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Author Topic: Running out of hope  (Read 2078 times)

SaraUK

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Re: Running out of hope
« Reply #15 on: May 12, 2024, 08:15:43 AM »

I found out my bladder pain was caused by histamine intolence caused by too high levels of oestrogen. It completely stopped when I cut out high histamine foods. Just something to consider if people are trying to work out a cause.

Interesting. What were your “high” oestrogen levels? I suppose everyone is different and what’s high for one is low for another. But yes, oestrogen dominance against other hormones can cause issues.

I’m seeing a functional medicine dr in a few months too. They’ll do the Dutch test on all hormones. Maybe look at bio identical hrt (dhea, pregnalonone, progest E), Maybe suit me better. Who knows.
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joziel

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Re: Running out of hope
« Reply #16 on: May 12, 2024, 09:17:11 AM »

"Hi, I’ve been on vagirux since a year ago using every other day (4-5 times per week). Daily since end of November for 3.5 months. I’ve used ovestin daily for 3 months too.

Blood test January, estradiol of 159. I asked to increase to more pumps than 3 and was told that I’d have to double up my utrogestan (progesterone intolerant so impossible). Mirena not an option as it’s right near bladder and can cause bladder issues. Utrogestan vaginally, again no, same problem."


This is so silly of your doctor. With estradiol of 159, you are very very low. You need a minimum of 250 for bone health and all the protective effects of HRT. So you are basically not on any HRT at the moment, as far as what your body is aware of.... It might not fix your vaginal symptoms - but it might(!) - and anyway, it's going to protect your bones, heart, brain etc etc.

I think your best bet is to see a private menopause clinic really. They will be prepared to allow you to remain on the same utrogestan because your serum estradiol is only 159, so you really don't need more. (NHS GPs look at dosage and not at what you are actually absorbing because they are a bit "Computer Says No" and don't really understand things well enough to make subtle complex decisions.) You can also be monitored in terms of an ultrasound just to check your lining isn't building up so you don't need more progesterone than you really really need, for that purpose. (By the way, your lining of 2.3mm is not thick at all.)

Another idea is to use a combined patch with a synthetic progestin in it, which isn't going to need to go up your vagina obviously. Again, NHS GPs won't like increasing your E above the 50 in that combined patch but a private clinic will be prepared to give you top up E patches or gel - perhaps again whilst monitoring with ultrasound occasionally.

And then there are other ideas like using desogestrel at double the POP dosage or using norethisterone, again at a higher than POP dosage - again, all things either a specialist NHS menopause clinic or private clinic will offer. There are many 'thinking outside the box' solutions but your regular NHS GP isn't going to know about them.

Getting systemic estrogen does help GSM symptoms in the vagina for sure. I don't need local estrogen anymore, since getting my systemic over about 350pmol (which isn't high). And as I said, all this will offer protective benefits for the future. You for sure don't have 'high' estrogen if these are your levels. And whilst your own ovaries can contribute more, they can't take away from what you are getting from HRT.
« Last Edit: May 12, 2024, 09:18:55 AM by joziel »
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Hurdity

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Re: Running out of hope
« Reply #17 on: May 12, 2024, 09:33:06 AM »

I agree with joziel - if your estradiol level is 159 (pmol/l ?) and your endometrium on your current regime is only 2.3 mm then you should be able to safely increase your oestrogen without needing to add further progesterone. My endometrium has NEVER been that thin on all the 17 years I've been on systemic HRT - and never less than 4.7 mm as far as I recall.

What is your current hRT regime anyway in terms of oestrogen product and dosagem and utrogestan frequency and mode of delivery?

You should not have to seek private treatment - the cost is beyond the reach of most women. It's a pity that Dr Currie has suspended her online service as she is too busy. I am wondering what the protocol is for women to post part of her reply (leaving out any personal stuff) - pertaining to this issue, to help other women and which could potentially be used to take to your doc? Probably as it's a forum, GPs would not accept it....

Oestrogen dominance is not an issue in your case - because your endometrium is very thin and therefore you appear to be taking more than enough progesterone to balance the oestrogen. It is more likely to be insufficient oestrogen per se which is borne out by your lowish levels - they they are above post-menopausal levels.

Dont give up hope! There is a solution out there for you, but it may take a little more time...

All the best

Hurdity x
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CLKD

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Re: Running out of hope
« Reply #18 on: May 12, 2024, 10:06:18 AM »

I would think that it is absolutely fine to copy/paste any responses from professionals unless someone is told 'in confidence'.  After all we discuss the ins and outs of what we are told by other Medics either on line or in person.

Don't give up hope.  Keep posting, asking, moaning etc., some1 is usually around ;-)

Being unwell can be draining and despondency may kick in ........
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SaraUK

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Re: Running out of hope
« Reply #19 on: May 12, 2024, 01:17:02 PM »

Thank you soooooo much ladies for responses.

Thinking back, do you think my slight improvement has been from going on the long 12 week progesterone free cycle, compared to me reducing oestrogen gel and stopping topicals?

Maybe the generic dose of 100mg utrogestan daily is too much for me as I’m a low absorber? Hence the progesterone intolerance symptoms?

I wonder if I could try going back on utrogestan continuously after going back on oestrogel x 3-4 pumps per day first for a few weeks?

I’d love to know what dose of utrogestan most ladies are on who are on 4 pumps of gel? It seems overkill to double up progesterone when going from 3 to 4 pumps (as insisted by meno nurse).
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joziel

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Re: Running out of hope
« Reply #20 on: May 12, 2024, 08:04:30 PM »

Sara, you have to understand that the advice to increase P when you increase E is on the assumption that women are actually absorbing the E well and therefore their serum levels are going up. If your serum E is 150pmol then you're not really absorbing it. Other women out there are on 2 pumps of gel and 100mg utrogestan and their serum levels are 450pmol. They don't need to increase their P. Because they are only on 2 pumps of gel. But their serum is 450..... this is why looking at dosage rather than serum levels is insane.

If I were you (this is not advice, it's literally what I would do if I were you), I would increase my E and keep the utrogestan the same. If my doctor wanted me to take more utrogestan I would tell a porkie pie, get the prescription for it but not actually take it. If I then got any problematic bleeding in future, I would revisit and reconsider all this. By the way, bleeding within 3 months of increasing your estrogen or changing products doesn't count - so ignore that - that's just settling down bleeding, I mean after that....
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SaraUK

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Re: Running out of hope
« Reply #21 on: May 12, 2024, 08:52:06 PM »

Sara, you have to understand that the advice to increase P when you increase E is on the assumption that women are actually absorbing the E well and therefore their serum levels are going up. If your serum E is 150pmol then you're not really absorbing it. Other women out there are on 2 pumps of gel and 100mg utrogestan and their serum levels are 450pmol. They don't need to increase their P. Because they are only on 2 pumps of gel. But their serum is 450..... this is why looking at dosage rather than serum levels is insane.

If I were you (this is not advice, it's literally what I would do if I were you), I would increase my E and keep the utrogestan the same. If my doctor wanted me to take more utrogestan I would tell a porkie pie, get the prescription for it but not actually take it. If I then got any problematic bleeding in future, I would revisit and reconsider all this. By the way, bleeding within 3 months of increasing your estrogen or changing products doesn't count - so ignore that - that's just settling down bleeding, I mean after that....

Thanks. That all makes complete sense. I am quite slim so wonder if lower body fat on thighs reduces E absorption?

I am currently at week 10 of 12 without any progesterone and just started the two week provera phase (10mg daily for 14 days). I’ve not experienced any progesterone intolerance yet but only on day 5.

I’m a bit scared of getting back on utrogestan continuously at 100mg due to my horrible time after 6 weeks which nurse put down to P intolerance.

One other issue is I’ve got two fibroids (5cm top, 1cm back wall). I’m also worried that they will grow bigger if I increase E?
« Last Edit: May 12, 2024, 08:59:11 PM by SaraUK »
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joziel

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Re: Running out of hope
« Reply #22 on: May 12, 2024, 09:17:41 PM »

Right, sorry I thought you were on utrogestan - with what I said, I mean I would just increase E and keep whatever you're doing with P the same. You could get your GP to check E bloods again after a few months (preferably during your period when your own E is lowest) but it's not likely to go stratospheric.

Some fibroids grow on estrogen and some really don't at all. Currently there is zero understanding about why some do and some don't.

No idea about being slim, but I'm also quite slim and absorb poorly, so maybe you're onto something.
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MrsMitch

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Re: Running out of hope
« Reply #23 on: May 13, 2024, 06:56:48 AM »

Just to add to the other replies,  I'm quite happy to post the relevant parts of my email reply from Dr Currie or forward my whole email if anyone wants to pm me with their email addresses.  Anything that helps.
« Last Edit: May 13, 2024, 06:59:30 AM by MrsMitch »
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SaraUK

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Re: Running out of hope
« Reply #24 on: May 13, 2024, 02:39:37 PM »

Right, sorry I thought you were on utrogestan - with what I said, I mean I would just increase E and keep whatever you're doing with P the same. You could get your GP to check E bloods again after a few months (preferably during your period when your own E is lowest) but it's not likely to go stratospheric.

Some fibroids grow on estrogen and some really don't at all. Currently there is zero understanding about why some do and some don't.

No idea about being slim, but I'm also quite slim and absorb poorly, so maybe you're onto something.

Thanks. I actually spoke to the menopause nurse today and she has suggested doing a blood test to test my current estrogen and testosterone as I explained how I don’t think I’m absorbing it.

She also informed me that long cycles of unopposed E are no longer Sufi due to new uk guidelines. So I’ll need to sort something out about that soon.

Even my meno nurse is restricted in even prescribing me blissel gel to try. Apparently not approved for prescribing in my area  :(

I will be very interesting to see how rock bottom my numbers will be on one pump, compared to when I was only 159 on 3 pumps.  :-\
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SaraUK

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Re: Running out of hope
« Reply #25 on: May 13, 2024, 02:40:42 PM »

Just to add to the other replies,  I'm quite happy to post the relevant parts of my email reply from Dr Currie or forward my whole email if anyone wants to pm me with their email addresses.  Anything that helps.

Hi, thanks. I tried to pm you but it wouldn’t let me for some reason.  :(
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CLKD

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Re: Running out of hope
« Reply #26 on: May 13, 2024, 03:33:58 PM »

new uk guidelines. many regimes are given 'off licence' anyway.  Did the Nurse give you a copy of these?  Nurse Practitioners are able to prescribe many medications, this Nurse may not have taken enough extra training in order 2 prescribe  :-\.  I would have thought that HRT was standard across the Country: 'not approved in your area'  R U in Scotland where Rules are different?

it should be this difficult  :poke2: :bang:
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SaraUK

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Re: Running out of hope
« Reply #27 on: May 13, 2024, 09:44:32 PM »

new uk guidelines. many regimes are given 'off licence' anyway.  Did the Nurse give you a copy of these?  Nurse Practitioners are able to prescribe many medications, this Nurse may not have taken enough extra training in order 2 prescribe  :-\.  I would have thought that HRT was standard across the Country: 'not approved in your area'  R U in Scotland where Rules are different?

it should be this difficult  :poke2: :bang:

I’m in Cheshire. She normally prescribes most thing, but Blissel gel had a note on saying “not for prescribing”. I don’t understand why some gp areas are different.

Any ideas how I can get hold of this to at least test and no doubt add it to my drawer of many topicals that make my burning worse  :-\
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Jools66

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Re: Running out of hope
« Reply #28 on: May 14, 2024, 05:55:21 AM »

Hi
I don't know if this would help you as a suggestion .... I had similiar problems for months and as a last resort my doctor prescribe me trimovate cream ( which babies get apparently) - solved all my external irritation. Maybe worth a go?
J
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MrsMitch

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Re: Running out of hope
« Reply #29 on: May 14, 2024, 06:34:13 AM »

Here's the relevant bits of the reply to my email:
- If you have vaginal dryness you should be offered vaginal oestrogen, which is put directly into the vagina as a pessary, cream or a vaginal ring. You can use vaginal oestrogen for as long as you need to, even if you are already using HRT. Moisturisers and lubricants can also help. If vaginal oestrogen doesn't help to start with you may be offered a higher dose.

Previously we often used Vagifem 25 twice weekly, which provided 50mcg of estradiol per week. There were no concerns about the safety of this, it was taken off the market because of economics. Vagifem 10 or Vagirux 10 used twice weekly provides only 20mcg of estradiol per week. The option of up to 5 times weekly is therefore just replacing the same amount as we used previously. Perhaps 3 to 4 times weekly will be enough. Please feel free to share this information with your GP, including the NICE reference.
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