What questions to ask at appointment tomorrow- unexplained infertility?

[hopingforapeainapod]

Hi all,

Been ttc for a year now and been diagnosed as ‘unexplained infertility’. Have got an appointment with my fertility doc tomorrow to discuss options and next steps, and think we will be looking at relative pros and cons of Letrozole, IUI, and IVF.

Any advice on questions to ask?

I’ve had a baseline ultrasound scan, day 21 progesterone test, AMH blood test, and that’s it. DH has had a routine semen analysis.

Are there any other tests / investigations we should be pushing for?

Thanks all - my partner can’t come with me tomorrow due to work so I need to go in there with as clear a head a possible!

Great idea to plan ahead!

I would take along any cycle data that you have - are your cycles regular, ever had any unexplained pain, anything to suggest PCOS etc etc.

Obviously the results from the blood and semen tests you've done might shed some light - assume these will be available tomorrow?

You don't mention your age - based on this I would ask about how long to try the options above before moving forward to the next steps (i.e if you try IUI, how many before moving to IVF). Do you qualify for NHS funding at all? If not, an idea of costs for the various procedures from your clinic. If you were to go ahead, what are timelines/waiting lists etc.

I think other investigations are probably not warranted at this stage! As long as you don't have any obvious health issues or overweight.

Good luck!

Thanks @loulamay - really helpful! I’m 30 so have time on my side but equally am finding the whole thing very frustrating and the idea of waiting / just trying naturally when I have never seen a bfp in 12 cycles is quite emotionally exhausting. I have PCO but she says I don’t have PCOS because I have regular periods, but I’ve never had any hormones tested and I do struggle with my skin / hormonal acne so I’m wondering whether I need to push with that a bit more.

@hopingforapeainapod ask about hycosy to check that your tubes are clear

Yes you should be offered a Hycosy- before that they'll likely swab you for chlamydia etc then it needs to be done within a set time of those results and the ultrasound (or mine did anyway).
You could ask about endometriosis too- it wasn't until I finally conceived no.2 (took us a fair while), the sonographer said 'ah I can see a few markers for edometriosis, did it take you a while to conceive?'

Agree with the above. Also, if I was going back in time, I'd read Robert Winston's 'the essential fertility guide' at the beginning of our journey as it would have helped a lot. Best of luck.

Hi all - thank you very much for your suggestions. It was a helpful consultation in some ways but also rather frustrating. The doctor basically said her advice was just for us to keep trying naturally and then once we have been trying for 2 years we would be eligible for ivf on the nhs, although she said waiting lists could add another 6 months. I told her I didn’t want to wait that long and wanted to try something - anything! - before going straight for ivf. She was weirdly dismissive of Letrozole / IUI / extra progesterone, and kept just saying that there isn’t enough evidence that these things make a difference if you are already ovulating, but said that ultimately it was up to me. So I think I’m going to try Letrozole in the new year as have nothing to lose. Also I should have said in my OP but I have also had a Hycosy and tubes are all clear…

In fairness to the doctor, what she is saying isn't out of whack with evidence based practice. I know how hard it is to hear, I've been there, but the majority of couples conceive within 2 years and a lot of the fertility treatments have poor success rates and poor evidence to support them. IUI has very low success rates (I wouldn't waste my money on it) and there is no reason for extra progesterone unless you have a diagnosed issue in this respect. Have you been to your GP? You could start the NHS ball rolling. I'd really recommend the book I mentioned, it's really helpful navigating this stuff and gives solid, pragmatic advice.

Hi @SErunner yes you’re right - the rational part of my brain knows I just need to trust the doctor it’s just the irrational emotional part of me is desperate to have a reason or something to ‘fix’ so I can feel some semblance of control! My biggest fear is that I’m not truly unexplained, and that there is a reason and we just haven’t found it yet, so if I wait and keep trying naturally I’m going to waste time unnecessarily. I think my perception has also been very skewed because everyone around me seems to be getting pregnant within 3 months of trying (3 of my good friends and sister in law all got married this spring / summer and are already pregnant).

Have ordered the book you suggested (early Xmas present to myself!) - looks interesting!

I can see this from both sides! But I completely understand that you may have come away feeling like you don't have 'answers'. I am also like that - an organiser, a fixer, and I love to be able to sort out problems - sadly infertility isn't something that you can always sort so easily!

Did you get the results from your progesterone/AMH and sperm analysis? Also, I'm sure you're already doing this but are you tracking ovulation so you know the best days to conceive each month? I used the Clearblue monitor rather than the ovulation sticks as I was never really sure I was reading the results properly.

@loulamay so yes my AMH was normal for my age (I’m 30, think it was around 22) and progesterone was fine (25.3) - bit on the low side but I actually think I ovulated late that month, maybe even as late as day 19. Semen analysis was all normal - morphology was on the low end of normal (5%) as was motility (44%) but doctor said nothing to worry about there.

I have been using cheap OPK sticks but agree quite hard to read - I’ve thought they have been positive before but when I take pictures of them for the Premom app Premom has said they aren’t actually positive yet, so I’ll definitely look into the Clear Blue ones.

I’m also wondering whether to give up BBT tracking for a month or two too - feel like it may be an unnecessary stress and means that my fertility (or lack thereof!) is literally the first thing I think about when I wake up each morning which probably isn’t the best thing for my mental health!

I completely get it @hopingforapeainapod. The book very much advocates not launching into treatment without an understanding of the problem. The difficulty is so much in this landscape is unknown or poorly understood and most treatment options have such poor success rates.

I've seen two consultants and both said BBT is a waste of time. Robert Winston says the same, so I would bin that if I were you! Whilst it is horribly annoying, the most successful way to conceive is to have regular untimed sex, but like you, I like control and struggle to embrace this (we are TTC a sibling having had IVF for our first).

It is so painful seeing everyone around you get pregnant so easily, I do empathise. Im the same with family and friends all seemingly getting pregnant at the drop of a hat! I think you need to do what is right for you, if that is more tests etc then so be it. But have a look at the ones that are worth doing, lots pushed by clinics have naff all evidence to support them. Your consultant actually sounds very reasonable and unpushy, which makes me think they are a good one.

One thing you could explore is a sperm DNA fragmentation test. This looks at the sperm in more detail. Some people can have seemingly normal sperm but have high levels of fragmentation which reduces the likelihood of conception. In the grand scheme of things it isn't that pricey (£500 ish).

Hi @SErunner you’re right, I think that’s why I want to make sure I rule everything else possible out before considering IVF, as I don’t want to waste thousands of pounds unnecessarily on a failed cycle because I didn’t know what the root cause was. But equally I think I’ve got into a negative headspace about it and just am assuming I’m going to need help which may not actually be the case!

I’m glad IVF was successful for you. I hope you don’t mind me asking but how long did you wait before deciding that was the right decision for you?

Yes tbf the consultant was definitely the opposite of pushy, which I wasn’t expecting. I thought I would go in there and she would really try to ‘sell’ me ivf but it was the complete opposite! So that probably is a good sign.

The consultant did actually mention sperm dna fragmentation tests today. She said they normally don’t offer it unless they have reason to suspect it (eg partner is a smoker or older etc) or they offer it after a failed ivf cycle. Did some research this afternoon and lots of studies say it can impact ivf so I am surprised they don’t offer it before the first round. Will definitely look into it, thanks!

@hopingforapeainapod infertility is such a rollercoaster and so very difficult to know what is best to do. As I said, when it comes down to it I think you have to do what you really feel is right for you, but if possible read into things from reputable sources and try to get a full picture so you're making well informed decisions. The HFEA website is another good source of info and has had some recent updates.

We had a slightly different situation in that when we went for testing the found I hd a low AMH and AFC, giving us a potential reason for fertility challenges. We had tests about 18 months after TTC and started IVF a few months later when I was 31. We were very lucky our first round yielded one embryo which became our daughter. I haven't been back on contraception since having her and we are now trying to have a sibling. We had a fresh and FET transfer this summer which failed and are now having a break financially until next summer.

The DNA fragmentation test is on our list for the new year as we've not had that done yet either. Our consultant said the same in that they won't routinely do it and he doesn't suspect an issue, but it's fairly low cost and an easy one to 'tick off', if that makes sense. Our finances are getting to the point of being very limited and our next fresh go will likely be our last, so I'm keen we do that just in case there is something that affects the number of good embryos we get, and might give us slightly better chances.

Hi.

I’m in a similar boat to you. Started TTC as soon as I turned 31 and no BFP in 12 months. Had all the tests and came back as unexplained.

I ‘had’ to have 3 IUIs to qualify for IVF (public system in DK). They all failed, despite them being medicated with Gonal-F and using progesterone, and my tubes being open. I wish I hadn’t have had to do them. My partner’s sperm is fine.

I turn 33 in May, and just had confirmation I can begin IVF in January (cycle date dependent). So end to end from first infertility appointment to IVF was 1 year. We didn’t have to TTC for 2 years, fortunately, before we could start treatment. I’d definitely skip IUIs if you can.

@SErunner the HFEA website looks great! There’s so many different studies and opinions out there (eg some people say progesterone is ineffective and there’s no proof it prevents miscarriages, whereas other people swear by it) so it can be really hard to see the wood from the trees! It’s really easy to get down a bit of a rabbit hole with it all.

I’m sorry you didn’t have success with your latest fresh and FET. I think having a break sounds sensible. You’re so right that you also have to consider finances as well - I feel like the doctor was very keen to make it clear to me that ivf is a huge financial undertaking and unfortunately the success rates really aren’t that high. It’s such an emotional minefield. Best of luck on your journey 🤞

@Copenhagener it’s interesting how much it varies from country to country - I’m pretty sure in the US they recommend IUI before heading to IVF too, but NICE guidelines in the UK don’t recommend IUI for unexplained infertility / heterosexual couples when they are already ovulating. Have you had any more investigations or are you still unexplained? Best of luck with your IVF cycle - how long have you been ttc in total then?

We started trying in May 2022. So: we’re just coming up to 18 months.

Sadly, 3 x IUI is the normal here before IVF, even for unexplained. I guess it’s to keep the costs down as around 20% of women do you pregnant from that. I genuinely think it’s a cost thing. They even said after 2 cycles they saw no point in me having a third, but rules.

I can see some people saying IVF is not generally all that likely to work, but according to the public hospitals here, there’s around a 70% chance after 3 cycles you’ll have a successful cycle that results in pregnancy - that includes women up to the age of 41. I think that’s worth trying for.

Sadly, no answer for my infertility, but maybe I’ll find out more in the IVF cycles.

It is definitely a minefield @hopingforapeainapod. I have read so much over the years but have come to the conclusion that generally staying away from books (other than really reputable ones) and blogs is helpful as they are usually based on anecdotes or poor quality research, scraping the barrel to catch attention of vulnerable people. HFEA and Robert Winston's book and website (the genesis research trust) are the ones I tend to rely on now and base my decision making on.

Finances do run away quickly. We are with a competitively priced clinic but have still spent just over £20k on our testing, two fresh cycles and one FET. Just to give you an idea. My meds bill is high for each fresh round as I need a lot of stims, which are the expensive bit. Just thought this might be helpful for you. Thank you for your good luck. Wishing you well too, and you @Copenhagener ❤️

@Copenhagener yes I think unfortunately so much comes down to cost, I think it’s the same in the UK too - I think that’s why they don’t push you to do too many tests and investigations, to save costs but also because most clinics assume you will just end up doing IVF anyway, and as you said they often diagnose or uncover things through the IVF process. As I’m a teacher I think that if we do need to go down the IVF route I want to try and do it over school holidays, and summer holidays would be best. So if we do need it that would either mean trying IVF this summer (after 18 months ttc) or next summer (after 2.5 years ttc). I don’t really want to wait that long but this summer would mean having to go private though :/

@SErunner I also feel like because I’m Googling fertility a lot, I’m now being bombarded with so many ads for various things that promise to help me get pregnant - various different multivitamins, BBT trackers, fertility cups and home insemination kits, body sensors, everything! Some of them may well me helpful but I worry that a lot of these companies are preying on vulnerable people who are desperate to get pregnant (much like myself!) who then end up spending way too much money on various things that may or may not help (and again it’s hard to work out which ones are actually backed up with science).

Yes I naively thought IVF was about £5-6k a cycle, but I hadn’t really factored in all the extras like meds etc, so it seems that most cycles are close to £10k - so yes tests like sperm dna frag suddenly don’t seem so expensive in the grand scheme of things!

@hopingforapeainapod it varies a lot between clinics. Our fresh cycles were about £7k each including meds but with no other add ons. ICSI etc can quickly add thousands more to that price. If you have embryos to freeze you need to add another £6-800 on top of that. Consults and tests prior to that are obviously extra. Plus you have to have repeat consults etc prior to starting a new cycle generally, if there is a time lapse. FETs are cheaper, more around the £2-2500 mark with medication. I would say the clinic we went with are definitely on the cheaper end though. £10k per round is not far off the mark for many.

Just read through this post, interesting info for me as I am also TTC.
just wondered how your getting on and any good news?

@Frenchtoastie I started IVF! My first fresh transfer failed, but my first FET worked! We’re still early days (8 weeks nearly) but I was relieved to know I could at least get pregnant :)

@Frenchtoastie heya, not sure if this question was directed at me but I am also pregnant! 15 weeks tomorrow! I ended up finding a different doctor as the first one was at an ivf clinic and I felt like they just weren’t that interested in investigating and were making out like my only options were IVF or waiting! Anyway the second doctor ended up doing a monitored cycle, so I had a HCG injection day 14 to make me ovulate at a very specific time and then I took progesterone from 1DPO and boom fell pregnant first go! May have just been luck but I’m convinced the extra progesterone did the trick.

And also @Copenhagener congratulations!!

This is such lovely news - congratulations both. I can add to it! I am 8-9 weeks pregnant following my first natural conception in 6 years off contraception and a lot of fertility treatment. All looking well so far and I'm feeling hopeful. Wishing you both healthy pregnancies.

@SErunner wowza - turns out this is a lucky thread! Such fantastic news ❤️