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

@HopeHopeandmoreHope thank you! How do you go around applying for funding? It’s never been fully explained to us. We thought we would just get referred and then we would have a consultation and then apply? But it seems people do it differently. I’m worried that this is what’s delaying us but could be wrong.

when we had our baseline appointment at SM we were never asked to get a pink form or anything I was just sent on my merry way. When I rang SM on Monday they said we were still on a waiting list

@HoustG did you go straight from GP to SM? Or have you had any thing done through Oldham hospital gynae department?
My GP referred me to the gynae at Oldham (I think this was about 9 month waiting list) and I saw 2 consultants there and they both said we would be going straight for IVF due to MFI and polycystic ovaries, I left it in their hands then regarding funding, said I should hear within 3 months if it had been accepted but actually got the letter a week later and that's when the GP did the referral for create x

@HopeHopeandmoreHope we went straight to the GP who referred us to SM and then after reading this thread, the GP has referred us to Create last week. Hopefully if someone contacts us then I’ll just ask them about it. Our issues is only male factor so hadn’t been referred to anyone else

@HoustG Ah it sounds like they follow a different process, it's crazy we're so close and things are done different! They are helpful at create so hopefully they can answer the question x

Thank you for the responses so far! My partner has his appointment at SM a couple of weeks after mine, so we get told any findings from scans etc at the appointments, or do we have tk wait? I'm thinking it's probably worth us both going ahead with our appointments like planned and then make a decision from there as to how we want to proceed. At this stage I don't even know if I'll be offered any treatment, but after nearly two heartbreaking years of ttc with no joy I really hope I do!
This is the worst club to be in but with the loveliest, kindest people isn't it!

Hi @MancBee87 !

The lady who did my scan was able to share with me the results immediately (ie number of follicles, thickness of endometrial lining), and they then later came up on the myMFT site/app. The US and blood test results came in at various points over the following month or so.

It has then been 7 months between the baseline appointment and a follow up with a dr to discuss the results.

Did you have any initial blood tests with your dr before referral?

And yes – I’ve found out so much more from people on here who’ve been kind enough to share info and advice than I have from my drs (who are lovely but don’t seem to know much about it all!) X

@RingLightLight sorry if you've already said and I've missed it, what stage are you up to now?

@MancBee87 I agree, no one wants to be in this club but at least MN helps to know you aren't alone and it helps to hear other peoples experience 💛

Hiya @HopeHopeandmoreHope !

I’ve got my consultation at SM this week (via video) following bloods taken back in June.

At the same time, since September, I’ve been pursuing a private referral via my GP. My preference was for Create (as they do mild IVF and I have PCOS) however this hasn’t been as straightforward as hoped as they don’t have a an existing partnership with my area in Manchester and so it’s a case of applying for individual funding. By chance, I saw a copy of the form my GP sent and I just don’t think he’s equipped to do it – barely any of the required information was filled out and the application was inevitably rejected. They couldn’t have approved it even if they wanted to as he didn’t provide any rationale 🫣 Luckily there’s a lady who works in the department processing funding requests who has been very helpful and very happy to answer questions.

I don’t really understand at what part of the process you might ask for an alternative provider (e.g. Care). I guess this is something I can ask during my appointment with the Dr from SM.

To be honest, if I’d known back in March that it was all going to move this slowly I would likely have gone private from the get go, or potentially have asked directly for a private NHS referral to Care. The benefit of hindsight eh!!!

How are things going for you? X

@RingLightLight oh gosh that is such a long wait 😩 I hope you can get the funding issue sorted, it's strange how we're all Manchester based but all the processes are different! All my gp had to do was send our details they didn't have a form to do, perhaps the funding had been accepted before then

I've just got home from work to all my medication and got really overwhelmed and burst out crying 😢 there just seems so much!! But just need to keep reminding myself it will hopefully be worth it x

I can understand it must be overwhelming as you’ve waited so long for this moment to come but the reality just hits seeing all those meds! Try and stay positive as you can and take it one step at a time, try and plan little things to look forward to during these next few weeks, hopefully it will keep you going and it will help to have a distraction!
Goodluck!!

Hello! 😄
At my baseline appointment with SM I had a blood test and scan and I also had to a chlamydia test. Height and weight was also checked. My partner had 2 semen analysis with SM both were completed prior to this appointment. I received the blood results a few hours later on the MFT app and the scan results a few days after. I imagine it would be worrying to see negative results and then have to wait months to get an explanation or discuss with the doctor!
My follow up consultation with the consultant is next week and this is face to face 😊. I hope everything goes well for you and things move quicker than the 6/7 months I had to wait (I was told 12 weeks and thought that was long at the time haha!)

Apologies if this is a really stupid question, but would it be an issue if I'm due to still be on my period on the day of my baseline assessment appointment?

Not this won’t be an issue! They’ll still go ahead with the scan 😊

How are you feeling today @waitingforourmiracle? I think it can be such a rollercoaster with all the uncertainty and stress to manage, it’s understandable feeling overwhelmed seeing all those meds and anticipating the next steps! Managing all the different emotions can be a task in itself Xxx

I’ve found it helpful to try not to think too far ahead and also to focus on things I can control – like eating well and making sure I’m getting enough sleep.

Agree with @Itwillbeworthit about planning some little things to look forward to and taking things one step at a time. I definitely found that thinking too far ahead was stressing me out! Xx

With the funding it seems there are different areas in Greater Manchester, and everywhere is approved for Create apart from Wigan and the city of Manchester. The lady assessing funding did mention it’s very inconsistent! 🙈

@Itwillbeworthit that's exactly what it was! Reality hit! Good luck next week

@RingLightLight I'm feeling better now thank you, it was just a lot all at once haha!! I'm just emotional all the time these days any way, it doesn't take much for me to start tearing up!
That's really annoying! I hate how postcodes play a part in funding 😔have you had your appointment at SM this week? X

I know exactly what you mean! :)

And just had it today!

It really is madness isn't it when we're all in the same city but individual boroughs can be so different! I live in Trafford but my GP is based in either Salford or Wigan, not entirely sure as it's right on the border, but I felt so comfy with that GP that I asked to stay with them after moving house. So goodness knows what process I'll end up with.

I also just don't understand how wait times can be so long, I know we're not asking for life saving treatment but it's such a huge thing and can have such a detrimental impact on our mental health the more it's strung out, you'd think they'd do something more. I try not to complain as I know we're lucky to have the NHS but some of it truly baffles me!

Reporting back!

Had my follow up consultation with SM this morning following bloods etc. in June. Main things to mention:

• The Dr asked if my partner was there (he wasn’t!) She said that ideally he needed to be there for the appointment (in this case a video appointment). We could have arranged this had we known, however it was not mentioned anywhere on the letter, text or the MFT app, so we had absolutely no idea this was expected! (She mentioned that the admin team should have let us know… got the impression the drs there share the same frustrations as patients..) She asked if I could get him on the phone but unfortunately he was busy showing my MIL round out the house and not available to talk about sperm 😆) So if they have not asked you to take your partner, could be worth him going along anyway to be on the safe side.
• My partner had tests done with his own GP a while back, but they said he also needs to have tests at SM, and should have already been contacted way back to arrange this. There will now be another 1-2 month wait for him to get tests and follow up with SM (no comment!! 🙈)
• She told me funding/eligibility had been approved way back in August
• Wrt timelines, starting treatment should move quite quickly now (my partner’s appointment aside) – she said there is no waiting list for the IVF itself.
• Other than that she asked my marital status, how long TTC, what periods are like and went over the results from June in brief (in my case the main thing to mention was high AMH levels and stuff around PCOS).
• I asked lots of questions, particularly with reference to IFRs, alternative providers, and how they would mitigate risk of OHSS for someone with high AMH (typical in PCOS)
• She told me that they cannot refer me to another provider eg Care or Manchester Fertility as they have secured the funding for the treatment (so they do not have cooperative agreements with the other providers). Referrals to other providers would have to be done separately, perhaps via GP?
• re IFRs and evidencing clinical exceptionality – she didn’t think we would get IFR approval for Create as SM already have their own treatment protocols for PCOS (i.e. high AMH levels) to mitigate risk of OHSS. (Can share more info about that if relevant for anyone.)

Appointment lasted about 35 mins in total. A lot of that was me asking questions! I got the sense she had expected a quicker appointment, but given how hard it is to get hold of anybody there I made the most of the opportunity to ask!!

Probably not all of that will be relevant (e.g. all the stuff about IFRs and PCOS), but just leaving it here anyway in case it’s useful for anyone else who stumbles on the thread.

She was very nice by the way, so better than the initial baseline app :)

@RingLightLight hopefully they can get your partners SA done quick! Might be worth trying to book an appointment for a couple of months time now to discuss results as that's something we had to wait for after my boyfriends second SA, they told me I didn't need to book an appointment before it was done so left it until after and it took 3 months to get one! (that was Oldham hospital but guessing SA would be the same) good news though that there is no wait time to start IVF x

Hi! Thank you so much for sharing that! I can understand it must be frustrating but hopefully still not long to go until you can start treatment 😄 I’m so glad to hear that there are no waiting lists for the actual treatment!
on my appointment letter it also doesn’t mention anything about bringing my partner but when I was confused about this as we were referred because of my partner so I rang up and then the receptionist confirmed that we must both be there, if I didn’t ring I wouldn’t have known either which is so frustrating as it’s their job to give us these details. Oh well! At least you know it’s not too long now and you’ve asked the questions you had AND you know the funding has been approved which is brilliant!
Did the Dr mention anything about consent forms?

Thank you for sharing you appointment! I’m really surprised they didn’t ask your partner for a SA when you had your baseline tests but hopefully won’t be long to get one. My partner was asked to come in for a second one in December and was given an appointment in February. So hopefully you only have to wait a couple months which I know will be frustrating but knowing there is no wait to start treatment sounds promising.

I rang create yesterday to make sure they received our referral however she said it can take 2 weeks until they receive it. I think it might go to a central hub who then distribute them to the relevant areas (probs wishful thinking) but it’s been a week since ours were done so will see how next week goes.

I did a subject access request from SM as I wanted to see my results (and also as we are going private also it saves me from having to do the tests again). My AMH is 13.3 so I am eager to just get started tbh. We have a consultation with Manchester fertility booked for Wednesday so I think we are just going private and if NHS do get in touch really soon we will obviously go down that route but we don’t want to wait anymore 😂 also as we need donor sperm we just want to find out more about that route

Hey OP @RingLightLight ,
Hope you don't mind me commenting but I'm in a very similar process and waiting for my consultation with SM.
Did they mention why they hadn't offered any ovulation induction treatments such as Clomid for your PCOS before IVF? I have PCOS and I'm hoping they'll offer me something to try and stimulate ovulation before going straight down the IVF route

Hiya! I assume it was because I was 39 on referral, so went straight to ivf. Although have not found them very forthcoming with explaining things – this is just my assumption.

When I asked the consultant later on (after ivf had already been offered) about first line options such as metformin, clomid, etc. (basically stuff that involves sorting my ovulation naturally), she said the average success rate for ivf is 1/3 and for medication 1/6. So I pressed on down the ivf route.

Also, with age generally, the reason for the decreased chance each month of conception and increased risk of miscarriage is related to egg quality. So even tho ovarian reserve might not be an issue with PCOS, doesn’t make sense to postpone ivf (in my case).

When I asked about metformin, she also said that many fertility drs prefer inositol (OTC supplement), which I am already taking (and which did result in ‘normal’ periods with ovulation – pretty sure I wasn’t ovulating before – albeit still somewhat irregular).

I‘ve already had egg collection and fertilisation now and am waiting to do a FET transfer next month. It was not taxing at all – medications were fine, egg collection was fine. Worst I had was a bit of bloating!

So if I was younger I think I would still take IVF over ovulation induction. You essentially get to freeze your eggs.

hi @RingLightLight ,

Thanks so much for your helpful response, really appreciate you taking the time and it’s interesting to hear the approach/some of the stats they gave you in terms of ovulation drugs.

I’m currently 30, but I expect I’ll be 31 by the time we go back for our consultation (hoping it will be in the next couple of months but let’s see!), so I‘ll be interested to see if they do offer any alternatives based on my age as I’ve always just assumed clomid would be the first step, but who knows. It’s really interesting to hear that even given the option you’d still go down the IVF route though, and definitely given me food for thought.

I think because I’ve always had ovulation drugs as a first step on our assisted fertility journey in my head, the thought of potentially being offered IVF at our first consolation feels as though I haven’t mentally prepared for that scenario but I guess it’s maybe I should prepare myself for that and as you say, could be a much quicker and less tormenting journey in the long run.

Also really great to hear you have found the IVF journey such a breeze so far, I’m glad it’s been positive for you and fingers crossed for your FET transfer next month.. sending you lots of positive energy!! :)

Oh also @RingLightLight i take inositol too and have done for a while.. I’ve found it makes barely any changes to my long cycle and I’m not sure I’m even ovulating. Is there a certain brand you found helped you in regulating your cycle?

I’m also starting acupuncture in the next few weeks in the hope that could help to regulate them because they’re all over the place!