Frustration with nhs process and having to wait for everything

[Muddysocks1]

Just a bit of a rant. Feeling really out of control and frustrated with the process. We’re with an NHS clinic and doing letrozole at the moment. Already feeling stressed with just having to wait essentially and feeling like I’m being pushy if I ask for anything extra. Like the appts are badly timed (review appt following blood test to check progesterone isn’t booked until after next block of letrozole so too late to change dose if needed for example).
I know there’s probably just so much waiting in fertility treatment and I need to get used to it. I’m tempted to look at further private investigations alongside the nhs treatment because they’ve not offered or suggested, but is this frowned upon? Feels like there isn’t the same consideration as to issues as if we went private. But it’s all so expensive!
is the answer being more assertive? Or do you just suck it up?

Just reflecting on this more. I think it just feels hard because TTC is constant waiting - waiting for ovulation, waiting for time to test, if negative waiting for period to start to try again, waiting for appointments, waiting for test results - I think when we got the nhs referral I thought it might feel like things were moving forward more? Grateful as I know some people don’t qualify for nhs treatment. But the waiting is so hard 😖
I’m not hopeful letrozole will work, and maybe doing IVF is even more waiting?!

It is so hard, I tried letrozole before IVF and it was a constant battle to get blood tests done in time (my day 21 seemed to always fall on a Sunday or a bank holiday Monday) and I ended up on 7.5 which didn’t work anyway.

The only thing I would say is, we have been both NHS and private at the same clinic and it doesn’t seem to make much difference, you still have to chase and push for things. I think it’s just because they are busy and your treatment is only really a priority for you. So yes, I do think you have to be quite assertive which is hard at a time when you are probably mentally struggling (I was/am!) Maybe it’s worth you considering some other clinics?

I don’t think having other investigations done is frowned upon at all but of course will be expensive. I was told by a consultant that there’s no point doing extensive investigations because the solution will always be IVF…I think there are some people on here who will strongly disagree with that though!

That’s interesting re private! Makes sense though.

yes I think that’s seems to view of our doctor. But some of the things I think could be an issue for us could be a barrier to IVF being successful (implantation issues and sperm dna frag).. husband less willing to look outside of the NHS plan though alongside.

im not sure if we could move clinics now as its NHS? I think I will have to try and me more assertive though. Just waiting for my blood test results this month (refreshing the nhs app - more waiting!) and either they look fine and I just carry on, or contact them to ask for a sooner review 🤞🏻

I don’t think you could probably move whilst under the NHS but if you are thinking of going private then you can go anywhere. On my final cycle my bloods didn’t come back before I needed to start taking my letrozole so I just made the decision to take the higher dose- lo and behold it came back that I needed to increase it anyway but it meant I didn’t miss a month. A bit naughty but I figured it was my risk to take 🤷🏻‍♀️

Hey @Muddysocks1 i am pretty sure we were on a thread when both pregnant with both having bad results. I hope you’ve been ok. I can only write to show support—the absolute worst thing with the whole of infertility is the waiting. You described it perfectly, and I’m pretty sure I have in the past written a close version to your post before. You’re not alone in feeling it ♥️ One hopeful thing is that once your initial waits are over with nhs ivf, everything speeds up a lot. And the time between rounds (if you can have/ need more than one) is short in my experience. We then had to go private and found things got speedy, however I had to crack the whip (lol) a good few times to keep things flowing. They were happy for me to have a month off between treatments, but I was adamant to get it “over and done with” in a journey I thought inevitably led to donor conception. If you wanted to have investigations privately that don’t interfere with your treatment I’d say go for it. The nhs is minimal in this. But do remember that the reason for this is that often additional investigations are money makers. Use the hfea to check on usefulness of tests and procedures.

wishing you the absolute best of luck x

I don’t blame you! I have to say I was considering upping the dose if progesterone isn’t high enough, but then they’ve only given me enough for 6 cycles and if it doesn’t work I might lose a month at the end 🙈 but then if it’s not working and doesn’t work at higher dose then maybe it doesn’t really matter…

Yes we were! Feels like this has been going on for so long. Hope you’re ok too ❤️

that’s true re investigations. I haven’t actually had a scan at start of cycle to look at my follicle count (although had some blood tests so maybe they thought it wasn’t needed), only had a CD1 scan. Feel like they offer a treatment plan with not that much info? DH has low morphology on first semen analysis but it was 5% at the next so they said it’s not an issue. Just feels like there’s more going on? But then, letrozole might do the trick, maybe I need to take a deep breath and go back to finding some distraction (which has helped over the past months mostly)

I think it helps to vent these frustrations. If I ever have a full term pregnancy, it will be the agony of waiting I remember with the deepest regret. My life hasn’t been on hold in many ways, but it’s very easy to summarise the last four years as stagnant and wasted. I’m forever telling myself to invest in new things or old things that I love. I like to write, and have been trying to keep notes of interesting thoughts I’ve had over the years in the hopes that I can at least turn all the waiting into something. I’d be kidding myself if I could pretend to distract myself from this most powerful subject though!

Poor morphology is a factor for us, 2%. Full disclosure as I feel misleading if I don’t say (but don’t want to come across as insensitive) our last round produced our only good blastocyst (5 rounds, 14 eggs, 13 embryos only 2 blasts, and this last one the only good quality one). It implanted last week, so carefully watching and waiting and fearing.

The hardest thing about ivf is all the waiting around you have to do for test results, testing, scans the next steps, getting through all the meds, making it to egg retrieval, waiting for a transfer, waiting on whether or not it works, getting to next appointments. And then there are halts inbetween if something comes back abnormal, or something is found on a scan, or if there isnt great response to meds. You literally spend your days waiting around. Its hard to make plans around ivf or take time off work or anything because you have no idea the times and the lengths of waiting periods or what your next steps are. Thats just my opinion anyway and experience and I have a pretty good, reliable clinic.

Hey @Muddysocks1 Totally feel you, and have been feeling exactly the same at the moment. All of the waiting is completely draining and you just feel so helpless don’t you.

We recently had our 3rd failed transfer (second one technically was successful for only for a few weeks so it still feels like a failure). Since then we really pushed for a meeting with the consultant because we only have one embryo left before we would have to move onto a new egg collection etc, so don’t want to feel like we are wasting it, when we really feel like there must be something wrong! I am usually someone who just goes with the flow and doesn’t complain but my husband has been quite pushy and I think it paid off as we managed to get the appointment for mid November after they originally told us it would be after Christmas. So I would say definitely be assertive!

my plan is to go to the appointment with all the list of further testing I have read about and see what they say about it (probably they will poo poo it 😂) and also ask if we were to get this testing done privately, how would that work with any future transfers, if a private clinic recommends some sort of treatment / meds to go alongside a transfer!

It really is so exhausting and seems so unfair that some people get this so easily 😩

It really is so exhausting and seems so unfair that some people get this so easily 😩

Yes, and some people aren't eligible for free treatment. It's rough all sorts of ways around.

@Muddysocks1, the waiting is horrible; I'm so sorry. If it helps, I've had experience of three different clinics, all private (same-sex couple; started treatment back when it was virtually impossible to get NHS treatment, oh the joys). And I think they are just like this. I've had better and worse treatment, but I do not think that going private suddenly makes them start doing things faster or with better-planned appointments. If you were going to go private, I would do a ton of research into the clinic before choosing - you could easily find they were just as bad, or worse.

I hope it's helpful for me to have said this - I'm saying it because I think I would be exactly the same, worrying that I 'should' go private because it 'should' be better. And unfortunately, I really don't think it often is.

Threads on here will bear this out, too. Some clinics/medics are wonderful. Some are not. Doesn't seem to be anything to do with whether you are NHS or private.

How did you get just letrozole? I asked and they said no I have to have IVF , but my problem is low ovarian reserve and poor egg quality, so surely ovulating more eggs with letrozole could be a good option for me as I have been getting pregnant just having chromosonal miscarriages xxx

My infertility experience has made me lose hope for the NHS for anything that isn't life or death. They operated on me when my ectopic ruptured and saved my life and I'll always be greatful. But for everything else....

One experience that stands out was when I ended up booking a HSG privately as the process trying to get one booked through the NHS was so mind numbingly slow and tedious and ineffective. The NHS had already tested me for chlamidya - I needed evidence of the result to have my HSG done by the private clinic.

I asked them to forward me the result (the test was done and results back - I just needed the lab report). One month later and I still hadn't had it - due to holidays, delays, wrong email address, sending me over the rubella instead etc etc etc.

I gave up and booked a private chamlidya test - easily done and had the fresh result back before I ever saw my NHS one.

The NHS rang me on the morning of my private HSG to say they had just posted my chlamidya result in a letter to my house. Thanks - but you are far too late!!! It never arrived 😂😭

I'm now embarking on private IVF and I cannot believe the difference in the experience. It's night and day and I don't feel like I'm a PITA for contacting them. Clinics vary and I may just have a really good one, but I feel like my life admin has decreased by 1000% ever since I went private. They chase me now for stuff rather than the other way around!

What area are you in? I'm really not looking forward to my NHS IVF in jan, been trying so hard to get pregnant before it but just having a chemical and only got about 3 cycles left. The NHS won't help me with any suspected hormonal imbalances, they just said IVF will control it anyway, but I know I get like one or 2 gos and have DOR, so don't want to just be left and refused any more help after the IVF if it fails xxx

Thank you all! Sounds like some real mixed experiences too. My only experience of private is some testing with Plan Your Baby which was so efficient, but maybe that’s different to having actual private treatment.

I think we might look at some private tests, alongside the nhs treatment, so I feel like there’s not big question marks hanging over certain things and so I feel I’m doing all we can

Sorry @NeatZebra i forgot to answer your question!! Fertility doc said letrozole might work because I have low progesterone and my scan the day before ovulation showed a small lead follicle so likely my eggs aren’t maturing enough. They haven’t actually checked my ovarian reserve though which worries me! I need to ask if they’ll do an antral follicle scan, or maybe I should do one privately. My amh was fine when I last had it tested I think last year but I don’t know how quickly it changes

They probably would have mentioned on your ultrasound if you didn't have many follicles. I have just booked a private scan for day 13 of this cycle to see if my follicle is mature. The company was ultrasound care direct and it was only £80. They do follicle counts too for £80 xxxx

Yes that’s true, although I thought by ovulation the unneeded ones disappear and so you only really see the dominant ones? I’m not sure if that’s right though 🙈 but I imagine if consultant wasn’t sure or concerned he’d have double checked

That’s a good idea to check. They’re not monitoring my letrozole so it’s tempting to privately check how it’s doing but feels frustrating to need to pay

Did they not monitor you for one cycle even? I think I'm going to try this privately after IVF if the NHS don't let me x

I had one after a miscarriage to look for retained products and it was a few days before my period came, and they did count 8 which was more than I had at the beginning of my next cycle. It's most accurate day before day 5 though they say, but if your amh is good youre probably fine xxx

Nope not with a scan, only with progesterone test in second cycle - so does make me slightly uneasy not knowing what’s happening!

Ahh that’s interesting. So much to work out. I’m sorry to hear about your miscarriage xx

I think that's one of the things that makes it all so stressful, not being monitored and not knowing what's going on and having to try and find out for yourself without access to the right tools unless you can afford to go private. Ultrasound care direct was the cheapest transvaginal scan I could find , the other places were about 150.00 xxxx

You’re so right - and it’s feeling like you can ask because I feel like I’m asking too much. I’ve got a review coming up and I might ask about whether it’s worth a scan to see what’s happening. If not I might book a private one (I think letrozole could affect the scan but if I did it before I start the tablet on day 2-3 it should be fine)