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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

Manchester NHS IVF - experiences?

140 replies

RingLightLight · 09/06/2023 14:00

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

OP posts:
RingLightLight · 09/06/2023 14:14

Essentially I guess I’m wondering - is this going to be a costly (time wise) waste of time? Should I look at private options sooner rather than later?

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Lyrabee · 09/06/2023 14:49

Hi @RingLightLight I guess if you want an idea of timescales, I attended St Mary's for my bloods/urine/US scan back in November 2022. My husband went for his tests in January.
We got a text message asking if we still wanted a follow up and finally spoke to a consultant last week.
The consultant actually told us we weren't eligible for treatment before calling me back the day after to retract that info!

Because we knew of the wait times, we had a consult with Care Fertility in December, did some blood tests and actually commences treatment in February. We are now in our second round with them which we have paid for but they do NHS funded also so I'm going back to the GP if this round isn't successful and getting referred to there because they have my frozen eggs.

I would definitely have a look at your options lovely if you are anxious to get started. But I know private is expensive. A colleague of mine went to St Mary's and mentioned its quite a brutal process to get on a cycle as they only have so many slots each day which totally put me off, I didn't want extra stress from it

RingLightLight · 09/06/2023 15:22

Lyrabee · 09/06/2023 14:49

Hi @RingLightLight I guess if you want an idea of timescales, I attended St Mary's for my bloods/urine/US scan back in November 2022. My husband went for his tests in January.
We got a text message asking if we still wanted a follow up and finally spoke to a consultant last week.
The consultant actually told us we weren't eligible for treatment before calling me back the day after to retract that info!

Because we knew of the wait times, we had a consult with Care Fertility in December, did some blood tests and actually commences treatment in February. We are now in our second round with them which we have paid for but they do NHS funded also so I'm going back to the GP if this round isn't successful and getting referred to there because they have my frozen eggs.

I would definitely have a look at your options lovely if you are anxious to get started. But I know private is expensive. A colleague of mine went to St Mary's and mentioned its quite a brutal process to get on a cycle as they only have so many slots each day which totally put me off, I didn't want extra stress from it

Thank you so much for your reply! I have felt hesitant about the vibes from st Mary’s… I have been going there for years for colposcopies and know they don’t answer phone most of the time. I asked on the phone when they offered the appointment this week what the ultrasound would be looking for and the receptionist told me my reproductive organs 🤨

I asked the lady taking blood today about time frames and it was very vague. I don’t even know what tests they are doing – there has been no info at all, just wait 12 weeks. I just don’t want to go down this route with them to be told yeah sorry no in 3/6/9 months.

I am new to all of it and there is no one really offering any guidance on what to expect. It’s just - someone will be in touch in the next 3 months and you’ll go from there.

But there’s no overview of timelines, criteria, like a decision flowchart.

I really appreciate your reply!

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Lyrabee · 09/06/2023 16:54

@RingLightLight
I just haven't heard the best about them tbh. The lady who did my scan was fab and very chatty though.

The bloods are just checking AMH levels and a few other bits and the scan was to count your follicles and have a general look to make sure everything is clear :)

marshk · 09/06/2023 17:14

Hi both - we've just been referred to St Mary's having had tests done privately previously. It's interesting to read your experiences. We've got an appointment on Monday with Manchester Fertility as think we are going to go privately as fed up of all the waiting already and from the sounds of it, it's probably the best idea!!

RingLightLight · 09/06/2023 18:55

Lyrabee · 09/06/2023 16:54

@RingLightLight
I just haven't heard the best about them tbh. The lady who did my scan was fab and very chatty though.

The bloods are just checking AMH levels and a few other bits and the scan was to count your follicles and have a general look to make sure everything is clear :)

The lady why did my scan was lovely too! I wonder if it was the same one :) Thanks so much for the info about the tests – I did manage to get through to someone at embryology who shared the information but made it very clear that it was outside of the usual protocol!!!

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Lyrabee · 09/06/2023 18:59

@RingLightLight the whole way of them working makes me nervous!

Good luck with whichever way you go down! The lady at work did get pregnant on her second go with them.

CR7 · 09/06/2023 20:01

Had a crap experience at st Mary's. I ended up
going private with Care as I only got one NHS round. Now don't get me wrong; I paid thousands to Care. But omg what a difference. St Mary's actually sent my information to another patient. I had no idea until they called my name out at the reception desk and this random woman said "excuse me, I have your notes. They were stapled to my letter". Her appointment was the one after mine, hence the admin mix up. It was awful from start to finish.

Lyrabee · 10/06/2023 10:54

Hi @marshk I had all my tests done privately too while waiting for my referral. St Mary's will still give you an appointment for tests with them - they won't take the private ones. It's bonkers really.
Have your tests told you the reasons for infertility?
Manchester Fertility was our second choice, we have gone with Care to start with.

marshk · 10/06/2023 11:56

Lyrabee · 10/06/2023 10:54

Hi @marshk I had all my tests done privately too while waiting for my referral. St Mary's will still give you an appointment for tests with them - they won't take the private ones. It's bonkers really.
Have your tests told you the reasons for infertility?
Manchester Fertility was our second choice, we have gone with Care to start with.

Hi @Lyrabee - that's completely bonkers! I was hoping they'd take the private ones. We've got male factor. My husband had varicocele surgery back in March to try improve things but no drastic improvement yet and to be honest, we're both so done with waiting. What made you choose care first? We've got an appointment with Manchester fertility to discuss treatment on Monday but only really went there because that's where we had our tests done

Lyrabee · 10/06/2023 14:09

@marshk I know! Honestly the NHS is underfunded but they're doing unnecessary tests. All of our eggs are stored at Care, St Mary's said if we want to do our free round with them we would have to go through all the collection again because they won't transfer to them. Honestly it's just so many hoops.

Ours is male factor as well but it's limited mobility so we knew we needed ICSI.

We chose Care because I know someone who used them and recommended them but also when I called around asking about appointments, Manchester Fertility were really dismissive with me and told me they'd recommend I keep trying for 6 more months. It was quite upsetting so put me off whereas the Care lady was really kind and patient on the phone and got me straight in. They all have their pros and cons. Care aren't great at communicating with their various departments lol but we got sorted. We also paid for 3 rounds up front which we will get refunded if they don't work so a bit of a safety net :)

CR7 · 10/06/2023 14:14

I really like Care. There were a few things I needed to pick up along my journey but they got me pregnant in the end! They also offered me duo stim which not everywhere offers. I would highly recommend care. I had some tests done at create and didn't like how I was spoken to a few times or how I had to chase them for results.

Lyrabee · 10/06/2023 19:07

@CR7 that's great to know! I've not heard good things about Create tbh.
We've had to chase a few test results, mainly around Christmas and they've cause a few delays which has bumped our cycle but we are on try number two now! The appointments I've had with Care have all been great experiences

HopeHopeandmoreHope · 13/09/2023 12:05

Hi all,

Jumping into this thread as my next hospital consultation they will be doing my IVF referral, at my last appointment they did say it would either be done through St Mary's or CREATE, just wondering how everyone got on with their clinics?
Also how long did everyone wait from the hospital referral to actually being seen by a clinic?

X

RingLightLight · 13/09/2023 13:17

HopeHopeandmoreHope · 13/09/2023 12:05

Hi all,

Jumping into this thread as my next hospital consultation they will be doing my IVF referral, at my last appointment they did say it would either be done through St Mary's or CREATE, just wondering how everyone got on with their clinics?
Also how long did everyone wait from the hospital referral to actually being seen by a clinic?

X

Hello! I was referred to St. Mary‘s by my GP in March, had an initial appointment there in June, not heard anything back yet, chased with my GP yesterday.

I am looking to go elsewhere once funding is assessed.

The appointment at SM had an eerie feel to it. I’d been told on the letter in March to not chase until xx June. When I rang, they said – we’ve got multiple slots free tomorrow, which would you like? So no idea why I was required to wait 3 months for a blood test and US.

When there, no one really explained anything about anything – not which tests were being done or why, what the process would be, where to find info, etc. I didn’t actually ask for an IVF referral specifically, I just got some bloods done by my GP as I have PCOS, and progesterone came out outside of range. No one at SM mentioned a thing about why I was there or anything to do with my results, what the results mean, and the potential options. It seemed to be just assumed I wanted IVF, as I was directed to take a funding application form.

When I did ask (very nicely) where to find info and what the approximate time frame to hear back would be, the nurse (I think she was a nurse) went decidedly chilly. Another nurse in the room also interrupted our conversation frequently to talk about the weather, gossip about someone who worked upstairs, etc (eg - nurse asked me a medical question - other nurse butted in to talk about another member of staff. I asked a question about processes - other nurse butts in to ask me if she should wear a coat).

When I’d asked the person on the phone the day before what the US would be looking for, she giggled and said ‘They look for your reproductive organs’ 🙄

Once they’d taken blood they said I must pick up a form from reception on my way out. ok (no mention of what form, just what colour it was). On the way out, I asked reception, and apparently no one knew what form it might be – cue discussion and bafflement. Kept asking me what it was, I didn’t know, just that I must take one and fill it in. Finally – oh, do you mean these ones? There’s a stack of a single type form on the front desk – no others. Pick one up, it’s an IVF application form, it says clearly on it that if you don’t complete and return one within xx days (maybe 14) of your appointment, you’re taken off the system and you won’t hear anything further. So nice that they’re all taking it so seriously!

When I called back a few days later to check what blood tests they were doing, every single one of the 6 extension options rang out each time I called, for several days. Finally someone in embryology picked up, told me that they weren’t supposed to answer any questions, but would make an exception. (I just had the standard bloods, so nothing particular to me).

I didn’t get the impression that they really give a shit.

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HopeHopeandmoreHope · 13/09/2023 14:06

@RingLightLight oh my gosh it sounds like a nightmare! I have heard a few tales about them not being the most organised and people chasing for appointments!! I am really hoping our referral is accepted by create as it sounds like SM seem to add more stress to an already stressful time. Fingers crossed for you manage to get somewhere else! I'm about 40 minutes from SM on a good run so I can imagine with traffic it's a drag of a drive, obviously I'm willing to do the journeys, I'm willing to do anything at this point but the lack of organisation really worries me!

RingLightLight · 13/09/2023 14:58

HopeHopeandmoreHope · 13/09/2023 14:06

@RingLightLight oh my gosh it sounds like a nightmare! I have heard a few tales about them not being the most organised and people chasing for appointments!! I am really hoping our referral is accepted by create as it sounds like SM seem to add more stress to an already stressful time. Fingers crossed for you manage to get somewhere else! I'm about 40 minutes from SM on a good run so I can imagine with traffic it's a drag of a drive, obviously I'm willing to do the journeys, I'm willing to do anything at this point but the lack of organisation really worries me!

Yeah, if there are other options available I would explore these. I’ve heard Care is good, and I’d like to be referred there. Worryingly, my GP didn’t really seem to know much about how it works either, but at least he is very nice!

Have you heard much about Create?

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HopeHopeandmoreHope · 13/09/2023 15:27

@RingLightLight Good luck! My GP wasn't much help either, they didn't seem to know much about infertility at all to be honest.

I've read much better results from create, I did fill in an online request to ask if there was anything we could do from our end to help us to get accept (a little bit of desperation!) and they called back the next day and just explained it was all down to local funding, she did say however if we was referred to somewhere we wasn't comfortable with we can appeal it x

Lyrabee · 13/09/2023 18:16

Hi Ladies!
I had an awful experience having my initial tests through SM and my friend had a wore experience doing the whole thing with them. They lost her records and she had to go to the reception every day and complain until they found them ... on a desk somewhere.

I've gone to Care as my private consultant recommended them x

RingLightLight · 13/09/2023 18:54

Lyrabee · 13/09/2023 18:16

Hi Ladies!
I had an awful experience having my initial tests through SM and my friend had a wore experience doing the whole thing with them. They lost her records and she had to go to the reception every day and complain until they found them ... on a desk somewhere.

I've gone to Care as my private consultant recommended them x

Hi Lyrabee! Omg that’s awful… based on what i’ve seen, I have to say I’m not surprised :( So sorry you and your friend both had such poor experiences.

The vibe I got from them was contempt to be honest. I did not like being there and would not like to go back.

How have you found Care so far? I’ve made an initial enquiry with them and have a good impression so far.

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Lyrabee · 13/09/2023 19:26

@RingLightLight tbh with SM I just felt judged and when I said anything they just kind of huffed at me and sent me on my way. They also incorrectly told us we were eligible and had to ring me back to correct themselves. Oh and how many times I got told about BMI needing to be under 30 (which mine is). They reiterated it so so much as if everything was my fault because I'm a little pudgy!

I also spoke to Manchester Fertility and they were horrible over the phone, they just told me to keep trying naturally.

The staff at Care are lovely, they take the time to look after you. I will say you have to nudge them a bit to get going but that could have just been because I was trying to start in December lol (not that that's an excuse!). I did my stim drugs in feb/march so not too long of a wait and they've got my frozen embryos. They can also offer a load of extra tests which I'm currently waiting for (but I'm paying). Honestly, the nurses are amazing there, they answer the phone quickly and answer as many questions you have every time.

I know some people will have had a different experience and so far I haven't been successful but that's not down to the care I've received (hence the extra tests). But I've had a fab experience with them x

RingLightLight · 14/09/2023 09:01

HopeHopeandmoreHope · 13/09/2023 15:27

@RingLightLight Good luck! My GP wasn't much help either, they didn't seem to know much about infertility at all to be honest.

I've read much better results from create, I did fill in an online request to ask if there was anything we could do from our end to help us to get accept (a little bit of desperation!) and they called back the next day and just explained it was all down to local funding, she did say however if we was referred to somewhere we wasn't comfortable with we can appeal it x

That is good that they took the time to call and share some information, a big thing I’m finding is that no one (NHS side) is forthcoming with information…!

That is good also to hear you can appeal a decision if you’re not comfortable with it. x

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HopeHopeandmoreHope · 14/09/2023 09:37

Lyrabee · 13/09/2023 19:26

@RingLightLight tbh with SM I just felt judged and when I said anything they just kind of huffed at me and sent me on my way. They also incorrectly told us we were eligible and had to ring me back to correct themselves. Oh and how many times I got told about BMI needing to be under 30 (which mine is). They reiterated it so so much as if everything was my fault because I'm a little pudgy!

I also spoke to Manchester Fertility and they were horrible over the phone, they just told me to keep trying naturally.

The staff at Care are lovely, they take the time to look after you. I will say you have to nudge them a bit to get going but that could have just been because I was trying to start in December lol (not that that's an excuse!). I did my stim drugs in feb/march so not too long of a wait and they've got my frozen embryos. They can also offer a load of extra tests which I'm currently waiting for (but I'm paying). Honestly, the nurses are amazing there, they answer the phone quickly and answer as many questions you have every time.

I know some people will have had a different experience and so far I haven't been successful but that's not down to the care I've received (hence the extra tests). But I've had a fab experience with them x

Is this through the NHS, except the extra tests you are paying for? Sorry if you've already said and I've missed it x

Tryingtobepatient001 · 14/09/2023 10:13

Hi All,

Can I jump on this thread? Also in Manchester and looking to start IVF soon. I've had my bloods and scans with SM back at the start of July, I gave them a call a couple of weeks ago re; my consultation and was told to call back Mid-Sept once it's been 10 weeks, to book in at the start of Oct. I have no idea yet if we're eligible for funding - on paper I think we are? Would we have had these initial tests if we weren't?? Like another post, it seemed like SM just presumed we would have IVF, even as I was having my bloods taken the nurse said about reviewing my results then starting.
I don't know whether to just bite the bullet and go private now. Its so frustrating if we do get a round and could potentially save the money, but I'm not sure my stress levels could cope with the NHS? I'm currently looking at Care Fertility and Create Fertility - Manchester Fertility doesn't seem to have as many good reviews? Any recommendations?
Thanks so much!

RingLightLight · 14/09/2023 10:49

Tryingtobepatient001 · 14/09/2023 10:13

Hi All,

Can I jump on this thread? Also in Manchester and looking to start IVF soon. I've had my bloods and scans with SM back at the start of July, I gave them a call a couple of weeks ago re; my consultation and was told to call back Mid-Sept once it's been 10 weeks, to book in at the start of Oct. I have no idea yet if we're eligible for funding - on paper I think we are? Would we have had these initial tests if we weren't?? Like another post, it seemed like SM just presumed we would have IVF, even as I was having my bloods taken the nurse said about reviewing my results then starting.
I don't know whether to just bite the bullet and go private now. Its so frustrating if we do get a round and could potentially save the money, but I'm not sure my stress levels could cope with the NHS? I'm currently looking at Care Fertility and Create Fertility - Manchester Fertility doesn't seem to have as many good reviews? Any recommendations?
Thanks so much!

Hiya! I’m in exactly the same position as you currently. I just spoke to Create this morning, and apparently I would need to request a referral from my GP, it would then take 2-3 weeks and they would book me straight in for a scan and bloods (for reasons that aren’t clear, they won’t use the results provided by SM). On the plus side, they said they have good availability in Manchester so no waiting.

I find it so odd that so little information is forthcoming from anywhere. My GP didn’t know much about how it works. I sort of thought I had to wait for the funding decision initiated via SM before looking at referrals elsewhere. However I’m not sure that’s actually the case. (I suppose I expected SM would prescribe clomid or whatever first (I have PCOS) but with the amount of time everything is taking it seems like that would really waste a lot more time.)

I don’t know much about it, but if I was starting again at the beginning of this year, I would research Care and Create, and ask for a direct referral to one of those from my GP. There is no way I want to go through SM, and the process is extremely slow – particularly for something that is fairly time sensitive. It wouldn’t be as bad if they were prepared to give an overview of timelines, but they weren’t (only how long you have to wait before nudging them about the next bit – so it’s – expect to wait 3 months for blood test… then we’ll be in touch again within 12 weeks…. but zero transparency or overview of the full process from start to finish).

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