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[Dragonladee]

Hi all, first time on here. 
I am 66 and have had a rubbish time over the past 25-30 years - who would be a woman???
I was brought up to think you went through "the change" and that was  about all I knew.  I had never heard of perimenopause, so after years of heavy prolonged periods (sometimes 14 days), around 2002 I noticed a large lump in my lower abdomen when laying on my back, scared, I went to the Dr and he examined me and his reaction was "my God, what are your periods like?".  Shocked at his reaction I told him they were heavy and prolonged and he said I had large fibroids.  I had them checked at hospital and was told I could have a hysterectomy, or wait it out as I should be getting near to menopause and they would likely shrink or disappear.  I opted for waiting it out.
So fast forward a few years and November 2013 I had my last period, and the syptoms started, slowly at first, a bit of weight gain around the middle, hair loss for which I was prescribed iron and it worked a treat, itchy skin, heart flutters / missed heartbeats (this was scary, but had it checked a few times and they couldn't find anything wrong) - although this was never linked to menopause by the Drs.  The problems kept coming, more weight gain, swollen ankles which never went down, joint pains, spots, dry vagina and zero libido, then the hot flushes and the sweats started and they have been the bain of my life. 
I recall once going to see an older female Dr and I had read that it was best to take a list with you if you had multiple issues, so I did and I was told rather sharply, like a naughty schoolgirl, "put your list away and just tell me!".  Never had much sympathy from Doctors, although I think things are changing now.  I asked her for HRT and she said she didn't want to go down that route, (I did, but obviously I didn't matter) so I persevered and tried to do it on my own.
My biggest problems over the past 3 years or so have been the flushing which happened many times a day and when around people it was embarrasing and uncomfortable, and the sweating - my body not so much, but my head - wow, that drips, my hair gets saturated and it drips down my neck, my face and into my eyes and I got tired of it, every summer was unbearable until it started creeping into the colder months.  So last September I went to see a private Menopause specialist who prescribed me estradot patches and utrogestan.  I felt like I had been given the magic treatment, but 1 year on, it is no different, the head sweating has been unbearable this year, so thinking about coming off the HRT as it doesn't seem to have any effect on my symptoms. 
I have just been discussing with a (more understanding) Dr, and she thinks that clonidine may help to control body temperature, so just waiting to get that prescription.
I am beginning to think this will never end, as I have friends who have had a few months of discomfort / symptoms and then they are all clear, I am at nearly 12 years and each year feels worse.  Sorry for the long story, but is anyone the same or similar?
Thank you for any replies

[CLKD]

   will copy, paste and respond.  Bare with me ;-)

[CLKD]

Hi all, first time on here.

I am 66 and have had a rubbish time over the past 25-30 years - who would be a woman??? - that's a long while 2 B suffering!



I was brought up to think you went through "the change" and that was  about all I knew.  The Change - does what it says on the tin, loss of periods and a few hot flushes.  However!


I had never heard of perimenopause [same for most of us], so after years of heavy prolonged periods (sometimes 14 days), around 2002 I noticed a large lump in my lower abdomen when laying on my back, scared, I went to the Dr and he examined me and his reaction was "my God, what are your periods like?". 
. That was a good bedside manner.  Not!


Shocked at his reaction I told him they were heavy and prolonged and he said I had large fibroids.  I had them checked at hospital and was told I could have a hysterectomy, or wait it out as I should be getting near to menopause and they would likely shrink or disappear.  I opted for waiting it out.
. Well done because hysterectomy is a big operation and will cause menopause anyway for many women.


So fast forward a few years and November 2013 I had my last period, and the syptoms started, slowly at first, a bit of weight gain around the middle, hair loss for which I was prescribed iron and it worked a treat, itchy skin, heart flutters / missed heartbeats (this was scary, but had it checked a few times and they couldn't find anything wrong) - although this was never linked to menopause by the Drs. 

The problems kept coming, more weight gain, swollen ankles which never went down, joint pains, spots, dry vagina and zero libido, then the hot flushes and the sweats started and they have been the bain of my life.
.  As oestrogen levels drop the body may become dry: inside and out. Medics simply don't join up the dots!   




I recall once going to see an older female Dr and I had read that it was best to take a list with you if you had multiple issues, so I did and I was told rather sharply, like a naughty schoolgirl, "put your list away and just tell me!". 
. Nasty GP!      not the best bedside manner there then!



Never had much sympathy from Doctors, although I think things are changing now.  I asked her for HRT and she said she didn't want to go down that route, (I did, but obviously I didn't matter) so I persevered and tried to do it on my own.
too many GPs think that because menopause is 'natural' we should struggle.  Her time will come ;-). She should of course referred U to a dedicated Clinic.




So last September I went to see a private Menopause specialist who prescribed me estradot patches and utrogestan.  I felt like I had been given the magic treatment, but 1 year on, it is no different, the head sweating has been unbearable this year, so thinking about coming off the HRT as it doesn't seem to have any effect on my symptoms.   It may simply [though nowt is simple until we find a regime that suits] that your HRT requires an adjustment.  Which symptom did U want to ease first?

I have just been discussing with a (more understanding) Dr, and she thinks that clonidine may help to control body temperature, so just waiting to get that prescription.

I am beginning to think this will never end, as I have friends who have had a few months of discomfort / symptoms and then they are all clear, I am at nearly 12 years and each year feels worse. 


Some women 'sail through' apparently.  We don't get many on this Forum .  browse round, make notes ;-)

[Dragonladee]

Thanks CLKD, your comments made me smile - and it sounds like you have heard all this SOOOOOOOO many times.  If I could stop just one thing, it would be the head sweating as it stops me from doing so many things.  I don't like to socialise when it is warm outside, I never go on holiday, or do my gardening in the summer, just moving from one room to another can start it off, so yes maybe this is the worst symptom.
I've never been bothered with mood swings or anxiety, which is a plus I suppose!

[Dragonladee]

Oh and just to add, the Dr didn't want to increase the dosage due to my age.

[Mary G]

Dragonladee, I'm sorry to hear you have been putting up with these dreadful symptoms for years with no help.  I think it's got to the stage where the NHS can only give out bog standard HRT if you are lucky. 

What dose of oestrogen were you using?  I had a dreadful sweating problem and I can tell you that a fairly high dose of oestrogen is needed to combat that.  A 25/50mcg oestrogen patch is unlikely to cut it and I found it to be completely ineffectual.  The only thing that cut through for me eventually was three pumps of Oestrogel every day.

If you were using 25/50mcg Estradot and 100mg Utrogestan every day continuously, chances are, the Utrogestan cancelled out the positive effects of the patches too. 

I think stopping HRT is the last thing you should be doing.  Your oestrogen has probably completely bottomed out and that's why your symptoms are worse.  I think clonidine is a bad idea because it's not going to treat the cause of your symptoms which is oestrogen deficiency.

A word of caution on your friends who apparently sailed through the menopause.  They cannot possibly know if they sailed through the menopause because they only got through the first phase ie hot flushes and night sweats.  Once post menopause, the effects of very low oestrogen levels accelerates the ageing process and loss of bone density can be very rapid.  Then there are other issues like cognitive health, cardiovascular health, problems with insomnia plus much more.  Oestrogen is like a control centre and without it, things start to go wrong unless you are very lucky.  A lot of women have health issues in later years and don't even know they are caused by lack of oestrogen and the knock on effects.

I would increase the dose of oestrogen immediately and see if that helps the sweating. If the doctor refuses to help you I suggest you find a different doctor or try the Newson clinic.

[Dragonladee]

Hi Mary G, thank you for your comments they are very helpful and have certainly made me think!
I started on estradot but this became unavailable countrywide I understand, so have been given a couple of different patches since, currently on Evorel 25 1.6 mg patch twice a week and Utrogestan 100 mg capsules daily.  I originally got the HRT treatment from a private clinic and from then on got the repeat prescription from my GP.  Both the private practice and my GP have said they wouldn't want to increase the dosage due to my age - I didn't start taking it until I was 65 and have just been on it for a year.
It is just the feeling that it is never going to end, I have heard of women in their 80's still suffering symptoms and I feel like that may be me.

[CLKD]

Age should not come into it! Would they tell a diabetic or a man ............ 

Age is a number.  Unless U have a potentially dangerous medical history and that any potential risks have been explained, it should be up 2 U whether you continue.  I agree that U contact the Newson Clinic for further advice.

Also do tell your GP that Quality of Life is important for us all and that many women end their Lives due to intolerable unsupported symptoms. Does he/she really want that on your records, sometimes we have to lay it on thick! 

Let us know how you get on.

Tnx Mary G!

[Mary G]

Dragonladee, I would either find another doctor or just increase the dose myself and try to get hold of oestrogen privately.  Perhaps try Oestrogel?

From my experience, a 25mcg patch which often doesn't stick properly Is completely useless and you would be lucky to get any relief from that at all.  I would guess your oestrogen blood levels are very low.

I don't know what age has to do with anything.  You were only just over the 10 year window for starting HRT post menopause and it should be up to you to weigh up any risks which are very small anyway.  I'm 64 and I've been using HRT for nearly 20 years now and I'm on it for life.  I use two pumps of Oestrogel every day with separate progesterone and testosterone every day and it's going very well with no menopause symptoms or side effects. 

As you say, some women have menopause symptoms for life.  The more I read on here about clueless doctors and lousy menopause treatment, the more I think the whole menopause thing needs to be blown wide open because the current approach is completely wrong and it's harming women.  Doctors like Professor Studd and Louise Newson have done some brilliant work in recent years and raised awareness but more needs to be done.  The menopause needs to be recognised as a design fault in the female make up and treated more like a thyroid condition.  It's unbelievable the way women are left to fester for years on end with debilitating menopause symptoms that could easily be treated with the right type of HRT at the right dose.  Some doctors bang on about the risks of using HRT but completely ignore the risks of not taking HRT.

I really don't think you should give up on HRT. Get some help and perhaps look into other types of HRT like Tibolone which is oral and well tolerated. 

I hope that helps.

[CLKD]

However Mary G - the NHS will do a certain group of thyroid function blood tests and even when a patient returns many times with symptoms, these men/women have to go privately for 'extra' blood testing  [sorry can't remember which].  ?? medical negligence ??

[Mary G]

CLKD, my sister is hypothyroid and she doesn't even know if she is positive for the antibodies.  She knows virtually nothing about the details of her thyroid condition and just has telephone appointments with a useless GP who either loses her results or accidentally changes her dose.  She is currently taking 100mg of Levothyroxine.

She also had osteopenia and is not getting any meaningful help with that either unless you count a clueless consultant who told her that HRT doesn't help osteopenia.

[bombsh3ll]

I would see someone else, as you are probably on a very low dose of estradiol, and a "specialist" who is dosing by age rather than clinical need, and also hasn't discussed testosterone with you, is not providing the best care, particularly as you are paying for it.

I would also give you a word of caution about clonidine - this is a very old fashioned blood pressure lowering medication that is no longer recommended for menopause symptoms due to safety concerns ie fainting and breaking a hip.

There is no universe in which clonidine is safer than estrogen.

[Dragonladee]

Yes, I had my thyroid checked and the other basic tests that the NHS do, but won't look at hormone tests - you do have to have those done privately at great expense.
Also I did ask about Tibolone as I had read good things about it, but my GP (female GP) didn't want to initially try this and has asked me to try clonidine first.  It just seems to drag on, because as mentioned earlier telephone consultations take about 3 weeks and don't even get me started on how long it takes to get a face to face consult.
I may end up going down the private road again.
I'll keep you updated.

Thank you bombsh3ll for your post, I just read it as I was about to post the above.   I am not seeing the specialist now, I did for the first prescription and she was the one that prescribed what I am on now, but then went through my GP to continue the script.  I didn't realise that Clonidine was no longer prescribed for Meno symptoms, I did think it a bit strange when it was suggested, but you get to the stage of being willing to try anything.

I am certainly being given food for thought and a fire in my belly with the comments I am getting.
Thank you all x

[CLKD]

   Mary G and bombsh3II

[bombsh3ll]

I would just make clear to your GP that you neither need nor want to take a potent blood pressure lowering medication with the very real risks of harm for absolutely negligible benefits on vasomotor symptoms, that is no longer recommended for this indication.

Emphasize that tibolone will help not only your vasomotor symptoms but bone health and libido.

If you can't get tibolone from your GP, I would ask for a referral to the NHS menopause clinic or seek private care for this.

It is not appropriate for a GP to insist that someone first try a treatment that is potentially unsafe and only marginally effective for one single symptom of hypoestrogenism before accessing their preferred treatment.

Whilst we cannot always access the appropriate treatment through the NHS either immediately or at all, we always have the autonomy to decline treatment that is unsafe or inappropriate.