Manchester NHS IVF - experiences?

[RingLightLight]

Hi! Just this week been to have bloods and US scan at reproductive health at St. Mary‘s.

I have (lean) PCOS and late 30s.

Bit frustrating as at every step you’re given a new time frame - but no overview of what the overall time might be and what will happen at each stage.

I've been told 12 weeks to hear back and then no idea what might happen after and in what time frame. I did ask today and was told to look at website. But this information isn’t on the website.

There's no info on decision criteria, overall timeframes, etc.

Anyone been through treatment recently at this hospital and have an idea what to exist? Thank you x

@AnonPCOSTTC You‘re welcome!

Inositol I use is from a brand called Health Leads, you can get it in a big tub from Amazon. I take two scoops in the morning with breakfast and two in the evening with tea/dinner. I’ve also cut sugar out of my diet, and in terms of carbs eat only limited amounts of wholewheat carbs. (On a day to day basis that is – I do make exceptions for meals out or treats occasionally.) I do have porridge every day. My diet is low GI basically to keep blood sugar levels steady and help regulate insulin and hormones (i.e. same as the inositol).

I still have a long, irregular cycle.

But before I was bleeding heavily for months at a time or not having a period at all for months. When I was on a ‘period’ I was having no hormonal symptoms (never have done).

Whereas since taking, my periods have a definite feeling of a hormonal cycle to them. Things like breast tenderness and other signs of ovulation mid cycle, hormonal feeling just before period, and a period that lasts 7 days on the dot. But so far with at least 2 months in between periods (sometimes more).

@AnonPCOSTTC

Re medication vs IVF, I also assumed I would be offered clomid or another medication first, then move on to ivf as a next step. I do wonder actually why they didn’t do this, as it took one year from referral to start treatment. So for the duration of that whole year could have been trying something else in the meantime. The appointment with the consultant was 10 months after referral, so I guess they feel it requires expertise in fertility treatments to make this call about what to take depending on your clinical profile.

I think with hindsight now I would have started with this years back (it was kind of on the agenda then the pandemic happened and – I guess that's just life). What I now realise is that now the fertilised eggs are in storage, theoretically (if I was younger), I could wait several years to use them. Before 40 you are entitled to 3 rounds of egg collection via NHS (in Manchester) – after 40, just 1. It also means that they are there in future if you wanted to try for more DC, and because the eggs would have been taken at a younger age, each one is more likely to be viable quality if/when you did decide to go ahead to treat ‘secondary infertility’ (as it's called).

I think the term IVF conjures up all sorts of associations with stress, worry, emotional rollercoaster, intense treatments, etc. But my experience was that the only stressful bit was the poor communication, long indefinite wait and uncertainty caused by the hospital while waiting to get started.

The actual treatment itself has been a breeze, including the egg collection which took all of one morning. (Important to note: I had a low dose extended stim cycle due to PCOS with high AMH levels – so this relatively mild protocol may (?) have resulted in barely perceptible side effects. Although I was actually at increased risk of OHSS, which didn’t happen). The transfer will involve uncertainty too, but no more than that involved in natural conception. And the chances of success are higher.

@RingLightLight

Ah amazing, thank you! I’ve used a couple of different brands and I do notice a bit of a difference but they’ve never really “cured” my long cycles etc. sounds very similar to you though where I’d say they do make me more “regular” but that still means a 55 day cycle. Totally agree though.. I definitely get more ovulation symptoms and hormonal cycles than I did pre inositol. I’m not sure I ovulate though because I get the symptoms multiple times throughout my cycle and never get a positive OPK - I just wish I knew what was going on in there!!

I also tried adopting a low GI diet (which I still try to do to an extent) but I just found it was taking over my life a bit and then worried the stress was having an impact. I have to say though I did cut drinks like wine out and swap for spirits when I do drink because I feel that’s quite an easy win!

Ah - the joys of PCOS hey!!? I’m so nervous for my follow up appointment as I’m not sure what they’ll say but on the other hand it’s the only thing that helps me to feel even slightly in control at the minute because I’ve almost accepted we won’t get pregnant without help.

@RingLightLight

hi again.. sorry just coming back on your other IVF note.

TOTALLY agree with you re trying to ovulation drugs whilst waiting for IVF! It really baffles me that you have to wait all of this time then there’s no wait for the actual IVF when we could have been trying the medication in the meantime. I guess it’s because we end up doing so much of our own research though so we know the solution we want/need before we even see a doctor, which maybe means we get a bit ahead of ourselves, haha!

it’s really good to hear in manchester they offer 3 rounds of egg collection.. I live in Trafford which previously offered just 1 round but when I had a look the other day we’ve moved to ICBs haven’t we and it said “policy under review” so I wasn’t really sure what they offered anymore.

I think you make great points about the benefits of IVF and being able to freeze embryos for future children etc. like you say, I think I’ve always just associated IVF with “my last option” and a bit more invasive than ovulation stimulation, so getting there straight away feels scary but to be honest I know so many women (without PCOS/endo) who have their healthy babies via IVF nowadays and it’s great it’s becoming less of a “taboo” topic of conversation.

I’ll keep this thread updated once we have been seen and let you (and any others who may stumble across it) know whether they offer us ovulation drugs ahead of IVF or not. We were referred 9 months ago so hoping we may get our letter soon.

anyway.. I’m really glad to hear how smooth your IVF process has gone so far and sounds like you have such a great mindset towards it! Fingers crossed for your BFP next month :) x

Hello @RingLightLight,

I wanted to check in to see how you were doing post your FET!? Hope everything went well for you :)

We have our consultation appointment (finally) next week, 12 months after being referred! Ridiculous as well because I rang up to check in on how long we might expect until we get our appointment confirmed and the person on the phone said "oh, are you Miss xxx?" and when I confirmed they said they could book me in over the phone there and then!!? God knows what would have happened if I'd never rang to chase.

I remember you had been speaking about looking at getting a second GP referral on the go to a private clinic via the NHS before your consultation. I think in hindsight I wish I'd looked into this sooner, but almost feels a bit pointless now we have our apt next week. Just wondering if you ended up having a good experience with SM in the end, or if you'd pursue the private option if you were me? I'm nervous about potentially using our funded rounds with SM if they aren't as good as Care.

Hiya! I’m just putting together a PALS complaint about SM at the moment 😆😆

I was in a similar position re being referred to a private clinic or going ahead with SM.

I’d decided about 6 months after referal that I wanted to be redirected to a private clinic (if my GP had made me aware I could do this, this would have been my first choice from the beginning!). Besides anything, you can see on the HFEA website that SM are below the national average in terms of success rates. Manchester Fertility have better results.

Unfortunately we had a lot of time wasted by Create – they encouraged me to submit a referral without telling me my ICB didn’t have a relationship with them and so wouldn’t approve. They also didn’t tell me they don’t accept any post and only accept email referrals (NHS standard is to send a letter in the post). They then encouraged me to try and submit an exceptional clinical circumstance form in order to access their services, which was one massive wild goose chase which wasted a further 4 months. By that time the consultant appointment with SM finally rolled round, and there was some uncertainty around the waiting time for a brand new referral to a different clinic. So I cut my losses and went ahead with SM rather than potentially waste more time.

Once treatment started, the experience was better (although by no means faultless – I waited 5 months for my period, and nobody bothered to tell me I could be induced at any time – among other issues). The staff who actually do the ER and FET were great, as was the embryologist I spoke to.

One thing to watch out for is to make sure your partner goes with you to the first consultation. Can’t remember if I wrote about this upthread, but they postponed my appointment by 3 months because mine wasn’t there (he had not been invited or asked to attend!!!). I managed to get a cancellation, but it still delayed things by the best part of 2 months.

I had my FET just a few weeks ago and unfortunately it wasn’t successful. Now considering whether to try again via self-funding, but feel very aggrieved as if waiting times had been communicated (my treatment was 1 year and 3 months after referral) I would 100% have gone elsewhere, even if this meant foregoing the free NHS round.

What you’ve relayed about your appointment and the phone call sounds typical! If you have your consultation now though, you should be able to go ahead with treatment immediately after that.

@RingLightLight ah I'm so sorry to hear your FET wasn't successful, I remembered you'd said you were having it a while back so thought I'd check in. Sending you lots of love and positivity for whichever route you choose moving forwards. I'm assuming you only had the one embryo to use?

I think what you have said is a little bit in the back of my mind where if we only get 1 round of IVF on the NHS, I'm nervous to use it up with SM and their lower success rates. I'm just not clued up at all on whether my GP would even refer to me to Care for my NHS referral. Is it a given that you can choose to be referred to a private clinic or at the GPs discretion? To be honest, I'd rather start the process again and wait a little longer to feel confident in the hospital, rather than just go ahead for the sake of it. Not sure what's best to do really? I guess maybe we could go to the appt and see what they say then make a call? As you say, strange some people get the choice and some don't.

And thank you for the heads up, they actually mentioned on my letter for my partner to attend so I did wonder if it's something they've recently started doing after reading about your experience.

If time is not too much of a factor for you, then could definitely be worth exploring alternatives. The difference in success rates is not humongous but it is substantial – from memory about 7-8%? (MF at 35% ish per embryo, SM at maybe 27%? The info is on the HFEA site.)

They were just careless about things. I wonder if that accounts for some of the difference? Prob not all of it.

E.g. the one day I had to collect stims medication from their pharmacy but had a long drive ahead. I knew the vial needed to be kept refrigerated/chilled. I contacted them for advice and the nurse insisted (rather snottily!) that I was wrong and not to bother about it as it just needed to be at room temp. I checked the med leaflet online and lo and behold – must be kept under 4 degrees (or whatever it was). I sent them the pic to clarify and they backtracked and said that was right. Think in the end I bought some chilled groceries and put it all in a bag…..

Another concerning one – for my FET I was given estradiol patches (primarily to thicken lining). Normally I would just read the box and follow the instructions, but they have an app with medication instructions and reminder. The whole way through their instructions it talked about ‘Apply the patch, check the patch is adhered’ (etc.) By chance, the day after the FET, I noticed the box said 2 patches. I contacted them and they confirmed it should be 2 patches. Right at the bottom of the app instructions there was a brief line saying ‘We recommend checking the packet’ (or similar). They reckoned it shouldn’t make any difference as my lining was thick enough but did recommend switching immediately to the correct dose.

Could go on!

Ah, I'm really sorry to hear they messed you about so much. I can completely understand why you're putting a complaint in, especially given things went on WAY longer than they needed to because of their errors with your partner's SA and also you waiting for your period to come. Hopefully you will have a much more positive experience if you decide to go for another self-funded round.

Your feedback has definitely given me food for thought and I will be going armed with questions. It's a shame though isn't it, we shouldn't need to be the ones who are reminding them of trigger shots or how medications should be stored!!

I did have a brief look on the HFEA website last night out of interest, and I was surprised to see how low Care fertility score, since everybody seems to rave about them. As you say, Manchester Fertility definitely stands out as the top performer. I've read that once your funding has been approved you can apply to have it transferred there, but sounds like you need quite a good reason. I think we'll attend the appointment next week and see what SM actually say before making any decisions.. they might offer us Clomid or something similar so I'm getting a bit ahead of myself!! Although, I wonder if I'd be tied to them for the whole process once I started. Honestly, it's baffling that there is no information anywhere on this so that we can make informed decisions!!

What I did notice, was that it sounds like SM have had to make a lot of changes over the past few years based on the reports I read on HFEA website. Sounds like they got quite a telling off so have had to implement lots of new procedures. Annoying they only display birth rates from 2018 and prior though, feels a bit pointless looking at stats from 6 years ago!

Oh do they! I didn’t even realise this! So they are completely out of date.

Once we had the consultant appointment, we were then given the option to confirm we’d like to go ahead with treatment.

Re choosing your provider, I’m not entirely sure how it works. Once I knew I could do that, I spoke with my GP and they were happy to make the referral. As far as I understand, they only refer to SM as default because it’s the standard NHS department for gynaecology. I know other people in Manchester have been proactively told by their GP that they can choose provider. I’m giving feedback to my GP that I would like to have been proactively made aware of my choices (rather than learning this through mumsnet ‘folk knowledge’ 🤨😆)

I would speak to your GP and ask if they will be happy to make the referral. I think the better success rates are as good a reason as any! You could also mention the high number of PALS complaints (confirmed by the person at PALS!).

And yes, it’s really inadequate how far you are forced to advocate yourself and your own care, as if left to their own devices it’s all so lax. (And well, even when you do advocate for yourself, it’s still lax!)

I spoke with Manchester Fertility on the phone and they came across as very professional.

Thanks for the supportive words!

That makes sense about the HFEA too, as I gave very low feedback yet I noticed the patient feedback scores for SM weren’t dented (and there were only something like 31 ratings). Although possibly the increment would be too small. I was surprised their score isn’t lower given how notorious they are for being incompetent.

That makes sense about the HFEA too, as I gave very low feedback yet I noticed the patient feedback scores for SM weren’t dented (and there were only something like 31 ratings). Although possibly the increment would be too small. I was surprised their score isn’t lower given how notorious they are for being incompetent.

Hi everybody,

Just thought I would give my own update for anybody reading this and wanting more information on what to expect from your consultation.

We were originally referred on October 2023, had initial tests in January 2024 (myself) and March 2024 (my husband) and then had our consultation in October 2024. So, around 12 months exactly for us to be given our results/options and have a proper conversation with a specialist. For us, this timeline was fine, but I know for some this may seem quite a long wait!

In our consultation, the Dr ran through our results, some of which were expected and some of which were new news (nothing bad), but the Dr was really helpful in explaining everything in detail and making sure we understood what the results means.

I would say we had quite a positive experience, but I'm not sure if that is because I went with low expectations and armed with lots of questions in anticipation of not getting much detail. However, to my surprise I didn't really need to ask most of my questions, because the consultant ran through most of the elements I wanted to discuss before we even got to that stage.

For us, Letrozole was recommended and for reference I am in my early 30s with 'lean' PCOS. The Dr confirmed I likely don't ovulate so this is the best option for us, before starting IVF if that doesn't work (we can try it for 6-8 months).

Purely sharing for anybody looking for this type of detail, as I know I was reading lots of these threads ahead of my appointment trying to gain an understanding of what our next steps might be whilst we waited!

Happy to answer any Qs if anybody has any :)

Sorry, just to add..

I would definitely agree with @RingLightLight in the sense you need to be your own advocate. I'd definitely recommend doing lots of 'homework' (for want of a better word) before the appointment, and almost go in knowing what you want to get from it. Otherwise, I can see how easy it is to be bombarded with information and miss the opportunity to ask questions/get clarity on any reasoning why that route is best for you. (Absolutely not insinuating this is okay by the way.. it's bad that we are expected to be our own doctors but unfortunately it's the way things seem to have gone so worth doing in my opinion!)

As Ring Light said, things like inducing a period etc might not be offered up (they were for us luckily but I was prepared to ask for this based on feedback I'd read from others).

We were also told we could start taking the medication whenever we wanted.. so there was no pressure to start that exact month for example :)

Hi, I am 21 days post 5 day frozen embroy transfer. This is my 3rd FET as the first two failed to implant. I tested positive on clear blue pregnancy test at 14dpt and clear blue test indicated I’m 2-3 weeks.
I’m booked in for a viability scan in 2 weeks but I have been so anxious and been taking tests every other day. I tested again today and clear blue test was first flashing 3+ weeks and then said 2-3 weeks. I’m driving myself crazy with worry as I was expecting 3+ at this point. The test was not with first urine of the day. Has anyone else had this issue.

Thanks