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Author Topic: New recruit with a long story - help!  (Read 877 times)

Sympatico

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New recruit with a long story - help!
« on: February 12, 2018, 06:09:05 PM »

Hello everybody, I have been coming to this site for some time now and it has been an education.  Above all, reading other womenís experiences has been a great comfort to me through the tougher phases of my own hormonal purgatory.  I am so grateful for that.

Iím 50 and about 5 years post meno.  Around 5 or 6 years ago I was thriving in a challenging role and I started being bullied at work.  I began getting anxiety and panic attacks and my GP signed me off work.  During this time my periods stopped and my GP put it down to stress.  I resigned from my post.  My periods did not return.

I had a couple of jobs thereafter and really struggled with my symptoms.  I had lots of symptoms but the worst for me were the anxiety, panic, dizziness and palpitations (and total loss of libido - I was in a fairly new relationship at this time).  I seemed to be so sensitive to any pressure and found I couldnít cope with things that had previously been a breeze. 

I got myself a part time, less demanding, role as I couldnít manage a full time job at this point.  I think the only reason I was able to stick it out was because I worked on my own and I was therefore just about able to cope with my symptoms.  My GP prescribed beta blockers to help with the panic and palpitations.  He was supportive but still did not think I was menopausal.

Then my partnerís job relocated and we moved house.  I really struggled with the move and found it hard to cope.  Additionally the new house needed some urgent works and that was a nightmare too as I was now working from home.  My anxiety and moods got worse and worse.  One time I went to A&E as I really thought I was seriously ill/about to snuff it.  On this occasion I experienced what seemed to be a sudden blood sugar crash swiftly followed by a panic attack - it was hideous and terrifying. 

I registered with a GP and went to discuss my issues.  By this time it seemed likely I was post-menopausal although this had not yet been confirmed.  My GP recommended anti-depressants and gave me some information on HRT.  At the time I didnít want to take either, especially not ADs, but felt I had to be opened minded as my symptoms were having such a massive impact on my life and relationship and I felt dreadful.  I started to do research, via the internet and books, and thatís when I came across this here fabulous website: Menopause Matters.

Armed with lots of information, and feeling more optimistic, I asked my GP for a referral to a particular NHS menopause clinic.  I explained my interest in taking bio-identical/body identical hormones.  My GP went absolutely nuts at my request and flatly refused.  He behaved in an insensitive and arrogant manner and it left me very upset and somewhat crushed.  He even implied I may not be post-menopausal!  I complained to the surgery about his behaviour and asked for an explanation as to why my referral had been refused.  I received an apology and my referral was agreed subject to the results of a blood test.  But, my goodness, thereafter my GP was unhelpful to the point of obstructive.  I requested a change of GP within the surgery several times and eventually this was granted.  But in the meantimeÖ

I had an appointment at the NHS menopause clinic (at the end of June 2017) and I commenced HRT with 1mg Sandrena estradiol transdermal gel, 100mg Utrogestan orally and continuously and a small blob of Testim gel daily.  Initially I felt improved and some of my symptoms disappeared.  What joy!  But after a few months the anxiety came creeping back.  I was advised by the menopause clinic to increase Sandrena gel from 1mg to 2mg.  I increased to 1.5mg at this time as my GP refused to prescribe above this amount (above 1.5mg is an unlicensed dosage for this particular product).  My GP just seemed to be as unhelpful as possible e.g. I couldnít get an appointment, prescriptions didnít materialise, that sort of thing.

My anxiety worsened and I suspected progesterone intolerance (as well as GP rage).  The menopause clinic advised I start using Utrogestan vaginally, instead of orally, as it was explained to me that this method of delivery can have fewer side effects in women who find they are intolerant of it.

It was around this time I was advised that I had been allocated a new GP.  I would like to say that my new GP has been professional, supportive and diligent.  What a difference this has made!  At this point I was also just in the process of switching from Sandrena gel to Oestrogel (to avoid licensing issues with previous GP) but for some reason I felt really unwell on Oestrogel and after only a week on Oestrogel I switched back to Sandrena gel 1.5mg on the advice of my new GP. 

Following this I started spotting and had a light bleed, the spotting and bleeding lasted around 2 weeks.  I reported this to the menopause clinic who were not overly concerned (and thought it might be down to change of product) but said I should get a scan if breakthrough bleeding occurred again.  I also reported it to my new GP who immediately arranged a scan.  The scan showed endometrial thickness of 11mm and possible fibroids.  I was put on the cancer pathway for a hysteroscopy and D&C.  This all happened so fast and was a bit scary.  I was quite shocked that this thickening could have occurred as a result of the hormones I had been taking for only around 5 or 6 months.

In the meantime my anxiety was horrendous so I then started taking 100mg Utrogestan cyclically, 14 days on and 14 days off (thus inducing a bleed), in the hope that my anxiety (and a few other possible progesterone-related symptoms) would improve by reducing the length of time I was taking progesterone.  This was on the further advice of the NHS menopause clinic.

The hysteroscopy was initially attempted with no anaesthetic but I had to abandon this as it was too painful to continue.  (This is not the case for many other women.)  A couple of weeks later I underwent the procedure with general anaesthetic.  A D&C and polypectomy were carried out and tissue samples sent to pathology.  After a 3 week wait (!) I got the results of the biopsy on Friday (9 February) and I was told all is OK.  I am just awaiting the letter from the gynaecology consultant with explanation of results and recommendations on how I should proceed with my HRT.  What I gathered is that my uterus needs more protection.

In the meantime I had an appointment lined up, out of desperation, to visit a private consultant because I still felt awful and was still struggling with symptoms.  The private consultant prescribed 3 pumps Oestrogel, 100mg Utrogestan 10 days per month and a tube of Testim, or sachet of Testogel, to last 4 days. 

In view of my recent endometrial thickening I feel tentative about increasing the amount of oestrogen and reduce the amount of progesterone.  The private consultant was aware of my recent issues and hysteroscopy procedure but seemed unconcerned about this in relation to this proposed new regime.

Since seeing the private consultant (last week) I have increased Sandrena gel from 1.5mg to 2mg with the other components remaining unchanged until further advice has been received (as I said I am awaiting letter from gynaecology consultant following the biopsy results on Friday).

So right now I am not even certain if it is a good idea to continue with HRT?  Having said that I do not relish the thought of going back to the way I felt pre HRT!

It seems that I donít yet have the right balance of hormones and dosage, I say this based on the way I feel and ongoing symptoms.  However I am aware I might be one of the women who need to take an AD too.  My visit to a private consultant was really a last attempt to see if I can feel better on hormones or if I do in fact need to take ADs for anxiety.  Having said that, my anxiety has reduced a bit since taking Utrogestan cyclically.  I also realise it may take a while to feel the benefits of increased oestrogen.  I wish it would hurry up as I feel completely pants!

What are peopleís thoughts on this?  Any information would be gratefully received.  Thanks for taking the time to read my story, I hope itís clear and well done if you got to the end and didnít nod off!  (I so tried to keep it as brief as possible).

Sympatico x
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CLKD

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Re: New recruit with a long story - help!
« Reply #1 on: February 12, 2018, 07:06:59 PM »

 :welcomemm:

I'm sure someone will be along with advice.  Maybe put the product into the search box on here.  That will show you the threads and responses.

As for the other GP  :bang:, I do wonder why they go into a 'caring' profession - some do not like to B told!
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Annie0710

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Re: New recruit with a long story - help!
« Reply #2 on: February 12, 2018, 07:07:55 PM »

I canít help, sorry.  But wanted to welcome you and reassure you that there is a big chance you can feel better on hrt .  Itís all about tweaking and finding the right combo.  Menopause gave me social anxiety, I went from loving every weekend down the pub to too scared to go in a shop! Testosterone (Iím sure itís that thatís done it) has given me back something that meno snatched off me.  Iím not 100% but we have a social life again, not down the pub every weekend but usually at least once a month and I actually look forward to it !

I hope you find a better balance on products and dose xxxx
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Age 51
Hysterectomy 1999 age 32 and given 2mg oestrogen due to ovarian failure
Onset of new symptoms  2012 age 45
Diagnosed post meno 2015 age 48
2mg elleste solo til 2015
Started Estradot 75mcg 2015
Sept 2016 scan showed dissolved ovaries
May 2017 oestrogel & Tostran

Mary G

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Re: New recruit with a long story - help!
« Reply #3 on: February 12, 2018, 07:15:17 PM »

Sympatico, sorry to hear about the difficult time you have had, that GP is a poor advertisement for the NHS and no wonder you feel pants, in actual fact your former GP is pants.  If he doesn't like his job, perhaps he should consider seeking employment elsewhere.

First of all, definitely do not allow this negative experience to put you off using HRT.  There are ways of dealing with the problems you outlined but one important question, when in your cycle did you have the scan?  11mm would not be considered high if you were about to bleed. 

Looking ahead, depending on how progesterone intolerant you are, you could have a progesterone coil fitted and I would definitely suggest asking for a Jaydess rather than a Mirena if you don't do well on progesterone because it has a lower dose.  Altbough most of it is confined to the womb some of it gets into your overall system causing side effects.  You are then free to use as much oestrogen as you like without having to worry and the worst that can happy is an occasional bleed. 

Alternatively, you could stick with your current regime if you can have regular scans.  How are you doing on 10 days of vaginal Utrogestan?

If the private consultant was not worried about your history then I wouldn't be either.  It's all standard procedure. 
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Lanzalover

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Re: New recruit with a long story - help!
« Reply #4 on: February 12, 2018, 07:22:14 PM »

Hi Sympatico


 :welcomemm:


Lanzalover
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CLKD

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Re: New recruit with a long story - help!
« Reply #5 on: February 12, 2018, 08:21:29 PM »

As an aside regarding NICE - with regards high cholesterol levels the first line of action should be increased exercise and a diet check - not statins!! but the GP I saw insisted ............ so statins it became.
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Hurdity

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Re: New recruit with a long story - help!
« Reply #6 on: February 12, 2018, 08:26:35 PM »

Hi Sympatico

 :welcomemm:   from me too.

I can't believe your doc is so ignorant about menopause that he gave you beta-blockers when your periods were presumably going awry and becoming irregular and you were experiencing menopausal symptoms! Too many women are being prescribed all sorts of meds like beta-blockers, anti-depressants, blood pressure medication, nerve pain meds - anything but HRT - when HRT is the first line of treatment for menopause recommended by NICE!!! Only after you have tried this and got the right medication at the right dose and given it a few months to settle, should other meds be conisdered - if the HRT hasn't dealt with the symptoms overall, and if you are otherwise healthy!

When you say you still feel awful - what symptoms are bothering you still and are they present all the time or now only at certain points in your cycle? The other things is I would say that is quite a high dose of testim! Most women are prescribed a pea-sized blob, although those without ovaries may well need quite a bit more.

I will just give my treatment as an example of what has worked. I started HRT when I was late  peri-menopause ( just under 54) having not had a period for 5 momnths previously. Apart from a trial of 3 months (7 years ago) I have been on it ever since and I am in my mid 60's. What works for me is a 50 mcg ( well 62.5 now!) Estradot patch, a pea-sized blob of T daily, and Utrogestan 200 mg x 12 vaginally approx every 6-8 weeks. The oestrogen dose may not be high enough for you but is fine for me. I haven't gone higher because once I started going on a longer cycle - I didn't want to risk my womb lining thickening so kept to medium dose, and nor did I want to reduce cycle length because it meant taking the prog more often. I also have plenty of Vagifem and use more leading up to the vag prog part of the cycle. You can also have 75 mcg or 100 mcg patches. However if that dose of oestrogen works for you then that's great.

You really should be able to find a dose that works for you - but lifestyle also come into it ie diet, exercise, alcohol, smoking, stress etc, as I'm sure you know.

Re the endometrial thickening - if you are post-menopausal ie had been 12 months without a natural period before starting HRT, and had been on continuous combined HRT ( ie had the spotting and the scan before you started cyclical Utrogestan) then yes that is over-thick and good to be investigated (glad all was well!). This does demonstrate as you say that the progesterone ( 100 mg daily) was insufficient to protect the womb from the amount of oestrogen gel you were taking. The problem is that Utrogestan is licensed as a one-size fits all dose - 200 mg for 12 days if taken cyclically or 100 mg daily for 25 days out of 28 ( or 28/28), but sometimes this is too much ( for lower doses of oestrogen) or too little (for higher doses of oestrogen) because the amount of prog needed to protect the womb is dependent on the oestrogen dose. Also when taken orally less gets into the system and the dose can fluctuate more as it is subject to the vagaries of your digestive system and has to go through the liver.

I definitely think you are better off taking Utrogestan cyclically and giving yourself a decent dose to protect your awomb Ė but you might have to grit your teeth and bear with it if you can! Or - as Mary G says a Mirena coil might do the trick instead....

Hope this helps and hang in there! :)

Hurdity x
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CLKD

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Re: New recruit with a long story - help!
« Reply #7 on: February 12, 2018, 08:27:58 PM »

Odd that - I replied to the thread from Hurdity .......... so what happened there  :-\
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Sympatico

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Re: New recruit with a long story - help!
« Reply #8 on: February 12, 2018, 10:48:20 PM »

Hi ladies, thanks for all your replies and welcomes.  Sorry for my ridiculously long post.

Hi Mary G Ė that GP has now left the practice.  I think he had some issues. 

I was post-menopausal and on continuous progesterone - I had the scan done because of breakthrough bleeding, which revealed the thickening.  I was shocked because I was on continuous progesterone (100mg) at the time and 1.5mg Sandrena gel Ė which I donít think is a particularly high dosage of oestrogen. 

Iím still doing 2 weeks on and 2 weeks off 100mg progesterone vaginally.  Not going to change that at present as still awaiting letter from gynaecology consultant following biopsy results.  So changes need to be discussed.

Hi Hurdity Ė yes that first GP did not think I was going through menopause.  I tried to discuss it with him but I reckon he thought I wasnít old enough at the time.  Also I was caught up with the issues I was having at work so I didnít really give it too much thought. 

My symptoms seem to change and vary in intensity and Iím finding it difficult to see patterns.  I am volatile all the time.  At present I get anxiety, muscular tension, dizziness, headaches and irritability when I am taking progesterone.  When I stop I feel low and weepy.  When I bleed I feel generally rough and unwell.  When I stop bleeding I feel much better.  Then the cycle starts over again! 

Looks like some further experimentation is required for progesterone dosage or the Mirena coil or Jaydess as Mary G also mentioned.  I will discuss these options with consultant and GP.

Thank you.

Sympatico x
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CLKD

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Re: New recruit with a long story - help!
« Reply #9 on: February 13, 2018, 11:41:17 AM »

Many ladies find that progesterone gives huge problems.  Some have to not use it on a regular basis but as a means of cleansing the womb, i.e. using it every 4/5 months rather than every month.

Is the anxiety cyclical?  I have beta-blockas to ease early morning surges as well as an emergency drug for when anxiety floors me.  Are you actually dizzy or is it a sudden whoosh 'whoops' feeling?  I have a nerve in the back of my neck which causes strange sensations when I move my head, catches me unawares  >:(  ::) but nothing I could go to the surgery with.

Generalised tension can be eased by yoga, physiotherapy .....
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Sympatico

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Re: New recruit with a long story - help!
« Reply #10 on: February 13, 2018, 01:12:34 PM »

Hi CLKD, thanks for your responses.  The progesterone seems to be an issue for me and what you suggest might well be the way forward. 

I have beta blockers (10mg) but haven't needed to take them much recently.  I have diazepam in case of a severe panic attack (to keep me out of A&E!), not had to take one for ages but good to have them in reserve.

I was getting horrible surges when on continuous progesterone.  Going cyclical seems to have reduced that considerably. 

Occasionally  I get head spins but generally its more of a spaced out, strange light headed feeling.  Sometimes it comes with a feeling of imbalance or even a sensation of weakness on one side of my face, head or neck.  This can also include my arm and leg.  Its happened so many times I no longer freak out about it, but I used to freak out thinking I was having a stroke.  I think that is quite a typical reaction, fear feeding fear etc. 

I have tried acupuncture and I've been to a chiropractor (McTimoney method).  The former made me feel worse but the chiropractic helps.  I was going to Tai Chi and Pilates classes but stopped as I had a panic attack one day.  I want to get back to it.  I love Pilates.

Just started reading DARE.  Its not a new approach but I am finding that this book is making sense to me.  Also starting CBT this week.  I think its worth giving it a try.

Recently found I am low in vitamin D, not sure if that can affect mood/anxiety?  Think I need to move to the South of France!  :)

Sympatico x
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CLKD

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Re: New recruit with a long story - help!
« Reply #11 on: February 13, 2018, 02:02:50 PM »

We have a charabanc - so when you want a driver  ;)

I recently found out that I am low in VitD, capsules helped.

Glad that your anxiety is under-control, kind of.  At least you know that the back-up works.  Sometimes when I put my foot forwards it doesn't end on the ground where I planned to put it, looks like I'm drunk  ::)
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Sympatico

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Re: New recruit with a long story - help!
« Reply #12 on: February 13, 2018, 02:58:45 PM »

Lets go!

I seem to have anxiety to some degree all of the time which really affects quality of life.  I wish it would naff off!!

I get this thing sometimes when I put my foot forwards to walk it feels like the ground beneath has moved or sunk.  Then I think I'm going to lose my balance and fall over.  All without a drink too. ;D
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sparkle

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Re: New recruit with a long story - help!
« Reply #13 on: February 13, 2018, 11:14:18 PM »

Sympatico, low vit d can cause low mood as well as joint and muscle pains.  Were you prescribed it to get your levels up.  Moving to the South of France sounds like a lovely idea! 😁
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CLKD

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Re: New recruit with a long story - help!
« Reply #14 on: February 14, 2018, 11:14:51 AM »

That is exactly how it feels, such a good description Sympatico .......... try explaining that to a GP  :-\  :D

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