Early menopause care: Women’s experiences with health services

Did research and ended up coming up with the [women’s health clinic], and of course they have some really great resources and I rang up and got an appointment there. And I saw a doctor who actually took note of my symptoms and, you know, that my grandmother had gone through early menopause and proceeded to do some tests and they found that, yeah, it was quite possible I was going through early menopause.

So they did also, you know, the usual tests, the blood tests, the ultrasounds and bone density and osteoporosis runs in my family as well, so that was kind of the main concern. So I was advised to go on hormone replacement therapy, of which I did try a lot of different types of hormone replacement therapy, from tablets to implants, to creams. I always had quite adverse effects from the medications, severe mood swings, never really regulated periods. So yeah, that was kind of all over the shop.

The HRT, did they give you any explanation for why it was difficult for you to find a formulation or a dose that you didn’t have lots of side-effects from?

No. No. I was – well, from memory, I was just pretty much told, “Well, you know, not all medication suits everybody,” and I did start feeling that, oh maybe I am a hypochondriac, [ laughing]. Not that anybody ever said that, you know. Everybody was pretty good. Well, yeah, [women’s health clinic] was amazing. All the doctors that I ever saw there were very supportive and were really trying to find the best combination of hormone replacement therapy for me, and give me the best quality of life.

It was a fertility specialist that gave me a referral. But living four hours away, that’s an eight hour round-trip plus having to wait to get into a public clinic, there was a fair bit of time in between there and you could go to the clinic and sit and wait for hours. See someone for your five minute spot, get a blood slip, be told to have bloods and come back when they could next see you, which might be in another two months before you can get in. It’s a long time to wait. It’s a big journey to go back again, and be told you know, “The bloods are definitely saying this, but we should do another blood test just to confirm. Come back in two months.” And all the while, you’re just feeling horrible.

Honestly, I found it a really bad experience. I saw several different specialists and, I spoke of things, not just the symptoms, but of things like the weight is just piling on me I just remember it so much, because my mum and I’ve reflected on it. Mum was with me at the time. And she said, “Oh, it’s just a simple case of calories in, calories out.” Like, I was some sort of silly person who couldn’t control what I was eating and then the next time I went there, they suggested, “Well, if you’re menopausal, probably just stick to a 1200 calorie diet for the rest of your life.”

‘So okay. That’s very, very low and restrictive. That’s like a tight kind of diet. Well, I’m a woman in my early 30’s. That’s not something you can stick to.’ And also, just the condescending nature, that I didn’t have a brain to figure out calories and movement, and those sorts of things. It just – and no link to, “It could be to do with your hormones.” It was very frustrating, and feeling like you only got a really short amount of time there. There for five minutes. “Next, please,” you’re in a public clinic. There’s a few doctors working, they pick up the next folder. They don’t know who you are. They don’t know, “Oh, so you’ve had this, have you. Oh, right. Ah, yes. There’s a bit of a level there. Have another blood test come back,” not realising the logistics of all those things. I didn’t find it a positive experience.

And, did they give you any non-drug related advice about managing symptoms, or anything like that?

No. No. There was… It felt like, oh, one, one doctor was probably better than another but it felt like there was little connection, care. There was no list of, “Here’s some websites,” or, “Here’s some reading,” or, any of those sorts of things. I felt very alone. I felt like, if this is a clinic for it, why do I feel like the only young person’s who’s ever been through this, because there doesn’t seem to be any, as I was saying before, any list of, “This is what… This is what usually happens,” or, “This many percent of women suffer this at your age, and we usually go down this line.” I’m very much a person who likes information, and I felt like I just had nothing. I felt like I was the one searching for answers.

And did you go to a menopause clinic at all?

I did go for a session at BreaCan [now Counterpart] where someone came from [women’s health clinic] and she gave a talk on menopause and she did say, you know, for anyone here if you have continued and really bad menopausal symptoms, speak to your nurse co-ordinator and you can get a referral into this menopausal clinic. Because I was so up and down I was like, you know, I couldn’t figure out – and I think even that talk somehow it was tailored on menopause and all, but it was quite generic in that it was really tailored towards, how do you live, how do you survive and I think the big thing for me was, how do I work whilst having menopausal symptoms and that was largely not addressed in that talk.

And I think again, it’s because it’s not the natural life cycle and, you know, I can understand that you, you know, you do a talk and 80% of the crowd is wanting this, you know, that’s what your talk is going to be tailored for. … And I mean, even if you look through like the BCNA, the stories that people tell, a lot of them, I mean, some are probably in their fifties onwards and they really have started to make those lifestyle changes and things like that. There are some younger women I can see. I’ve seen that. But I think, there’s not enough of us. It’s like what, one in eight, versus you know, one in two or three or something, or in the older age group. So there is not enough of us I think to tip it over to kind of say there is a lot of unmet needs at this, you know, for this age bracket.

Maybe I would have kept on with seeing that endocrinologist if I didn’t have to travel for three hours and wait one and a half, two hours, for an appointment for a five minute appointment. And in fact, having said that, you know I mentioned I’ve got an appointment with this psychiatrist in a month. It’s going to be Skype, and I’m thinking, ‘Hallelujah, this should have been happening for so long,’ and it’s the first time I’ve come across that option.

And even with this other condition that I have, I’ve been to [city] to see a dietician, and then the other appointments could have been on the phone, which you need to have that option because it’s a full day. And again, I’m not sure around here what the endocrinologists are like. But all the endocrinologists I’ve been to or specialists have been in – about early menopause – have been in [city].
And again if you’re mucking around with medications, it’s hard to travel all that way and then you maybe have a change in medication, but you have to go back again, and it’s hard enough when you’ve got to go locally and maybe take time off work.

But I’m not sure about the HRT, because I sort of went off it, but I know with the anti-depressants I get reluctant to play around with them, because then I don’t want to be affected badly and not be able to work, and have to take more time off because symptoms are exacerbated. But yeah I do understand now why people in the country have worse health, because travelling and then having five, 10 minutes with a consultant is pretty bad.
And I was shocked the time I found out I had that bleed, and the gynaecologist, the waiting list was three months or something. I thought, ‘God I could be dead by then!’ I just couldn’t believe that. I couldn’t believe it. Anyway, that’s how it is, I guess.

I usually drive because the train’s just too unreliable and you’ve got to get up too early in the morning to get down there for – but, yeah, I’ve got relatives who I can stay overnight with, so that makes it pretty good because, well, driving up and back in one day makes it a big day. And if I stay overnight with relatives, you know, we can have a nice dinner, you know, and I go to my appointment and then I can, you know, go somewhere for lunch and, you know, make a bit of a [laughing], you know, do a bit of shopping, make a bit of a day of it. [laughing]

I had multiple surgeries. So that’s all out of pocket. We have private health insurance, but there’s still the private health insurance premiums, and when you go into hospital, the out of pocket [costs] as well. A lot of tests, whether that be blood tests, ultrasounds, like all of those appointments. Then as I said, I see a psychologist, so her appointments. We did a cycle of IVF, or two cycles, and then a transfer.

Because our donor has no medical issues, they are unable to claim Medicare, so you have to pay the full out of pocket. So for her egg collection, that probably cost us $10,000. And then your medication. So like every month, I’m on hormone replacement, and that’s going to be probably the next 20 years. As I said, we’ve still got some embryos available, but once they’ve gone, if we still decide we want a baby, that’s another possible $10,000 to do another cycle. That’s because I’ve gone through early menopause. Like it’s not because of any other reason, it’s… yeah.

Major strain on the finances.

Yeah, yeah definitely, and how do you save for that? Like you can’t think oh I might get a tumour one day and lose both my ovaries.

Did you investigate the public system at all? Or?

No, but I know – well the research – I have done research, but I didn’t actually go to any appointments. So the research that I did with the IVF is that with a donor cycle you can’t go to bulk billing clinics, they don’t do donor, so it would have to be a private practice.

I was treated at a public hospital, so largely most of everything was taken care of. There was some medication that initially wasn’t taken care of and that was out-of-pocket, but that was fine. I could manage it. Some of the appointments that I had were also as a private patient, some of the diagnostic imaging, things like that. But I mean, I was able to manage all that and at one point the hospital was really good because they were the ones who said I had to go on ovarian suppression treatment and at that time the ovarian suppression was not on the PBS scheme for pre-menopausal women, so the hospital said, “But we did not want to disadvantage you,” so the hospital actually paid for it. So it was pretty incredible. And I said, “No. I’m financially fine. I came to the hospital because I was told that this is the best place to be, you know, that’s what you all specialise in, cancer.” So I said, “And you know, it suits my workplace, you’re [nearby].” So I returned that money through donations. I say, “No, it’s fine. I can manage it.” So that was that.

In terms of other things, I mean, there is that little bit more in that I go more often to some of the Pilates and yoga classes, not just the ones at the gym. So that’s a little bit of out of pocket, but yeah, that’s fine.

And so medication-wise, currently what are you taking?

Currently I’m taking exemestane. … That’s about $39 a month. The goserelin [ZOLADEX] is also about that. Because they are now both on the PBS. The oncologist managed to lobby the government, yeah. … . So that comes up to about $78 a month. That’s all the medication I need to be on, and – yeah. … The EFEXOR [venlafaxine] is also maybe about $30 a month.

I think I’ve just resigned myself to the fact that there’s bugger all they can do. And I tend to get really frustrated with medical professionals especially when I feel like there should be a solution or there could be a solution. And they don’t always offer it [laughing] so I get really disenfranchised.

There’s a lack of service coordination, particularly in rural areas, and I also think that happens in metropolitan areas as well. So it means that the medical professionals that you see tend to be quite fractionalised. There’s no kind of care coordination. There’s no someone that’s looking at you more holistically. So occasionally I might talk to my cardiologist about it. I have three cardiologists – it doesn’t matter what they’re all for.

So I might talk to them, particularly around contra indications; is there anything that would kind of contra indicate, the medications that I’m on, you know; are they contributing to the hot flushes and that sort of stuff. Talk to the breast surgeon about it and that’s probably the only person I do talk to and I see her once a year. Yeah. So that’s it. And then, of course, because I’ve had to go back to the oncologist I spoke to them about it as well. And that’s from a breast cancer perspective as opposed to a kind of general health perspective.

I know that if you go and see a surgeon, they’re going to say you need surgery. So I think probably the person who was the most helpful to me was when I spoke to one of the staff at the [research project] study and they put me onto the Jean Hailes website which, you know, I read through a lot of the things on there and that helped me make decisions and that at the time, you know.

Looking back, yes, if I wasn’t as health-literate as what I am, you know, you should see a GP, you know, it would be great to see a GP to help coordinate all of those things. But again, you know, we’re in a rural area. Sometimes it can take a long time, ages to get an appointment at the GP. It’s not an emergency. It’s just a, you know, ‘I’d like to talk to someone about that.’ So, you know, it’s the cost and time and time away from work when you work full time.

So I didn’t go down that path of going to see that person. But yeah, I can look at different bits of information and decide for myself what I think is valid and what I think I can take with a bit of a grain of salt. I know that people give different advice from the different backgrounds that they come from. And when I got those different pieces of advice, I probably talked it over with friends who are also in health as well, you know, that was probably my sounding board.

I work in the health industry, you know. I know what the surgeons are like. [laughing] They come in, they want to do their surgery and they tell you that everything’s gone okay or not or however that went and, you know, and then they’re done. They’re not, you know, they’re not necessarily concerned about, you know, those ongoing management things. But, you know, someone should be and whether that’s your GP or, you know, whether you go to a, you know, women’s health clinic or a nurse-led sort of type of clinic for those sorts of things. Someone has to help you out, sort of negotiate those things and find the best information and probably for people, it’s their GP.

Did you get conflicting advice from the health professionals?

I don’t think so. With regards to menopause… no. With regards to some other things, yes I did get conflicting advice, but that was because I was offered a drug trial, which was for people with a high chance of recurrence.

Most of the health professionals in this country are damn fine, I have to acknowledge. We have a very, very, very good health care system. Public and private, so yes I’m very happy to live here.