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Author Topic: Desperate and need advice  (Read 2947 times)

EllaM

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Desperate and need advice
« on: August 25, 2015, 11:54:42 AM »

Hi everyone, I hope you can help me get through this latest blip as i'm feeling so awful, desperate and like giving up.

I am now just a couple of months past 50 and have experienced horrendous peri symptoms for approx. 4 years now on and off.  After seeing a specialist earlier this year, looking at various options to try to help with the fluctuations, I settled on Estradot and Utrogestan.  Estradot 50 didn't seem to help so the dose was upped to 75 then 100 to try to level things out.  This seemed to be working and I thought I was getting my life back, my anxiety settled and at times I felt normal,  then it has all come crashing down.  the last 5-6 weeks have been awful and this last week I particular I have been off work, unable to function and barely able to get out of bed.  It's the usual symptoms: sweats, crippling nausea, tremors, anxiety, tinnitus, crying, sense of hopelessness, waking in the night etc.  It always seems to be worse at the beginning of the cycle getting particularly bad around the middle of the month.

When the blip started I felt as though it was down to ovulation as I had some ovary pain and had spotting one day which I often had mid cycle prior to starting HRT 2 years ago.

I have so many questions going through my head:
Is it the months that I ovulate that I feel worse as my own hormones are adding to the HRT?
Is Estradot 100 too much, too little or is it just my fluctuating hormones causing the problem?
Can anyone offer me advice to help get things stabilised?
When will things settle?

I suspect life will never be the same but just some sort of stability where I can work, plan things and enjoy my family isn't too much to expect is it?

Sorry to have a winge but I'm feeling really low and know that many of you have been and are going through the same thing so any advice would be appreciated.

Marie xx
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Pollie

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Re: Desperate and need advice
« Reply #1 on: August 25, 2015, 12:41:57 PM »

Hi Ella

I'm really sorry I don't have any answers as I am new to all this myself but I will be really interested to follow this thread as I am too trying to understand the way that our own hormones work with HRT - and how much is too much ?

Did you start HRT 2 years ago or just earlier this year ?

Pollie
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EllaM

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Re: Desperate and need advice
« Reply #2 on: August 25, 2015, 01:01:00 PM »

Hi Pollie, I started HRT approximately 2years ago but to be honest I haven't seen a big or sustained improvement. I just seem to be on a hormonal roller coaster. The 'dips' are always bad and over the 4 years I have had extended periods of sick leave as I feel so ill.

To be honest this bad spell is no different to the past so maybe it's not the high dose but rather the fluctuations or maybe even not enough estrogen. Others on the site seem very knowledgeable so hopefully they will be able to offer some advice.

Take care and hope we both find some answers xx
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TropicalVon69

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Re: Desperate and need advice
« Reply #3 on: August 25, 2015, 01:08:06 PM »

Hi Ella, sorry I cant help, but know how you're feeling.....have a huge hug xxx
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CLKD

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Re: Desperate and need advice
« Reply #4 on: August 25, 2015, 01:09:50 PM »

 :welcomemm: it really is The Change of Life.  HORMONES  >:(

Have a browse of the pull-down menus, top of screen and make notes.  When do you return 4 a review?
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EllaM

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Re: Desperate and need advice
« Reply #5 on: August 25, 2015, 02:01:53 PM »

Hi CLKD, I don't have a review with my specialist as she signed me off as there was nothing more she could do for me! Whilst she was lovely she kept trying to suggest that 'there was something else going on' even though I look at this site and I can see so many women experiencing exactly the same symptoms. I have also had every other medical test possible which revealed nothing. She had not heard of utrogestan being used vaginally which surprised me and kept saying that she didn't think I would still be ovulating even though I am just 50 and until I started HRT had never missed a period although they had changed in nature.

So, I am left with my GP, even though female and about my age, is not clued up at all. I have emailed Dr Currie and am even considering paying to see Nick Panay as I am so desperate xx
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CLKD

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Re: Desperate and need advice
« Reply #6 on: August 25, 2015, 02:12:29 PM »

What did the person you see 'specialise' in?  Is there a Menopause Clinic within travelling distance?

It can be Trial and Error until we find something which kind of suits …… which can be tiring.  So make sure that you rest!
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SadLynda

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Re: Desperate and need advice
« Reply #7 on: August 25, 2015, 02:42:08 PM »

Hi Ella
Cant help but also just wanted to send  :hug: from someone suffering crippling anxiety just now, and has appointment tomorrow which cant get here soon enough.

I suspect my treatment tomorrow will focus on the anxiety, maybe you need help with just this part too - also eat regularly to stop the sugars dipping and rest more (I might do the rest thing myself one day).

take care, and let us know how you get on.
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Backagain

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Re: Desperate and need advice
« Reply #8 on: August 25, 2015, 02:50:25 PM »

Hi
Your symptoms are definitely hormonal!

I had a hysterectomy and mine started straight away. I have been fine for 2 years but have suddenly crashed. This is because I have let my levels of oestrogen fall too low. I am upping my HRT but it does not seem to be helping much at the moment. I guess it will take time.

I was also told by a specialist that there was not much they could do having tried so many combinations of HRT.

I see Nick Panay and would recommend you do the same. He is so knowledgable and tells me that you just need to find a therapeutic range that suits you. Maybe patches don't work for you.

You will improve, I did with the right support.
I just wish I could have stayed stable.
Xx
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Briony

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Re: Desperate and need advice
« Reply #9 on: August 25, 2015, 09:31:06 PM »

Really interesting as I think I could be in a similar situation - HRT first, then upped to lose dose pill (2mg) and all seemed to be going well. Then recently all the old symptoms keep rearing their heads. I am convinced things are worse when I would have ovulated if I wasn't on the pill. I'm wondering if sometimes my own hormones are causing fluctuations, despite the pill. Have done a bit of reading this week and it seems that 2 x 100mcg patches will suppress ovulation and, despite being so high, could reduce the overall fluctuations. It is recommended for severe pms, for example. It's something I'm considering .... Though the thought of such a dose scares the hell out of me! X
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Briony

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Re: Desperate and need advice
« Reply #10 on: August 26, 2015, 11:30:18 AM »

PS This is where I saw it:


As premenstrual depression and other cyclical disorders of this syndrome are related to ovulation, it is logical that the mainstay of treatment should be the suppression of ovulation and the removal of the cyclical hormonal changes (whatever they are) which produce the cyclical symptoms of this condition. It is likely that the essential cause of premenstrual depression is the intolerance to endogenous progesterone following ovulation, and it is regrettable that such patients are also progestogen intolerant to any gestogens administered (20), and these progestogenic side effect are both dose and duration dependant (21). Any progestogen used for endometrial protection in these patients should be one that produces the least symptoms given in the lowest effective dose and the least number of days.

It is for this reason that the birth control pill, although suppressing ovulation and cycles, is not so effective because of the daily progestogen for twenty-one days a month. Even taking the birth control pill back-to-back without a break removes all fluctuations, but in some patients the progestogen component remains a problem and the PMS type symptoms become continuous rather than cyclical. The progestogen drosperinone is a less androgenic gestogen contained in the oral contraceptives Yasmin and Yas. These have been claimed to be effective for the treatment of PMS (22) and have been recommended by some to be suitable as first-line therapy (23).

An effective hormone therapy for severe PMS is the use of transdermal oestrogens for suppression of ovulation (24). This can be by gel (2.5-5.0g grams daily), patch (200 mcgs twice weekly) or --in those patients who have already responded well to transdermal oestrogens -- an oestradiol implant of 50 mgs every six-months, which gives long term therapy (25). They should be warned that they may feel less well in the first two weeks -- rather like the mood changes seen in early pregnancy -- and that it may not work for the first month until ovulation has been suppressed. Oral oestrogens may also be effective, but there are no published studies to support this.

The patients will need progestogen to prevent endometrial hyperplasia and irregular bleeding, but because of the progestogen intolerance found in these women, a smaller dose of shorter duration is recommended, usually in the form of 2.5 mgs of Norethisterone or 100 mgs of Utrogestan for the first seven days of each calendar month; this will produce a regular withdrawal bleed on about day ten of each calendar month. Re-setting the periods in this way prevents abnormal bleeding ; instead normal , usually scanty bleeding occurs at a predictable time of the month. Another minor advantage of this regimen is that periods now occur 12 times a year rather than 13.



 
http://www.studd.co.uk/depression.php[/b
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CLKD

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Re: Desperate and need advice
« Reply #11 on: August 26, 2015, 02:29:10 PM »

 :thankyou:
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EllaM

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Re: Desperate and need advice
« Reply #12 on: August 26, 2015, 06:45:13 PM »

I just want to say a huge thank you to all of you who have replied. Whilst it is so good to hear from you it breaks my heart to think of others suffering the same misery.

I saw a sexual and reproductive health specialist but it was at the sexual health clinic teaming with students regretting unprotected sex so it was not a nice experience. My poor husband was mortified. I don't think menopause was her speciality and there aren't any menopause clinics in this area so it's very difficult. I'm sure she thought it was all in my mind!

Given that I have some periods of relative stability followed by awful 'relapses' I do wonder whether it is linked to ovulation /non ovulation.

I have read Professor Stud's recommendation re 200mcg patches but agree it sounds like a huge dose.

Anxiety, nausea and flushing are awful at the moment, can't be bothered with anything and am just glued to the couch. Mornings are horrendous.

I have emailed Dr Currie for advice so am waiting to see what she says before I see my GP next week.

Hugs and best wishes to you all xxx
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CLKD

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Re: Desperate and need advice
« Reply #13 on: August 26, 2015, 06:47:17 PM »

Let us know how you get on!
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