.  I only took 3 x 100 this month by insertion and yet I've felt the worst yet but also have had appropriate withdrawal.   I will go back gp and ask for help again and be honest. It is hard when you've met with resistence and your inclination is to cope but it must be done.  Feeling sane again today (hooray!!)  I am nearly 58 now (boo!!)

[Mary G]

Reed Bunting, I'm sorry to hear about your problems with the dreaded Utrogestan.

I'm glad you found my posts interesting.  I have since moved on HRT wise.   The 7 day 100mg Utrogestan/Oestrogel /testosterone regime served me well for a number of years but I got to the stage where I just couldn't take Utrogestan anymore.   I also couldn't face periods either because they were making me feel ill and I was fed up with centring my activities around the Utrogestan phase and the ensuing bleed.   The fluctuating hormones were also causing my silent migraines.

Long story short and following another consultation with my hormonal migraine specialist, I went to a menopause specialist who substituted the Utrogestan with bespoke 50mg progesterone.   She (together with the migraine specialist) told me I had to stop the bleeding and the hormone fluctuations and take progesterone every day as well as the separate oestrogen and testosterone of course.   I was horrified!   My greatest fear was that the bespoke progesterone would be like Utrogestan but fortunately it was absolutely nothing like it.

Fast forward one year and it's the best thing I ever did HRT wise.   I haven't experienced any unpleasant side effects, feel as good as I did on the oestrogen only part of HRT and have the added bonus of no more periods.   

Obviously this regime will not suit everyone and it's only suitable for post menopausal women but I'm also 58 and my sense is than my body changed over time and I could no longer tolerate Utrogestan or the fluctuations of a cycle.   I never liked Utrogestan but it got worse over time.   

So I thought I was progesterone intolerant but I was completely wrong, it was a case of the wrong type at the wrong dose with the wrong delivery system.

The bad news is the type of progesterone is not available on the NHS.

I'm sure Night_Owl will be along soon to share her experiences but the last I heard, she had stopped HRT altogether. 

I hope my experience can offer hope to others in a similar situation.

[Reed Bunting]

Hello Mary G, thank you for your reply and it makes me realise what an unexact science our bods are to fathom.  I am willing to try any variations because I think that these hormones are part of our natural processes so we must be able to withstand them in some quantity.  And in fact I have been trying to work out if I could 'doctor' the progesterone pill in some way and modify the dosage (I have been reading up on the daily release of hormone in the Mirena coil). So your regime is of great interest to me.  Also not least because you are taking it continuously.  I so tired of the monthly withdrawal bleed.  But also the rollercoaster of emotion and feeling like the person I used to be has just vanished bit by bit.  I recognise that what works for one may not work for another but may I ask whether you take the progesterone as a 50mg oral tablet?  And what effect do you think the testosterone has had?  I have never asked for more of this on the NHS assuming I would be laughed out of the surgery.  I have eeked out the quantity from the Studd prescription and take a bit when I'm really low in case it helps...

[Reed Bunting]

PS Ah Mary G  I have just noticed that you say your type of progesterone is not available on the NHS - do you mean that it is some synthetic form?  ie not micronised progesterone?  When I go to the gp it would be really helpful to be able to tell her of any alternative as I think she is on a learning curve about it too.  Thanks again for advice.

[Mary G]

Reed Bunting, I hope I can help you.   Firstly, someone on here modifies Utrogestan capsules to 50mg using digital scales so that is one idea.  Regarding the coil, if I were you, I would go for the Jaydess coil rather than the Mirena because the dose is lower.   Have a read up on it.  I had a Mirena for contraception without any problems but once I lost the protection of my own hormones, it became problematic.

Regarding the 7 day 100mg Utrogestan regime, I cheated like mad, stretched it out to 5 weeks and often only used a few capsules (because of the migraines) but I still had a good bleed and low womb lining measurement - I regularly went down to 2mm post bleed on that regime.   I was under supervision and had loads of uterine scans and they were all good but it wasn't sustainable long term.

I'm fairly indifferent to testosterone and haven't really noticed any huge difference, it was oestrogen that really made a difference to my symptoms. 

For reasons I'm not going to go into, I never mention specialists I consult by name on here.   My progesterone is definitely not synthetic, it is body identical (exactly the same as the progesterone you produce yourself) and my prescription is 50mg.  It is very different from Utrogestan because the dose is lower and it is absorbed differently meaning it has a positive effect rather than a negative effect (in my case at least) and helps to balance hormones and stop the oestrogen spikes that were causing my migraines. 

Send me a PM if you want to know which specialists prescribe bespoke progesterone.   You might have to post a few more times before you can send a PM, I'm not sure.

The doctor who prescribed the progesterone for me also works at an NHS menopause clinic in London and said she wishes it was available on the NHS but it's just not possible so you're GP probably won't be able to help with this particular product.

Feel free to ask as many questions as you like!

[Reed Bunting]

Hello Mary G,

thank you for your reply - I will have to bone up on how to pm - I don't even know how to use the yellow faces!  What you say about fudging the dosage in the past sounds so familiar, it's exactly what Ive been doing all year.  I am relieved you dont mind me asking questions as I don't understand the bit about the 'natural' progesterone you use - do you mean it's got a different composition to what is in the Utrogestan ie which is micronised progesterone?  I thought that was bio identical too and hence natural you see.  I am willing to try and make up my own prescription modifying the Utrogestan pills and I have been inventing ways I could do that, I just dont know whether 50 mg should be taken orally or by absorption ie to use it vaginally.  The latter would mean more is absorbed into the body.

So keen to try a new approach.  The supermarket delivery man came half an hour early the other day and I was blubbing away - I can laugh now but he looked at me as if I had lost it completely and made me sit down, bless him.  Feeling like I want to explode today... 

thank you! Reed Bunting x 

[Mary G]

Reed Bunting, I'm so sorry to hear that you are feeling low.  It certainly sounds like you need to make some changes.  You may have to try a few regimes before finding something that works and of course you need to identify your particular problem.  It took me years to establish that I needed a constant and uninterrupted flow of the right hormones at the right dose and to avoid spikes but there is no guarantee that you are the same.   

If you are going to modify the Utrogestan capsules, please make sure you use digital scales like the member I mentioned before - I wish I could remember who it was!  It is important that the measurements are accurate otherwise it will cause an imbalance.  I would recommend you use it vaginally.  Will you be doing this on a continuous combined basis or cyclically?  Either way, it's definitely worth a try.

I forgot to ask before if you have any history of PMS and/or progesterone intolerance.  I didn't have any history of either so I was surprised when I started to have problems with the Mirena coil and all types of progesterone used in HRT preparations.  I now know that I was suffering from hormone instability because I was no longer producing enough of my own progesterone and although I desperately needed oestrogen, I also needed a steady dose of progesterone to stop the oestrogen spikes and resulting migraines.  Something else to bear in mind is that synthetic progesterone (used in the Mirena/Jaydess coil) does not balance hormones, it just protects the womb from lining build up.

Although Utrogestan is body identical, it is not the same as the progesterone I use now.  In theory, Utrogestan is the same as the progesterone you produce yourself but the reality (in my case at least) was completely and utterly different and the effects of it were nothing like the effects of the progesterone I produced pre-menopause.  I now know it is because of the dose and the delivery system. 

I don't think you have to be progesterone intolerant to have problems with Utrogestan because it comes up on here time and time again and lots of women say it makes them feel like they are going mad.  Oestrogen is relatively easy to mimic but progesterone is much more difficult and this is where most HRT regimes fall over. 

So you might want to start with the modified Utrogestan and go on from there.  Make sure you have a scan after a few months to check that it is working properly.  I think you will know pretty quickly if this regime is going to fly. 

As soon as you can send me a PM, I will give you more details about my progesterone and you may still decide to take this route but I imagine you want to rule out other options first.  It might be worth looking at the Jaydess coil option too. 

Keep posting!

[Hurdity]

Hi Reed Bunting

It's great that women like Mary G have been able to get a bespoke regime that works for her and enables her to continue with HRt without some of the horrible side effects. However a method of delivering a 50 mg dose of Utrogestan is simply not possible on NHS. Mary G would you care to give details of the actual formulation – is it a capsule, cream, lozenge etc? From what I've read it is likely that for such a dose, bespoke regimes will be using compounded creams  and as such are most definitely not only unavailable but not approved by the medical establishment because of the lack of consistency of dose and unproven effectiveness in protecting the endometrium.  I doubt whether practitioners are approved by BMS because of this (but please put me straight on that Mary G if they are!). There are all sorts of clinics offering various regimes but these remain the province of celebrities or the wealthy.

I would suggest also that being able to use very low doses of progesterone such as Mary G is describing when on a cycle (sometimes only a few days per month – less even than 7) and achieving a womb thickness post period of 2 mm is EXTREMELY unusual and not a yardstick to compare what would be likely in your case For example by contrast I have a long cycle – as I said mostly 200 mg Utrogestan vaginally for 12 days per 6-8 weeks and my lining at the last scan ( immediately post-bleed) was 4.7 mm.  I'm happy with that, as is my doc but certainly not 2 mm and I am not even taking a high dose of oestrogen. It is very much an individual thing and any variation from standard MUST be monitored  and the majority of women who rely on NHS will find this might not be possible.

As to the doctoring of the capsule – this is also not advisable. After all I presume it would involve the piercing the capsule and squeezing some out. The integrity of the resultant capsule would be in question so the remaining progesterone may ooze out faster than the capsule is designed for and therefore means even less may get to the uterus.  Just a thought...However a way of approximating this if you are happy to take continuous combined HRT is the alternate day 100 mg vaginal Utrogestan which has been the subject of preliminary research – and which some doctors (like Louise Newson) prescribe off-licence. I posted the abstracts to studies elsewhere which you might have read and can bump if you want?

By the way there is no question that the progesterone in Utrogestan is EXACTLY the same as the progesterone is any private bespoke regime - the raw material ( micronised progesterone) is likely manufactured in the same lab! the difference that Mary G is talking about is due to the instability of progesterone as a molecule in the body. It has to be taken in large doses in order for sufficient to get to the endometrium. The ovary produces it in regular pulses after ovulation and ensures that sufficient gets to the endometrium as required ( to prepare for pregnancy) - it is impossible to mimic that - although there was talk on another thread of a progesterone ring - but these are very low dose and to assist with contraception in breastfeeding women - so not suitable for hRT at the moment. We do dearly need more research into all of this as the trend to replace synthetic progestogens with "natural" = body-identical = bio-identical (miscronised) progesterone continues.

Re the Jaydess – unfortunately this is not yet widely available (possibly privately) and especially not for HRT but theoretically as it provided lower progesterone doses may well be better tolerated than the Mirena but if you are interested - worth exploring!

If I sound like a boring killjoy it's because I am aware that most women do not have the wherewithal to pay large sums of money for private treatment and monitoring but at the same time would like to have some individualised treatment – even though sometimes a bit off-licence. There are ways of doing this on NHS as I have suggested but do need the cooperation of your doc, and if not, done at your own risks and you have to be able to afford regular scans.

I do hope you manage to find your own way round and through this. Certainly I have managed for 12 + years – the last 8 on long cycle treatment – on NHS and have had to find a way to deal with the Utrogestan ( partly helped I believe by loading up with Vagifem before I start each cycle!).

Keep us posted!

Hurdity x

[Mary G]

Reed Bunting, I've found the thread re modifying Utrogestan and the member's name is Fosse.   The discussion begins on page 2.

https://www.menopausematters.co.uk/forum/index.php/topic,41181.15.html

[Reed Bunting]

Thank you both Mary G and Hurdity.  Since my last post I have indeed been experimenting: carefully squeezing out the contents of 5 Utrogestan Pills (oh dear all I can say is I was a girl guide and nihil desperandum etc etc) to suspend in warmed coconut oil then divided the solidified result into 10 roughly equal portions.  Swallowed the first coconut ball this evening with a view to just taking it all the time... but now I realise having read Mary G's lastest post I should have used it the other way round...! this always makes more sense to me (to avoid the first pass) though after some months of using the Utrogestan 100mg pill (three or four per month) vaginally I now get pelvic dragging and need to pee more.  I think if I tried the long cycle I would have to write off alternate months of my life.  (Last February the gp also suggested a long cycle telling me I must take two months worth of progesterone each time as Hurdity does.  She also suggested the mirena but I can't get past that one psychologically.)  HOwever, I'm going to persevere with my 'rough' coconut pills for a month and see how I feel mentally.

With regard to pmt in past years I never did suffer much as I recall - only occasional quite severe pain at onset.  However, I have had long bouts of amenorrheoa in my late teens and twenties, and then long 33 day cycles or no periods at all for months, due I always thought to changing school/city in mid teens and that just messing me up long term. Last question:  what kind of scan should I be booking or asking for on NHS?  I note there are different types. Am now worried whether I should confess all this to the gp.  Well, I will stop by again after a few weeks of my - ahem - 'unclinical trial' unless one or more of you say for goodness sake Reed Bunting - STOP doing that!!!

All the best and glad to know that you have both found a path through.
Reed Bunting x

[Hurdity]

Oh dear!

I must say very enterprising Reed Bunting but NO!!!  Coconut-progesterone fatballs  !!! Progesterone is very unstable and who knows what happens to it when you suspend it in warm coconut oil! I mean fine if you were just trying to use it for therapeutic purposes only (yes there are some women who feel they need it!) - but you are trying to protect your endometrium!!!

If you were going to reduce the contents then keeping the caspule as it is, piercing with a pin, squeezing a bit out and then swallowing the remaining capsule (or inserting it) would be preferable but this would be very imprecise (even using digital scales) because you don't know the weight of the capsules and in any case would alter the release rate of the progesterone and therefore affect the amount that gets to the uterus...so still not advisable if protection of the endometrium is the aim.

Girls - please don't do this at home!!!

I feel your plight - I really do - but this is not the way to go! Like I said before I think off-licence alternate day vaginal utrogestan is the nearest to 50 mg per day that at least has some research backing it.

Sorry Reed Bunting but I admire your spirit!!

Re scans - google what's available in your area. Apparently some large Mothercare stores do them (not in my area) or babybond/Ultrasounddirect I think are countrywide. On NHS you would just ask for scan of uterus (lining) but you won't get this unless you have abnormal bleeding or under special regimes from menopause clinics - which you may be able to get referral to re extreme prog intolerance.  I mentioned Night_owl and you might want to pm her as she is under non-standard regime and has regular scans on NHS - or at least last time I "spoke" with her.

All the best.

Hurdity x

[Mary G]

Reed Bunting, perhaps you could start by buying a set of digital scales online.  You can then place a piece of kitchen paper or similar on top of the scales, pierce the Utrogestan capsule with a clean needle, squeeze out the residue onto the piece of paper on the scales (make sure it is the same amount every day) and then (if you decide to use it vaginally) insert the capsule as close to the cervix as possible using an applicator.  If you have ever bought Canesten for example, you can use the applicator from that.  Alternatively, you can take the capsule orally.

After a few months, you could then arrange to have a transvaginal (internal) scan to see if it is working properly.  If you google it, you should find places in your area that offer transvaginal scans and you will be able to get an idea of cost too.  It's a good idea to have a scan anyway to check ovaries etc. 

Just a thought!

[dangermouse]

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.