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Author Topic: Utrogestan intolerance - other Progestin options and longer cycles?  (Read 869 times)

Tumbleweed

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I am intolerant to the Utrogestan I have been on for two years continuously (have felt absolutely terrible on it) and want to firstly, change the Progestin to one that makes me feel less unwell every day.

I also feel my body does not do well with Progesterone every day.  Always felt worse when Progesterone was high in second part of monthly cycle when I was having regular periods and then better when period started and until after next ovulation.

Many years ago, I used Norethisterone as period delay pill when I was much younger and had no issues with using this.  So if this was an option for the Progestin part in HRT regimens, I think I could do better on this.

Could Norethisterone be used as the Progestin part in HRT and at what doses? 

Are there any contraindications or disadvantages using Norethisterone this way? 

Would this also be an acceptable regimen to the well known menopause doctors and clinics I'm hoping to consult with next month?

Also hoping that whoever I talk to will agree to a longer cycle of say 6 weeks or a three monthly cycle.

NICE seems to imply here that three monthly cycle is OK for those who struggle with Progesterone - see here - https://cks.nice.org.uk/topics/menopause/prescribing-information/hormone-replacement-therapy-hrt/#adverse-effects

What would be the doses of Norethisterone needed for a 6 week or three monthly cycle and the amount of days one would need to take for with each cycle?

Also need recommendations for clinics eg Newson Health or BUPA Menopause care plan.  Anyone used these??

I'm looking for a clinic that would allow the above, so Norethisterone rather than Utrogestan, and a longer cycle ideally due to my Utrogestan intolerance and failure to do well on continuous therapy.

Can anyone help me here?  Looking for others with experiences with various clinics? 

Also anyone that uses Norethisterone as their Progestin?

Hurdity if you are around, you seem to be our guru here so your input would be useful also.

I'm also interested in what MaryG might be able to add since I saw she had been prescribed a bespoke Progesterone from her clinic in London who sound like they really listen and treat the person as an individual rather than prescribing the same thing for everybody.

Is there a way of tagging members here to attract their attention, there doesn't seem to be a way of doing that hence me writing the names of two members here whose posts seemed relevant and knowledgeable (hope you both don't mind!)




« Last Edit: March 12, 2024, 12:08:06 AM by Tumbleweed »
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Dotty

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https://thebms.org.uk/wp-content/uploads/2021/10/14-BMS-TfC-Progestogens-and-endometrial-protection-01H.pdf

Hi page 7 of this document gives you the Norethisterone doses that you need.

You could take a combined tablet that contains Norethisterone or use an Evorel Conti patch .

Or Tridestra … a long cycle hrt.

Unfortunately I don’t think there is a way of tagging people x
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CLKD

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  • changes can be scary, even when we want them

No way to tag, one relies on people reading the threads.

U could put the product name into the search box on the Forum: read associated threads and make notes. 

Some Hospitals have dedicated menopause clinics: Tumbleweed it may be worth while you looking at the web-sites to those local to you.  [as an aside did U see the news item last week about tumbleweed ........ ? ]

Let us know how you get on?
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Tumbleweed

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Just read on Newson Health website that an option would be 100mg Utrogestan vaginally every other night.

Could this be an option to try to start with?  I've read some people tolerate it better this way.  Maybe it might work for me, I'm prepared to give it a try.

Can anyone using it this way explain how to insert the capsule correctly as have never done this before and looks fiddly?

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merrygoround

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Just read on Newson Health website that an option would be 100mg Utrogestan vaginally every other night.

Could this be an option to try to start with?  I've read some people tolerate it better this way.  Maybe it might work for me, I'm prepared to give it a try.

Can anyone using it this way explain how to insert the capsule correctly as have never done this before and looks fiddly?
I got local irritation using utrogestan vaginally, but other side effects were less that way, still had indigestion but less than if taken orally.
I couldn't stand it because my mood was so low and I couldn't sleep on utrogestan nights whatever way I took it.
Evorel Conti patches contain naturally identical oestrogen alongside norethisterone in a transdermal patch.
Unfortunately I couldn't tolerate those either after a few months, but it wasn't as bad as a daily capsule or two of utrogestan and you might have better luck with those ingredients. The patches are also better tested than utrogestan, so I've heard.
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sheila99

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Certainly worth trying vaginally. You can do it with the utro you already have, you don't need a private appointment for it. Just push it up as far as you can before you go to bed. If you issues are digestive it should cure them but I get disrupted sleep and am doped all day on it, it makes no difference which way I take it. I am also fine on noresthisterone, when I developed an allergy to the glue in evorel patches my gp wouldn't prescribe it. Might be worth checking with your gp before going private. I use a 6 week cycle so I have more time off utro. Haven't told my gp but my cycle has always been 6 weeks anyway. I don't think a 3 month cycle is safe unless you use tridesta which is designed for it. Is evorel an option for you?
  Newson thinks you can half the utro dose if used vaginally, the BMS and manufacturer think you should take the normal dose. If you're on a high oestrogen dose and use half utro it might be wise to have the occasional scan to make sure there's no build up.
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Mary G

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Tumbleweed, because you are currently using Utrogestan, it would make sense to start by using 100mg vaginally every other day as Sheila suggests.  This gives you the magical 50mg progesterone every day which most women tolerate well.

Next up would be Dotty's suggestion of trying a norethisterone based combined patch or pill.  You will soon be able to gauge how well you tolerate norethisterone and of course there is a chance that you could react to it differently now that your own hormone levels have dropped.

Another option would be a Mirena coil or a different form of progesterone like Provera (synthetic) or Cyclogest (body identical).

Bespoke, compounded progesterone is the last port of call before opting for a hysterectomy.  It is extremely good and very effective in terms of womb protection but it involves a lot of health checks and it costs money.  For me it was definitely worth it because it made HRT viable but I would try all the options above first, not least to rule them out for your own satisfaction.

When I tried norethisterone I took 5mg every day for 7 days on a monthly cycle.  It's strong stuff and you could use it on a long cycle but there is a chance you will have breakthrough bleeding before the three months are up if you are taking a high dose of oestrogen.  For a three month cycle I would imagine the norethisterone dose is something like 5mg for two weeks.

« Last Edit: March 11, 2024, 04:14:19 PM by Mary G »
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Tumbleweed

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Thanks everyone.

Re Utrogestan used vaginally - so 100mg every other day used this way would be sufficient, is that correct? 

It does seem to imply that 100mg every other day used vaginally is OK on the Newson Health Progesterone Intolerance Factsheet which I found earlier today on their Balance by Newson Health pages.

Can you get some kind of applicator to use for this method?  I have some problems with hand dexterity/fine tremor due to an autoimmune condition so an applicator would maybe be easier for me to do this more easily.

Re Newson Health - I'm seriously considering an appointment with one of their doctors if vaginal Utrogestan still causes significant problems for me.  Are they likely to be able to sanction Norethisterone or Provera off label as an alternative to Utrogestan?

Really appreciate all your help so far, I'm finding it all quite confusing to be honest! :o
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Tumbleweed

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One other things that might complicate things further is I often sleep half sitting up/half lying down in bed due to a back and neck problem. 

Would that negate the effect or lessen effectiveness of Utrogestan used vaginally?
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Mary G

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Tumbleweed, 100mg vaginal Utrogestan is enough for most women but it's advisable to have a TVS scan every year to check that you are getting adequate clearance.

You can usually get hold of an applicator at a pharmacy or with thrush treatment cream.

I'm sure Newson Health would be more than happy to prescribe norethisterone or Provera.  Once you have had an in depth consultation and given them your history, I'm sure they will give you several option.  The thing is, they will listen to you and give you plenty of time to raise any concerns you may have.

I don't think you need to worry about Utrogestan and the way you sleep but it is important to make sure you place the capsule next to the cervix.


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merrygoround

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Thanks everyone.

Re Utrogestan used vaginally - so 100mg every other day used this way would be sufficient, is that correct? 

It does seem to imply that 100mg every other day used vaginally is OK on the Newson Health Progesterone Intolerance Factsheet which I found earlier today on their Balance by Newson Health pages.

Can you get some kind of applicator to use for this method?  I have some problems with hand dexterity/fine tremor due to an autoimmune condition so an applicator would maybe be easier for me to do this more easily.

Re Newson Health - I'm seriously considering an appointment with one of their doctors if vaginal Utrogestan still causes significant problems for me.  Are they likely to be able to sanction Norethisterone or Provera off label as an alternative to Utrogestan?

Really appreciate all your help so far, I'm finding it all quite confusing to be honest! :o
Doctors prefer to prescribe norethisterone or provera because they give greater protection, which is the whole point of them.
These are licensed for HRT and easy to get prescribed.
It's usually more difficult to get Utrogestan because it's newer and not proven either way yet, the vaginal use is off label in the UK but not in France or Belguim.
My GP refused me Utrogestan for over a year even though I've always had bad intolerance to all progestins. I had to demonstrate that the cheap ones (provera, norethisterone and levengestrol) make me want to die every single time I take them, then I had to endure months of no HRT because the GP refused to believe in progestin intolerance during menopause. 
I had to get a letter from a specialist telling them to prescribe me utrogestan. The specialist muttered I should never have been referred when I just wanted normal HRT and I'm a slim non smoker etc.
Since menopause I've completely lost faith in my GP, I mean total and complete mistrust now because my GP and her locum ganged up to gaslight me into believing those were the rules, although she later explained in an apologetic way that she was protecting me from myself in some way, because so many women don't realise the dangers inherent in HRT...
That was only after the practice manager found out, from me, that they lied in unison.
I'd suggest that your GP might be making it up about not being allowed to prescribe what you want. Mine certainly did.
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Mary G

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Thanks everyone.

Re Utrogestan used vaginally - so 100mg every other day used this way would be sufficient, is that correct? 

It does seem to imply that 100mg every other day used vaginally is OK on the Newson Health Progesterone Intolerance Factsheet which I found earlier today on their Balance by Newson Health pages.

Can you get some kind of applicator to use for this method?  I have some problems with hand dexterity/fine tremor due to an autoimmune condition so an applicator would maybe be easier for me to do this more easily.

Re Newson Health - I'm seriously considering an appointment with one of their doctors if vaginal Utrogestan still causes significant problems for me.  Are they likely to be able to sanction Norethisterone or Provera off label as an alternative to Utrogestan?

Really appreciate all your help so far, I'm finding it all quite confusing to be honest! :o
Doctors prefer to prescribe norethisterone or provera because they give greater protection, which is the whole point of them.
These are licensed for HRT and easy to get prescribed.
It's usually more difficult to get Utrogestan because it's newer and not proven either way yet, the vaginal use is off label in the UK but not in France or Belguim.
My GP refused me Utrogestan for over a year even though I've always had bad intolerance to all progestins. I had to demonstrate that the cheap ones (provera, norethisterone and levengestrol) make me want to die every single time I take them, then I had to endure months of no HRT because the GP refused to believe in progestin intolerance during menopause. 
I had to get a letter from a specialist telling them to prescribe me utrogestan. The specialist muttered I should never have been referred when I just wanted normal HRT and I'm a slim non smoker etc.
Since menopause I've completely lost faith in my GP, I mean total and complete mistrust now because my GP and her locum ganged up to gaslight me into believing those were the rules, although she later explained in an apologetic way that she was protecting me from myself in some way, because so many women don't realise the dangers inherent in HRT...
That was only after the practice manager found out, from me, that they lied in unison.
I'd suggest that your GP might be making it up about not being allowed to prescribe what you want. Mine certainly did.

That GP and the locum sound like horrors and crap doctors too.  I would have zero confidence in either of them and would not trust them to properly diagnose anything.

We are getting stories like this on MM all the time now and I think some honesty is needed.  Basically GPs can't cope because they don't have the knowledge and expertise.  Their menopause training is very, very basic, they can't monitor women properly because the NHS doesn't have the funding or the capacity to offer transvaginal scans so they fob women off with the cheapest HRT with high doses of progesterone to cover their backs probably knowing it won't work but it gets rid of the woman.  They are not interested because the menopause is not life threatening.

It certainly seems to be getting much worse.



« Last Edit: March 12, 2024, 12:31:49 PM by Mary G »
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merrygoround

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That GP and the locum sound like horrors and crap doctors too.  I would have zero confidence in either of them and would not trust them to properly diagnose anything.

We are getting stories like this on MM all the time now and I think some honesty is needed.  Basically GPs can't cope because they don't have the knowledge and expertise.  Their menopause training is very, very basic, they can't monitor women properly because the NHS doesn't have the funding or the capacity to offer transvaginal scans so they fob women off with the cheapest HRT with high doses of progesterone to cover their backs probably knowing it won't work but it gets rid of the woman.  They are not interested because the menopause is not life threatening.

It certainly seems to be getting much worse.
I think it's getting worse in the UK simply because the NHS funding situation is in crisis, so someone has to lose out. The squeaky wheel gets fixed because it can't be ignored. Older women have been almost invisible, chronically ignored, we are not perceived to be the squeaky wheel. The way women were treated over pensions in the UK would never have happened to men, they just weren't heard because they were older women. In many ways menopause is life threatening, I think Dr Newson says that HRT halves our risk of coronary disease, it was in a podcast from last month. That must save health service money. Also a woman is seven times more likely to commit suicide at menopause than during her fertile years, I read some patronising nonsense about women being depressed about losing fertility, nah, it's hormones, chemicals in the brain, we have replacements that work for most women, yet most women think it's better if they can get through "naturally".
Maybe they are right and I'm wrong, depends who you listen to.
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Hurdity

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Re: Utrogestan intolerance - other Progestin options and longer cycles?
« Reply #13 on: March 12, 2024, 07:26:33 PM »

I am intolerant to the Utrogestan I have been on for two years continuously (have felt absolutely terrible on it) and want to firstly, change the Progestin to one that makes me feel less unwell every day.

I also feel my body does not do well with Progesterone every day.  Always felt worse when Progesterone was high in second part of monthly cycle when I was having regular periods and then better when period started and until after next ovulation.

Many years ago, I used Norethisterone as period delay pill when I was much younger and had no issues with using this.  So if this was an option for the Progestin part in HRT regimens, I think I could do better on this.

Could Norethisterone be used as the Progestin part in HRT and at what doses? 

Are there any contraindications or disadvantages using Norethisterone this way? 

Would this also be an acceptable regimen to the well known menopause doctors and clinics I'm hoping to consult with next month?

Also hoping that whoever I talk to will agree to a longer cycle of say 6 weeks or a three monthly cycle.

NICE seems to imply here that three monthly cycle is OK for those who struggle with Progesterone - see here - https://cks.nice.org.uk/topics/menopause/prescribing-information/hormone-replacement-therapy-hrt/#adverse-effects

What would be the doses of Norethisterone needed for a 6 week or three monthly cycle and the amount of days one would need to take for with each cycle?

Also need recommendations for clinics eg Newson Health or BUPA Menopause care plan.  Anyone used these??

I'm looking for a clinic that would allow the above, so Norethisterone rather than Utrogestan, and a longer cycle ideally due to my Utrogestan intolerance and failure to do well on continuous therapy.

Can anyone help me here?  Looking for others with experiences with various clinics? 

Also anyone that uses Norethisterone as their Progestin?

Hurdity if you are around, you seem to be our guru here so your input would be useful also.

I'm also interested in what MaryG might be able to add since I saw she had been prescribed a bespoke Progesterone from her clinic in London who sound like they really listen and treat the person as an individual rather than prescribing the same thing for everybody.

Is there a way of tagging members here to attract their attention, there doesn't seem to be a way of doing that hence me writing the names of two members here whose posts seemed relevant and knowledgeable (hope you both don't mind!)

Hi Tumbleweed

Sorry not to have answered your post but I've been away and just come back - I don't log in to MM when away.

Thanks but definitely not a guru at all, by the way - just old, and have been on HRT for 16 years and have read around the subject a bit, as well as having been on this forum initially since 2010 though not as long as some  ::) ! There are many members who are equally competent to answer queries like this, and my knowledge is only very limited to certain topics anyway! You've had a lot of good replies, but as you asked me I will answer on a separate thread - some will be repeated but will try to comment on what others have said if I can at the same time.

Hurdity x
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Hurdity

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Re: Utrogestan intolerance - other Progestin options and longer cycles?
« Reply #14 on: March 12, 2024, 08:17:02 PM »

Your first sentence:

"I am intolerant to the Utrogestan I have been on for two years continuously (have felt absolutely terrible on it) and want to firstly, change the Progestin to one that makes me feel less unwell every day."

I understand this - there is no way I would take Utrogestan, or any progestogen every day due to the side effects.

Some questions:

First - it would be good to know if you are peri- or post-menopausal, if you know, or if you don't, what your periods were doing during the 12 months or so leading up to your starting HRT?

Second what type and dose of oestrogen you are taking?

Third whether the regime you were on for two years controlled your bleeding - and that may well be largely determined by whether you are post-menopausal or not?

To answer some of your specific points:

"Could Norethisterone be used as the Progestin part in HRT and at what doses?

Are there any contraindications or disadvantages using Norethisterone this way? 

Would this also be an acceptable regimen to the well known menopause doctors and clinics I'm hoping to consult with next month?
"

As you see from the answers - norethisterone is aready used as the progestogen part of HRT - but only in combi preparations, ie as a patch Evorel conti (or sequi), or in tablet form - in various brands you can find in the HRT menus on this site.

You've said you tolerated norethisterone in the past, so depending what type and dose of oestrogen you are taking , and whether you are peri or post-menopausal, one of these may suit you. The problem is the dose is fixed so if you are on a higher oestrogen dose then this is impossible.

Norethisterone is available separately off-label (not exactly though) as part of HRT. The BMS does recommend it - obviously as it is used as part of HRTin combi products. The problem is that the dose available for gynaecological problems, is 5 mg tablets, which is much higher than the 1 mg that is part of medium dose HRT tablets. For those who are progestogen intolerant, this is far too high. However if you tolerated it, then this could be an option.

Because it is not available separately then your doc might not prescribe it - but this would be not very enlightened since it is already used as part of HRT, though not trialled at higher doses. It's clearly going to be effective at higher doses though. just potentially undesirable.

You most definitely should not have to pay for private treatment to get norethisterone should you want to try this as a separate progestogen. Dotty gave you the BMS link and you can just remind them that it is in use as a combi product.

"Also hoping that whoever I talk to will agree to a longer cycle of say 6 weeks or a three monthly cycle.

NICE seems to imply here that three monthly cycle is OK for those who struggle with Progesterone - see here - https://cks.nice.org.uk/topics/menopause/prescribing-information/hormone-replacement-therapy-hrt/#adverse-effects

What would be the doses of Norethisterone needed for a 6 week or three monthly cycle and the amount of days one would need to take for with each cycle?
"

As already stated the 3 monthly regime is the proprietary branded product Tridestra. The BMS recommendations do not even mention longer cycles which seem to have fallen out of favour, I think due to evidence of some adverse effects? Some of us are on longer cycles approved by our doctors - mine is through a GP on NHS. No need to go privately though I appreciate some practices do not appear to have sufficient expertise ( shame on them!). You could write an e-mail (£30 per question) to Dr Currie - manager of MM, and then take her reply to your doc. I did this once :)

The amount of days per cycle of progestogen recommended is 12-14 days per month depending on the progestogen, though for lower doses of oestrogen BMS for example suggest minimum 1 mg norethisterone per day for 10 days per month for low dose [ie lower dose oestrogen] sequential preparations.

A 3 month cycle would not be recommended for higher doses of oestrogen, I doubt,  due to risk of endometrial thickening and I'm not sure that any specialist would suggest this nowadays, even private docs, though they might permit 2 monthly cycles with scans?

"...since I saw she had been prescribed a bespoke Progesterone from her clinic in London who sound like they really listen and treat the person as an individual rather than prescribing the same thing for everybody."

Obviously, those who have the funds can afford to pay for the longer appointments where they have time to be listened to, which is very sadly lacking in NHS - of course we should have a menopause clinic in every town!!!

Bespoke progesterone from private clinics - this is not licensed nor regulated and not recommended by the BMS - because the products are not consistent and have not been tested and it is important that the womb is protected. What works for one woman may not work for another.  Also very expensive. I can't advise here other than put across the recommended view of the medical profession as stated here and at BMS.

"Is there a way of tagging members here to attract their attention, there doesn't seem to be a way of doing that hence me writing the names of two members here whose posts seemed relevant and knowledgeable (hope you both don't mind!)"

I don't mind but someone had to write to me to alert me that my opinion was being sought. However once you have made 10 "useful" posts, you can send private messages and that way you can write to whoever you want to - I see you can do that now.

I'll answer your later posts on another thread. This one's getting long :)

Hurdity x
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