Which 1 thing would have improved your IVF journey most?

[Healthlovingfeminist]

Firstly ladies, well done for being so helpful and resourceful. I'm adamant that the whole experience could be made much better for other women and men out there, but everyone's experience is so different and personal. What's the 1 thing, however big or small, that would have improved your experience the most?

[soccerkt6]

Increased focus on the male factor! It boggles my mind that we spent 2.5 years wondering about our "unexplained infertilty" diagnosis, and one simple DNA fragmentation test for my husband would've solved the mystery and likely made our IVF cycle more successful.

It would be great if the NHS added sperm DNA fragmentation to their standard testing protocol in cases of unexplained infertility but, even if not, I just wish one of the (many) fertility consultants we spoke with over 2.5 years had even mentioned it.

It makes no sense that clinics wait until you have one or several unsuccessful cycles before looking more closely at the male factor.

[Healthlovingfeminist in reply to soccerkt6]

Thanks soccerkt6 - that's surprising as about 30% of infertility is due to male factors according to NICE. How did you end up finding out / getting the test?

[soccerkt6 in reply to Healthlovingfeminist]

The doctor at our IVF clinic recommended it after our first failed cycle and we paid for it privately. But to be honest, the fact that our doctor mentioned it after only one cycle seems pretty rare. There are lots of women on this forum who have gone through multiple failed cycles and never even heard about the test until someone on here mentioned it.

And those NICE numbers even seem a bit low... most things I've found estimate that 40% of infertility is female factor, 40% is male factor and 20% is both.

[miracleneeded in reply to soccerkt6]

Same! My doc still hasn’t recommended it after 4 cycles, we paid privately at another clinic to have it done. Still waiting on results!

[Hidden in reply to soccerkt6]

We had two dna fragmentation post NHS apprantly we wouldn't have been offered it with the funding all very frustrating! Now at least we know what we are faced with and will be going down surgical removal on our 3rd cycle. Wishing you the best of luck ❤ X

[soccerkt6 in reply to Hidden]

I know, it's so frustrating! So glad you guys got some answers though. It's a bummer finding out bad news but such a relief to finally know what's going on and have a plan for how to treat it. Best of luck on your cycle! xx

[Millbanks]

I would have loved to have had much more in depth information about the issues that might be causing "unexplained infertility"... it's not really a diagnosis and 17 months in we've found out so much more about what has been causing our issues - mainly by my own research and talking to people on here. It's felt like a really long road and having to be an advocate for myself the whole time is exhausting. I would have loved to hear about ERA testing / NK & Immune testing / PGS testing / Progesterone Issues / Blood thinners & clotting disorders / Sperm Fragmentation and Karyotype testing. I know the NHS doesn't offer most of these but if I had known about them I could have done my own research right at the start - not after 3 failed FETs. I guess the reason they don't go in to so much depth at the start is that is could be very overwhelming for some and it often does work first time so they maybe feel like they don't need to. But I just think "unexplained infertility" is such a cop out - as there is always a reason.

[Hope_1234 in reply to Millbanks]

I definitely agree with this 🙌🖖

[soccerkt6 in reply to Millbanks]

Totally agree. Even just a handout that said “these are some of the things that may be causing unexplained infertility” and then leaving it up to each individual to do as much or as little digging as they want, would have been so helpful.

[Healthlovingfeminist in reply to Millbanks]

Thanks Millbanks - what other resources did you use for research / what was most helpful?

[Millbanks in reply to Healthlovingfeminist]

Mostly from others on here. I’ve learned a huge amount from these wonderful ladies experiences. Also just searching the internet x

[Core in reply to Millbanks]

So agree with this and it is exhausting as you say advocating for yourself and doing all the research while trying to work full time!xx

[Mycatsaremykids in reply to Millbanks]

Totally agree I feel like they were more keen to start us on IVF than understand the reason for our infertility and treat that.

[Isla2019 in reply to Millbanks]

Totally agree! I think ideally they should probably only give a diagnosis of "unexplained" once they have carried out more thorough investigations such as laproscopy, hysteroscopy and other blood tests as you say x

[hifer in reply to Millbanks]

Bingo! That’s exactly it. Couldn’t agree more. “Unexplained” annoys me so much. Agree with everything you’ve said xx

[VH88]

What a great question. I often feel like there are so many small changes that would improve the experience.

I think better communication from professionals and reasons for or against tests or procedures and thorough explanations for any findings. For instance it would have been good to be told about tests that are out there and reasons why they do or don’t recommend them. It sometimes feels like you have to be your own care coordinator.

I’m not sure if it’s just me but I’ve often felt like I’ve had to ask lots questions and sometimes felt like this was seen as quite strange rather than just a natural part of wanting to understand what is going on, as best you can.

Just some of my thoughts but sure you’ll get lots of good suggestions and feedback. Will be interesting to see if there any any themes!

[canwyyyyl in reply to VH88]

Totally second that!

[Purple276 in reply to VH88]

Oh definitely. We have to be our own advocates and its exhausting having to do your own research to know what questions we should be asking. Then the look at you like 'who told you about different types of protocol!'Also they are keen to go down the IVF route and no one ever actually asked us about things like lifestyle or are we actually having sex! So many people get the 'unexplained infertility' and as the NHS have limited time and resources they just referred us to a clinic rather than considering any more holistic changes or options.

[Italy300618]

The NHS improving their research and knowledge for male factor infertility. We wasted a whole year with them the difference when we went private was unbelievable

[soccerkt6 in reply to Italy300618]

The NHS fertility consultant who we saw (before we got referred for IVF) actually told us that if there was a male factor problem, there was nothing to be done about it. I now know that's clearly not true, and it makes me so annoyed that there are still fertility specialists(!) in the NHS who don't know better and are telling patients that.

[Thea114 in reply to soccerkt6]

May I ask what can done for male infertility? Apologies for asking such a basic question, but I’m a little lost where to start!

[Italy300618 in reply to Thea114]

Lifestyle changes, supplements, surgically retrieving sperm, using icsi instead of normal ivf, hope that helps xx

[Thea114 in reply to Italy300618]

Thank you Italy for sharing! 😊

[soccerkt6 in reply to Thea114]

Hi Thea, everything that Italy said, plus hormone tests and tests to checks for infections can be done. Sometimes hormone treatment is needed or a simple course of antibiotics can clear up an infection that's been damaging the sperm.

Out of curiosity - do you have a diagnosis of male infertility or just suspect something? xx

[Thea114 in reply to soccerkt6]

Thank you soccerkt6. We once did a sperm test and the hubs tested v low for mortility, but volumes are ok. I also recently did a round of Ivf, with icsi,njot successful. Even with 12 eggs retrieved, only one could be implanted (with 8 fertilized) but none can be frozen. So I have been wondering is it me, or my husband or a combination of bothz

[soccerkt6 in reply to Thea114]

Oh interesting, thanks for sharing. I'm sorry your round was unsuccessful.

The first step of investigation would be to do a sperm dna fragmentation test which will tell you if your husband's sperm has damaged dna. If it comes back with high damage, that would help explain the results of your last cycle. Depending on the results, you can then look at further tests to try to determine the cause of the damage.

In the meantime though, a good supplement never hurts (our consultant recommended Impryl for my husband) and reducing alcohol, caffeine and junk food, and increasing vegetable intake, is always a good idea. Best of luck xx

[Ladypii in reply to Italy300618]

This is so bloody true. And actually makes me livid when i think about it. We saw 3 NHS urologists and wasted 18 months, all of whom pushed for a sperm donor saying nothing could really be done. This was absolutely rubbish. We saw a private urologist that offered us hormone treatment, lifestyle changes and 2 types of operations to extract sperm. I am now 39 weeks pregnant based on that advice. If we had listened to the NHS we wouldnt be where we are now thats for sure!

[Italy300618 in reply to Ladypii]

It's so frustrating isn't it. We didn't get any advice with regards to lifestyle and supplements in anyway with the NHS, makes me so mad. Can't believe your 39 weeks now lovely, that's amazing! Not long now for you, I hope it all goes really well 🥰 xxx

[Ladypii in reply to Italy300618]

Thanks! So pleased your pregnancy is going well too 😘We’ve come a long way and have to pat ourselves on the back for the perseverance, i think in infertility, you just cant take no for answer! Xx

[Italy300618 in reply to Ladypii]

Thank you 🥰You're so right 🙌🙌 xx

[JayceeAus]

Better information from.the clinic. They seem to think it's all straight forward. Which it is until you start pumping hormones through your body and everything gets confused

[muststayhopeful]

Better access to the clinic-if you leave a message they NEVER ring you back, better doctor involvement and continuity of care from the nurses. I felt/feel like a number and the personal touch is not there. Xxx

[Purple276 in reply to muststayhopeful]

I agree getting hold of the nurses and consultant and getting a reply quickly is vital and that they are helpful and appreciate the experiences we're going through. My clinic you always have to leave a message but have been relieved that they always call back the same day so think that really helps. I'd definitely give your clinic some feedback if you haven't already - if they take private clients sure they would hate to get public negative feedback that affects others choosing them xx