Menopause

What are some of the reasons why women would go through an early menopause?

It’s actually a very complicated subject and if there’s anyone watching this who has had a menopause before the age of 45 they need specialist help. That’s the first thing to say. There are a number of factors.

It can be hereditary. If your mum had an early menopause and I’ve got a few families whose mums had the menopause at 32 and they’ve gone through the menopause at 32. It’s actually very important to know because, obviously, you cut out twenty possible years of child bearing so you need to plan your life. They’re very rare but it has a strong hereditary familial risk. Other reasons for going through a premature menopause are all very rare. There are autoimmune ones, that’s your own body’s immune system attacking your body so it’s linked with other autoimmune diseases like thyroiditis or Addison’s disease of the adrenal gland. There are also genetic reasons like if you’re unfortunate enough to be born with Turner’s syndrome that’s an X0 chromosome, you may actually go through the menopause before you hit puberty but that’s incredibly rare. But that’s why it’s such a complex group of women and you need a proper diagnosis and treatment. So anyone with a premature menopause needs to seek specialist help.

An increasing group are girls who are childhood cancer survivors because a lot of children who survive acute leukaemia now or other very rare cancers, they’re all rare, but they have often whole body irradiation and chemotherapy and obviously, that’s toxic to the ovary. And at the time, you’re trying to save that child’s life. Which fortunately happens now but a late consequence of that is the ovaries pack up early. Or if you have surgery for any reason like if you have to have your womb and ovaries removed for a cancer then obviously, if your ovaries are taken out you have what’s called a surgical menopause.

I know that the menopause is when your periods stop, in a normal process sometime in your fifties when your periods stop, that is supposedly what the menopause is, but it isn’t really. The menopause is a long spell in your life because you have a lot of stuff leading up to when your periods stop, and you have a lot of stuff after they’ve stopped. So the menopause is a very long challenging time in a woman’s life. It’s been different for me because it was surgical anyhow and I sort of had a head start in a way of how to find ways to deal with it, but it’s a very long challenging time and I think more women than not struggle with it.

Some women talk about the menopause as marking entry into old age. Now for you the menopause happened in your thirties, how did you feel about that?

I didn’t give a damn. I just was pleased to get rid of those ovaries and get rid of the periods. That was the only thing. All this about I’m not a woman, I’ve never ever felt anything like that. I’m not interested in that but I know that a lot of women think it’s the end of you as a young woman but I’m not like that in my head. I can honestly say I’m not. But because I suffered so badly for so long before I had my operation and I wanted the operation to be able to move on to a better quality of life. I didn’t care that I was in the menopause. I knew that I was there and there were challenges ahead. And it hasn’t been easy and it still isn’t and, you’ve got to be strong to deal with it.

Well, I’m 35 now and when I was 20 I got diagnosed with Hodgkin’s disease which is cancer of the lymph glands and had chemotherapy and radiotherapy for that. And then one of the side-effects was the treatment put me into a premature menopause. So shortly after getting treated, maybe a couple of months or three months, no actually about two months after my radiotherapy finished I got menopausal symptoms. Which I didn’t realise were menopausal symptoms at the time. I thought I had the Hodgkin’s back again because I hadn’t known that that was a side-effect. So I was getting lots of hot flushes and just feeling really strange and slightly dry skin and generally feeling really uncomfortable. I just wasn’t sure what that was and then when I went to the doctor and they ran some tests they realised it was premature menopause. So I’ve really just been I was on the pill for quite a few years for that and then switched over to HRT about two years ago, three years ago which was much better than the pill had been.

I went after I’d missed my second month. I mean I wasn’t in a relationship or anything so I knew there was no way that there was going to be a pregnancy or anything like that and I went and said, “I’m just worried, I just want to make sure that everything’s okay.” And he said, “Well, you probably are going through the menopause. So we’ll leave it but if you have a period then come back.” But it wasn’t until I went back six months later because I was feeling really grotty and I’d had the sweats and everything else and I saw a female GP in our practice, and she said, “I’ll take your hormone test and find out what your hormone levels are and then we’ll confirm one way or another what’s happening before we look at your thyroid again.” And all this that and the other and the results came back that I was going through. And she said, “Unfortunately, there’s nothing we can do for you because of the problems, medical history you’ve got.” So she said, “You’ve got to grin and bear it.”

So you said you had a blood clotting problem. What was that?

Yeah, I have protein S deficiency. My mum had previously had several deep vein thromboses and embolisms on the lung so I had an embolism on my lung.

I was married again when I was 33 and endometriosis was diagnosed fairly soon after that and it is thought the D & C* was a contributory factor to the endometriosis. I then had four years treatment with drugs to try to solve the endometriosis. It didn’t work. I didn’t get pregnant and the cysts were spreading all through my insides and so when I was 37 I had a hysterectomy. One ovary was taken out, one was left behind.

I was not properly counselled about the effects of the hysterectomy and being childless as well, none of that was dealt with. It was all done in Hong Kong, where it was very mechanical. There was no emotional input to it all. So I kind of went into the menopause in a very raw state, raw vulnerable kind of state. It was not explained to me, they said, “Oh, you’re all right. You don’t need HRT, you’ve got an ovary.” They didn’t point out or tell me that after five years the ovary would stop working therefore I would go effectively straight into the menopause with no kind of warning because I had no periods so I had no other physical warnings.
(* D&C = dilation & curettage – scraping of the lining of the womb)

So tell me about your visit to the menopause clinic then, what happened?

Okay that was hard. I arrived in reception and I said, “I have an appointment at whatever time it was” and the receptionist said, “For the fertility clinic?” and I just grimaced and I just showed her the piece of paper and she just went “Ah” and showed me, and told me where to wait in the waiting room. Unfortunately and I understand this, it’s the women’s clinic, they see all types of women but unfortunately the day of my appointment was the day when all mothers and their newborns were bringing in their babies to be weighed for their first monthly weigh in or what have you. So I arrive, actually I arrived very very early. I read all the notice boards which was all about ante-natal Pilates classes and post-natal Pilates classes and yoga for pregnant mothers for pregnant women and yoga for mothers and children and then on the board a little bit at the bottom there was something called The Early Menopause Clinic and something about that so I wrote down that number. But to sift through all of that before you actually find what you think might be related to you. Because you don’t know, because it hasn’t been said, and although I knew until it’s been said officially I didn’t know, well you don’t want to know. So I sat there getting more and more upset because there were just babies and pregnant women all around me and at one point I just had to walk up and down because I felt like I was going to cry. And then I got called in, [name of nurse specialist] saw me first, talked about my history, went through it all and then the doctor came in and then she said, “Yes, this is the early that was it this is the early menopause for you. I understand that you don’t want to have fertility treatment but if you do, you do realise that it will have to be egg donation”. And for some strange reason I don’t comprehend why that came as such a shock. It really did. I can’t understand why because it’s obviously logical. If you’re not ovulating it’s because you don’t have any eggs and so therefore. But until it’s actually been said and then they said that you’d also, I had to start the HRT as soon as possible basically.

I’d got abnormalities on my sides of my ovaries but they wanted to go in for a sort of much more depth and find out a lot more. I had a conversation with the registrar about two months later when I went back for an appointment to get the results from the scan who explained that I had got cysts on both my ovaries. And they were quite substantial cysts. And I had a brief conversation about whether I’d had children, whether I wanted children, very briefly about some of the consequences of having cysts on my ovaries. But not really a great deal of detail.

How old were you then [name]?

I would be what we are in 1999 so we’re talking I’d be in my late twenties.

Yeah that’s it took a few years for me to from the first point of being diagnosed with something wrong to actually surgery to happen. I signed the forms, it was quite an emotional time I guess because at that point I had the conversation with my consultant about the chance of never being able to have children, they might have to take my ovaries away, I might have to have a hysterectomy at that point they didn’t know and so I signed the forms not knowing what the outcome was going to be only that it needed to happen basically and so I think I was quite emotional when I went in. Well I definitely I mean and I certainly cried when they put me to sleep.

With my partner he’s been fantastic throughout. He’s had to put up with a lot but he’s also like I said last year after I’d had that procedure I decided that day that I never want to try to have a child again. And I thought because this is happening to me then I’m the one to make the decision and I hadn’t even considered his opinion, which is wrong, because he is part of this relationship and last week I discovered that actually he still really wants to try for a child which has thrown a spanner in the works again. So I don’t know.

So how do you feel about all that?

I don’t feel that I can go through it. I don’t want to go through the egg donation process. It’s very long winded. It takes a long time. I’m 38, going on 39. He’s 45 next week so by the time, if we were to go down that road it would take another couple of years at least which would mean he would be in his nearly 50 and it’s again it’s that whole rollercoaster ride of emotions and I don’t want to ride it. I’ve just had enough. And I don’t think I can do. I have considered adopting in the past, that might be a possibility, I don’t know. I’ve also given him the option of, as hard as it is, of us separating and is it okay to cry on camera and him finding somebody else who could give him a child.

How does he respond to that?

He was very upset. I don’t know, I mean I told him that I wouldn’t like it but I would understand and for him to think about it, because he has to think about it It isn’t fair on me to deny him that possibility if he has that possibility if he could have it with somebody else. So it has made, I don’t know, we’re still very close but that’s always at the back of my mind and I’d much rather give him that option, like an opt out clause. And whether he takes it or not I don’t know. I hope not but I don’t know.

I’ve always been more focussed on my Hodgkin’s actually so it’s probably only really since my friends have started having kids and things that I’ve started thinking about it.

In what way?

It probably seems more relevant now. I mean before I was just glad and I mean my main thing is not to have had the Hodgkin’s back really. So that’s the key. And if a side effect of that is to have premature menopause and then so be it. So I mean I haven’t dwelt too much on it because there’s no point really.

You mentioned earlier egg donation. Some of things you’ve talked about in the menopause support group. How do you feel about that?

I feel really hopeful about that. Yeah. I mean I kind of knew there was probably some kind of IVF and the gynaecologist I saw when I was about 30 did say there were treatment programmes but having gone to the premature menopause group and talked to [name] and the people there, the fact that I could get down on a list and be a good candidate for it and the fact that I still have periods and so things are kind of working, it does make me feel hopeful about that. And I’ve also thought about adoption and fostering and other options like that so there are options.

You said you went to the early menopause group and to the support group. Tell me about the support group, what that offers you and what it involves.

I think it was good just to meet some other people who’d had it because it isn’t something that I’ve really spent a lot of time finding things out or dwelling or even really talking about. A lot of people don’t know I have it and it’s not something I tell many people. So it’s a bit of a part of my life that I don’t really give much time to. So I think it was nice going to the support group because it was giving it that time and that space to talk about it. And I think that’s what the other girls felt as well that it was a healthy thing.

How does it work?

Well, [name] did a good job in terms of she divided it. She did six or seven sessions and divided it into what we’d talk about. So one session was diet and exercise. One was about how you could get egg donations and how you could have children. Another one was about counselling. I can’t remember what the other four were. I only made about three because I had to drive down from London. And they were on Mondays so and I think that gave it a bit of a structure to hang it on and she would have an idea about what she wanted to talk about and she’d bring some leaflets and some books. But it was very much also then open to people chatting so I think it was just providing a forum for people to do that. And it was quite a loosely arranged relaxed session.

I had my operation in the October and it’d be about the April the year after I was still regularly seeing my GP and he was still signing me off work because I still wasn’t fit enough to work and it probably I think it was April time when I started. I was having slight symptoms probably a month before of flushes, hot sweats, not really thinking too much about it to be honest. And then it got to the point where literally I could be flushing every sort of ten minutes and just a sweat burning up getting hot getting cold hot cold hot cold and my moods, if people turned round to me and said, “You’re awful, you’re either laughing, crying, shouting, screaming” and that can be in like a one minute period and they’re like, “There’s something wrong with you, you’re not particularly right. I think you need to go and see the doctor.”

So I went to see my GP in the April who said that she was pretty sure that I’d got the menopause had come on and did I want to go on HRT. At that time I was finding it difficult to get through the day. I was tired I was exhausted, people didn’t want to be near me because I was so emotional and grumpy that I got spoken to about the risks of HRT what the benefits could be for me and at that point in time I decided that I couldn’t really function as a person the way that I was. I’d try I think I’ll try a couple of alternative therapies. I decided that HRT had to be something better than what I was going through at the time. But that in itself wasn’t the best of times, the initial three months of going on HRT were horrendous. Although the symptoms went of the menopause my mood was still quite fluctuating I didn’t feel like myself I couldn’t focus but it was still better than the menopausal signs that I’d had.

I hate taking chemicals and I have a huge problem in accepting the fact that I needed HRT but once it was explained to me why I needed it and the benefits of it and also because in my family has a history of osteoporosis and my mother, my mother is only 57 but she needs a hip replacement, two knee replacements, she’s got osteoporosis and osteoarthritis and that terrified me. So as soon as I was explained the benefits of going on HRT at this age, I’ve decided to take it. I don’t want to risk it. And I’d rather do that than trying possible alternative therapies that might or might not work, whereas HRT has been proven to work. I’ve also had a bone density exam done. My hips are fine but I have below average density in my spine. So again that was quite scary and that’s why I’m on HRT.

So anyway I went back for my results and that’s where I was told that my tumour was oestrogen positive. So at that time I did a lot of research on the internet because I need to know everything and because of that they said they’d need to really get the oestrogen from my body and the way they were going to do that was to also remove my ovaries.

And the first effects I actually felt were the hot flushes and I think the first time I really experienced it was, actually thought I wasn’t feeling very well, I felt sick in my stomach and then realised that I suddenly had this wave of nausea coming up over me. It felt it was travelling up my back, it was up my stomach, and coming over my face. And I’d just sit there feeling quite light headed, feeling quite nauseous and not too sure if I, “Have I got something wrong with me? Am I going down with a chill?” and then realising I was actually very hot and clammy to my skin. So I thought “Ah, this sounds like, not sounds like, feels like this could be like the start of the hot flushes”.

But then when I was first going through it there was information but it wasn’t a lot of information, well there’s a lot more now.

Did you look at any particular websites?

I think I just put in menopause, just Googled menopause and just started reading information on it. I had a book which my Mum bought me.

What was that?

I forget what it was called now but meno H I think it was called ‘HRT and The Menopause’. Now I couldn’t take HRT because it’s got oestrogen in.