Seeking help and diagnosis for spontaneous early menopause

There was a hint of it when I went to see my GP, when I was getting the hot flushes and my periods weren’t returning. He did lots of tests, a blood test, to work out what was going on, and he said to me that my FSH was unusually high, but early menopause wasn’t mentioned in that conversation. He said, “I’d like you to go and see a specialist and see if we can work out what’s going on with your hormones and make sure your body’s getting back down to normal after the loss of the pregnancy”. And at the time, I was super stressed, and he felt that maybe my FSH had risen because of the stress. He said, “You know, the body does weird things when you’re under that much stress”.

So my GP recommended that I go to a specialist and I went back to the hospital that had supported us through our pregnancy. I went to the women’s clinic there. There they took some more bloods and this time they were testing for all of my T-1, T-2, T-3, T-4, T-5s, all my thyroid stuff, just to do a bit more of a comprehensive blood test.

And then we returned the following week, and we walked into the clinic and saw the same doctor as last time. She literally turned to me as I was sitting down and said, “Well, you have, we think premature menopause”. I said to her, “Are you sure?”, and I was absolutely shocked out of my seat. She said, “Yes, I’m absolutely sure, we’ve had the head of our women’s clinic have a look at your bloods, your FSH would not get this high unless you have some form of premature ovarian failure, and we think that’s what happened”.

It has been 12 years since it all started for me and at no point in that journey did anybody ever validate my experience. I went to doctors. I went to, supposedly ‘exclusively focused menopause clinics’. I went to hospitals that specialised in women’s problems. I saw so many gynaecologists. I was not able to see endocrinologists.

I went everywhere that my finances would allow me to go and my reality was denied again and again and again and it gets to the point that you start to think you’re going nuts. You’re thinking ‘Maybe they’re right. Maybe I am a hypochondriac. Maybe it is all in my head. Maybe this isn’t really happening?’ And you really need someone else that can relate to that to validate that so that you don’t start to feel like you’re going nuts because then, like when I was diagnosed with the premature ovarian failure initially by the IVF doctor it was such a shock to me to actually have that validated because for five years it had been denied to me. For five years I’d had specialists try to diagnose me with mental disorders but it never was. You know, my gut was right all along. But you need to have that reflected back to you.

So I was in my teens, and I remember that I was I think in Year 11, and I felt like I was having, in class hot flushes, what I call, just my face would get very hot, very quickly. And so I went to the doctor, to my GP, and he laughed, and, because I was saying “Hot flushes,” and he’s saying, thinking “Menopause.” And so we left it at that, I’m not sure if he thought it was stress or not. And so nothing happened. But it’s funny, because my mother reflects that everything started to go wrong for me when I was about 16, 17, and so I’m not sure if that’s, we didn’t know if it’s an adolescent thing or not. And so my grades really went down from being an A grade student to getting through my HSC. I still got sort of fairly good marks I guess.

And so then I think I was at uni, so I was 18 and I was missing periods, and so I went to the university doctor, and he said it was stress. I don’t think I had, I’m not sure if I had a blood test or not there, but he said it was stress, so I accepted that it was stress, because uni and living away from home can be stressful. And then I had a year off, and I was on a sheep station in the middle of nowhere, and I do remember that I missed periods there as well, and I just thought, ‘Well, that’s me, that’s how I am.’ And I think then it just – I got used to missing periods, and just accepted, ‘Well, that’s how I am.’ So I can’t even recall how often I would have periods when I went back to uni.

And then, so I went back to uni and was studying occupational therapy, and then psychologically things were pretty bad. I started to see a counsellor I think after about one year at uni, and I ended up seeing that counsellor for the whole time I was at uni, and I was severely depressed, I was probably suicidal at times. And I’m not sure if that was the menopause or whether it was the depression.

And so somehow I got through uni. And look, I went on and I didn’t go back to the doctor – oh, I think I might have gone back once more to a doctor about the periods and – that’s right, my counsellor said, or my doctor said, “Well, that’s not right, you should get that checked out, that you’re not having these periods”, so I did. But then again, I’m not sure if I had a test or not, but I’m not sure whether it came back normal. So anyway, then I went overseas to live, so it gets complicated by the fact that I lived overseas. I was over in [overseas city name] and I lived there for four years.

So I would have been 26 I think, or 27. And I had a housemate, and somehow we got on to the topic, and she was talking about how she wondered if she might have difficulty having kids when she went off the pill, and then I mentioned that I don’t really have periods, and she says, “I think you need to get that checked out.” So, I did, I got it checked, I went to a GP, who I think ordered an ultrasound and I got the blood test for the – FSH or whatever it is. And had the ultrasound, then went to see the specialist at the hospital. She was a registrar, so sort of training I guess, and she [laughing] – they didn’t have the ultrasound result, it hadn’t got there. So she left the room and came back and said, “I think you’re menopausal,” and that was it.

I saw a number of GPs for maybe four or five years, between say 35 and 40. And I happened to move from one side of town to the other in that time, so my GP changed, and I didn’t always see the same GP. I was always seeing female GPs, because I wanted to go to GPs who had an interest in women’s health, so that was always whom I saw, but they were differing. And most often they would do blood tests – looking for all sorts of things.

The thing that triggered [my earlier] chronic fatigue was that I had a couple of bouts of glandular fever. That tipped into the chronic fatigue. So, you know, they were rechecking for glandular fever, they were checking for auto-immune stuff. I was checked for cancer at one point. But no one in that five years ever mentioned that I might be experiencing peri-menopause, or an early onset menopause. It was really only after it had gone on for about four years, in which time periods still came, but very erratically. I also had a number of periods that were exceedingly heavy and painful, which were a little frightening [laughter] at the time. And the night sweats sort of continued on and off.

And it was only when I got to about age 39 with a number of blood tests in fairly close succession that one GP noticed that basically my thyroid was completely out, that I was oscillating between hyper and hypo, that – so two suggestions sort of merged at the same time. One was Hashimoto’s, and the other was early menopause. But because I guess both of those things essentially came into play at the same time, and of course my blood test results were constantly all over the shop – sometimes my thyroid would be normal, sometimes my periods would kick back in, it just fluctuated fairly wildly with periods of stability, and – no GP sort of stopped me in my tracks and said “Listen, we should just monitor this constantly for every two months or three months” or whatever it is, for a year or for two years, I would just get these differing results, and the GPs would just be, “Oh, I think it’s this or I think it’s that, or, you should go on thyroxin” or whatever it was.

Yeah, it was really hard; really really hard. Yeah, I remembered I cried a lot. I was just with my mum and she was strong by my side because she saw I wasn’t. [laughing] But I noticed that she was really worried. Yeah, it was a shock. It was really bad to hear that. And in the beginning I didn’t want to believe so we saw other doctors, other opinions and they start just to say, “Yeah, probably this is – the problem is this. We cannot do anything about it.” And I stayed a long time I couldn’t speak about it. I couldn’t see kids and babies around me.

I hated this. If I saw kids store on the shopping or if I saw advertisement with babies I started to cry. So it was really difficult. This thing that society put on our mind that woman are made to be mums, this is terrible because I always was and I am a free person. I like to do stuff to meet people, to see around and travel and do things on my own. But I wanted to be a mum and I wanted to – to have the sensation. And it wasn’t a choice.

Suddenly it’s not a choice if I want to or if I don’t want to. So I think when I realised that it wasn’t a choice it was heavy. It was really heavy. And to go home and tell my dad and he wanted so bad [laughing] grandchildren – I see how sad and disappointed he was. [laughing] So nowadays I can speak about it, but just, I don’t know, one year or two years ago I couldn’t even speak about it without cry. Nowadays I can handle. I can playing with kids. I can make jokes with – and it’s fine. But was many days on the psychologist [laughing] to learn to not focus on it.

I do remember being in my GP’s office when – sitting there just talking about my blood test results and he sort of spun around in his chair and said, “Oh I’m so sorry” and I thought, “Oh my goodness!” and he said, “You’ve been diagnosed with early menopause” and I think he was more shocked than I was, is my experience. I felt, oh okay well that kind of adds up. I mean I couldn’t have a second child. Been having some strange symptoms. Probably very spasmodic periods, things like that.

So for me it probably wasn’t quite as surprising as I think it was for him and I think he was very conscious of how he delivered that to me which in hindsight I think it was nice that he handled it with sensitivity – and I think – that was good, but for me it wasn’t as shocking as it may have been for somebody else. So yeah, so there it was. I had my official sort of diagnosis if you like. For me it started to – well, it allowed me to make sense of things, obviously certain things that I had been experiencing physically and emotionally I suppose.

So there was a bit of sense of relief there and I think for me that was a solid reason why I couldn’t have a second child. So when you have people talking about why not just try and give it another go – well it’s not that easy. There was my answer. So from that point of view it was actually okay – well I can’t and that’s not possible and we’ve done all we can. We’ve exhausted every avenue, if we were to genetically try and conceive another child ourselves.