Menopause

The reason why I wanted to participate in this research was just the general lack of information around the menopause.  It’s not something that you generally talk about with your friends as it’s seen as something quite negative and reductionist as a woman, I think taking you out of your years of fertility it makes you sort of less attractive.  But it’s just this whole general issue about not talking about it, not knowing what the next step is.  How long the different, what are the different phases to it and how long they last. 

Did you know much about the menopause at this stage?

No, nothing. Absolutely nothing. I was shocked and I expected my bottom to fall immediately. You get a flat bottom because I thought that’s what happens as soon as you’re menopausal, periods stop, hot flushes and get a flat bottom. So that was what I was waiting for. So I’m pleasantly surprised that it hasn’t quite yet happened. But you just have all these extreme views.

You said that you didn’t talk to many people at all about the menopause. Did you look on websites or on the internet at all for information?

No. No.

No reason for that?

I don’t really want to know. I’m quite happy for it to unfold and if anything cropped up that I was concerned about I might look it up on the internet. I would have preferred to be forewarned which would have made me forearmed for the situation to arise so at school told about sex education and child birth and all of that sort of thing. It would be nice to have it fully integrated, bringing the whole reproductive cycle from start to finish at that time although it would mean not too much at the time but you carry all of that information forward. So I would have preferred to have been informed in a fairly neutral environment where it wasn’t affecting me at the time. Now that I’m in the middle of it, I don’t really want to seek out further information either from the web because you can always interpret that in its worst case scenario. I would prefer to, if there were more accessible isolated support groups, from friends organised by the PCT [Primary Care Trust] then I would find that as something that I could dip into or out of as I preferred.

And I am very pleased that I’ve read books now about the menopause and I see that it’s quite a normal thing because it’s very strange to have these feelings of I don’t want anything to do with sex and you think why, is it something to do with emotional changes. But I see now it’s not and it’s physical. I see also there are physical things you can do to help which is good news. And that sort of made me feel a bit better. I feel less uptight about it because of that.

So you feel it’s something that’s not discussed in Jewish communities?

Yes, it’s not discussed at all. No I don’t think so.

Why would that be?

I don’t know, it’s not something that I’ve ever heard people talk about openly. Firstly I don’t actually mix, I’m one of the older people working in the kindergarten, I had my children when I was slightly older so a lot of my fellow mothers are a bit younger than me. And so I don’t actually know that many people who are a little bit older than me who are just going through it. And I’m older than my sister so I’m ahead of her there. I don’t think it’s something that I’ve ever heard anybody discuss openly actually.

What sources of information did you use to find out about the menopause? Did you use the internet or books?

Books, magazines. I did look at the internet but I found that the information on there was quite fragmented. I’m the sort of person, I’m very lazy, I like to be able to go to one place and find out everything I need to know. And it didn’t happen on the internet, not when I was looking, I don’t know it might be better now. When I was looking six or seven years ago when it first started, there wasn’t that much information available and I kept having to go from site to site to try and find out information. And it wasn’t that good and to be honest I wasn’t so much an internet user those many years ago anyway. I was tending to rely on books and magazine articles. And the newspaper which in hindsight was probably not a good thing to do but it’s there, it’s in your face.

Why not a good thing to do?

Because I’ve learnt through listening to other people and doing other research that actually they only tell you the information that is exciting, that is sexy, that is going to sell them a newspaper. They don’t necessarily represent all of the facts in the right order and in the right way, and that certainly, when I became aware of that through more research, is quite worrying because I did rely totally on what they were telling me. I did think it was harmful to take HRT, that I’d probably end up with breast cancer within a few months and that affected the whole way that I looked upon taking HRT. But actually when you dig behind those facts, you realise they’re just telling you what they want you to know and not necessarily what is true.

There were quite a few stories in the media about HRT and over time about it not being so good, about there being some health risks

Yeah.

Were you aware of those stories?

Oh yeah, I read them all. Yeah.

And how did that make you feel about being on it?

Well, I wasn’t very happy about it. If I’d known there were alternative treatments for the bone density I probably would have preferred to switch to that. Because you have to really weigh risks up carefully I think. I certainly don’t base my judgement on what I read in the newspapers because there is some incredible rubbish written in newspapers. If I read a story in the paper I usually check it out against other things on the internet. I talk to people about it, I talk to, well I mean I would talk to the GP about it and the practice nurse. I also talk to friends who are in the medical profession and see what they think about it. So I wouldn’t just base a decision on something I’d read in the paper because I think most of the stories are there to sell papers really.

There are some brilliant websites and I think the best one is Menopause Matters written by Heather Currie, who’s an expert in the menopause. It’s constantly up-dated. It’s very accessible. It’s free and it’s extremely good. The British Menopause Society have some information for women but that’s mainly a professional organisation for medical experts, nurses, GPs and gynaecologists but they do have a bit of information for women on the basic evidence base on their website. And the National Osteoporosis Society tangentially have very good information about keeping healthy, keeping healthy bones and good dietary data on how to have enough calcium and vitamin D.

The British Menopause Society have written some booklets for women on managing the menopause and booklets for health professionals on managing the menopause. And a lot of my patients like to read the health professional one because it’s very clear and has all the evidence base that they want to know but there are several books on their website that are easily accessible.

Yeah. I mean I tend to just Google things on the internet so I’ll just Google and see what comes up, and sort of just sift through different sites, there’s a lot of sites from America I’ve found quite interesting, reading about people’s own experiences, and then I read a couple of books, there’s one, Leslie Kenton’s ‘Passage to Power’ which is quite good, and one about the perimenopause, I think it’s called, “What your Doctor hasn’t told you,” or “won’t tell you,” or something. And then talking to friends as well, people who’ve been through it so, those are the main ways.

Have you looked at any of the forums like, Menopause Matters those sorts of websites?

Yeah, I have from the States, I don’t know what they would be called though, I’m not sure if that’s one of them.

Have they been useful?

Yeah, they have, yeah.

How do you decide what’s good and what’s bad on the internet?

Yeah, I think there’s well, I think I can tell actually. There’s some that you can tell are quite professionally done and reliable, and others are kind of more subjective accounts which also are useful. I don’t really tend to read much that makes me feel kind of depressed or anxious, because I don’t think that’s very useful and you can always find information about people having a hard time, whatever subject you choose. So I tend to steer clear of those, but sometimes in people’s own personal accounts there are real nuggets of wisdom there, or things, little things that have helped them.

What have you learnt from the internet generally and sites that you’ve mentioned?

I think that everyone’s experience is quite different, but there are sort of similar trends and themes within that, and that people can do a lot to help themselves, actually.

I looked at the papers and I looked at the academic papers so I looked on PubMed on the on the internet. I looked up that, there’s a lot of information on the internet and that’s where I went but that’s where I go for my information anyway.

Any other websites that you particularly looked at or?

Oh, I can’t remember now. I’d warn people there are only a few decent places to get information. Medical information is appalling I think on the website because anybody can put any old rubbish up and it’s very very hard. Now there are a number of websites that are worth probably looking at but they’re academic papers and I would always recommend that people actually go to the sources of information, not somebody’s interpretation of that information. And I’m sorry but if you were a reasonably intelligent person you can read those academic papers. there’s nothing, it’s not rocket science for goodness sake, it’s all very straight forward. And that's actually possibly the most important thing is to go to the sources of the big studies. And then from the basic information not somebody’s interpretation of what it is. It’s all there.

Now, you said you read up quite a lot about the menopause and about HRT. What sources of information did you use?

I got all my stuff out of a file last night. I kept a whole file on things and they were mainly medical journals like the BMJ [British Medical Journal], the Lancet, British Journal of General Practice but I also looked at I think Cancer Back-up and newspaper articles and anything I could find really.

What was the most helpful do you think?

Oh, probably the BMJ or Lancet. Because I felt those articles were probably backed by reasonable good research.

And I guess the internet wasn’t really around when you first started going.

No.

through the menopause. Have you subsequently used the internet much in your research?

Only a little bit when I’m looking, searching the BMJ for articles on HRT or something like that.

The internet and I couldn’t recommend enough that people do their own research. Go on to internet sites. Particularly Menopause Matters because it does have a GP running that and so their information is accurate. You can get loads of advice just by joining in forums from other women who’ve been there, done that and I pass on a lot of the things that I’ve learnt.

So you mentioned the Menopause Matters forum?

Excellent.

Were there any others that you used?

iVillage.

That you could recommend?

iVillage has a menopause section on there. Each part of that site’s got all different things, motherhood and bereavement and all sorts and part of it is perimenopause and menopause site. But she doesn’t normally offer information. It’s the women participating that do that. She directs you to other websites where you can get stuff, information or products.

Do you see any negatives about forums?

Yeah, people can have very definite views on things.

And I think there’s some misinformation that’s given. Sometimes you get the Daily Mail have a site as well and there is someone on there who’s an American who keeps talking to people about the types of HRT, oestrogen and progesterone that they can get, compounds from the compound pharmacies, compound pharmacies I think they’re called, where they make the stuff up specifically for you. Well, that’s all very well if you’re in America. You can’t get it over here and so you keep hitting your head against a brick wall there. I keep going on and saying, “No, this is not America. There’s a clue in the site dailymail.co.uk. We can’t get what you can get so there’s no point in recommending that stuff.”

Can I ask you finally why you decided to take part in the research?

Because I would so have loved to have been able to click on a website that would give me the information and not scary information. Just practical, real life information, or just to know that there’s someone out there who has actually been through a similar [experience], because every situation is different and every case is different but who actually can possibly understand you and know what you’re going through and who isn’t 50 something years old. I would have loved to have done that because I felt very lonely and isolated and scared and so I just thought that if somebody could just, click on this website and get that information they need, and just to know, as a spring board, it’s not going to be the B all and end all, but it’s a spring board to something more and that’s important.