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[dangermouse]

I honestly don't know the exact reason but having been on progesterone only for the last 2 years, trying all different types, doses and patterns, I have concluded that, despite advice to take it for half the month to mirror your own cycle (for prog only) it only works if you take it every day.

The first few days you feel good as you're getting a therapeutic effect of replacing a hormone that is low. Then it sets off some kind of reaction, I can only surmise based on theories, that it could be:
a) wakening up dampened down receptors (could be oestrogen, cortisol, who knows!) in response to the extra progesterone.
b) GABA receptors suddenly reacting.
c) a reduction in our own endogenous progesterone levels in response to the exogenous progesterone.

The symptoms can be: bowel cramping and wind, anxiety, anger, restlessness, irritability, nausea, dizziness and increased migraines.

However, after a few weeks the symptoms lessen and then they go away, as long as you don't stop the progesterone.

I suspect that all the starting and stopping as part of most of the HRT regimes is what is assumed to be a progesterone intolerance, when it's actually the body not having time to adjust.

I have no scientific evidence for any of this, it's just my own very long term, carefully studied experience.

[vintagefiend]

Hey Racjen-
 do the consultants want your oestrogen to be 1000pmol? Mine is 30 for comparison? I don't feel good on 30, but i'd be climbing the walls with levels as high as yours!!
Is it definitely the progestogen alone that's making you miserable?
I appreciate that your circumstances are very different to mine and that maybe it's comparing apples with oranges!
Wishing you all the best x

[SueLW]

I honestly don't know the exact reason but having been on progesterone only for the last 2 years, trying all different types, doses and patterns, I have concluded that, despite advice to take it for half the month to mirror your own cycle (for prog only) it only works if you take it every day.

The first few days you feel good as you're getting a therapeutic effect of replacing a hormone that is low. Then it sets off some kind of reaction, I can only surmise based on theories, that it could be:
a) wakening up dampened down receptors (could be oestrogen, cortisol, who knows!) in response to the extra progesterone.
b) GABA receptors suddenly reacting.
c) a reduction in our own endogenous progesterone levels in response to the exogenous progesterone.

The symptoms can be: bowel cramping and wind, anxiety, anger, restlessness, irritability, nausea, dizziness and increased migraines.

However, after a few weeks the symptoms lessen and then they go away, as long as you don't stop the progesterone.

I suspect that all the starting and stopping as part of most of the HRT regimes is what is assumed to be a progesterone intolerance, when it's actually the body not having time to adjust.

I have no scientific evidence for any of this, it's just my own very long term, carefully studied experience.

That's very interesting Dangermouse.  I too used progesterone only in cream form for several years and apart from feeling terrible for the first 2 days, properly zombied, I felt fine on it.  I have been using it for 3 years now in cream form with cream oestrogen (compounded, frowned upon here) and it was fine but overall my levels of everything were getting worse and worse.  So I've recently switched to Estrogel and Utrogestan vaginally.  I'm kicking myself because I was doing OK taking it every other night but decided I wanted to take it every night.  I only did it for a very short time, about 4 nights in a row, and I was almost unable to function.  So I stopped and went back to every other night but I am not right again yet.  Still very tired and miserable and foggy.  I should probably have stuck with it for another few days.  It's so hard when trying to work!  I'm also in dire need of increasing my levothyroxine dose and don't want to make two changes at once.  I hope I soon go back to feeling how I did before I messed with it.  If I could take 2 weeks off work I'd slug it out with every night to see if I could get through it.  But I can't.

[racjen]

Hey Racjen-
 do the consultants want your oestrogen to be 1000pmol? Mine is 30 for comparison? I don't feel good on 30, but i'd be climbing the walls with levels as high as yours!!
Is it definitely the progestogen alone that's making you miserable?
I appreciate that your circumstances are very different to mine and that maybe it's comparing apples with oranges!
Wishing you all the best x

30 is very low - when mine was that low I felt terrible, very very depressed. I went to see Dr. Sarah Gray privately a few times because my GP was absolute rubbish, and she recommended getting it up to at least 800 for depressive symptoms (and I know Dr. Studd advocates at least that level for many women). However, I haven't been able to afford to see her again and so far I've only seen the NHS consultant once for 15 mins. So no, there's no evidence that it's progesterone alone that's the problem, but it definitely does give me terrible side-effects and even worse withdrawal symptoms. The acute morning anxiety I get throughout the cycle is anyone's guess - the only certainty is that it was triggered overnight by starting Utrogestan and then never went away. But I guess it could be that the oestrogen level is now too high. If I ever get another NHS appointment I'll ask her opinion, but I get the impression my own guesswork is as good as hers to be honest, so maybe I should just try reducing the dose myself anyway.

What makes me really angry is that if I'd had a surgical menopause I'd have been offered gynaecological follow-up as a matter of course. Chemotherapy menopause is, to all intents and purposes, the same thing, but you're just left on your own to deal with it and if you try and get help they treat you like some kind of freak.

[Hurdity]

The problem with alternate day progesterone is that limited studies have been carried out only on low or medium doses of oestrogen and because the endometrial repsonse to oestrogen (and the corresponding protective dose of progesterone) is dose dependent - on high doses of oestrogen there may well be spotting and less control of bleeding on such a regime than with low to medium oestrogen doses. Sadly this is another case of surgical and chemical menopause (ie sudden artificial cessation of ovarian activity before natural menopause has occurred) not having sufficient info or studies on which to base dosage and in your case racjen having a double whammy of no ovaries (and the hormonal fall-out from this) but also  still having a uterus meaning you are not only struggling with finding the right oestrogen dose but also having to cope with progesterone too!

Re the progesterone theories - progesterone intolerance is well-documented and recognised by the gynaes - the adverse effects of continuous low grade progestogenic side effects is enshrined in the BMS and Women's Health Concern recommendations on HRT - as I recall. The effects of adding progesterone and the progesterone withdrawal effects (which most women experience as part of pms) are separate from intolerance to the progestogens themselves. An example is the sedative effect of progestogens - this doesn't go away with time- when we're pregnant we are tired all the way through but we also have very high oestrogen levels which enables us to cope!

There is still a question mark over the role of progesterone in breast cancer so I wouldn't want to take it all the time (for a long time anyway ie years and into older age) while this is still considered a risk - although all risks need weighing up against quality of life of coruse!

From memory progesterone receptors are activated in the presence of oestrogen. The GABA thing (I'm a bit hazy on the details here) is more of an issue with oral progesterone - because it is the metabolic breakdown products from utrogestan after oral intake that bind to GABA receptors - pregnanolone maybe?

Our own progesterone is very low in the absence of ovulation - post-menopausally and during the first part of the menstural cycle. As far as I know if you are still ovulating and therefore producing your own progesterone this is unaffected by adding progesterone exogenously - it would only be if ovulation was inhibited that less progesterone would be produced due to there being no egg sac and no corpus luteum (which produces the progesterone).

re Compounded HRT - it's not a question of it being frowned upon on this forum as such - it is not recommended by the medical profession for reasons well set-out elsewhere - in statements by the professional menopause societies, position statements, fact-sheets and blogs, so these are linked to from time to time by forum members when the subjuect arises  .

Racjen you really should have ongoing gynae support! I am wondering if you would consider trying other forms of progesterone (I see you are considering the Mirena coil)? There is off licence Cyclogest and also Crinone gel although I don't know anyone using the latter.

Hurdity x

[racjen]

Hurdity, thankyou as always for taking the time for such an in depth reply.

After a year of this misery I have no doubt that I should be getting proper ongoing gynae support, and I'm a pretty assertive articulate person but I'm struggling to work out how to make it happen. Changing my GP resulted in one 15 minute gynae appointment, which then failed to turn into the promised follow-up until I left messages on her secs answerfone for 3 consecutive days. No questions about my estrogen levels, previous history etc. Now I have an appointment to get a mirena fitted on 2nd Oct, but who knows whether that'll help or hinder. And then how long it'll take to get another appointment. With no NHS menopause clinics in the SW at all the situation is desperate; I'm now facing losing my job as I've been off for so long, and yet it seems the only way I can get the help I need is to somehow find the 100s of pounds I need to go private.

[Fosse]

Progesterone gives me bad headaches. So after considerable trial and error and help from a clever friend, I figured out a method to take less. I pierce the utrogestan capsule with a darning needle, squeeze out some, then weight it on digital jewellery scales (£20 from Amazon). I have worked out the weight / mg I need - which is 0.218 / 40mg a night (more = headaches, less = spotting). It is fiddly and took me a while to get the technique and dose right. I take it vaginally every night without a break. Hilariously I do all this measuring to 0.001 grams accuracy – then often some dribbles out during the night anyway! But it has levelled out some of my symptoms though.

I must emphasis my consultant knows I do this and I have had scans/ biopsies to check my womb lining – which it OK on this regime (I am on Estradot 50mg patches as well). Everyone if different though and this shouldn't be tried unless under a consultant's care.

I few years ago (under my consultant care) I went 4 months on Oestrogen only to see if my menopause symptoms improved. Surprisingly my anxiety got considerably worse – so I think I am someone who needs progesterone to help with anxiety -so I had to find a way to take a dose that I could tolerate.

I was going to try a jaydess coil (smaller, less progesterone) but unfortunately they aren't stocked at my hospital.

I have recently started a CBT course for my anxiety, panic attacks and agoraphobia. I can see now that my behaviours and thoughts have ‘encouraged' my anxiety, so I need to get it more under control. It is a difficult process but fingers crossed! Many times I have thought I would have to give up work but I am so fortunate to work for a great company who has been so supportive of my anxiety and we have modified my role accordingly plus I am allowed to work from home when I have bad days.

[vintagefiend]

it's rubbish that you've been left to your own devices, Racjen- a couple of years ago I had zoladex (so, chemical menopause) and felt unbelievably depressed!
i stopped the zoladex so my menopause has happened naturally- i do feel depressed, no doubt about it- but nothing like the immediate chemical menopause that, effectively, you've had.
Like you i tried utrogestan and found it difficult but i didnt try it vaginally or on a daiy basis.
and, Dangermouse- if you happen to be reading this- I'm v interested in your prog theories and the possibility of using prog cream only- never thought i'd say that!- but given that i go ballistic on oestrogen i'm willing to try anything!!

[Hurdity]

Hurdity, thankyou as always for taking the time for such an in depth reply.

After a year of this misery I have no doubt that I should be getting proper ongoing gynae support, and I'm a pretty assertive articulate person but I'm struggling to work out how to make it happen. Changing my GP resulted in one 15 minute gynae appointment, which then failed to turn into the promised follow-up until I left messages on her secs answerfone for 3 consecutive days. No questions about my estrogen levels, previous history etc. Now I have an appointment to get a mirena fitted on 2nd Oct, but who knows whether that'll help or hinder. And then how long it'll take to get another appointment. With no NHS menopause clinics in the SW at all the situation is desperate; I'm now facing losing my job as I've been off for so long, and yet it seems the only way I can get the help I need is to somehow find the 100s of pounds I need to go private.

That is worrying about your job - and I presume not in public sector and that you are currently on some sort of sick pay scheme? Are you able to do a phased return or are you not up to that yet? You really should not be put in this position - maybe post elsewhere about the job situation because I know there are knowledgeable women on here who know more about rights etc and have given great advice to other women who have had to take time off due to severe menopausal symptoms and associated conditions?

I agree about the SW and you really should not have to pay for this!!! Maybe the Mirena will just do the trick for you? I do hope so.

Hurdity x

[Hurdity]

Progesterone gives me bad headaches. So after considerable trial and error and help from a clever friend, I figured out a method to take less. I pierce the utrogestan capsule with a darning needle, squeeze out some, then weight it on digital jewellery scales (£20 from Amazon). I have worked out the weight / mg I need - which is 0.218 / 40mg a night (more = headaches, less = spotting). It is fiddly and took me a while to get the technique and dose right. I take it vaginally every night without a break. Hilariously I do all this measuring to 0.001 grams accuracy – then often some dribbles out during the night anyway! But it has levelled out some of my symptoms though.

I must emphasis my consultant knows I do this and I have had scans/ biopsies to check my womb lining – which it OK on this regime (I am on Estradot 50mg patches as well). Everyone if different though and this shouldn't be tried unless under a consultant's care.

I few years ago (under my consultant care) I went 4 months on Oestrogen only to see if my menopause symptoms improved. Surprisingly my anxiety got considerably worse – so I think I am someone who needs progesterone to help with anxiety -so I had to find a way to take a dose that I could tolerate.

I was going to try a jaydess coil (smaller, less progesterone) but unfortunately they aren't stocked at my hospital.

I have recently started a CBT course for my anxiety, panic attacks and agoraphobia. I can see now that my behaviours and thoughts have ‘encouraged' my anxiety, so I need to get it more under control. It is a difficult process but fingers crossed! Many times I have thought I would have to give up work but I am so fortunate to work for a great company who has been so supportive of my anxiety and we have modified my role accordingly plus I am allowed to work from home when I have bad days.

That's interesting Fosse - I think someone else posted about this or maybe it was on another forum? As Stellajane says there should be a 50 mg dose! As you are on a medium dose of oestrogen and taking utrogestan vaginally, then half the recommended oral dose should on average be sufficient to protect the womb lining provided no issues like fibroids. The alternate days dosage of 100mg was discussed earlier and the preliminary research studies showing it can be effective for those on low/medium oestrogen doses but presumably this provides too much of a hit if you are intolerant?

Hurdity x

[Fosse]

Hi Hurdity,
I tried alternate nights of 100 mg vaginally for a month hoping my body would adjust but unfortunately the headaches never lessened. My consultant says there isn't enough demand for 50 mg to give the manufacturer a business case to produce it

 

[racjen]

Hurdity, I work for Devon Libraries, which has recently changed from council ownership to a charitable trust in order to stay financially viable. I've already had 8 months off last year for the cancer treatment itself, now nearing the end of another 10 months after which I'll be on ESA alone. I have my second Formal absence Review Meeting on Tues and they are trying very hard to be helpful and sympathetic, but right now a phased return isn't really going to help, given that I'm being held together by ever-increasing doses of diazepam and never know how I'm going to be feeling from one day to the next ( for instance, I've spent the last 3 days pretty much crying solidly due to Utrogestan withdrawal). I'll get advice from my union, but in the end if you can't work you can't work can you - they're not going to keep on waiting for ever

[Ladybt28]

Hurdity - I just wanted to say that your comment about us being tired all the time when pregnant "but we have high oestrogen which enables us to cope" gave me a lightbulb moment!  The fact it gave me a lightbulb moment about my pregnancies (I obviously didn't have enough oestrogen to cope, wow now it all makes sense - totally another story!) that doesn't help racjen, but I needed to tell you all - this forum is brill - I get answers to questions that have been bothering me for years.

I am so sorry to hear about your job racjen - I really hope the union can help.  Surely it is an ongoing side effect of the treatment for the cancer really. I have to say whether it is council or charitable trust, the charitable trust are still employers and they must abide by the same rules as all employers in the event of sickness otherwise you would have a case for unfair dismissal. You really shouldn't have to be in a position of so much worry. Regarding work - I asked some questions of an online solicitor once regarding unfair dismissal - cost £25 - I got lengthy answers, could ask quite few questions and found it very helpful - maybe if the union don't step up then that could be an option.  If any pharma read this forum they would know there is a market for 50mg Utrogeston duh.

I totally agree about not being able to work with all those symptoms. I've been there with a few of them all in one go for quite lengthy period (about 10 years more off than on!) and you just don't know what you are going to feel like until you open your eyes!  I went self-employed because of it 26 years ago because if your bad, you just stay at home and fudge it - that's if you can do anything at all but there have been many duvet days I can tell you.  It doesn't make for a successful business but it kept a roof over our heads!
As for access to treatment - menopause access is woeful.  My heart goes out to you  - sometimes the universe is really unkind to those who have been through enough.

[SueLW]

Hi Hurdity,
I tried alternate nights of 100 mg vaginally for a month hoping my body would adjust but unfortunately the headaches never lessened. My consultant says there isn't enough demand for 50 mg to give the manufacturer a business case to produce it

I wonder how they know there isn't the demand!  They haven't asked us.  It would be interesting to see what would happen to demand if it were actually available at a 50 dose.  I'd be using it nightly then for sure.

[dangermouse]

it's rubbish that you've been left to your own devices, Racjen- a couple of years ago I had zoladex (so, chemical menopause) and felt unbelievably depressed!
i stopped the zoladex so my menopause has happened naturally- i do feel depressed, no doubt about it- but nothing like the immediate chemical menopause that, effectively, you've had.
Like you i tried utrogestan and found it difficult but i didnt try it vaginally or on a daiy basis.
and, Dangermouse- if you happen to be reading this- I'm v interested in your prog theories and the possibility of using prog cream only- never thought i'd say that!- but given that i go ballistic on oestrogen i'm willing to try anything!!

Hey, just give it a go and see if it makes you feel better. Ona’s Natural is a good brand and I hear that women take it both peri and post menopause with good results. I personally do have high oestrogen and oestrogen makes me feel awful (particularly my own!) so not sure if women in post meno do well as oestrogen is still surging about or if it helps when low as well.