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Author Topic: utrogestan/estrogel support group  (Read 730567 times)

Hurdity

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Re: utrogestan/estrogel support group
« Reply #1095 on: October 07, 2017, 06:57:39 PM »

Hi Mav196

Have only just seen this as I was away for a long weekend then. No wonder you are confused because actually the licensed dose of utrogestan is 12 days per 28. I suspect she has said 14 days because it's easier to count - as with the patches where the combi patches are for a fortnight followed by a fortnight of oestrogen only. My view is that it is overkill to take it for this long (14 days) - unless your personal situation (re womb lining and any issues eg fibroids, or higher oestrogen dose) demands this.

I just posted on another thread about this - a long response and can repost here if it helps so that it's on this thread too! Cassie's is the easiest way but may not be appropriate if you are still peri-menopausal.

"There always seems to be confusion about when to take Utrogestan -  understandably!

Firstly it depends on whether you are peri or post-menopausal  and the length of your normal menstrual cycle – ie whether you are trying to fit in with the average 28 day cycle?

The licensed dose of Utrogestan for cyclical HRT is 200 mg for 12 days per 28 day cycle days 15-26.

To do this - if you are in early peri-menopause: for a 28 day cycle – say you are starting HRT (Utrogestan and Estrogel)  for the first time : Day 1 is the first day of your  (normal) bleed. Start the oestrogel  Day 1. When you get to Day 15 start the Utrogestan. Take it for the last time on Day 26 (ie 12 days). Day 27 go back to the oestrogel only and on Day 28 oestrogel only again. Ideally you would start your bleed on Day 1 again – but in practice it may not happen. However the usual advice is to stay with the cycle and keep with the course of Utrogestan. You just carry on taking the oestrogel from Day 1 (whether or not your bleed arrives) until Day 15 again. Easy to set up on your calendar as it will be the same day of the week, but 4 weeks after your first Day 1 if you see what  I mean!

Also if you are having irregular periods then you might be waiting forever for your next period ie Day 1 so the usual advice is to start anytime. You might then be out of sync with your own cycle so sometimes you can readjust by starting to count again on your bleed (to give a new Day 1) if you end up getting periods substantially at the wrong time.

Once your periods become few and far between or you are post-menopausal then your natural cycle becomes irrelevant or nearly so. Then you can in effect choose your cycle as Cassie does – and keep with the 28 day cycle (which keeps your bleeds/progesterone withdrawal symptoms to the same days of the week if you respond the same each month) or stretch the cycle a bit to 12 cycles per annum rather than 13 and go with the calendar month ie the first of every month to start your Utrogestan (or whatever day you choose eg 15th !).

Some of us stretch the cycle even further (with doc's approval) due to lack of bleed on the shorter cycles – and this minimises progesterone exposure.

Even if you are peri-menopausal it might work out OK as Cassie does it ie take it every calendar month on the same date?"

Does this make sense?

Hurdity x
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Mav196

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Re: utrogestan/estrogel support group
« Reply #1096 on: October 07, 2017, 09:55:48 PM »

Ladies thanks so much for your replies...i have had to make the decision to stop the HRT after only 9 days - unfortunately my eyelash, eyebrow and pubic hair is shedding at an ALARMING rate - this started last month when I was on Cerazette for 14 days (and in 2015 when I was on Cerazette) I think it is an allergy/intolerance to the progesterone and so I was afraid to continue pumping in more progesterone (Utrogestan) with the HRT. I have an appt at end of this month with a dermatologist who specialises in hair loss as I need to understand if this hair loss is caused only by synthetic progesterone or if I am going to continue to have this problem with utrogestan also. Hair loss has been an issue for me since 2015 - a lot of the eyebrow, eyelash and body hair that I lost never regrew and so this is something that i need to get to the bottom of once and for all. I realise that we do lose hair as we age but an abrupt loss starting at age 45 is prob not normal.
Am totally frustrated now as i really felt that the HRT was helping my daily headaches.
I will keep you posted
Mav
« Last Edit: October 07, 2017, 09:59:28 PM by Mav196 »
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rachthemidwife

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Re: utrogestan/estrogel support group
« Reply #1097 on: October 08, 2017, 09:56:50 PM »

Hi all.
Its been about a year since I posted on here and I'm back because I'm in a bit of a pickle and could really use some helpful insights.

I was on 2mg of sandrena every day and 200mg Utrogestan for 12 days a month. I'd started on this regime because I couldn't tolerate the daily 100mg Utrogestan and 1mg sandrena regime and felt very sure that it was the progesterone I was sensitive to. My meno specialist nurse was happy for me to move to the 200mg for 12 days and see how much sandrena was the right balance. Anyway, all was ok to start with but then things started to go wrong - dry eyes, dry hair, increasing tinnitus, muscle aches, ongoing voice issues. Things got so bad that my optician wanted me to have my tear ducts operated on to “plug” them because my eyes had become worryingly dry. She told me that it the oestrogen part of my HRT. I decided to take an HRT break because I just wanted to find out where I was in the menopause (I started on HRT in the peri menopause). I quickly developed terrible hot flushes every 20 minutes day and night and my sleep deteriorated to the point I wasn't safe to drive. Back to the menopause nurse who supported my wish to try again. She suggested I start on 100mg utrogestan daily and then one pump of estrogel and gradually increase it. She agreed that the 2mg of sandrena might have been too much and that I was happy to convince myself that I had been wrong all along and it was, indeed, oestrogen that was the problem, not progesterone.
Happily, I couldn't get the estrogel immediately from the chemist so I had the ideal opportunity to prove that I didn't need oestrogen after all!

Needless to say, after just 3 days my eyes were drying out and my tinnitus was terrible and my joints ached with no loss at all of hot flushes. After a week I'd lost my voice totally. I started the estrogel one pump a day, the flushes eased but all the progesterone symptoms stayed and are getting worse and my mood has slumped and is flat. I am feeling completely desperate and don't know what to do - it seems that I have a choice between unmanageable menopause symptoms or unmanageable progesterone symptoms.

What I don't understand is: I was on other HRT regimes before (TriSequens, Elleste, tibilone, femostan conti) and I didn't get these severe progesterone side effects. I moved on each time when the benefits started to wear off as I slipped towards the menopause and then deeper into it. Why does utrogestan cause these side effects?

Secondly, I know that my NHS menopause nurse is adamant that, if I take utrogestan less than continuously I must use 200mg (vaginally) but the symptoms build and build and don't wear off during my break. But I read a lot about women using 100mg for 7days and wondered if I can only get this regime if I can find £££s for a private consultation.

Thirdly, if I decide to simply try 100mg for 7days alongside 1-2 pumps of estrogel, how do I get an endometrial scan? Can I book one myself?

So sorry for the long post but I wanted to give a clear picture of what is going on. I am feeling very worried about my declining mood.

Can anyone at all shed some light on all of this please? Thank you so much for your time.
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Hurdity

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Re: utrogestan/estrogel support group
« Reply #1098 on: October 09, 2017, 01:45:21 PM »

Hi Rachel FD

Sorry to hear you are struggling still.

To try to answer your questions (I'm sure others will too!):

1. Because progesterone (as in utrogestan) is unstable in the body it has to be taken in large doses in order for the right concentrations to get to the uterus where it is needed. The metabolic by-products ( and therefore side effects) are much greater when taken orally due to the "liver first-pass effect" ie has to go through liver as it goes through digestive system. There is no getting away from this and vaginal use minimises the side effects and theoretically permits lower doses to be taken. There is limited research demonstrating this (lower vaginal doses to be effective) but sadly no licensed appropriate vaginal dose - so any dosing is off licence either by private/NHS gynaes or enlightened GPs.

2. Your nurse is sticking rigidly to the licensed oral dosing and perhaps is not qualified to permit variation from this. Can you visit a GP with gynae/menopause specialism or ask for a referral to your nearest menopause clinic (there might be a wait) - you should not need a private consultation? The 7 day regime is strictly off -licence and in some women could lead to endometrial thickening hence should only be done under supervision.

3. As above -  there may be medical reasons why adopting the 7 day prog regime would not be advisable in your case so I would not do this without medical approval. Once you have this then yes - if you can afford it, an annual scan would be advisable - just to check the uterus lining is not over-thickening. Ideally you want to monitor this before you reach the stage of abnormal bleeding - to guard against the possibility of endometrial cancer. The risk is greater with overweight women and those who consume too much alcohol ( more than rec limits).

If you are now post-menopausal ( and looking back at your posts you may well be?) another option is to try a longer cycle as I do ( also under supervision). So I take utrogestan every 6-8 weeks. I still do the 12 days x 200 mg vaginally but doing the full course allows all the structural changes to take place before the lining is shed - that's my take on it anyway. It is dose and duration of progesterone which governs the behaviour of the uterus lining following oestrogenic stimulation. Once the prog has left my system - I feel absolutely fine for the next say 5 weeks on oestrogen only and I don't feel the effects build up cumulatively. I definitely wouldn't want to take it 12 days monthly. I'd be a tired lethargic headachey heap and I'm far too young to feel like that (mid 60's!).

Hope this helps and I'm sure others will be along to give their take on the 7 day Studd regime  ::)

Hurdity x
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Mary G

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Re: utrogestan/estrogel support group
« Reply #1099 on: October 09, 2017, 07:31:15 PM »

rachel FD, if you feel that your progesterone symptoms are unmanagable then perhaps you should consider a private consultation.  You have two choices, using the NHS and sticking with their licensed dose of progesterone or going to a private consultant who does not stick to the NHS guidelines and is happy to prescribe a lower dose.  Many of us don't have a choice because we can't tolerate any form of progesterone for very long and therefore it's reduce the dose or bust.  Like you, I experienced the cumulative effect of Utrogestan and each time it took longer and longer for the effects to wear off.

You can book uterine scans yourself and one member did it through Mothercare if I remember rightly.  I think it costs about £100.

I was on the 100mg 7 day Utrogestan regime (I have since changed to a different regime) and didn't have any problems with it but of course it is sensible to have regular scans to make sure it is working properly.
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rachthemidwife

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Re: utrogestan/estrogel support group
« Reply #1100 on: October 09, 2017, 09:53:01 PM »

Thanks so much Hurdity. To clarify - I'm
seen by a menopause nurse specialist at our local menopause clinic and she has been brilliant with me. She really supports me to experiment but, as you say, she is bound to a degree by NHS and NICe guidelines. I do use the Utrogestan vaginally but it doesn't help that much as it still gets in systemically. I have Ehlers Danlos Syndrome which makes all the connective tissue in my body fat too soft and so I get joint, voice and hearing problems at the best of times but the softening effects of progesterone really crank it up (preganancy was horrid!) increasing oestrogen doesn't, it seems, reduce the effects of the progesterone. The specialist nurse says that, if I use utrogestan less than continuously, I must take 200mg but that is just too much for me and accumulates.

I guess I'm puzzled as to why utrogestan seems to upset many women more than other forms of progesterone and whether I can ask my NHS specialist to prescribe 100mg for a shorter time. Did you get into your regime which suits you via the NHS or did you have to put your hand in your pocket? Is it worth asking my NHS specialist about a 7 day 100mg regime?

My current bugbear is that I'm now not only taking HRT but also ranitidine for heartburn, regular painkillers for my joints, menthol sweets for my hoarse voice and senna for constipation. The painkillers and progesterone are making my tinnitus so bad that I'm being fitted with hearing aid- sound enrichment devices later this week!

I know myself well enough to know that my joints love oestrogen and it also stabilises my small ear bones too which eases my tinnitus.

Thanks so much again. Much appreciated.
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rachthemidwife

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Re: utrogestan/estrogel support group
« Reply #1101 on: October 09, 2017, 10:00:14 PM »

Hi Mary G. Thank you so much for taking the time to read my lengthy post and reply. That's exactly it: reduce the dose or bust!! I feel really low in mood and my joints are quickly deteriorating- even my husband has noticed more popping as I move!
So did you go private? If so, was it in London and did it break the bank? I'm happy to break my bank if I can be sure of a good in-rushes consultation and a personalised approach but, obviously, if possible, I'd prefer to keep costs down.

Interesting to know I can self-book a scam - D'you do that or does your dr sort it out??

Thanks again Mary G.
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Mary G

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Re: utrogestan/estrogel support group
« Reply #1102 on: October 09, 2017, 10:35:08 PM »

rachel FD, I am always happy to help if I can.  My GP was no help at all and I ended up having to seek help privately so I consulted Professor John Studd in London and it cost about £300.   He prescribed 3 pumps (now reduced to 2 pumps) of Oestrogel, 7 days of 100mg Utrogestan (vaginally) and also testosterone.  It was the low dose Utrogestan which gave me a much needed breakthrough and made HRT viable. 

Because I am severely progesterone intolerant and on a very low dose of Utrogestan, I have to have regular scans with a gynaecologist who I can visit whenever I need to.   I am a particularly difficult case because all types of progesterone used in HRT preparations trigger debilitating silent migraines so I have to keep the dose very low to avoid them.  Basically the higher the dose/longer the duration, the more it builds up in my system and the more migraine attacks I get.  I also have a migraine specialist who said that progesterone changes the way your brain receptors work so in my particular case, more progesterone means more migraines and sometimes it takes me a long time to adjust back to normal after a progesterone cycle.  I have since moved to a different HRT regime which does not contain progesterone.

You are unlikely to get any NHS medic to agree to the 7 day Utrogestan regime, their guidelines are very rigid and they probably won't budge.

One question, are you post menopause?  If so, you might want to look into a new HRT called Duavive which is bleed/progesterone free.  This is an interesting product because it diverts oestrogen away from the womb (hence no periods) and the breasts where it is not needed and (hopefully) works better on the parts of the body it needs to.

I hope that helps.
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Kkay

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Re: utrogestan/estrogel support group
« Reply #1103 on: October 10, 2017, 06:11:41 AM »

Hello Mary G,

I have been reading your thread - thank you for sharing your experience, it is very useful to learn about these different combinations.

The Duavive sounds very interesting. Is that what you are on now?

Good luck

Kkay
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rachthemidwife

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Re: utrogestan/estrogel support group
« Reply #1104 on: October 10, 2017, 08:30:00 AM »

Thanks Mary G that's really helpful. I am 56 so definitely menopausal and I didn't bleed at all during my months off HRT. I started on HRT as soon as I started in perimenopause so it's been about ten years I guess. Possibly longer.
How horrid to be so beset with migraines: my mum used to suffer terribly and my husband gets ocular migraines. Progesterone is often a problem in the EDS community but the NHS tends towards a more one-size-fits-all approach (I speak as a non-NHS midwife so understand the constraints of the system) which doesn't help those of us who don't quite fit the box.
I have a telephone follow up with the menopause specialist nurse in mid-November and not sure how to make it through to then as I'm feeling so rough. I actually considered asking for a hysterectomy so I could then have oestrogen only! Bonkers. I think £300 seems an ok price actually- thought it'd be much more than that. D'you just see Mr S. once or D'you have to keep seeing him? Will he advise on how often to get scans and D'you have to keep your GP informed? Also, would u need to ask my GP to print off all the different HRT brands I've taken over the years (as my hormones have slid, the HRR stops working and I've been moved to a different one).

Sorry for all the questions and I do really appreciate your time and honesty - so helpful and reassuring as I don't have anyone else to ask.
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Mary G

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Re: utrogestan/estrogel support group
« Reply #1105 on: October 10, 2017, 12:58:38 PM »

rachel FD and Kkay, until a couple of days ago, I was going to start a new thread on my new Bazedoxifene/Oestrogel (2 pumps) trial but now I am not so sure and I'm erring on the side of not starting the thread.  Please send me a PM and I will give you all the details, it is going very well indeed so far and there is lots to tell - same goes for any other interested members.

rachel FD, I am also 56 and about 10 years post menopause.  My personal view is that most HRT regimes are far too inflexible and that HRT should fit the patient, not the other way round.  You are not alone in considering a hysterectomy, I am still considering it if my latest trial doesn't fly and Professor Studd recommended it in my case.  What exactly are you supposed to do if you are severely progesterone intolerant, flick a switch and make yourself able to take it?

Problems with progesterone intolerance come up on this forum time and time again and I would go as far as to say it is the biggest problem with HRT.  That is why the new Duavive makes so much sense and I am hoping that Bazedoxifene will revolutionise HRT and also make it safer because it diverts oestrogen away from the breasts and the womb.  HRT is in a rut and needs to move forward.

In your situation, I would give Duavive a go and you could try ringing your specialist now and ask for a prescription. 

I think it is highly unlikely that the NHS would prescribe my regime of Bazedoxifene/Oestrogel and I don't think you would get it privately in the UK either.

I might have mentioned to my GP that I am on HRT but I rarely go there to be honest.  You could just see Professor Studd as a one-off if you wish.  He doesn't make uterine scans a condition of using his regime but of course it is sensible for all women to have them from time to time - how else do you check ovaries etc?

Please do send a PM and we can discuss this further.  I hope that helps.
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rachthemidwife

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Re: utrogestan/estrogel support group
« Reply #1106 on: October 10, 2017, 01:44:23 PM »

Fantastic info! S'cuse my ignorance but how do I send a PM on this site?
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Mary G

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Re: utrogestan/estrogel support group
« Reply #1107 on: October 10, 2017, 01:57:25 PM »

Rachel, if you click on my name at the side of this post, a profile will come up and you will see there is an option under 'actions' which says 'send personal message'.  Don't worry for now, I will send you my email address via PM.
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Sambeaute

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Re: utrogestan/estrogel support group
« Reply #1108 on: October 10, 2017, 06:04:44 PM »

Hi guys hope all are well. 2nd day of the oestrogel/urtogestron regime. Hope my hair doesnt fall out with the new regime. I have been on femostan and prempak c. Prempak c made me hair grow! I am 41 years of age. I was diagnosed 3 years ago. Any advice would help. Thank you
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Hurdity

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Re: utrogestan/estrogel support group
« Reply #1109 on: October 11, 2017, 07:18:18 AM »

Hi Sambeaute

 :welcomemm:

Maybe introduce yourself in the new members section so that more members can welcome you?

What doses are you taking  and are you taking it cyclically or continuously? I hope the regime works for you but if not there are different ways of taking it as you will read on here, as it's important you have replacement oestrogen at your young age.

Hurdity x
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