Age at interview: 42
Infertility diagnosis: Yes
Contributing factors to fertility problems: endometriosis, ovarian cancer, cancer treatment
Age at diagnosis: 37
Fertility treatments: IUI, IVF
Background: Claire works full-time as a community development worker. She lives with her partner and 5-month-old baby in a metropolitan city and is from a white Australian background.
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Trying to conceive and first seeking help
So I suppose when I first realised that there was a problem after we'd been trying to sort of fall pregnant after about 12 months. Actually maybe it was a bit less than that; maybe it was around eight months. At that point I didn't really know what to do. I asked a friend who they were going to and then they said, "Oh, I'm seeing this person, this woman, and she's really great. So maybe you should go - start there". So then I went to my GP and got a referral to her and just found her manner a bit abrasive. Being new to it I didn't really know what was going on. So at that point that sort of specialist said, "Let's run some tests and we'll see what's wrong".
At that point they ran tests with my partner as well as myself and didn't really find anything that they thought would be causing any problems. I later down the track found out that I had sort of quite severe endometriosis but at the beginning that was never discovered. I suppose at that point, too, I was starting to read lots of literature and everything as well and most of the information that you get from IVF specialists is, well, we start off by doing tests, then we find out what the problem is and then we treat it. Then hopefully you fall pregnant.
But, you know, so I kind of always anticipated that there would be some sort of solution that would get solved, which it took five years for that sort of - that solution to kind of, to come to fruition I suppose. So it was a really long and drawn out process where each appointment I kind of, always expected there to be some sort of answer; "Okay, so this is our next step and this is the solution that we're going to go to". But it didn't work out like that.
So after I'd had that appointment with that IVF specialist. We ran the tests and then got the results and sort of nothing came back sort of conclusive of there being sort of any problems with myself or with my partner. Just her manner…I didn't like it. I just felt really like she wasn't giving me the information that I needed to be able to make the next decision.
Changing fertility specialists, trying IUI and IVF
So then I was sort of asking around to more friends. I went back to my GP and asked for a different referral.
So we went to this - this doctor out in the outer suburbs of [city name] and he did run some further tests. Again didn't find anything conclusive so just - at that point I had a diagnosis of unexplained sort of infertility. We - he did some IUIs. So we did four different IUIs.
So that's where they would take my partner's sperm, run it through a spinning machine and then would insert it into me. So none of those were successful and after that point we'd decided to do two IFV cycles in one calendar year because it's a little bit cheaper if you reach a certain limit with Medicare.
Surgery to remove fallopian tubes and finding out about ovarian cancer
After that wasn't successful he suggested that something might have been having - something from my tubes might have been going into my uterus, which is sort of - was the - kind of causing the problems. So then he said, “Perhaps we could have a look at those tubes”. He suggested that we change providers so that we could move into the public health system to be able to save us some money. So we did - we did that. We went in and they removed my tubes. So this was probably about two years ago or two and a half years ago.
So they removed my tubes and then they also removed a cyst at the same time. At the time the doctor said, “We don't think that there's anything wrong with this, but we just took it out just in case”. But they tested it and called me back a week later and said, "Oh, we need you to come in because it's ovarian cancer". We just – the shock, like, we just had no idea. I didn't have any symptoms and I suppose that's why ovarian cancer's such a sort of high-risk cancer. Because there - it's very hard to, like, apparently, I mean I'm not a doctor but from my understanding that – there's so many symptoms of what ovarian cancer might cause could be any other thing.
It could be period pain. It could be, you know, it could be linked to many other things that happen, you know, in women's bodies. So it just wasn't easy for me to tell that I had it. I didn't know that I had it at all. So in that sense we were really lucky that we were doing IVF because if we weren't it wouldn't have been found and then things would have been totally different further down the track.
Removal of ovaries and preparing for more IVF
After that I had two surgeries to remove my ovaries; both ovaries. The cancer was just on the right ovary but they were just really worried about the aggressive nature of the cancer and wanting to make sure that as much of it was cleared out as possible. So they took two out, but then I was still getting periods after the first surgery. So then they realised that they mustn't have actually got all of the - the ovary tissue. So then they went back in again to get more - the rest of it. So the second - after the second surgery that was successful and then I didn't have any periods anymore after that. So fortunately in the two IVF cycles that we done before I was diagnosed we'd got four embryos in one and five embryos in another.
So then we were really lucky and we had nine embryos before – because they weren't going to let me try and have another cycle or anything like that. After they told me that I had cancer I was in surgery two weeks later, it was a really, really fast process. So then after that I had to be on some medication for quite some time. I didn't have to - it was a Stage One cancer, so I was really lucky in that sense. I didn't have to go through chemotherapy or radiation or anything like that. I just had to be on sort of a very strong dose of progesterone for quite some time.
Because it's an estrogen receptive cancer, so they just need to sort of push out all of the estrogen, you know. I think if I hadn't - if I had have completed my family they just would have done a full hysterectomy at that point. But because I still wanted to try and have children they sort of have given me a bit of leeway in that sense too.
So then post that I was - the oncology department referred me back to the IVF Department; to Reproductive Services. Reproductive Services then said, "You're actually a little bit overweight, [participant name], so you need to lose weight". So at that point I was just thinking, ‘I'll be able to get straight back into it’, you know, and as I said before, there's always - always some sort of roadblock, that there's no, you know, it's - you've got to do something else before this happens. Anyway…So then I went on a pretty strong diet for probably about four months or so. I've never dieted like that before [laughing]. So I did that and got down to the weight that they wanted me to.
Conceiving through IVF
Then we had one transfer, which was unsuccessful and then went back for the second transfer and that was successful. So at that point I was still - so I'd reduced my PROVERA [Medroxyprogesterone acetate]; the drug that I was on, the high progesterone drug. But I was on lots of - I was on daily injections. I was taking pessaries. Taking drugs that would help do what my ovaries would usually do. But because I didn't have any, you know, it was, yeah, so I would have - I was on a lot of medication for that. So then at the two weeks mark you get the tick to say, yes, this is a successful pregnancy and then they scan you at six weeks. So then at the six weeks I'd had some spotting and things like that and I was, like, "This hasn't worked. I can tell that it hasn't worked". But, they scanned it and there was a really strong little heartbeat there.
That was just unbelievable. It was really - yeah, [laughing] it was - it was just - it was a really great feeling. You know, we knew that we had a long road to go, but having that heartbeat there was really great. Because I think with our other pregnancy where we lost it there was always - the heartbeat wasn't as strong, you know. So, yeah, this first indication that things were going well was really great. Yeah, and that ended up - my son was born in January this year so, yeah, that was - we call him our little miracle baby because there's - there's - the odds were against him, yeah, coming - coming [laughing] to join our family. So, yeah, that was - that was really nice, yeah.
Interviewer: Looking towards the future, like, how do you sort of see things from here in terms of, I guess, your health, your fertility, your family, going forward?
Claire: Well, I suppose it's the first time in - in, yeah, six years that I haven't been on some sort of medication. So I feel quite healthy in that sense. I will have to go back on some more quite soon which is a bit of a shame I suppose until we either decide that we're going to have another baby or if - because the oncology team want to give me a full hysterectomy. So I suppose that's, you know, so I feel a bit of pressure in a sense because there's some decisions to be made around that, and the fact that I'm now 42 turning 43 in the next few months is - there's not a lot of time left.
While some women might be able to have, you know, IVF at 45, 46, if I want that then I'm going to have to be on medication for all of that time as well. So I don't really want that. So I do feel like there's a lot of pressure on me still to make a decision around a baby number two or not. You know, and I feel so grateful that I have my little man, I just look at him and just feel such a sense of gratitude. He's healthy and well and happy and I just think of all of the women that have missed out on that joy and love that I'm feeling now.
That kind of breaks my heart. I feel really content in a sense that part of me doesn't want to have another kid in case something upsets that. We know through our experience with IVF that it doesn't come without any heartache. So me experiencing further heartache would take away from my son. So I don't know if I would want to still continue to go through that or not. Yeah.
Find out more about Claire’s experiences in the following short films:
Trying to Conceive and First Seeking Help
Infertility and Fertility Treatment: Seeking Information and Support
Navigating Infertility and Fertility Treatment: Relationships with Family, Friends and Peers
Thoughts and Feelings about Infertility and Fertility Treatment
Advice for Health Practitioners and Health Services