Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Sooby on April 16, 2016, 03:14:44 PM
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I have a real bee in my bonnet about the lack of awareness of Peri menopause amongst women and would really like to do something about it. So many women struggle on with a wide range of debilitating symptoms without realising that they are linked to fluctuating levels of hormone and in many cases when they do eventually discover the root of their mental, physical or emotional health issues they often struggle to get the support that they need due to a lack of awareness amongst the medical profession.
So I have an idea to create a promotional campaign to inform and educate as many women as possible with the aim of creating a snowball effect and that will hopefully lead to an increased awareness amongst health practitioners too. After all, many health professionals are women and those who are not must have mothers, sisters, wives, female colleagues?
Trying to educate health professionals could be a long and difficult task for an outsider and us peri girls just dont have the time and the energy but if we each make it our personal challenge to make more women aware then that awareness will become accepted wisdom amongst all of us regardless of our gender or profession.
My starting point is to compile a list of possible symptoms of peri meno, particularly the less obvious ones so if you feel that you can help with this please let me know.
I also need some really useful links to information and support so if you have any to suggest please do.
If any of you have any examples of how the extremes of these symptoms can have a devastating affects on relationships, marriages, parents, work etc that would be helpful too. Feel free to pm me your experience if you are happy for me to use a summary of it as an example.
I may at some point need some professional medical input or clarification but until then I will get on with the basic research and draft something that you can all share through email or facebook networks.
Lastly, I'm not precious about this so if any of you have any other suggestions to promote this awareness please feel free to share them.
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It's strange how we don't seem to even consider that it is a slow transition - puberty in reverse so to speak - and don't go looking for info. I got most of mine from a book called Could it be Perimenopause listed under the Books in the green menu. There are sites on the internet listing the symptoms of peri so you could start there compiling your own list? The Sage site is good and not one that women in their forties would probably bother to look at so lots of their info is lost to the very women who need it I would think! http://www.saga.co.uk/magazine/health-wellbeing/conditions/menopause/perimenopause-symptoms-and-treatments
Taz x
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Sounds a good idea Sooby - I do think that women are not educated about this time in our lives and the consequences can have devastating effects. I am often chatting with women about the meno and HRT and it staggers me how ignorant they are on this - it's something we all go through without any preparation.
I'm surprised that magazines like Good House Keeping don't do a good article based on the new NICE guidelines - the articles I read all tend to push 'the Natural way', making those of us who need HRT feel a failure - we shouldn't feel we need to justify why we use HRT as it is often the best option - a good diet and exercise regime won't be enough for around 40% of women.
Good luck. Dg x
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I do think it needs to be brought into more 'mainstream' magazines, websites and TV programmes.
The fact that there is good info available in specialist magazines, MM for example I'm of the opinion isn't going to help some people very much I feel.
The reason (I'm going to be honest here! :-\) is that many women, myself included, did not/ do not see themselves of an age where the dreaded menopause might rear it's head. It's taboo, it's not something I (normally) discuss with family or friends, and I for one came to this website at the end of a long struggle to get info from anyone.
I for one tried to broach the subject with a similar aged relative who immediately didn't want to talk about it, was full of "oh well I don't have any of those symptoms!" in a way which made me feel ashamed and old and...well, odd :-\
Similarly, at the start of my journey, I tried to chat about it with a friend, who reacted the same, like I had some dreaded disease or I was to be pitied as past 'life' :-\
Another friend a few years older than me seemed to get really bitchy and be horrible to me and lots of other people, lost a lot of friends and became very unpopular. No-one could understand it. About 9 month after that the poor woman stopped me in the street and apologised, in tears about her behaviour and explained she had been going through this! I'm afraid I had no idea at all what she was going through at the time - I can totally relate to her now! The poor woman! :-\
It needs to be brought more out into the open it really does!! :)
Ok, I'm perimenopausal - but I'm still me! I still have a sense of humour, I'm still attractive, I'm still funny, I still like chocolate and nice clothes and holidays, I'm still part of general and female society! , I'm still just as much alive as I was before! ;D
I agree, there's not much info around for us!
Look how much info there is available about other life stages! It's mad! :)
I didn't talk to my husband about this either, I'm afraid I hid my symptoms for a long time, I suppose I was a bit worried he might see me as 'old' and undesirable.
Even now even though he knows, of course, I don't like my husband seeing me looking at this site on my laptop (I'm going to be honest again, I don't think the title of this website or forum helps! :) It's not that I wish it was called "Puppies and unicorns and fluffy pink candyfloss" or anything but the very word MENOPAUSE seems to ring bells of getting old. And yes I know we ARE technically getting old, but at a time in our lives when we are feeling vulnerable due to fluctuating hormones and feeling unsure of ourselves a lot of the time, I think it all needs to be made less 'unfortunate'.
Anyway, just my two-penneth!
And thank the heavens for this wonderful site!! :) :)
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Most of the 'articles': printed or on TV: that I see relating to Menopause symptoms are wishy washy. That's why MM Magazine is important. I subscribed for a few years and my copies went into the local Surgery for the Staff to read.
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Great idea. I certainly think more needs to be done about educating ourselves and our HCPs that the change is a transition not a one off event. My male GP told me it couldn't be the menopause as I was still having periods, which is technically correct but misses the whole point of why women drag themselves to the doctors sometimes years before that day arrives. It would have been so useful if I'd been given a pamphlet or sheet with some of the main symptoms on and links to this and other useful websites as I had no real idea other than hot flushes. I still think that surgeries should offer a clinic for menopausal women much as they run cardiac clinics and diabetes ones where you could see someone who had at least a vague interest in women's health. Also it would have helped me if there'd been a local group that I could attend so that I didn't feel so alone with this as all my local friends are either much younger or much older so the change is just a memory or something that is never going to happen! These things cost money but not as much as the endless unnecessary tests and doctor's visits and antidepressants that they dole out rather than trying to address the real underlying hormonal transitions.
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I have learned SO much here! I have two collegaues who are of similar age to my own. One is 47, so exactly my age, and the other woman is just over 50. The slightly older woman has had breathing problems for a while now. Has had x-rays, blood tests, etc but they can't figure out what's wrong with her. I GENTLY suggested that maybe it had to do with hormones? Her answer: "No! I"m not THAT old!" Oki doki.....
The other woman (my age) talks about possible menopause quite a lot, but I don't quite get the sense that she has information beyond hot flashes and flooding.... :(
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Oh Clovie I'm loving your post and yet it made me want to cry.
wise words well said and loads of thought provoking ideas. I'm right with you on so many levels. I think this could idea work but I believe that you never get a second chance to make a first impression and all your thoughts give me so much to concider in shaping this message. How it is pitched, its target audience, the medium used and the language and style.
Thank you for sharing. What a shame we cant meet for a coffee. xx
Oh thank you, Sooby! :)
I'm glad it came across the way I meant it.
I have a bit of a bee in my bonnet about it lately, because I've experienced it first hand.
I'm cross at how sooooo many women have been misunderstood, fobbed off and treated for mental problems with heavy duty anti-depressant drugs when a little tinkering with the right HRT would have them feeling so much better!! (OK an anti-depressant may be needed too, but they wouldn't have been diagnosed incorrectly! >:( )
So much lost time! :(
So many wasted years with ladies fighting their own demons without any support, not daring to put their hand up and admit what is happening through shame and embarrassment :(
It makes me think of ladies of times gone by, 'witches' were middle-aged evil women :'( ,
a whole generation of women were fobbed off with tranquilizers to 'shut them up' and calm them down :(
Middle aged ladies were carted off to asylums :'(
It was all (MOSTLY!) hormonal! Such a shame, suvch an awful shame!
We've made progress yes, but we need to make it different for our daughters and our granddaughters!
I too wish we lived near each other to meet for coffee! Sounds like we'd have stuff to chat about! ;D
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Maybe start with local large businesses? Over 200 employees and the Company has to employ a full-time Nurse. Speak to as many GP Practice Managers as possible and maybe target Vet. Practices too. Are you close to a Library = posters? also target WI? Church Groups/Cafes? Housewives Register? Mothers Union? Leisure Centres? Mums and Tots Groups? Social Media ……
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Hi Sooby
I was delighted to see your new thread. When I first posted on here i was similarly buzzing about the lack of knowledge as I was fed up of colleagues and friends poopooing my symptoms and telling me to suck it up. I was all for guerrilla fly leafleting and spreading the word on social media, but my rant met with little enthusiasm, as other members seemed to feel it was too personal to discuss these issues publicly - which did little to help my sense of paranoia at the time. So yes, very happy to join in and help spread the word. Will get my thinking cap on 😃
Rx
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I tell everyone how bad a time in having whether they want to listen or not ! I think young women should be more aware of what could possibly happen symptoms wise I wish I been warned :(
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I went for a few years not knowing what on earth was wrong with me, also thought I was 'too young' and thought meno was all about 'hot flushes' and nothing else. Something stood out in this topic, when I did a bit of family history research I found out that my Granddads mother died in an asylum were she was shipped too when he was about 13 years old, no other info.. now has me wondering... Quite convinced back then I too would have ended up in the same place.
I did not speak to many either, I know a few ladies in their 60's did not wish to discuss it at all, a friend of mine had my symptoms and a lot more besides and had been told by GP years before she was most likely in peri but did nothing else - I am sure she doesnt believe me now when each extra symptom I tell her could well be too. Once I got my diagnosis at GP number 3 my husband then understood and is now great about it, he is totally educated on the subject.
I could go on, (and on) but just to say I will watch this with interest and see if there is anything I can help with.
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Slightly off topic, how about a proper diagnostic test that shows menopause or not? Maybe time for doctors to come up with something!
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Mis71mum
As blood tests are so unreliable, there does need to be a diagnostic process put forward for GPs to use that will help to ascertain whether peri meno is responsible for certain symptoms so appropriate advice and support can be put into place. Most GPs will carry out tests for thyroid etc. but if these come back as normal then peri meno does need to considered and possibly FSH and oestrogen levels monitored over 6-8 weeks to get a better picture of what is going on. It is particularlyy vital that POF is picked up properly as the long term implications can be nasty.
I also think not enough is done about bone density - a good friend of mine who actually didn't have her meno till her mid 50s, barely had a single flush, had a seemingly good diet and exercised (so slim and fit ) - she slipped and landed on her bottom, broke her sacrum and following a scan was found to have advanced stage osteoporosis at the age of 56!!! A routine DEXA scan at 50 fro all women would be a jolly good idea. 5 years of HRT in our 50s can really help bone density in the long term - osteoporosis is a debilitating condition and costs the NHS a fortune. Dg x
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Yes StellaJane - HRT when necessary. For as long as necessary. Blood tests are reliably un-reliable ::) so a good knowledge of individual symptoms is important. We need to know what to expect and from an earlier age than GPs tend to believe.
Telling at cervical screening might be a way to go. However, how young to start telling girls? I wouldn't have taken much notice to be honest, thinking 'that's way in the future' ::)
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Which is ? some girls start menopause really early :-[
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Could you not contact your Practice Nurse to see what net-working opportunities are available Sooby? Or send an e-mail to the local 'special clinic' to see if there is a possibility of sending posters? Also your Library etc. as I suggested earlier :-\.
The ladies I speak with about meno have been friends for years so we are all 'of an age'. Once it's discussed then it's never mentioned again ::).
Perhaps you could have a look at the questionnaire on here as a starter? for your friends.
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http://www.refinery29.uk/menopause-help-symptoms-tips-counselling-memory
A friend sent me this link today, and I posted it on Facebook, it's a start... 😊
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Somehow this needs to go viral on social media (facebook, youtube etc), because these days that's the only way to get to the masses worldwide. Look at what a good job the media did of scaring everyone senseless about HRT. We need something like that in reverse to counteract the negativity that is still prevalent around the world. The media was really quick to report on the WHI study, but how many in the media have bothered with NICE?
The MM magazine is okay, but really you are only preaching to the choir because those who read it already know about meno. You need to get to the younger women, and mostly younger women don't read magazines because they're too busy with social media. The unfortunate thing is that will younger women want to know? When I was younger I had no interest in knowing anything about menopause because I'd never had any hormonal problems so always assumed I'd be okay. Younger women also don't really want to know too much about meno because it's a reminder that they're getting older, and in this youth obsessed world, that's a crime.
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I've had 2 shares of my post, little by little... Dana is right social media is vital.
I think the issue here is not the menopause generally which 50% of the population experience physically and 100% experince through contact with those experiencing it... The main thing to me is the variation in symptoms. I know many of my colleagues have had some symptoms and have carried on as normal, and I respect them for that, but it is the women who have such severe symptoms that they cannot carry on. It is about explaining the extent and severity, and availability of support that is important. Women need to know what to expect, what is normal, what to ask for before the medical profession will respond. Young women should be interested because of their mothers and colleagues if not themselves.
Anyway rant over... I'm going to keep on posting etc...
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Been to my GP's surgery this morning and there wasn't one leaflet or booklet about menopause. Think awareness could start there. I wonder how many appointments are ladies going through peri or menopause but don't realise it.
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Yes, maybe going with the perspective of 'How hormone replacement can help us all throughout life' as it speaks to everyone, including men. A lot of women start using the pill during puberty to regulate periods and calm moods so it's just expanding on that really.
The knowledge that our levels start to fall from our 30s onwards would help a lot of people, and GPs in making diagnoses.
The problem with Western medicine though is that it tends to only treat symptoms so the docs may not be interested in the source, as that may demand more testing and expense. I remember a few years back before I got the more debilitating symptoms, I asked for my blood tests from my GP (to take to BHRT private doc) the GP asked me what I thought was wrong with me and I replied that I had no energy and felt imbalanced. She shrugged and said they could only help if I was 'ill' and pretty much insinuated that the NHS weren't there to enhance health and wellbeing! I think this is why, even when hormone symptoms become extreme, they aren't particularly interested in helping us beyond ruling out serious illness as they see that as the point at which they are responsible.
Of course, if many went on HRT sooner they may avoid breast cancer and heart attacks so maybe it's the HRT drug companies that need to be the ones involved in the awareness campaign as they have more financial interest? It seems to work that way for immunisation and statins.
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dangermouse - you make some very good points. Sadly the menopause is still deemed just a quality of life issue and the, sometimes serious, impact it has on a womens health and wellbeing is overlooked. I think assessing a women from 45 onwards to look at how her hormone journey is progressing - offering advice and choices - would go a long way to keeping women OUT OF THE DOCTORS surgery with all kinds of relatively minor ailments that are probably meno related. I would hope that one day proper treatment and appropriate intervention with HRT could and should be standard if the NHS wants to keep us healthier and costing less in the long run!!???
To simply have a poster in every sugary with a list of some of the typical symptoms associated with the menopause that then suggests a women seeks advice from either a doctor or trained practise nurse would be a very good starting point. Things like vaginal atrophy and bladder problems must be so prevalent and women will often suffer in silence because they feel ashamed or shy about this. My mother went to her GP complaining of her pee stinging and burning and was sent away will ABs, the GP assuming it was a typical post meno UTI. She went back 3 months later because the pain had got so much worse, the GP finally examined her and sent her straight to the hospital - she had advance stage vulva cancer!!! She must have had awful discomfort for ages but obviously believed she simply had to put up with this!!??
So much emphasis is placed on the very,very small risks of breast cancer, stroke and ovarian cancer, the protective elements of HRT are undervalued - not only are there protective benefits for bones and heart but there is the reduced risk of bowel cancer and those bladder problems that often bring an increase in UTIs and related issues.
If we want to have a healthier, productive older generation who can work well into their 60s and possibly their 70s then hormone balance should be part of this.
My rant over!!! DG x
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Yes that's true, they may be more interested if it saves them wasted GP hours in the long run. I must have had about 20 plus 5 A&E visits!
It would also be good to change some doctors assumptions that women in their 40s are prone to anxiety, regardless of their hormone levels. I was dismissed many a time by junior doctors in A&E as 'being anxious about nothing' with one even refusing to sit down opposite me (as I had vertigo so couldn't look up at them) after I'd waited 8 hours to see them as they clearly saw me as a time waster! I bored them into sitting down in the end but that kind of attitude can stop you from seeking further help.
Perhaps they need to understand that physical anxiety has more probability of being linked to hormones than hyperchondria, so they can direct us to our GPs to be tested rather than sent home to have a cup of tea and stop worrying ::)
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I'm so with you on all of that DM.i have suffered anxiety on and off all my life so it came as no surprise that it reared it's head again in the peri. Yet that is all my doctors have focused on even though I have a whole host of clearly hormonal symptoms going on as well. Currently it's a resurgence of migraines coupled with an off balance feeling due to my ear being bunged again and a problem with my neck , but I can't see the point in going to GP again as I'll only be offered ADs again. I have been told I can try HRT but I have endometriosis and these migraines so suggested that I might benefit from a referral to a specialist clinic. You'd think I'd asked if I could murder their children in their beds. I suffer from Health anxiety and have taken ages to get on top of the worst of it so am not prepared to jeopardise it all for a five minute appointment and bog standard prescription of HRT.
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I don't 'do' facebook ……… :-\
I remember when I was trying to promote PAT-dogs, in the days before internet, it meant trawling through local phone directories for all the Vets. in the area ::) and then buying and stuffing info into envelopes ……. took ages.
What breeds of piglets are you expecting? and is the price of wool good right now?
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Sounds a good idea Sooby - I do think that women are not educated about this time in our lives and the consequences can have devastating effects. I am often chatting with women about the meno and HRT and it staggers me how ignorant they are on this - it's something we all go through without any preparation.
I'm surprised that magazines like Good House Keeping don't do a good article based on the new NICE guidelines - the articles I read all tend to push 'the Natural way', making those of us who need HRT feel a failure - we shouldn't feel we need to justify why we use HRT as it is often the best option - a good diet and exercise regime won't be enough for around 40% of women.
Good luck. Dg x
Somehow this needs to go viral on social media (facebook, youtube etc), because these days that's the only way to get to the masses worldwide. Look at what a good job the media did of scaring everyone senseless about HRT. We need something like that in reverse to counteract the negativity that is still prevalent around the world. The media was really quick to report on the WHI study, but how many in the media have bothered with NICE?
Just very late to this thread as I was on holiday so only on the first page so far although skimmed some of it on my phone - so apologies if this has already been said...
There is an excellent article in this month's (does it come out monthly?) Good Housekeeping about the menopause and the NICE Guidelines, and HRT! Someone sent it to me yesterday.
Also re the publicity and awareness. The British Menopause Society is launching just such a media campaign at their conference in May which will involve outreach to major national media (I'm assuming this is not confidential - I haven't been told it is), and including earlier to some consumer magazines. The campaign will focus on empowering women to visit their healthcare professional to discuss their menopausal symptoms and to seek appropriate treatment, but also to launch the results of a recent survey conducted in light of the new NICE menopause guidelines. This will be 6 months since the launch of the guidelines so the idea is to see if it has made an impact on women and where gaps for improvement might be.
I got involved in this (as other members might also have done) because there was a call put out on this forum back in November for women to share their stories with a view to speaking to journalists if necessary when the campaign was launched. I responded so my case study was submitted and will be sent out next month along with others – so that journalists can talk to real live women about the issues. I doubt they will want to use my story though as it's not dramatic enough – far too dull!
So things are going to be happening – but the more other women do the better so great to tackle it from a different angle through social media – and also as said for individual women to do their bit at a local level.
Also the Guidelines themselves suggest specific actions that could be taken to improve implementation of the guidelines and communication which can be found here:
https://www.nice.org.uk/guidance/ng23/chapter/Menopause-implementation-getting-started and which may give you some ideas.
Menopause Matters does have a facebook page but I do think there is a taboo about such things – even though I'm in my 60's I have friends of all ages and certainly don't want to be seen by any of my friends to comment on menopausal issues!!! There is no way I would share anything to do with the menopause on Facebook, but I have put myself out there as above so prepared to share my story with magazines/newspapers etc!! I did draw the line at live TV and radio though so said no to this ::).
There should be hard copies of leaflets about this site for example or something about menopause which any of us could send off for and which we could drop in our local surgery - just think how many would be covered if we all agreed to do that? Perhaps Dr Currie could commission someone to do this - she is current Chair of the BMS as well as director of Menopause Matters? Maybe something like this is happening already?
Women's Health Concern is the patient arm of the BMS so maybe something could be done through their work rather than re-inventing the wheel - although I would think anything that could be done anywhere to raise awareness is an improvement!
https://www.womens-health-concern.org/
The subject of BMS conference this year is "NICE Menopause Guideline, from publication to practice" so that should have a major impact.
https://www.thebms.org.uk
Hurdity x
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Maybe local professionals should be made aware of this and ask human beans to attend meetings, similar to the 1 to which I went a few weeks ago, relating to the Government's drive for better mental health services. However, I found out by chance that meetings were being held across my County - apparently though all Councils have been pushed to contact users. I found out because I was browsing the local County Council Web-site ::)
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There is still very little written on perimenopause though. If I saw articles about the menopause last year when trying to figure out what was wrong with me, I may not have read them. Although we know there's a fine line between the two, I had assumed it was out of my age range at the time.
I've tweeted a link to @menomatters with regards to peri and will do similar on Facebook for my business page and personal as have a lot of similar aged women on there who may find it of help. I think the more we talk about it the more others will and then it won't have such negative connotations! Completely understand those who prefer to keep it out of their personal FB though.
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Hi everyone, just want to say I agree with everything said on this thread about the need to educate women on this issue but equally important we need to educate our GPs.
I'm going through a very difficult period of horrible fluctuations so whilst visiting my GP yesterday to ask for another referral to the meno clinic (it was over a year since my last visit so I need to go to the back of the queue) I took the opportunity to be frank and tell them how frustrated I felt at no one putting 2 & 2 together to make 4 but instead I was made to feel it was all in my head, that ADs were the solution and that it probably was my thyroid to blame despite normal levels.
Even yesterday I was too there was very little they could do for me. I just wanted to scream at them about getting someone in the practice clued up. There was no information about this site on display either and i do believe that would help as I am sure there are many other women whose symptoms are misdiagnosed or not diagnosed at all and they are left feeling hopeless.
I like the girls and women I work with knew very little about the the devastating impact the peri/menopause can have on a woman's life. More definitely needs to be done to spread the word and improve women's lives. When I get back to work I will definitely be spreading the word xx
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I think that I scared my neighbour yesterday ::) - I gave her a lightly humorous book about preparing for menopause and suggested that she reads it, absorbs contents so is then ready for the next 'stage' of Life. She took the book, hopefully she will read it. She was concerned about the recent reports about HRT being dangerous so I will print off in quotes the bit Heather added to the 'worried' thread …….. I also told her about the need for a Quality of Life so if she nips in here, she'll identify me immediately ::)
So telling daughters and granddaughters probably won't be productive, they will probably shut off as my neighbour did ::). Hopefully if she has 'problems' she will at least ask either our GP or myself ……...