Age at interview: 45
Infertility diagnosis: Yes
Contributing factors to fertility problems: unexplained infertility, Asherman Syndrome, subseptate uterus, endometriosis, age
Age at diagnosis: 35
Fertility treatments: IVF
Background: Hannah works full-time as a teacher, lives with her husband in the Middle East, and is white Australian.
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Trying to conceive and first seeking help
So, my husband and I have been married for 14 years. We pretty - like, one or two years after we got married, we started trying to have children. Then, it obviously wasn’t working out successfully, falling pregnant, so I worked up enough courage – I kept putting it off, but I finally worked up enough courage to go and see my GP, and at that point – she was lovely, but she said, “Oh, are you trying, are you really trying? Go away for six months and come back.” So, by that point, that was three years into trying, even though I don’t like using the word ‘trying’, but there’s nothing else to really say. And you know, the system in Australia, you need the GP referral for the next step, to get to a specialist. So, we went away, came back to her, and that wasted a lot of time – time was ticking, at that point. I got married at 31, so at that point, I was, like, 34, so that was crucial years, in my opinion, in hindsight, looking back.
Just as a side note, I think it would be really good to educate women [laughter] that the clock is against you and all of that, but that’s sort of a whole other issue. And also, if you think something’s not right, then just keep pushing, go to another GP, don’t sit back and relax in this area, this field.
So, went back to the GP, and then, by the time you get the referral, you’ve got to book in, and then that specialist is booked out for a few months, and then it’s Christmas, and then they’re off on holidays, so there’s more time ticking.
Conceiving ‘naturally’ then miscarrying
So, I got the referral, that was in the second half of 2010. Then, the next thing that happened was we went for the initial interview with the – or appointment, with the fertility specialist. He sent us off for tests, that was all great, but then, when we were supposed to go back to him for the follow-up, to talk about the tests, or what he’s recommending, then we fell pregnant naturally, for the first time, at age 37, after many years of not being able to fall pregnant. Unfortunately, that ended in a spontaneous miscarriage at nine weeks. But because that was a natural pregnancy, then I had medical practitioners, like my GP and fertility specialist, saying, “Oh, you’ve fallen pregnant naturally, you’ll fall pregnant naturally again.” So, that added more time against the clock, and against me, even though I was there, sitting there thinking, ‘Well, it’s been – yes, one natural pregnancy, that’s great, but it out of four years – it took four years to come to fruition, so, hello. Anyway, I don't want to go through another four years,’ – and obviously I would be older, 37 to 41, trying to fall pregnant naturally again.
Post-operative complications from D&Cs, moving overseas
So, anyway, it’s mixed opinions in this industry. As you know, everyone’s got a different opinion, everyone tells you different things. But unfortunately, with that miscarriage, when I was 37, it wasn’t completed properly at the local hospital, where I was advised to go by my GP, and there was a bit of tissue still left in the uterus, so I had to go back in the next month and have, back-to-back, another D & C [dilation and curettage], at the same hospital. I think that could have been because – it didn’t help the fact, at that point, I had a subseptate uterus, which means that it was a heart-shaped uterus, so the little bit of tissue stuck, which was hard to get to. So, that was a big ordeal, mentally, to have that physical operation, that operation, and physically, it was quite difficult. That led to scarring and adhesions inside the uterus, because there was a lot of – how do you say, like, damage, and it’s quite harsh on that area.
So, then, we were about – so, that was in June of that year, two D&Cs, back to back. Then, we were still looking at seeing a fertility specialist, but we were about to relocate and move to Asia, so we thought there’s not much point if we’re moving overseas. However, we did see an obstetrician-gynaecologist, who did more testing, and he said everything was pretty much ready to go, and referred us to a family planning specialist, or family planning practitioner, after – you know, this was five years of trying now, so I don’t think that was really going to help much.
But the worst thing was that my uterus – so, when I moved to Asia, six months after the two D&Cs, I arrived in Asia and my uterus was stuck together with the scarring, and the internal – the adhesions inside the uterus caused substantial damage, and there’s no way you can fall pregnant when everything is stuck together. And no-one spoke English in this country I was in, in Asia – well, there’s minimal English, and it was hard to find out where to go at that point, where to go for medical assistance.
Being diagnosed with Asherman’s Syndrome, further surgery and starting IVF
It was unfortunate that no ultrasound was performed in Australia, during that six months after those two D&Cs so therefore, it wasn’t picked up, the uterus issue, with the scarring, and I arrived in Asia and had to have a big operation to have that fixed. But after tests in Asia, with the hysteroscopy, it was actually diagnosed as Asherman’s Syndrome, and I had removal of intrauterine adhesions. So, after the adhesions were removed, there was still scarring, and the right-hand side fallopian tube was blocked, and not working properly.
After that, after the adhesions were removed, we had – we started our IVF overseas, because we were living overseas at that point. We had nine cycles altogether, overseas, nine fresh cycles. During that time, one – I think it was the ninth cycle that worked, that had a positive pregnancy test. However, that resulted in a miscarriage at nine weeks, as well. As well, during those nine cycles, there was one natural pregnancy, about a year or two after arriving in Asia, and at that point, I would have been 39. However – so, that was the second natural pregnancy – however, that resulted in us losing the baby at 19 weeks, and the baby had Trisomy 13. Then, we moved into genetic testing, which is not common in Asia, for different reasons, and once again, I think doctors were sort of saying, “Well, you’ve had two natural pregnancies, you’ll fall pregnant again naturally.”
Seeking counselling support from home
What was really helpful was, during that time, I was connecting with support in Australia, with psychologists and counsellors, who are absolute specialists in this field, and have lots of expertise, and I found their names on the Access Australia website, which lists them. If it wasn’t for them, yeah, it would have been even more difficult. So, one counsellor in particular I was having Skype weekly sessions, to support the whole infertility rollercoaster, and she was a wealth of knowledge. She had worked at an IVF clinic in Australia, so this was her area of expertise, and talking to people from your home country, while you’re living overseas, is very helpful. I did get in contact with quite a few fertility specialists while I was living overseas, and you know, they weren’t very – they didn’t want to help me, which is totally fine, because of the time difference, and you know, it’s not ideal, and me not being face-to-face with them, but for the few medical practitioners who did, that was very, very helpful, I really thank them. So, I was having weekly Skype sessions for about two years, that went on, and I just transferred cash, with a receipt, into her bank account. Then, when we did fly back to Australia, my husband and I would meet with her face-to-face, just to touch base, and to see each other in person.
Nine unsuccessful IVF cycles, returning to Australia
What happened next? So, after those nine cycles, I was getting pretty fed up, because material online, reliable material, says after three cycles, if you haven’t had a successful result after three cycles, the percentage that it’s going to work, that IVF is going to be successful, just drops off. But you know, what else was I supposed to do, at that point? I changed IVF doctors in Asia, a couple of times, just for a different opinion, and then we started doing the testing, the genetic testing, before the embryos were transferred, and then we were going for the five-day transfers. But like I said, out of nine cycles, only one cycle was a positive pregnancy test. Then, it was time to move back to Australia, and we came back to Australia for two-and-a-half years, before my husband’s company moved us again, to another part of the world. During that time, I met with new IVF specialists in Australia.
I was 40 – so, 41, we moved back to [city name]. We’d already organised to meet with IVF specialists, and to go through our history, and start cycles in Australia.
I think because I’d had the adhesions removed, quite a number of times in the process, over the years, because each time there was a miscarriage, then I’d have adhesions, and then they’d say, wait until your body heals, and then the body didn’t heal adequately, and there was scarring, so then I had to have the scarring removed again,
But then, the scarring led to the next issue, which was the lining not growing thick enough, and then the embryos can’t implant, and I would never get to more than six millimetres thickness of the lining, which some clinics around the world, if you don’t hit more than six or seven millimetres, they won’t do the transfer, which is totally fine, but I never get to six. Then, if you keep waiting, and having more medication in each cycle, for the lining to get thicker, you’ve missed that window in your cycle, around day 13 to 18 of the transfer. So, you know, it’s a dicey situation.
Further surgery and post-operative complications in Australia
So, when we arrived back in [city name], we wanted to have everything checked out again, internally, for me. So, a doctor at the IVF clinic said, “Not a problem, we will book you in to the theatre, the hospital, we will perform – we will see what’s going on, and I’ll let you know - depending on what I see on the day, I’ll take it from here.” So, he performed a laparoscopy, hysteroscopy, D&C, and removal of adhesions, all at once, within day surgery. The miscarriages with the D&Cs I’d had in Australia previously, I was in overnight, in hospital, so I felt this was a total in and out – I didn’t see him in the operating theatre either, so I was actually sort of joking, and saying, “Oh, were you actually there?” When I came out of the anaesthetic, in the day surgery – well, it was the day patient section of the hospital – I said, “Oh, what went on? Can someone please fill me in?” And they went to phone him on his mobile phone, dashing off for the weekend, and he explained to me what happened, when I was still coming out of the anaesthetic. Then, he recommended to go straight into a cycle of IVF, because of course, we’d already paid for the medication, he ordered that in and we’d paid upfront for that, and that was sitting in the fridge for ages, ready to go.
That was around Christmas time, which makes it very difficult to – another layer of difficulty with IVF cycles, because doctors are away on holidays, and you know, their clinics close down. So, with the public holidays and all of that, it was always difficult, and because I’m a school teacher, trying to get – I am available in school holidays, but the rest of the world sort of isn’t, around Christmas time. So, that was also hard to link up. So, I couldn’t actually get in to see my doctor – I was having a lot of pain – the doctor in Australia, after that D&C, hysteroscopy, that all happened in the one day. I was having pain, lower abdominal pain, for two to three months, and the nurses kept telling me, because there was no appointment available to see him – he came in for half a day here and there, in between holidays – that I was told he’s too busy with other patients, there’s no appointments. The nurses kept telling me to, you know, “Your levels of – your blood tests are showing that you have ovulated, start the cycle,” but I was saying, “Hold on a minute, aren’t we just guessing that? I haven’t had a period, so I’m not back to day one. I could be on any day of the cycle, so isn’t that a bit of guesswork, trying to say start tomorrow? I’m not going to start until it’s definitely day one, so we can all count up, and be on the same page.”
But to cut a long story short, my uterus didn’t heal after that, all of those procedures in [city name], straight after Asia, and I had no period from November to February, and the IVF clinic was refusing to conduct an ultrasound. I said, “I think something’s going wrong, I’m having a lot of pain for three months,” and they said, “Oh, it’s nothing we haven’t seen before, start taking the IVF injections”. So, I had to sort of go back to my GP, behind their back, and say, “Can you refer me to someone, to check this pain situation?” She sent me to a bulk-billing centre, and I was sort of saying, “Well, can you make sure this report doesn’t go to the IVF clinic, because they’ve told me not to come here?” Anyway, so there was pooling of the blood in the uterus, five millimetres, during that time. That was what the pain was – the uterus was – or the cervix area was blocked, and the blood couldn’t come out. That’s why there was no period.
So, then I said, “What should I do?” to my GP. She referred me to a specific doctor, who this is his area of expertise, who was amazing, and he basically performed the same operation again, so I had to pay for all of that again – the laparoscopy, removal of adhesions and cleared up inside the uterus, and he also removed endometriosis, a small part of the endometriosis. That was a repeat operation, of the November operation. When I went back to see him again in a follow-up appointment, and I told him the story of what had happened, and just my history in general, he said, “What you need to do is, you need to go and see this doctor”, who he works in close contact with, another IVF specialist, so I went to his IVF clinic, and he looked at everything, and he said, “Well, you didn’t – your body was trying to have a period, but it couldn’t, that was the issue.” And I said, “Exactly. You know that, I know that, but nobody at the clinic could tell me that. They just said, start taking the injections.”
So, with the new IVF specialist, and the adhesions, laparoscopy specialist working together, one was assisting me with the egg collection and the IVF side of things, and then, the other one was assisting with any pain around the abdomen area, and they would call each other, and send reports, and that was a sigh of relief. It just shows that it takes a village, and you need all of these people involved, including the counsellors, and you know, GP, nurses, husbands, family members, the list goes on, because it’s a lot to be dealing with, especially for the amount of years we’ve been doing it. So, I think that was seven years down the track, so I was ready to start IVF with the new doctor. I, to my knowledge, had everything internally ready to go, although the lining still doesn’t get very thick, because there’s the permanent scarring, but I gave it a go. What else could we do? Stop, or give it a go.
Four more IVF cycles in Australia, still no success
So, we ended up doing four more cycles in Australia, so that – and one cancelled cycle. So, we did 14 cycles of IVF altogether, and unfortunately, there is no – at this point, there has been no successful outcome, no live birth as they say. So, at that point, I would have been…I was in my early 40s, between 41 to 43, doing IVF cycles in Australia, and not getting very many fertilised embryos, or embryos of good quality, to be transferred back, that’s why one cycle was cancelled. So, they were transferring one embryo during that time. The chances of one embryo sticking is not very high, but like I said, we did it anyway, because what are the other alternatives? We’ve got that far.
During that time, I was seeing another counsellor, face-to-face, who was also recommended on the Access website. Fortunately, she was in driving distance, or close proximity, in [city name], but there’s only about five or six people on that website, so personally, I think there’s a huge demand for that area, and there needs to be more support and assistance for ladies and couples all around Australia, going through this.
I hate the words giving up, but it’s basically we haven’t given up, yeah. We are still pursuing other possibilities.
Find out more about Hannah’s experiences in the following short films:
Wanting to Become a Parent
Experiences of Fertility Treatment
Experiences of Health Practitioners and Health Services
Navigating Infertility and Fertility Treatment: Relationships with Family, Friends and Peers
Infertility, Fertility Treatment, and Work
Advice for others Experiencing Infertility and/or Fertility Treatment
Advice for Health Practitioners and Health Services