NHS ICSI. Timeframes, tests, confusion, guidance needed

[TinyDancer91]

Bit of back story, me & DP have been TTC for a little over 2 years now with zero success. Went to GP in Jan/Feb this year, got officially referred to the local Centre for Reproductive Medicine (CRM) in April. Had initial appointment for August, which was cancelled the day before via text! Ended up actually having our appointment in September. Had internal scan, bloods done (again) and DP had some bloods taken for chromosomal testing. DP had low count & low motility. Came away from that appointment feeling somewhat excited and thinking we wouldn't be far off starting treatment, maybe early new year?

We had a follow up this week to go over test results and DP has been referred for an ultrasound but we've been told that could be 8-12 weeks! Also had a letter with our next follow up appointment through which isn't until May!!

Feeling a little broken by the process at the moment and not really sure what's going on or if this is a normal amount of time to wait. If it's right, it will be over a year from our initial referral, over 18 months from speaking to the GP and that's still not looking like the start of any actual treatment...

How long did you have to wait between your referrals and the start of your treatment? Feeling so lost and like our whole lives are on hold right now.

Any guidance greatly appreciated 💕

I’m not really sure why you have to wait if they already know he has low count etc. why the ultrasound? We had our first appointment in the January and we had treatment in September and that was somewhat delayed as I had to loose weight. If I hadn’t it would have been quicker. Have they explained why?

I don’t understand the wait either- we had a jan consultation and started at the end of June- similar male factor issues and no ultrasound- just icsi rather than normal Ivf- are you able to question timeframes -ie do you have a point of contact? It is such a frustrating time all the waiting- I hope your doing ok

I didn't really have to wait before I was fast approaching 40 when we first got referred 1.5 years ago. There was a lot of frustrations trying to get started though. It's funny they tell you to try and be calm and not be stressed during your treatment and they are the stress-causing agent!

Make sure you remind them to do ICSI on the day of collection as they advised ICSI and didn't do it... not sure why. I had 16 mature eggs and only 2 embryos came out of it.

My first GP appointment was last November, OH has low count & low morphology, he's had 2 SA done and our hospital consultant referred us for IVF, we have our first appointment in 2 weeks. There was never any mention of ultra sound for him though, just IVF for MF infertility. So 13 months to get to this stage. Wishing you luck in your journey x

@JadeAC Ultrasound is to check there's no blockages or blood vessels constricting flow etc. There's no issues with weight for either of us and no other reason (as far as we know) for the delay, which is frustrating. They've not really said why, just that the ultrasound will take 8-12 weeks as it's not deemed as urgent - the same dept also deal with emergencies, kids, cancer screening, etc, so as it's not life threatening, we're not high priority unfortunately, which I understand.

@Edf we've been told it will be ICSI for us too, so not sure why they're not just going ahead with that. The consultant last week did say if the ultrasound shows anything that's treatable that it might help increase his count, but nothing is guaranteed...

@waitingforourmiracle you sound like you're in a similar position to us. We first spoke to the GP back in Jan (although I had mentioned it back in Oct). We got officially referred in April after 2 SAs for OH and 2 blood tests for me (there as a 'lab error' for the first one and they didn't tell me for 3 months that it needed to be re-done!). We were supposed to have our first appointment at the hospital in Aug, but it got cancelled via text the day before, then pushed back to mid Sept. They pretty much told us at that appointment that it would be ICSI for us and did an internal scan for me and extra bloods for us both there & then. We actually didn't know what the appointment last week was going to be for to be honest! Hope your journey is smoother than ours has been so far. Sending lots of positive wishes your way!!

We first went to the GP in October 2022, but referral didn't go through until February as our GP sent the wrong forms and didn't know I needed a rubella test.

We then had our first appointment in May, followed by my ultrasound and hycosy in July. IVF funding forms were completed after this, but then not sent off for another six weeks, so didn't come back until October. We are due to start IVF with ICSI this week.

We were never offered an ultrasound for my husband, but that might be because he's low motility and low morphology, but his count is okay.

My one big piece of advise though is to chase and question things. Our process could have been months slower if I hadn't worked up the courage to call or email asking for updates. I think it could be worth asking them if the ultrasound is required ahead of IVF or even seeing if it's something you could afford privately and whether they would accept those results.

Some ICB contracts only allow a certain number of egg collections each month, I wonder if you are being added to the list after the testicular ultrasound and the wait is due to the number of patients anticipated to be on the list ahead of you, it's not common to be added to a list with investigations still pending, it's also not hugely common for an ultrasound to be ordered unless there was an expectation they may find something that could be contributing to the male factor infertility, I guess you just have to look for the positives in it as it could be something that could be dealt with to improve your chances of a natural conception if treated or increase the sperm parameters ahead of your egg collection to give you a better chance of success, the wait is a killer though I know.

It may be worth asking them if you explored a TUSS privately would they be happy to review and accept the results? You may find you are then stuck on a list for them to be reviewed though anyway and sometimes they insist on their own repeat regardless

@TinyDancer91 Oh gosh that sounds like a whirlwind of a journey to get to this point! We had our fair share of admin errors, main one being our referral from the GP was just filed away and never sent, we didn't find out for 5 months and they tried to cover it! But we're on the right path now! Where are you based?

@waitingforourmiracle we're under Coventry & Warwickshire NHS trust. We actually got told different info at our last appointment than what I had found online. I thought we would only get 1 round of nhs funding, but we were told we got 1 fresh and 2 frozen transfers (providing we have good enough embryos to freeze), so that was a positive!

I've got a phone appointment next Monday so I'm going to make a list of questions to ask them I think

'1 round' usually includes either a set amount of FERs or unlimited FERs, hope things get moving quicker for you

The only thing to consider, and it may be too late now but worth mentioning, your ICB may have contracts with a few other clinics including private providers, a lot of patients go to their local NHS provider and experience a lengthy wait when they could go to a private clinic with no wait, once your referral has been progressed though it's difficult to change unless there's valid grounds to submit an IFR (individual funding request) to show how you differ from other couples and how the clinic is unable to meet your needs - such as needing donor eggs for eg when the NHS clinic can't provide them, if you are referred to an alternative private clinic from the start you don't need to demonstrate a reason in most ICBs.

It's hard to know what the set up is with yours as my experience is more with the Northern ones but it could be worth contact your GP/ICB to ask

Sorry to jump on this thread, I just wanted to ask @Lauren83-

We're North-based (Yorkshire/Humber area) and have just started GP referral. I recently saw on a clinic's website that NHS-eligible patients may chose to go down the private route to be seen initially by a fertility specialist to try and speed up the process. It sayd this would not alter your entitlement to NHS treatment as long as you meet the specified criteria set by your area.

My understanding of that is that we could pay privately for consultation to essentially cut out a very long NHS wait time after GP referral to speak to the consultant. Current consultant wait times in our area are about 26 weeks, so it could potentially save us 6 months.

I just wondered if anyone knew anything about this? We are concerned about delays as we've been TTC for 4.5 years, I'm 35 and we already know my husband is likely to need the pointless second SA test 3 months later, which is a big delay even at this early stage.

@Waitinggame42023 it's not usually possible to do this with private providers but I do know of one where the ICB allow it, it's within SC hospital, is that where you are being referred to?