Age at interview: 31
Infertility diagnosis: Yes
Contributing factors to fertility problems: Unexplained infertility, possibly related to endometriosis
Age at diagnosis: 26
Fertility treatments: Ovulation induction, IVF, IVF add-ons (prednisolone and enoxaparin sodium)1
Background: Jacinta works part-time as a health promotion officer. She lives with her husband and their toddler in a regional town and is expecting her second child. Jacinta is from an Anglo-Australian background.
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Trying to conceive and first seeking help
So I guess it started very early so as a teenager I always had extremely painful periods, very heavy periods and saw lots of GPs about it and was put on various pills to just deal with those symptoms. Then in 2014 I got married and my husband and I decided that we would start trying for a baby straight away and after about 12 months there was still nothing happening. By this point my periods were extremely painful so I was taking days off work every month because of dealing with the pain. I'd gone off contraception obviously by that point so I wasn't managing it through the pill or anything.
So one day I went to a GP because I needed a certificate for work and it was probably the first time that I mentioned to a health professional that I was a bit nervous about, ‘Oh I've been having these really heavy, painful periods and I'm not getting pregnant and it's been over 12 months’. I was only 25 at the time. He was extremely dismissive. It was actually a really awful experience. So the doctor just told me to try PANADOL [paracetamol] and a heat pack and told me not to take any NUROFEN [ibuprofen] because if I did that and I managed to get pregnant I could damage the baby's heart. Then basically opened the door and sent me on my way.
I got into the car afterwards and I just burst into tears because I thought, ‘Far out. PANADOL and a heat pack. Are you kidding me? I'm taking days off work. Do you really think that I'm not doing all of this stuff already?’ So that was pretty devastating. Then the next month again a painful period, PANADOL and a heat pack didn't work surprisingly and I went to a different GP. So I went to a female GP this time and she was absolutely incredible and straight away she said to me, "I think you might - I don't know a huge amount about this but it sounds like endometriosis to me and I want to get you checked out immediately."
Beginning fertility testing and being diagnosed with endometriosis
So she referred me onto a wonderful obstetrician-gynaecologist here in [regional town name] and she was brilliant. She was the first kind of professional I sat down in front of and she just said to me - I was probably 25 and a half by this stage - 26 perhaps. She said, "You're not getting pregnant. That absolutely sucks," and I was like, ‘You know what, it actually really does suck,’ and it was just so validating to hear that from a specialist to acknowledge that what I was going through was really a terrible time and for someone so young.
So she was amazing. She immediately booked me in for a laparoscopy just to investigate and see if there was any endo there and I got into that in about five weeks or something afterwards. It was a really quick process which was amazing. So she found a little bit of endo, not too much that she could see that it would cause any hindrance to getting pregnant. So, yes, did a laparoscopy. I think she did a hysteroscopy, flushed the tubes, did all of that kind of stuff that they would do in those initial investigations. Then we tried for a little bit longer just on my own and nothing was working still.
Trying ovulation induction
So we started to move on to using CLOMID [clomiphene citrate] through ovulation induction and because we were so young and we were still very much like in our minds we were going to get pregnant so we couldn't believe that we were even doing any fertility treatment. So for us there was no discussion at that point about IVF. It felt like that was so far away from where we were at mentally and in our relationship and we just thought, ‘This is totally not - we're not going to need this at all.’ So we did the CLOMID for a few months. She was really generous in letting us go at our own pace and continue using the CLOMID for probably way more months than what we should have I guess.
But we just weren't ready to move forward with any kind of further treatment. The CLOMID wasn't working so we then moved to Letrozole and tried that for maybe five or six cycles so probably did a good 12 months or more of ovulation induction. It was really frustrating. I was producing really great eggs each month when we were tracking ovulation. Everything seemed to be working perfectly. Just nothing was sticking. We just weren't having any luck.
Deciding to try IVF
So finally in I think about July 2017 we decided to get the referral to try IVF. We kind of thought we had exhausted all options and living regionally it's not as easy to access things like IUI so we couldn't quite move to that as an intermediate step. It was kind of all or nothing.
So we got a referral to a clinic which is only two hours from [regional town name] but they actually run a satellite clinic in [regional town name] and it was just incredible. So we were supported. The nurses would come down from this other clinic, provide us with all of our medications here. We only ever had to travel a handful of times for the actual procedures which was just amazing.
First egg collection and a chemical pregnancy
So we started IVF in January 2018. We had an egg retrieval in January and we got four embryos and the first embryo I did as a fresh transfer but it ended up being a chemical pregnancy so I kind of lost the baby before I even tested positive.
But then did test positive and then kind of had to watch my body miscarry over the next few days so that was quite devastating because you get so far and you get to IVF and you think that it's just going to work even though you know the stats say it probably will take a few goes, it was pretty devastating to have that. So that was my first ever positive test in years of trying for a baby. So we proceeded to use the remaining three embryos as frozen transfers and we just had no luck. I think the second transfer probably hit us for six the most because we thought, ‘The first one worked, of course this one's going to work. It's going to stick,’ and it just didn't and you just get that phone call from the clinic to say, “Sorry it's negative.” It's just devastating.
So we used up all of those embryos and then we decided - we actually thought we might have a little bit of a break because it's really expensive and we were building a house at the time. We felt like we were - we'd been through a lot. It was a lot to keep going. But we had a really great chat with the IVF nurse and she encouraged us to kind of keep pushing on and then came up with a payment plan so that there was no - we didn't have to pay the $10,000 upfront. They were really good about supporting us. I think they just really didn't want us to get into that really defeated mindset of feeling like there was nowhere else to go.
Second egg collection and a successful pregnancy
So we did another egg retrieval in the August and we ended up with three embryos. I got a little bit hyperstimulated from that cycle so we ended up waiting until the October to do the frozen transfer. We did an immune suppression cycle so I was taking CLEXANE [enoxaparin sodium] every day to thin my blood and also prednisolone to suppress any immune response2 and then came the day to get the pregnancy test - the blood test done.
I took the day off work. I'd learnt from many other cycles to just look after myself on those days because I know it can be really tough. I sat on the couch for the entire day. I didn't move. I was just waiting for that phone call. My husband was on night shift so he was asleep at the time and all day I waited. I read an entire novel and then at three o'clock I woke my husband up and I said, "You just have to call them. I can't possibly - I just don't want to hear the bad news again." It was positive and we just couldn't believe it. I heard him screaming from the bedroom because he was just so excited. We just could not believe that after all this time we actually had a positive.
Everything just went on perfectly. I continued taking the prednisolone and the CLEXANE [enoxaparin sodium] until I was 12 weeks and then we delivered a healthy baby the following July so we had a daughter then. So that was just amazing and we just - every day we're just so grateful that we have our little girl. Sometimes we just look at her and think for so many years we just thought this would never ever, ever happen, so amazing.
Deciding to try for a second child, becoming pregnant without IVF and having a late-term miscarriage
Then fast forward I guess 10 months from when she was born and we started thinking about having baby number two thinking it was - we knew we were going to face IVF again and we had two embryos left in the freezer so we wanted to start going with that thinking, ‘Well it took us five cycles to have our daughter. We'll probably be looking at possibly another egg retrieval. We don't really want to have our children that close together but we may as well get started.’
So I picked up all my IVF medication and it was a Friday afternoon. I rang the nurse and said, "I'm pretty sure my period's due tomorrow so just letting you know I'll be starting medication on Sunday. We'll be getting ready for that frozen transfer." Then I had a funny feeling and then on the Sunday I took a pregnancy test and it was positive and I absolutely could not believe it because here we are - we had never apart from those two times with IVF seen a positive test ever.
Somehow second try we managed to get pregnant naturally which was just incredible. Everything seemed really perfect with that pregnancy until I got to 15 weeks and I started to have a little bit of bleeding. Then sadly at 16 weeks I had a spontaneous miscarriage at home so I had about 10 minutes of cramping and I kind of said to my - I'd been at the hospital a couple of days prior with the bleeding and they couldn't find a reason. Bub seemed really healthy and happy. I'd been back on that day because again the bleeding was still happening and we saw baby on ultrasound and everything was completely fine apart from this little bit of bleeding.
They thought perhaps it was an ectropion cervix and that's why I was having this bleeding and then, yes, that night - I was discharged from hospital about two o'clock and then that night at 8.00pm I lost him. So that was just such a huge, huge shock for us and, yes, just couldn't believe that this was really - for once I just felt like everything was finally going right for us and then to lose a baby with a late term miscarriage was really, really devastating.
Being diagnosed with an AVM
Then the story just keeps continuing because a couple of weeks after I had the miscarriage I had some fairly significant abdo pain. So I went to my GP - and this was in the middle of the lockdown as well because of course we're going through COVID. So we lost the baby right during the lockdown so we couldn't have any visitors or anything like that. We kind of had to grieve on our own.
So I was having some abdo pain. Went to my GP and she sent me for a referral to get an ultrasound and they took one look here and thought what I had was an AVM [arteriovenous malformation], so a tangle of veins coming off the uterine artery that shouldn't be there and malformation of these blood vessels.
So I went sent up to the [metropolitan hospital name] for a tertiary examination and came back that we thought it was just some retained placenta so I had a D&C here in [regional town name] that week. Then I waited about six weeks and got my next period and probably the first four or five days of my period were really fairly normal, not anywhere near as heavy as what I was used to pre-pregnancies or anything like that. Then I think it was day five I started having humongous clots so kind of like clots the size of your hand over and over a couple of hours at a time and then it would slow down.
I thought, ‘Oh I don't know. I haven't had a miscarriage before.’ This was my first proper period post-D&C. Perhaps this was just heavy period on top of a miscarriage period. I don't know. So I kind of left it. It was a Friday afternoon the first day that it started happening so I left it until the Sunday and it happened again on the Saturday. I had a few hours to the point where I'd go to the loo and I was using a menstrual cup for the first time which was quite interesting because I could actually see how much blood I was losing. I'd go to the loo, change the cup and by the time I'd walk back to my kitchen it was overflowing.
So I was losing fairly significant amounts of blood. So that happened for sort of two afternoons in a row and then by the third day on the Sunday I thought, ‘Oh I'm just going to go and see the GP.’ I was in no pain. Everything felt really normal apart from – I wasn't dizzy, there was nothing happening apart from just these huge clots that I was losing and so I went to the GP and I was explaining to her what was happening and I felt really fine and everything. She just looked at me and I said, "Is this normal for after a miscarriage?" and she just looked at me: "No. This is not normal at all."
Anyway so I got a pretty prompt referral back to my gyno again and back to the women's clinic and I was sent for another ultrasound. Yes. They confirmed this time definitely an AVM. So I had to have an MRI here in [regional town name] and that confirmed without a doubt that it was an AVM.
Transfer to a metropolitan tertiary hospital for emergency surgery
So things kicked into gear pretty quickly. That was Friday afternoon by the time I got the confirmation and by Monday morning I was down at the [metropolitan hospital name] for embolization. I hadn't been bleeding in that time. It had all kind of resolved.
But I knew it was a bit scary because it was basically a haemorrhage risk so I felt quite nervous because it felt like at any time I could have this haemorrhage and it could be catastrophic. Given I lived in [regional town name] the treatment options would have been pretty narrow so I could have ended up with a hysterectomy if things had gone really badly just because of where we live regionally. So that was pretty devastating, thinking, ‘Far out, our life was going perfectly and we had this natural pregnancy and now I might be staring down not ever having children again’.
So it was all fine. I got to [metropolitan hospital name] and I walked in the door, got to the screening desk for COVID and I just lost an enormous clot. So I kind of immediately started haemorrhaging and just had to go up to the clinic and kind of fast forward what was going to happen that day anyway. I ended up - so I arrived there I think at 10 o'clock in the morning and I was having the surgery by 1.30 in the afternoon. So had the embolization done. It was a bit nerve-wracking because I didn't know - they're extremely rare. So I didn't know what they would do when they got in there whether they would - how much they would have to embolize.
There is a risk that I would lose blood flow to my ovaries and therefore lose future fertility. But luckily everything went okay. I think even the head of radiology was quite skeptical at that point thinking. ‘This is not an AVM. We never see actual AVMs’. I think the first image flashed up on the screen and he just said, "Yes, that's an AVM." They couldn't believe it. I think they've seen three of these in 45 years at those [city name] hospitals so just crazy that that even happened. So that all went well and my recovery was really fine and that. Then I was told to definitely hold off on getting pregnant because they needed to see a month's follow-up.
I needed to have a normal period and do an MRI follow-up and they said, "If you get pregnant and there is still remains of an AVM it could cause a fatal haemorrhage postpartum." [laughter] So that was pretty scary as well. I definitely did not try and get pregnant that month.
Becoming pregnant ‘naturally’ a second time
Then we got the all-clear, everything was fine, AVM completely resolved and incredibly I got pregnant again the next month. So I'm currently 14 weeks pregnant. I had a bit of a scare at six weeks with some bleeding. I think it was just a little hematoma that's resolved. But everything's looking okay. We're having - decided to go private antenatal care which is a new model of care here in [regional town name].
My obs/gyno is just incredible so I'm seeing her fortnightly. We're doing scans every fortnight. She said come in whenever you want and we'll do a heartbeat check, we'll do everything. So they're just being so incredibly supportive of me during this pregnancy. So incredibly I'm actually due on the day that I lost the baby last year so it's very bittersweet. I feel like this is - I don't know - a sign from the universe or something that this baby is meant to be in our family but, yes, it's been a journey. It's been pretty wild.
I think things seem so normal now and this pregnancy's going okay. It's really, ‘Did that all happen?’ I just think, ‘Far out! That was a lot.’
Find out more about Jacinta's experiences in the following short films:
Contributing Factors to Fertility Problems
Experiences of Fertility Treatment
Infertility and Fertility Treatment: Seeking Information and Support
Experiences of Conception, Pregnancy and Childbirth
Other Paths to Parenthood: Adoption and Foster Care
Infertility, Fertility Treatment, and Partner Relationships
Advice for others Experiencing Infertility and/or Fertility Treatment
Advice for Family and Friends of Someone Experiencing Infertility and Fertility Treatment
Advice for Health Practitioners and Health Services
1 IVF add-ons refer to additional treatments which lack evidence of effectiveness. To learn more please visit https://www.hfea.gov.uk/treatments/the reatment-add-ons
2 There is currently no evidence for immunological tests and treatments for infertility. To learn more please visit Immunological tests and treatments for fertility | Human Fertilisation and Embryology Authority (hfea.gov.uk)