Emotional impact of early menopause and fertility loss

The fact that I wouldn’t be able to have children was up there with wanting to survive and I thought, “If I don’t – If I can’t have kids, I don’t want to survive. I would actually rather have died from cancer than be alive now dealing with the fact that I’m a woman who feels I was born to have a child and can never have one.” Now I have a psychologist at the hospital and we’ve discussed that. I understand it might sound a bit harsh to people but for me that was my meaning for life and my purpose and goal that I was working towards to. So now we’re now we’re trying to make some different goals. For example, I’m looking at fostering and perhaps surrogacy down the line.

I can’t really tell you why, but just ever since I’ve been young I’ve been passionate about children. I’ve loved being around young children. I became an early childhood specialist so I just love spending time, being a nurturing, you know, nurturing mothering kind of person is my personality. And I was particularly interested in sort of the biology of seeing genetics worked out and, you know, similarities and things so that’s why adoption and things weren’t particularly interesting to me before. So I guess it was just a part of me for a very long time and everyone has things that they think are their goals and their meaning and for me, that was sort of my purpose.

So with cancer and early menopause, it’s a bit of an existential crisis, only because you’re like, “What am I here on earth to do if not to reproduce?” and I’m sure other women hate that sentence. But for me, yeah, to nurture a child and grow another person was pretty cool, a pretty cool plan. But I’m a teacher so I still get to do a lot of nurturing and teaching which is nice. I actually became a teacher when I found out I had polycystic ovarian syndrome very early on because I thought that if I actually couldn’t have kids one day, I’d like to still be in an environment where I get to show that nurturing side of myself. So sadly, that plan has actually worked out well. [laughs]

So the doctor who’d laughed at me, you know, I don’t know how many years earlier, 10 years earlier, was now saying, “I think you’re menopausal.” And I remember that was the first time I’d heard that from a doctor, and I was just shocked, as you can imagine. And I remember my mother and I were just on this holiday thing with my uncle and aunt, and I remember just being in the bedroom with my mother and sobbing, and trying not to cry too loudly.

And that was the first time that that mortality feeling hit me. I mean, really I just thought, ‘Oh my God, there’s going to be no,’ this sounds conceited, but ‘no little me’s.’ And it really hit me. So [slight laugh] I was very upset.

And I know a couple of people who have actually adopted, fostered, then adopted children with disabilities, quite severe disabilities too. So yeah, I think there are other ways of having children. Yeah, so that’s an interesting question. But certainly that initial thought was the genetic – hit me straight away, but it hasn’t hit me so much later. But having said that, I still feel… Well, I’ll say that, you know, you see on TV these, these women or couples who are desperate for kids. I haven’t got that desperation, but I’ve still got that sadness, that the option’s taken away.

When I got my diagnosis, my psychologist said to me, “Kirsty, you don’t realise now, but you’re just going to enjoy being part of the village when it comes to children. Even if you can’t have your own.” And at the time, I was really angry at her for saying that. Because I thought, “You know, I just want my own kids. How dare you tell me that it’s okay to replace your own children with those of the village?” But, they were right, and six years down the track, I have two beautiful nephews who I’m very involved in their lives. I’ve got an amazing godson who I see every fortnight, and around the corner from us are my cousins and their kids who we hang out with all the time.

So actually, you’d argue that it’s been a really amazing thing that I get to hang out with children and help raise them and get to do all the fun things with them, and I get to go home at night and sleep in on a Sunday morning and go on international trips. So, in the end, you know, it’s about reframing the journey that you’re on.

It was a new relationship and it’s complicated in its own right, as all relationships are. But it was a new relationship and we’d only been together probably a year and so for this to happen within the first 12 months was incredibly challenging. And I said to him early on in the piece, you know, “If you want to get out now I totally get it. This is not for the faint-hearted, let alone someone who has only been with someone for a year. So, you know, if you want to exit stage left I would totally understand.” But he stuck by me and I’ve, you know, we’ve struggled, you know, through it.

What about the impact on kind of not being able to have children? How has that impacted you as a couple?

So he’s always wanted children from, you know, as a young person. So he’s had to struggle with the fact that he probably won’t. And that was one of the reasons why I sort of said to him early on, “Go if you – if this isn’t for you – right for you. I completely understand.” And so we’ve talked about it a lot and his number one concern was that I would be okay. That was all that mattered to him. And he was very quick to reinforce the fact that me not being able to have children wasn’t something that would impact his commitment or our relationship. But he just wanted to make sure that I’d be okay.

I just sort of started to quickly feel very fortunate to have the child that we did knowing that there could be no more. It’s not – it wasn’t what I imagined or envisaged, but it was still, you know, we’re very lucky to have her and I think I’ve only realised in recent years just how lucky we are and the fertility specialist saying again those words. “She was a miracle”. And I, at the time I just thought, ‘Oh okay, well you know’, but he really meant she was a miracle [laughs]. You know I was like, “Isn’t every baby a miracle?” But it really was that yeah, she really was and I think now I really know that she was a miracle [laughs] and if we perhaps, perhaps hadn’t even undergone – and the irony for us is that if we hadn’t undergone the IVF we, we wouldn’t have known and if it had been three or six months later perhaps there would have been no child.

And so around the time that you know friends were having second children and things like, was that difficult for you in any way, or are you a kind more…

Yeah I think, I think with a couple of individuals it was and that was because almost all of my friends, circle of friends who had children when I had my daughter went on to have second, or third, second and third, and I do recall particularly for the ones that had them so close to when I had her.

I remember once my friend passing me her second baby and I started crying because I was like you know, and you do feel the emotion of it coming back because it was just that reality – well we had our first ones together and now this could have been you know us having our second and look she was, you know she was great and I just remember that, so I think there were a couple of really poignant times where that stood out for me, but I think it’s not in my nature to have a, a jealous sort of feeling.

I felt happy for them. I just felt sad that it wasn’t me as well. So I think I was, yeah never felt, always felt very happy for them but certainly on those couple occasions particularly when it was friends who were having their, that I had my first and their first with, and I wasn’t going to go on and have that second part of the, you know, the experience. But we’re still friends now obviously and I enjoy spending time with their little ones and it actually it is really nice to do that, even though you know I don’t have mine sitting at the table too. Sort of like it’s nice to, you know, it’s nice to share in that as well and I think good friends understand that. And I think that’s what I really do appreciate about some of my really close friends who you know, they’re wonderful.

Before you’d been thinking about hysterectomies and, you know, IVF and all that sort of thing, like have you ever had a strong sort of feeling that that was something you wanted to do, or you’re more ambivalent and just waited to see what would happen? Like I mean, just having a child one way or another.

I think I’m probably more ambivalent. I’ve always been active in helping with my younger cousins and that kind of thing. I love taking the youngest one to the park. I keep going, “Oh, I’ve got to take the little one to the splash zone at the park near us.” Or she comes over and we do some craft together and things like… I love all that, but you know, at the end of the day I’ve also got chronic health stuff and it’s great to be able to hand them back again [laughs], because there are days when times, even within days, where I’m just not travelling well.

And yeah, even my boyfriend how he’s got his little retired therapy dog, there’s time where I want her to – I just want hugs [laughs] and she doesn’t want hugs because of her allergies and she growls, and there’s been the odd time where I haven’t listened and she’s then gone and snapped at me. So it’s like, yeah, and that’s only a dog. Imagine if it was a kid [laughs]. Yeah. There’s a time where I think we’ve just got to be sensible as well.

So the questions for me moving forward are do I talk to my daughter about having kids and about the potential for – likelihood of early menopause? I mean really, do people really still want to have kids when they’re 40 anyway? She may even choose not to have kids. She may choose to have a life that doesn’t involve family or maybe she chooses to adopt or do something else. I don’t know. Kids are happening later and later and fewer and fewer people are having kids, you know, and certainly in the sorts of people that I socialise with and work with. And maybe work takes over for some of them and yeah, and so I wonder how they feel about going through [coughs] menopause and never having that chance to have children at all.

We have money, we have lots more options these days for our lives. We don’t just have children to provide for us in old age any more. So we have a lot more choice and maybe she will choose not to have – yeah, maybe she’ll choose not to have children. Who knows? It’s funny because I want to be open with her and I want her to know that early menopause is a possibility for her but, at the same time, I don’t want this doom and gloom happening when she’s 13.

She’s got a lot of life to live before she does that, so what’s the appropriate time for me? Is it when she brings a boyfriend home? [laughter]? Is it when she has a serious boyfriend? Is it when she gets married? Like, you know, I’m going to turn into that granny that says, “Well hurry up because it’ll stop soon,” and looking at my watch, you know. “You’ve been married for a month. Are you pregnant yet?” [Laughter]. Just I don’t want to turn into that kind of mother or mother-in-law but, at the same time, I want to be saying “You don’t have the 15 or so years that people might think they have.”

A while ago I was part of a group that was reviewing a website on fertility preservation. … And that website was really all about fertility preservation, you know, what are the options if you wanted to have a baby before [cancer treatment], during, after and things like that. And then I said that, you know, how do we define fertility preservation? Like are we really talking about fertility only in terms of fertility in a context of having children? Because now that I’ve gone through what I’ve gone through, I see fertility also in the context of, ‘I don’t want children, but it doesn’t mean that I want to have the whole menopause.’ I want to know fertility preservation in the context of what can I do to not have you know. Because I see the two closely linked when, you know, you’re sort of past that fertility age is when menopause hits and so we were quite clear and then we just put in some bits [for if] you weren’t wanting to talk about having children, but you wanted to talk about fertility as a whole and what the implications of losing fertility. … So I guess I now view fertility preservation not just about child bearing capacity, but as in my normal ovarian function.

Obviously there was a struggle with fertility, you know, for a couple of years until diagnosis, and certainly through that time there were all sorts of suggestions about ways that I could have children, yep, all sorts of suggestions, yeah [laughing].

How did you take the advice?

I knew that it was well-meaning, you know, and sometimes I was up for having that conversation and sometimes not. It did become sort of wearing as it went along, because I think – I mean, I don’t want to speak for anybody else – but I wonder if it’s a common experience for women who in some way are struggling with a declining fertility, whether they have a diagnosis or not, one knows that there is some sort of issue there. And in that time, of course there is, I think, a lot of fear and anxiety for most women that maybe this is something that’s not going to happen. And that brings up a whole lot of emotions and shifts in perspective that one has to make about one’s life and one’s future.

So you know, there’s a lot going on for women in that time. And you know, it’s like when you talk about a problem and someone throws a whole lot of fix-it solutions at you, it’s not necessarily what you need. Sometimes you just need to talk it out and have someone just sit with. Yeah, I probably didn’t experience a whole lot of people being able to just sit with, yeah, people wanted to fix things for me. [But] It was very well meaning, and I get that.

When you get questions from strangers, or you know, people that you’ve just met in social situations about whether or not you have children, how does that go?

I usually do say, “Oh no, we weren’t able to have children but we’ve got two adorable fur babies.” Because I know that some people – when I used to say, “Oh no, we don’t have kids,” “Oh, oh, why not?” you’d get. So now I go, “We weren’t able to have kids, but we’ve got two fur babies,” because I know that as soon as you say you’re not able to have kids, people kind of go, oh, do I back off on this, and so I throw something else into it to kind of get over the awkwardness.

But it’s quite funny how it’s just such an automatic thing for people to say, “Oh, and do you have kids?” or “What about your kids?” or something like that, if they’re talking about children in a conversation. So I have noticed, very rarely, but I have noticed in some general social things, which will often be with people that aren’t friends, but either work things or something like that, that when you say you don’t have kids they’re like, “Oh,” and I don’t know if it’s because they feel that they won’t have anything in common with you or not, but they’ll often move away from the conversation to another group that they may feel they have more commonality with. Which is sometimes frustrating, because you kind of think, you know, kids aren’t the only conversation that we could possibly be having, but yeah, so that’s kind of where that is.

I know that realistically I probably wouldn’t want to carry children physically myself because that risk is just too much. There’s no point in having a child here if I’m not here, but it’s something that, you know, my husband, especially my husband, wanted. But for me, like, I would dearly love to even adopt a child if I had to, otherwise it would be using a surrogate, which is pretty hard in Australia unless you know someone, you know a family member that you could use, you know, going elsewhere, of America or other countries, it’s very expensive. And having gone through cancer with not being able to work much for a few years, it’s just we just can’t afford it, but it’s something that obviously I’d really love to do and ultimately would love to have one of my own but, like I said, there’s no point having a child of my own if if I can’t be here to raise it.

Now I’ve had my children. When I had my ovaries and fallopians out, my husband had already had the snip. So it didn’t change – it wasn’t an effective part of my choice matrix I guess you could say. I didn’t have to worry about whether or not I’d have kids when I chose to have the ovaries out. For me it was purely medical and survive – increasing my odds for survivability. Because I’d taken lots of different treatments and all of them had contributed to reducing the risk of recurrence.

And for me that was the most critical thing, because once it comes back that’s like, ‘See you later’, it’s just a matter of countdown time. This way I don’t have that looming over my shoulder. I’m five years cancer free and all I have are just, you know, slight old lady symptoms, but it doesn’t change my life that much. It slowed me down a lot and I’m learning to live with myself as a slowed down person. But honestly, I’m really happy with the choice to have my ovaries and fallopians out, because I may not have been alive today.