Early menopause care: Women’s experiences with specialists and other health practitioners

What I do have is a really awesome holistic care team. I’ve now finally got again a good GP, good psychologist and then the usual specialists are involved in me having Turner’s syndrome. So you’ve got gastroenterologist, cardiologist, endocrinologist. I go to an early menopause/Turner’s clinic and I’ve also got, well only till the end of this year, but a mental health nurse at a clinic near home, who’s been awesome.

And then there’s the ones that come and go, so like obviously the gynaecologist that did my laparoscopy. I saw him a few years ago, but now we’re having problems, so I’ve seen him again. And now I’m seeing another one because I have to get a second opinion. So there’s kind of the staple ones and then there’s the ones that come and go.

The other one in the mix is, I have both – someone who’s trained as both a physio and exercise physiologist. I found somewhere that – where they’re – it’s the one person trained as both. I’ve found that that’s really good economically, because instead of needing six appointments a year I can get it down to like two or three a year. Because they assess what I need on the exercise physiology front and set my program, but then they can do the physio side of things as well, all in the one appointment.

Did you also seek any counselling or, around the symptoms that you were experiencing?

Menopause symptoms or…

Yeah.

I’d go to the GP and talk about it a bit. Not any specific counselling though. I mean, I’d talk to my endocrinologist about it quite a bit. She’s been so helpful. She’s amazing. I still see her. I see her every six months. I’m going back to see her again in March I think. She is very understanding and so not dismissive like the male GP and gynaecologist I had. Just so much better, yeah. [laughing] But, yeah, they’re the only people I’ve really spoken to. In terms of, like, no sort of specific counselling with anyone, yeah.

It’s very good, though, that you’ve got better support with your endocrinologist. That’s excellent.

She was really good. Yeah, it was just such a relief to have someone to talk to who believed what I was saying and not just going, “Phff, you’re too young.” [laughing] Yeah.

Were you ever referred to things like menopause clinics or did they talk to you about it or…

No, I never really referred to them. Once I saw the right person; the endocrinologist I think it kind of sorted everything out for me. So I didn’t really feel the need to go to any menopause clinics or whatever, no. That gynaecologist, that male gynaecologist, he was just awful. No bedside manner at all. Just really so dismissive of me. Anything I said, any of the symptoms I described. And when I said, “Look, can I just have a blood test?” “Oh, all right, we’ll do a blood test.” Like, I was just a silly little woman who had this silly notion that I was going through menopause and, “Oh, okay, if it’s just to shut you up.”

That was his whole attitude. And when it came back [laughing] it was exactly like I’d suspected, he didn’t even have the guts to see me again and tell me face to face. He left it to his receptionist to tell me. Appalling; absolutely appalling. … And he was supposed to be this – oh, he was a highly, you know, a highly recommended professional this gynaecologist.

When your doctor told you about his recommendation that you have a hysterectomy he was aware that you were trying to have a baby. So how did he deliver that news and…?

We’d actually been to him prior to that as well, because after the myomectomy – the fibroid removal – the year after, I had – we joked about it at the time – but it ended up bring three years in a row because prior to the fibroid removal I had a laparoscopy, and then that’s when they noticed the fibroid. The year after I was having a few more difficulties, so I had another laparoscopy. At that time he mentioned that, “Yes, you do have a bit more endometriosis, but I don’t think it’s enough to go in and operate.”

And then the year after that I had a third laparoscopy, started joking about my annual laparoscopy, and that was when we had the hysterectomy. But I know that in the second one we also said to him, “Look, obviously we’re having problems,” asked about IVF as well because he’s a big IVF gynaecologist too. He’s involved with [health service] and his comment to us at the time – because my husband and I, we looked into adoption as well, but just starting on the IVF – he said to us with my age, because my husband’s five years younger than me, so his age really was fine, but with my age it was only a 7% chance of success with IVF. So luckily my husband and I were on the same page with that, because I just looked at him and I said, “For that small a percentage, and all the pain with the injections and all of that that we’d have to go through, I don’t want to do it.”

The doctor knew that we were looking to get pregnant, but one of the reasons why I like my gynaecologist, is he’s very black and white, very straight to the point. He will give you all of the options, but he will say, “This is what I recommend, and this is what the issues would be,” and whether you do it or whether you don’t do it.

It worked differently. So we don’t need to see a GP and the GP send us. We go direct to the doctors. And I could notice that the gynaecologists they are not interested in making you feel good. They are interested if you can be a mother so they can deliver the child and receive money for that. But if you cannot have a kid, you are not interesting for them, because they will not have money from you.

So I have the sensation with different gynaecologists and one was sending me for another, who was sending me for another, and I have no idea how much money I spent on everything. Because I’m glad that I had, like, Medicare, so it helped me a lot. But, yeah, until I found someone kind of interest it was when I was almost 27 I think. I found a doctor who have the background of hormonal replacement with endocrinologist. So she could help me with the right dose of hormones.

My oncologist made the diagnosis of early menopause. Yeah. It was you’ll just be going into early menopause and I suppose there wasn’t a lot offered to help with right then and there. And that’s when I have changed a couple of oncologists because I wanted more help in that area and I needed a referral to go and see the menopause clinic.

Can you talk a little bit about going to different oncologists?

Well, I mean, my cancer diagnosis was stage 3C so I was pretty close to being terminal and, at 34 with no family history, it was – and, you know, I was vegan, I was healthy. I was fit and healthy and it just came out of the blue. So I had two great oncologists at the start and then sort of when I was heading towards finishing radiation and that’s kind of like the physical treatment, I started getting sort of put on to different oncologists. And I got a new one and I just didn’t click with her and I just thought it was really important if someone’s not engaged with me telling them my story from the start. Then I just thought how is she going to help me if she’s not really interested, so I actually went through a couple of different ones and I even tried to go to another hospital to be looked after by a different oncologist. But finally I got put on to another one who – she’s been there for a long time and she’s amazing and I’ve been with her ever since. And that’s when I got the help and I got the help with – you know, my osteoporosis is pretty bad so I’m doing things to help with that and, yeah, she referred me to the menopause clinic. And it’s working now and she – I can tell she is looking after me and cares.

I was getting a bit older and thinking, ‘It’s something that I will do but I’m not quite ready yet,’ and it probably took me a few years to decide that I was ready to have the surgery. So in February this year, 2017, I had the hysterectomy and bilateral oophorectomy done at a tertiary centre. And yeah, so I guess prior to that, the way I’d gone around getting to it was through, getting to the surgery was through the gynae-oncology clinic.

And one of the things that was my biggest concern around the surgery was the surgery itself but also the early menopause. And I spoke to the people at the clinic about that and I probably think they weren’t very helpful. But, you know, I’m not sure how much a 60-year-old man can talk to a 40-year-old woman about menopause. He basically asked if I was on the pill and, you know, the treatment is similar to that, you just keeping taking a pill every day. He didn’t really talk to me about what that meant and what the symptoms were or how to manage it or anything like that.

So I, you know, did a bit of Googling and I actually saw a study about menopause. I think it was an ad in the paper and through a different centre, a different tertiary centre, a study running, that was starting up. And so I contacted them and I spoke to a person there and she actually provided me with a heap of information and directed me towards a website as well to have a look at and I probably just spent a bit of time looking through the website and yeah, deciding what I wanted to do.

So I decided that I wanted to have HRT and have that started as soon as I had my surgery. And things I’d read on the website were that, you know, you can start it immediately in hospital. And I guess, you know, I work in the health system, I know that people have post-op appointments and I know that those things happen, you know, four to six, eight weeks later. And I didn’t know what was going to happen so I wasn’t prepared to have four, six, eight weeks of symptoms because it sort of, you know, that’s how they wanted to manage it.

So I was very insistent that I started the HRT in the hospital as soon as I had my surgery. Yeah, that was probably something that the surgical team, you know, weren’t really concerned about or didn’t provide much information about. And I probably think that’s a bit of an area that was lacking, was the amount of information that, yeah, that I got. Which I guess, you know, maybe that’s why I’m interested in participating in things that do help provide information around, yeah, the early menopause and treatment and the best places to get information and so forth.

So we already have a child together. I suffered a horrific delivery with her, and mentally I was very damaged, and physically. So I had a lot of trauma internally from the delivery and I suffered post-traumatic stress disorder, postnatal depression, anxiety, and I never got over that delivery and could never imagine having another child. So for me, it was never going to be an option.

When I met my gynaecologist at my first appointment for the cysts, which we’d just thought were cysts at the first appointment back in, probably November 05, 2015. He asked me about the delivery and asked why we hadn’t had any more babies, and I explained the whole thing to him, and he was very upset for me, at what I’d gone through. At that appointment, he assured me that if I wanted another child, I would be well taken care for and he would do everything in his power to make sure that didn’t happen again, what I went through.

After that appointment I thought ‘Wow, I could have another baby.’ So we got rid of the cysts and decided that we would have another baby with this doctor helping us. So I guess it’s all been a combined delivery, or journey I should say, of the menopause, IVF, it’s all connected. So after my doctor said, “You’d still be a good candidate,” we put our name down on their donor registry. Unfortunately there’s not a lot of people that donate their eggs, because the criteria is very strict I guess.

So not a lot of people meet the criteria. We put our name down and were told that there’d be about a two year wait. In the meantime, we had some people offer to be our egg donor, or egg donors if need be, and one of the people that offered was just a perfect fit. So we accepted her offer, and we have gone down the donor egg path with her, and she has had her eggs collected. And I have had a transfer, but unfortunately it ended in a miscarriage last week but I’m very hopeful. We’ve still got three beautiful embryos waiting. So yeah.

So, you said that ZOLADEX [goserelin] gives you hot flushes. Was there any kind of discussion around what you could take to alleviate that at all or what you could do, with your health professional?

I don’t remember that. I think by the time I was taken off tamoxifen and put on it, I remember thinking, ‘I hate needles, this is going to be painful’, and they said, ‘This is going to bring on menopause.’ Unlike tamoxifen which is just going to sort of cap some bits and pieces, but this is going to stop hormone release and all the rest. And I think I was so reticent about the whole thing that they spent their efforts saying, “This is important. This is about saving your life.”

Like, the endocrinologist said, “I will not be your endocrinologist doctor in this pool if you don’t go with my advice.” [laughing] I said, “Well I am going to.” So I did and that was it. But no, I don’t remember anyone suggesting anything but that. I think to some extent, that’s also the difference of like doctors and – what do you call it? Like, community practice nurses or other people. Like, the things about lived experience, other things that you’re going to get from a smaller centre of maybe a GP. The endocrinologist writes you a prescription because you fit the profile and he or she, they know your need. And so, he did what he needed to do for me and I followed that through, but it doesn’t surprise me that he would not have thought to talk through how to manage the symptoms that it brings up.

It also occurs to me that real divide between the endocrinologist and the people who are really thinking about like my safety, like that I’m living more than getting too in-depth in any sort of quality of life. I mean, they do ask how I’m going and stuff and maybe if my answers were different from, “I’m doing well,” then we would go down that route. But it occurs to me, those people who do a fantastic job of health promotion are often actually not doctors, maybe those auxiliary, or whatever you call it, those other care people, I imagine if I wanted more answers or I wanted to talk through things I’d want to talk to them more than I would ask my endocrinologist, other than technical questions.