Saturday 19 September 2015

Infertility in Denmark part 1 - what to do

It's been a while since I've written. A long while. But life got in the way, and not 100% in the best way. The post I'm about to write is going to be difficult for me to write and for some perhaps to read, but sadly I think it will come to be relevant to a few fellow non-native Danes living here. It's about the horrible world of infertility, and what you can do if you are living in Denmark and away from the comfort of not just your own familiar health service, but also from your family, friends and whoever else would have been your close support network.

Firstly, I've changed my name to 'Anon' as I'm scared my colleagues will find this and our infertility isn't something I necessarily want to shout from the rooftops, but it's something that I think may help others who sadly might find themselves in the same position so I didn't want to not write it.

It's tough. Really bloody tough. I've been there. But I am going to do my best to keep my emotions out of it as much as possible and keep it practical, even though this is of course extremely hard to separate as the practicalities and emotions involved with infertility are very much interlinked. I'll be writing a different post on the emotions at a later point.

My last post was in February 2014. By that time we hadn't been trying for that long in the grand scheme of things, but long enough for me to wonder if there was something wrong. But because it was still sort of early days, I brushed it off. Don't worry, friends said. You're still young, they added. You have plenty of time. Just relax and it will happen (this one grates on me so much it's unreal but this isn't the right place to go into that).

But it didn't happen.

Come June 2014, I'd had enough and I wanted to give things a move on; below is the order of things that happened. This is the only way I can think of which would help separate the feelings from the practicalities. I hope that if you find yourself in this horrid situation, that the below might help you a bit and give you some guidance.

1. Doctor visit
We went after nothing had happened after 12 cycles. We were questioned about our lifestyle, told the obvious things such as cut down on alcohol, eat more greens, take more vitamin D, etc. I was then given a henvisning (referral) to a gynaecologist and my husband was referred for sperm testing. The way they refer you, if you are not already familiar, is to write the referral in the system and then you are given a list of doctors on a piece of paper, one of whom you will ring up (your choice as to who) and make an appointment with.

2. Fertility tests in Denmark
Luckily I got an appointment with the gynaecologist round the corner from my flat, which was good. As the referral was made in mid-June, I had to wait until the whole of July was over due to the Danish summer holidays, so I had my appointment in August. I have to admit that annoys me about the Danish system as it cut out a month out of our action plan but hey, there was nothing I could do about it. This is the rough order of how the testing went.

  • GP referred husband for sperm and blood testing - held at the lab on Pilestræde, near Rundtårnet.
  • I had gynaecologist consultation to talk through history
  • Had smear, hepatitis and chlamydia testing at consultation
  • Gynaecologist refers me for 3 and 21 day blood tests to check for ovulation and ovarian reserve - held at the lab on Pilestræde, near Rundtårnet.
  • After my bloods done, gynaecologist performs a HyCoSy, an ultrasound scan which fills your tubes with dye which checks for blockages. More details on that here.
  • Husband referred for follow up tests 

Due to the fact that my HyCoSy had to be repeated, the above steps took two months to complete.In an ideal world, I would have liked it if my own GP had referred me for those blood tests as I could have had them ready for August, but again, nothing I can do about it and I'm not an expert in this. Do GPs know about that sort of thing? I would argue yes, but there's no point lamenting. So that was that. Note that if a smear test comes back requiring treatment, it might put things on hold further but obviously check with your doctor.

3. Diagnosis and referral
I believe it was early November 2014 when we finally got a diagnosis. I won't disclose what the problems were, but I can say that it was unlikely we would have a baby without medical intervention, that is to say IVF. It was heartbreaking at the time but I just wanted to get into the system so we sucked it up and took it on the chin pretty well, all things considered. My gynaecologist wrote a henvisning to Rigshospitalet (one of the main hospitals in Copenhagen) and then we went home to wait to see when we could have our first consultation - my gynaecologist hoped it would be January.

4. Treatment 
Despite my gynaecologist hoping we'd be seen in January, our consultation was in April. That was disappointing - more on that in a future post - and we looked at our finances and found we had enough to go private here which we were incredibly lucky to be able to do. We looked at Dansk Fertilititets Klinik (Frederikberg) and Triangeln (Hellerup) and we plumped for Danfert. The price list was what we expected and the results looked good. Without going into detail, the staff at Danfert decided we qualified for IUI (insemination) and so we embarked on what would be the start of an at least nine month fertility treatment journey. The great thing about IUI was that it was free (apart from the medicines) and we qualified for six IUI rounds. What they do at Danfert was, if not successful after the third round, they refer you to Rigshospitalet for IVF but you get three more goes at IUI in the meantime. We'd already had a referral so were advised to keep it although we of course hoped that we would have to cancel that.

5. Negative tests
Our first two times at IUI resulted in a negative test, or a BFN (big fat negative) as it's known in the TTC (trying to conceive) world of abbreviations. Again, I'll go more into the feelings in a different post but, coming up to 18 months of not being able to conceive, it was heartbreaking. The good thing with IUI is that you can have round after round and don't have to skip a cycle, like you are advised to do with IVF. So it's a quicker process, although only a slightly elevated chance of conception than at home.The great thing about going with Danfert was that we could choose very early morning appointments so I didn't have to skip work, which was a relief - I didn't really want to be absent from my desk so much that it would raise questions - and you are required to go in for scans and the like at least two to three times.

6. Loss
This is where it gets incredibly tough to separate out the feelings from the practicalities but I will try, and will keep this part short. We were successful on our third go of IUI. Sadly, just ten days after our big fat positive (or BFP), I suffered an early miscarriage. It was on the same day as our early scan - I started to bleed in the morning and two hours later, at the scan, it was confirmed that there was no sign of a pregnancy. I don't remember a lot about what happened afterwards apart from that I needed a blood test to read my hCG levels and then another one three days later to confirm that our very first pregnancy in nineteen months was gone.

7. Support post loss
First off, I would like to state that the treatment we had from the staff at Danfert was incredible. During my scans they were very personable, they welcomed you with a smile at the door and when it didn't work the first and second times, they understood that I was upset and just needed to cry before getting onto the couch for my next scan.
When the nurse could not find a pregnancy at my early scan, she was very gentle and very kind. She gave me tissues. However - and this is not a slur on the staff there - the next step was to wait for my next period, which could be in four to six weeks from miscarriage. We left the clinic and closed the door to be alone at a time when we needed support more than ever. My husband and I clung onto each other for days, feeling absolutely broken and absolutely useless. The mental and physical parts of miscarriage are so closely linked, but there is nigh on no support provided for former. I tried to find support groups for miscarriage, but I couldn't find any, unlike the UK where there are quite a few. The noticeboard at the clinic only advertised a support groups for single mothers trying via IVF - nothing for miscarriage.
I see a psychologist who had been helping me deal with infertility so I was able to cry in front of her and tell her about how useless I was feeling but all I wanted to do, apart from have my very early baby back, was to be pregnant again and to keep moving forward with that. But I couldn't. And so I had to really dig deep to try to take comfort in the fact that I could fall pregnant and try to move on. I got through the days by talking and virtually crying on a private Facebook group managed by The Miscarriage Association, a UK based charity. I couldn't find an equivalent in Denmark but if anyone does know one, please pop the link and name in the comments below.

8. Waiting for IVF
It took exactly four weeks after the miscarriage for my cycle to return to normal. As we had been referred for IVF at Rigshospitalet back in November 2014, we had since been to a consultation with a doctor and a general meeting with about 60 others (which is part of the referral and one must attend before embarking upon treatment) at the hospital. The way IVF referral works at Rigshospitalet is that, once you've had your consultation and general meeting, you call them the day you get your next period. You are not guaranteed to get a place the first time as they can only take a certain number - if this happens (as it did to us), they mark it down next to your name so the staff know you've missed out on one 'go'. The second time you call on the following month you are more likely to get a place (which we did) however, although rare that you miss out, it is not guaranteed. If it happens that you need to call a third time on the following month then you are guaranteed a place. They say themselves that it is not an ideal system, but it's better than the one they had a few years ago where the waiting list was - according to my gynaecologist - five years long. It's also much better than the UK where it is a total postcode lottery in the same county. In our situation, where neither of us had any children, we were allowed three fresh cycles with Rigshospitalet. I believe that if you have embryos to freeze then that doesn't count as a 'go' but don't quote me on that as we didn't end up in that position.

That's about it for me, at least so far. I hope that if you find or are finding yourselves in the awful position of infertility, that the above helps even just a little bit. Please don't hesitate to ask a question in the comments.

As for my current situation, I'm pregnant again. I haven't even told family. It's very early days and I'm coming up to around the same time where I miscarried in the last pregnancy. I'm absolutely terrified, as happens with anyone that becomes pregnant after loss, but I am really hoping that in the spring of next year I'll be able to write a post about maternity care in Denmark.

So there you have it. A much more serious post than I normally write but it was important that I did it. I'll write another, more 'diary like' entry about the associated feelings with it all as I feel that's also important.

I'll keep you posted on how things are going.