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Author Topic: Improvement of Sorts but...  (Read 6193 times)

Kathleen

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Improvement of Sorts but...
« on: October 25, 2018, 03:54:10 PM »

Hello ladies.

I thought I'd post this update as it may help others and any insights  would also be appreciated. I am posting  because I've conducted a little experiment that has been successful but has left me with a dilemma.

I am 62 and post meno, using 2 pumps of gel and 100mg of Utrogestan every night vaginally.  The HRT hasn't eliminated my symptoms and I still experience flushes,  jitters and palpitations. Whenever I've moaned  about this to the lovely ladies on this site  ( and I've done that a lot, sorry to say) the advice has always been to increase the oestrogen and decrease the Utrogestan.  I think that is probably the right way to go but I've resisted doing so up to now. My consultant added to my concerns when she said that she didn't agree with taking very little Utrogestan ie a long cycle and she wouldn't recommend I used more than three pumps daily adding that  I couldn't expect to have the levels of a  twenty year old. A few months ago my levels were 274 pml and she said that we can test again to see if we can get to 400 pml, though she didn't say what the plan was if even at that level I still feel rough!  I have been using a minimum of 2 pumps of gel and have also tried 3 pumps. I haven't noticed much improvement but I had spotting, very tender breasts and nausea. Some ladies suggested that painful breasts and nausea were caused by too much oestrogen so I have reduced my pump to just 1 over the last few days and hey presto, my breasts feel normal and my nausea has gone. Result! However the jitters remain and I've just had an unmistakable, full on hot flush! 

I'm now wondering if I should stick  with 1 pump of gel but reduce the Utrogestan to every other night which would mean less progesterone in my system to cause side effects and hopefully allow the small amount of oestrogen would be sufficient.

Sorry that this is such a long ramble but I wanted to keep you ladies in the loop lol. If I were in my forties or early fifties I would have no hesitation in upping my dose but what I really want at my age is to feel normal but on the lowest dose possible and  that is what I am attempting.

Thanks for reading everyone and if anyone has any opinions to share I'd love to hear them.

Wishing you all well.

K.

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Ladybt28

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Re: Improvement of Sorts but...
« Reply #1 on: October 25, 2018, 04:35:51 PM »

I'm not sure if what I have to say is any help  When I have increased my oestrogel I have had sore breasts (no nausea for me though). When I went from 2 to 3 it was particularly bad but I have now been advised to go to 4 and when I increased the dose then there was no problem.  I am currently always on 4 pumps and no sore breasts at all.  The body has adjusted. I couldn't cope on 2 pumps, flushes etc and 3 still wasn't enough either so 4 it is. (someone on here also told me you can do up 6 as a max)

I was originally on the Provera progesterone every night but I can't take that much progesterone, it made me beyond anxious and downright suicidal, so when I changed to Utrogestan I decided that even though I am post meno I would not take it continuously but on a cycle. (In fact whilst changing I went 6 weeks without any progesterone and I felt better without it but you can't not take it at all!)  I felt I could handle a bleed better than the problems continuous progesterone was causing.  I am currently into month 2 of the new regime and I still have problems with 12 days of Utrogestan - I fall down a big black depression hole, however the anxiety has gone since I upped the oestrogel, no flushes, no sore breasts and went to prog cycle instead of continuous.  I have never had any spotting.  I have one more month to do before a review but have come to the conclusion that there are a lot of women on this forum and elsewhere that use a short cycle of progesterone of 7 days, and I even know of shorter.
 
There are even some women who use their oestrogen for up to 6 weeks before they do a 12 day cycle of progesterone.  It is much disputed in the community, consultants and GP's about the safety on this but there are some eminent menopause people out there that use these methods on progesterone intolerant people quite safely and long term and there are women on here. Often those people get regular scans to ensure that the womb lining is not thickening.  I know I have problems with progesterone, so although post meno when I have my review I will be pressing to start a 7 day progesterone cycle to see if I can manage that with a reserve plan of the 6 week/12 day lengthening of cycle as plan B.

I am 56 and haven't felt myself for years but so much worse during the meno so I am attempting to get the right cycle for me by a process of trial and error and to be honest I trust many of the ladies stories posted here far more than any GP or consultant because they are real people with real ongoing problems who have tried loads of things, some very successfully. I don't have any qualms about the amount of HRT I have to take, just like you I just want to feel "more myself".  My view is somethings I try might make me feel worse but at least I know what NOT to do! and then I can work on other plans that just might work.

You could try upping the oestrogel because you can always decrease it if it causes problems, thats why I like oestrogel - its so flexible but if you do you must balance it with enough Utrogestan by whatever method you can tolerate most.  (you might not know what that is yet!)
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Kathleen

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Re: Improvement of Sorts but...
« Reply #2 on: October 25, 2018, 05:12:56 PM »

Hello Ladybt28.

Thank you so much for your response.

I think my worries have been compounded by my less than helpful consultant. She  disapproves of a  long cycle and when I mentioned arranging scans she said  ‘ you can't keep scanning women‘. I am annoyed at her attitude actually because one of the reasons I approached her was because I wanted to try a long cycle. This is why I am trying a different approach by reducing Utrogestan even if that means also lowering the oestrogen.  I must say judging by the way I feel tonight my experiment is not going well ( anxiety through the roof ).

Thank again and take care.

K.
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Traceylr

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Re: Improvement of Sorts but...
« Reply #3 on: October 25, 2018, 05:23:34 PM »

Greetings Kathleen,
I read you post with interest. I too want to take the lowest dose hrt for maximum effect. Im 56 and 4 years post meno. I too take utrogestan (100 mg) vaginally every night, also oestrogen ( estradot) patch originally 50 mcg changed twice a week. unfortunately I had minor spotting every 2 weeks so , experimenting , I reduced the estradot to 37.5 mcg  . The spotting stopped and the reduced oestrogen has had minimum impact ( just the odd hot flush during my sleep) which tbh happened anyway on 50mcg . I fingers crossed appear to have found a balance that works for me ( uterine scan 2.9 mm) . It has been trial and error for two years without gp input , thank goodness for this site!
You can have private scans , Mothercare does them ! Have a google for your nearest one.
Good luck with your hrt journey .
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Ladybt28

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Re: Improvement of Sorts but...
« Reply #4 on: October 25, 2018, 05:39:14 PM »

Kathleen I'm very cynical and I don't think the words "health professional" and "helpful" ever turn up in the same sentence very often.  My experience has not been good for loads of other family illness regardless of the meno so that it why I rely on what I find out here and then make an informed opinion.  Talking about women who have no underlying illness or condition, I reckon that other than a women with a womb giving up progesterone altogether or leaving it 2 months at a time, we cant do ourselves too much harm playing around with this stuff.  Yes scans cost money but by and large if you are bleeding properly for 4 days or more I also have come to the conclusion you are losing the lining of your womb.  Maybe I am being too simplistic (but I will find out soon cos someone here will put me right  ??? :))  How do you feel about shortening the cycle to the 12 days and having a proper bleed?  From what I have read on the forum there are quite a lot of ladies post meno who cannot tolerate a continuous prog regime.  It seems quite tricky to balance.  I know bleeds are a pain but at least you know where you stand.

Traceylr - unfortunately in Northern Ireland although we have Mothercare they don't do scans  When I heard about that for England on this forum I thought it was brilliant.  What a great fall back position if you have a useless GP or Consultant!
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Hurdity

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Re: Improvement of Sorts but...
« Reply #5 on: October 25, 2018, 07:05:33 PM »

Hi there Kathleen

I'm sure you know what I'm going to say! Every time you have posted about how you feel and your different HRT regimes and that you are still experiencing problems I have suggested that you try taking HRT cyclically to see how you feel on the oestrogen only - and I think several others of us have also said this too! I don't think you have ever tried this? Shorter duration ( ie a shorter course eg 10 days progesterone per 28 day cycle) or longer cycles ( eg 6-8 weeks per cycle which includes 12 days of standard progesterone), may come later if you end up feeling better for most of the oestrogen only part of your HRT (once you've got over the prog withdrawal phase). I would have tried this first ie changed from Evorel conti to Evorel sequi when you first reported problems.

I quite agree you probably don't want to be reducing the prog to alternate days - at your age you want to ensure protection of the womb.

Just to recap what I do - I use Estradot patches 62.5 mcg (50 mcg were quite sufficient for me) with utrogestan 200 mg x 12 days vaginally every 6-8 weeks - doc is fine with this and so far no uterine problems. I get a small bleed not too much and not painful.

Unofrtunately if you keep on increasing your oestrogen gel then you may well experience a resumption of flushes when you start to decrease again. There is no correlation between oestrogen levels and symptoms - this seems to vary with individuals. How did you feel when your levels were 274 pmol/l? Your jitters and anxiety could have been solely down to the continuous prog and not due to insufficient oestrogen.

Maybe you need somewhere between 1 pump and 2 - but please do try it cyclically unless you've had endometriosis or cannot bear the possibility of a bleed again!

I hope this is helpful Kathleen and apologies if I sound like a broken record - I am really willing you to be able to get sorted onto the right regime that suits you, so that you don't continue to have all these problems!

Hurdity x
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Kathleen

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Re: Improvement of Sorts but...
« Reply #6 on: October 25, 2018, 07:43:09 PM »

Hello again ladies.

Traceylr - thank you for sharing your story and I'm pleased that you've found a regime that works for you.

Ladybt28 - yep I'm fairly cynical myself these days. I once spoke to a gastroenterologist who admitted  that his department had never managed to get any  Ulcerative Colitis patients into remission so he was amazed that I was doing so well!

Hurdity - yes I knew exactly what you would say and I believe you are correct!  As I said earlier I wanted to try a long cycle and that's why I arranged to see my consultant but she was against the idea so I knew that I wouldn't have her support. Nevertheless I am going to make a note of your regime and try something similar on my own!

Once again many thanks ladies. Your help and support is invaluable and I'm so grateful to you all.

Take care everyone.

K.
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GypsyRoseLee

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Re: Improvement of Sorts but...
« Reply #7 on: October 28, 2018, 02:38:14 PM »

Hello Kathleen - lovely to hear from you.

I would echo Hurdity's suggestion and try sequential HRT? For the last 2 years I have been on 4 pumps daily + only 7 days of 100mg Utrogestan each month. This has really worked wonders for me. We have both suffered terribly from the hormonal jitters etc, and I truly believe that it is caused by our intolerance of any progesterone.

On my regime I barely notice when I'm taking Utrogestan probably because the high dose of oestrogen nicely cushions me. My last scan showed my endometrium was nice and thin (I have mine done at Mothercare).

Frankly your consultant sounds useless. When I first saw Prof Studd he advised me to go 3 months with no Utrogestan, just to give me some relief. He said he wanted my oestrogen levels to be up around 800 pmol (they were only 297 pmol at my first appointment, and I was only 45) . He told me that he had plenty of ladies who needed pmol levels of over 1000 in order to feel okay. He basically implied that the actual dosage was largely irrelevant, and it was all about what dose actually worked.

He was also very laid back about how often I took Utrogestan, and certainly had no objection to me taking it long cycle etc. He wasn't even that keen for me to get regular scans, so long as I was having withdrawal bleeds when I did take Utrogestan.

I hope this helps and reassures you a little x
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Ladybt28

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Re: Improvement of Sorts but...
« Reply #8 on: October 28, 2018, 03:07:06 PM »

See the scans in Mothercare, how much do you have to pay for them please?
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Ladybt28

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Re: Improvement of Sorts but...
« Reply #9 on: October 28, 2018, 05:36:06 PM »

I thought I'd cracked it as it seems Mothercare Newry do it and then I was let down like lead balloon...seems they charge menopausal women £185 for an endometrial scan and a blood test?  Seems a bit excessive but then nothing is cheap or simple living here!!
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Lanzalover

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Re: Improvement of Sorts but...
« Reply #10 on: October 29, 2018, 07:26:53 AM »

Hi Kathleen

Pleased to hear you are getting some improvement.

I'm sure you know what I'm going to say . I'm with Hurdity on this you have tried everything suggested by the consultant but they don't work for you please do consider using cyclically for myself and many others on here it's a godsend and you can adjust the cycle to fit in with holidays and big events etc.
The gel is really easy to adjust I vary from 2,2.5 and 3 pumps per day and always use Provera for 14 days each cycle at first I could only do Provera for 10 days but have gradually managed to get it tup to 14 days per cycle without any problems.
I apologise for repeating myself but I'm convinced this regime will help you.

Good luck with what you decide.
Lanzaloverx


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Kathleen

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Re: Improvement of Sorts but...
« Reply #11 on: November 04, 2018, 02:15:23 PM »

Hello again ladies.

Many thanks for your comments.

Just to update you my Consultant has agreed to let me try a long cycle as she thinks I may be progesterone intolerant after all!

I'm so grateful for all the knowledge and support from you lovely ladies and I will of course keep everyone updated on my progress.

Wishing everyone well.

K.
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Ladybt28

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Re: Improvement of Sorts but...
« Reply #12 on: November 04, 2018, 02:23:21 PM »

Please don't stop posting Kathleen, we could really do with updates so we can find out how its working.  Glad to here things are going in the right direction.  I'm going to ask for a longer cycle but still have 1 month to go before my usual 3 months "see how its going" stint is up and I wont be able to get to the consultant until January...so I am particularly interested to see how you get along.  :great:
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Kathleen

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Re: Improvement of Sorts but...
« Reply #13 on: November 04, 2018, 04:20:04 PM »

Hello Ladybt28.

It may interest you to know that my consultant was against using a long cycle when I first  mentioned it but she has come around to the idea now. I told her that I have always had to include progesterone and I've never felt particularly good so I wanted to take a break to see if I was progesterone intolerant. I will be seeing her again in a few months time to check on progress.

 I have also been experiencing tender breasts and nause and  wondered if this was infact  due to excess oestrogen  so about a week ago I reduced my Oestrogel pumps from two and a half to two pumps  and those symptoms disappeared. It was great to get a positive result for once but of course it's also added to my confusion about how to achieve the right hormonal balance!

I will post on the forum about how my experiment works out.

Take care.

K.
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Kathleen

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Re: Improvement of Sorts but...
« Reply #14 on: November 04, 2018, 07:28:55 PM »

Hello Stellajane.

Yes I do keep a diary, I always have so I can easily track any changes. I will remain on 2 pumps until I need to take the Utrogestan again. My main symptom is anxiety/jittery feelings and I would be thrilled if that could be  permanently eliminated! 

Wishing you well.

K.
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