First fertility appointment this week

[thislittlebird]

I’ve had a private appointment before for some tests but my first NHS one is this week. Anyone else at this stage who might like to join a thread of people at a similar speed?

Hey! Had my first private appointment last week or so. Am moving forward with ABC IVF. Have an NHS appointment 11th May (at a private clinic) but I know that the wait time for all to be approved is long so doing a private one in the meantime.

We are unexplained infertility all tests so far (done on NHS and privately) have come back normal. I'm 30 and DH is 31. Been trying for over a year (tracking etc) but haven't been on any contraception since 2017.

What's your story if you don't mind me asking?

Hey @Hoping4baby21!

Did you get referred to the private nhs clinic via your local hospital? It seems to work differently everywhere! Wait times are confusing, I’m hoping for some clarity in that when I go to the appointment Thursday.

What made you decide to go with ABC? We’ve discussed doing a private round in the meantime but need to chat to them this week first.

Unexplained is very frustrating. It just does not make sense why this won’t work. We’re explained (I think) but it took a while to get there.

We’ve been trying since October 19 officially but we stopped using contraception some time before that. I was 36 when we started trying and I’m going to be 38 this month which fills me with fertility dread, husband will be 40 this year.

Because we were over 35 we went to see the GP in July 2020, did some tests, got results in August from the receptionist and she said they were “fine” (to both of us, separately) and I trusted that and we carried on trying. By December I decided to request the results in writing because we still had no BFP. Turned out the results were not fine, I had rather low progesterone and he has low motility. I got referred after our next set of tests, then had private AMH and AFC tests in the meantime (which were actually “fine”). Finally seeing the nhs fertility clinic for the first time this week and still feels unreal after all this waiting.

What tests have you had so far? Sorry if I’m asking a lot of questions!

@thislittlebird not a problem, we are both new to this so the more information we gather the better .

So I went to the GP in Aug 2020 for tests (family history of PCOS and fibroids) so I was worried that might be a problem and wanted to know sooner rather than later. We did the battery of blood tests, I had 2 ultrasounds and DH had a SA done. Tests came back like you said "fine". I requested my results to be sent to me upfront so I could do my own research, my DH morphology is on the lower end of normal but shouldn't be a problem apparently. All other parameters are above normal. My tests were fine but turns out my TSH was on the higher end, they like under 2.5 for pregnancy and mine was 2.1. GP said he would refer me to fertility clinic which he did in Dec (that is how long all those tests took to get done and come back). Then in March I called for update on referral as we hadn't heard anything. In the meantime I found out that private clinics also take NHS patients, so I asked my GP to refer me to a private clinic that is local (thought it would up my chances of being accepted and seen sooner - no idea if it made a difference. Within 2 - 3 weeks I had a letter from the private clinic saying that I had an appointment. That is on 11th May. So I will have never been to my local hospital for any of this. Mainly due to cover they have outsourced all their stuff like scans.

I know that from appointment to applying for funding to that funding being approved can also take time, so in the interim we are doing a private cycle. Where I am we can have 2 private cycles before loosing access to the free NHS round.

Unexplained is very frustrating but I am trying not to focus on it. it does add an added level of worry because whatever is going on we don't know how much impact it might have so what if they discover it during IVF and it will make our journey harder than anticipated despite all our tests results looking promising.

So we decided on ABC because initially I was drawn to Create as a result of their mild IVF. I know other places do it but I scoured the HEFA to compare clinic success rates and scores, also online review etc and they outweighed the others for me. Before knowing we would need IVF I wasn't keen on putting all the injections and stuff in my body, I am firmly against the pill or any form of contraception after learning more about the actual effects on your body etc. So it went against that for me, but I also knew that would I be faced with the real possibility of not having a chilled I may feel differently, which I do obviously .

Because of this it was important that I had the least amount of drugs necessary but still able to get results. The stats and research behind Create and ABC support this so it made sense. Then after initial appointments with Create we spoke with ABC as well. If you meet their criteria (which we do) then they offer similar treatment but for a fraction of the costs and as we are self funded it made sense.

Should this not work I would consider a more aggressive approach but will cross that bridge if we get to it.

Sorry for the absolutely ESSAY that this turned into. If I was you I would look into private clinics locally who take NHS patients and ask your GP to refer you there. Mine was really good which surprised me and he was so willing to help. So far it has reduced wait times for us.

If you can in the meantime self fund, that is something to consider as well. This journey is hard enough without all the extra waiting and fobbing off from Dr's not giving you the right information such as saying test is fine when it isn't necessarily fine.

Hi @Hoping4baby21. Sorry for the long delay. What a nightmare of a week it's been.

Let me try to reply to you and then update you on our "progress".

Ok so that was a similar time we got our tests done, results were in in August 2020. It's good that you got the results. I wish I'd done that, I was naive and trusted that they were giving me the correct results/interpretation. I didn't realise GPs could refer you and I honestly think mine would say no (they're absolute sh*te) but I wish I had tried this in the the last few months. You must have just had the appointment now, how did it go?

What area are you in? Our CCG is in London and the guidance says 2 private rounds before voiding the NHS one, but I want to know if they're funny about all this really. We are older and don't have time to wait around, so I'm really keen to get ~something~ underway, I don't want to keep treading water.

I was drawn to Create too but decided with our issues it might be best to talk to the Lister (hoping for an Access package) who offer mild but because of my low progesterone I thought the best bet was to go in open minded and ask what they recommend. Have looked up a good doctor there (Dr Alison Taylor) and requested an appointment. I have also booked a urologist appointment for May 26 with my husband. All very expensive, but hoping if we can get tests done for him before the IVF we'll hopefully be able to deal with issues and avoid so many rounds.

So, yeah, since I last posted I've looked at clinics, budgeted for private, and decided I would like two private rounds initially. I should have a good egg reserve (AMH 36/AFC 28), I'm hoping I'll be able to get a good number (whether they fertilise is another issue) from two rounds, but also two wouldn't void the NHS option if it's still a thing for us.

The appointment I had was horrendous. Wherever way I turn it's just an appalling service and I'm fed up of feeling like it's always me that gets the crap GPs and doctors. We both have poor test results (Progesterone of 10, motility 9%) and when we saw this gynaecologist she was horrible. Dismissive, didn't ask us our history, told us we were "unexplained" and offered a day 3 test and "if I want" I can join a long wait for a laparoscopy. No help offered whatsoever, sent back to a our almost non-existent GP who we can't speak to because a receptionist gets to decide everything nowadays. She also clearly knew we'd complained and it was very uncomfortable.

I'm exhausted. It's been such a horrendous, emotional week. I've sent another complaint to PALS today and asked for a second opinion. I've changed GPs, I've booked the private urologist, and I've contacted the lister for an initial consultation. I really hope we can start to make some progress now.

@thislittlebird wow! I'm so sorry that your GP and the Gynae are not taking things seriously! I hear that about the receptionist being the gatekeeper! It is very annoying at the moment.

We are in London as well with NW London CCG from the document it is the same as you 2 private before you void NHS round. I don't know if they are funny about it but it is written in pretty plain English what is there to be funny about?

Should ABC not work I would likely do a access round with either money back or multiple rounds. I would prefer not to go NHS because my experience with them is not great, scans with no discussion of what is going on with your body just told to talk to doctor. Long waits, needing letters to request blood tests which you need to proceed so much red tape and it all just adds to the stress.

How can the gynae say unexplained if the motility is 9% I would want a second opinion and like you I would go private. I guess they have said you will need ICSI? We had 2 scans on NHS for me and they told me NOTHING other than it's all normal. One scan still same outcome normal but I have certainty of my results I now now my AFC (25) my lining is good no PCO, fibroids etc.

I'm sorry this week was so exhausting and I'm this process we are trying to avoid stress like the plague aswell and things just keep popping up. People have good things to say about lister so wishing you all the luck with your cycle(s).

We are just about to start on our short protocol AF is due tomorrow I'm spotting already a little.

I saw the NHS consultant this week and he was just as stumped as anyone else why I'm not getting pregnant. He suggests HSG land lap. I don't really want to do an invasive surgery especially if it doesn't change the outcome. Also abdominal surgery can result in adhesions which cause issues with fertility so why introduce that if there isn't a strong case for endo or something else? So I'm trying to get a follow up call with him to ask him these questions and see if we can just do the HSG unless he can convince me that the lap is beneficial and worth it. Ideally I'd want a HyCoSy. I will say I got my GP to refer me to a private hospital so that might be why my appointment went better. I'd also feel more comfortable having a private dr do the surgery.

@Hoping4baby21 delayed reply again! I wait until I'm on my laptop to write the essay lol.

We're SE London CCG. I'm going to just crack on with private for now, PALS haven't even replied to me, it's all very strange. You're right about it adding to the stress, I'm very annoyed really that I have to fund tests myself that they should have given me months ago, but here we are. We've been trying (with some months off) since October 19 and we've had next to no investigations, it's crazy.

I don't know how Access works yet, but we've had our first consultation with the Lister doctor, and my understanding is I have to apply to them to accept us once I've had that appointment. Bank holiday has delayed things but she'll likely write us a letter summing up the appointment.

What scans did you have on the NHS? All I've had since we started fertility investigations is 2 blood tests! It's bonkers.

Since I last posted we saw both a urologist and the ivf consultant. Both were very positive experiences and the benefit of paying is getting to choose who you see. We saw Mr Ramsay, the urologist, and he's doing tests on DH and an ultrasound scan of his testicles to measure a small varicocele. Then having advanced comet SA as well as a few others, hoping we'll get some answers from these tests.

The we saw a consultant at the Lister and she was great. We're going to meet again once all the test results are in but she was very positive, said my high follicle count for my age improves our chances which is good. Was also very pro-natural conception and said if DH results are good we could try Letrozole + trigger shot + progesterone + monitoring for a couple of months, but otherwise straight to short protocol IVF if they're still suboptimal. Part of me wants to try the Letrozole in case it works, but the other part feels like I've wasted a lot of time already and I'm not getting any younger (turned 38 in late May ). The decision will be made for us, I guess, I can't see his sperm having improved that much really. Either way, we can't start anything until August because we're away for a week in mid July. I would like to start something in August.

Lister doc was baffled as to why we were classed as unexplained by the NHS, as was the urologist, both agreed we weren't, but she's going to write us a letter so we can challenge our classification of unexplained. If they even care, as I say, never even heard back from PALS, it's all very odd.

I didn't realise your IVF was so soon, how are you getting on now?

I agree re the lap. The NHS told me I could have one (or join a waiting list for one) but I have mixed feelings. Yes, I might have a uterus full of endometriosis, but there's nothing to say I do have that. Not sure about risking a surgery just yet. So are you doing private and nhs stuff right now? I'm booking a private hycosy next week. I don't really want it but the Lister doc said to have it, just wish the NHS had offered me one. Oh well, there's no waiting list this way I guess, just a price tag.

@thislittlebird I'm glad things are progressing for you finally and that you have a timeline. I'm currently in my TWW and hoping it was a success. Really trying not to symptom spot but we all know how difficult that is. I've convinced myself I was pregnant many times before with nothing so I don't trust myself at the moment!

I'm exactly the same with you and a lap and have actually considered doing a HyCoSy if needed later to avoid the lap. They just keep telling me there is a tiny chance that the HSG and HyCoSy don't pick up a hydroshalphinx or whatever it is called liquid filled tubes - like 10%. To have a full on surgery for 10% seems excessive to me. It just doesn't sit right. Because I have had chlamydia in the past is theirs reason for pushing it apparently. But I keep coming back to unless of course I have liquid in my tubes the outcome so's IVF either way so whyyyyyy do I need surgery and no one can answer me that.

I only had ultrasound on NHS twice no idea why I needed two. Think it was an error but as always they don't explain anything. It's a shame you have to see fund all of this when your GP should be doing more. But at least you are making progress now. Although it is money I'm honestly quite put off with my NHS experience (except my GP) so despite extra cost would rather go elsewhere and pay.

So my NHS appointment took sooo long to come through we went private in the meantime. Now appointment has come through i have gone to them to hear what they have to say don't want to be pushed back to the back of the queue if we cancel etc. But here's to believing we won't need it!

I wish you all the best!

Hi - can I jump in? I was just about to create a post on infertility appointments, then saw this!!

We've been trying for over 2 years now. Started the usual GP testing in August 2020 and got referred early January. We've been waiting for ages, and were tempted to go private, but then got our referral through - we have a telephone consultation with the fertility clinic this Thursday (local NHS). I'm absolutely terrified all of a sudden after waiting so long! Do you have any words of wisdom on what might happen and what to say? I feel like there will be very little sleep between now and then!!

Bit of background- I'm 32, DH is nearly 29. Trying for 2 years and 2 months without success. My blood tests have come back fine, I had an ultrasound that came back fine as well - I also just so happened to be ovulating that day too which was picked up! DH has had 2 SAs, both of which has shown low morphology (3%), and we've booked him in for another one a week in Wednesday to see if the vitamins we've been throwing at him have had any impact 😂 I also know I'll need to lose weight for IVF - I managed to lose 20lbs to get my BMI below 30 over the last year, but then stress eating has tipped me over again so that's another worry!

It'll be nice to have some people to share the (horrific) experiences - infertility is a crap club to be in but at least we don't have to suffer it alone!

Hi @Trudycat89! Your initial timeline is very similar to ours. We started investigations July 2020 and had a referral this Feb. I don’t think my experience is very typical but I guess my advice based on that would be make sure you know what you want to get from it and take notes if need be. They told us we were unexplained which I was not expecting at all and I just lost it from then on in and didn’t get to ask what I wanted to. Be prepared for all outcomes I suppose, but you’ll likely get a good person.

Were your docs worried by the low morphology? Mine have been very blasé about my husband’s very low motility.

I need to lose weight too but I’m struggling with the motivation. My bmi is below 30 but not as much as i would like it to be, it’s easily done.

This whole journey is terrible, we need all the support we can get!

@Hoping4baby21 yeah I totally get that liquid in the tubes thing. I don’t see the point for a small chance and I’ll likely need ivf anyway so 🤷‍♀️.

Wish it was me, a chance would be a fine thing for an NHS ultrasound. You’re right though about being put off, I’ve had a bad experience to date, and almost no experience at all because they’ve just dismissed and ignored me.

The biggest worry for me right now is the private urologist is going to say we need a varicocele surgery for my DH. He had one picked up on a scan, but getting it fixed is a round of ivf basically. It’s really stressful. Going to have to decide whether to do one as it stands and just see how it goes or spend thousands on a small surgery for him. I hate all of this.

It’s all moved quickly for you, I’m envious af! Feels like my life is one big wait lol

@thislittlebird I had the appointment today and they have said we will need IVF. I had such low expectations of the meeting so was really surprised they said it - they didn't suggest anything else, just straight into it essentially!

She's booking us in to have a face to face consultation to discuss the IVF and plan from there in two months. In the mean time, I'm having some blood tests repeated and another ultrasound. It also gives me some time to lose some weight 😅

I feel a huge sense of relief that we're moving forward, but also in the back of my head I can feel the fear creeping in about the IVF. But I'm going to try not to worry about it too much, there's nothing I can do now until the next appointment.

They were quite positive about my husband's low morphology actually- they said that with everything else being ok with his sperm that it shouldn't be too much of a factor, and that if we tried for 5 years (!!!) we'd probably have a spontaneous pregnancy. Obviously we're not waiting for that though and it is enough of an issue for them to suggest IVF 🤷🏼‍♀️

Sending lots of luck to you and the tests and treatments. Hopefully it'll start moving along a bit quicker for you soon!

@Trudycat89 wish I’d had low expectations. I so excited and they told us to come back in 18 months despite our issues 😭. Good that they’re speeding it up I guess, do you know what made them do that?

I’ve started my lose weight plan too! Going away in July, want to shed a few pounds before then, maybe a bit more before ivf.

My ivf packs arrived in the post today from the private clinic. It was nice to see them, I’m so tired of all this and just want to see progress now.

The urologist we say basically said the morphology isn’t a big issue, he wasn’t too worried at all about that being a bit low. I’m really hoping we can have some success in one or two attempts but I fear we won’t be that lucky. We have to wait a few weeks for all his test results and then meet again.

@thislittlebird not much to be envious of over here it didn't work for us this time so back to the drawing board. I know I should be glad we have 2 frozen embryos but I'm not feeling that right now. Soon hopefully. So now I have to have the lap and HSG surgery to make sure nothing is going on in there (that will be on NHS) and then we can make a plan for the transfer of our other embryos. At least that is what I know logically and I'm glad things will be delayed by a few months as I don't feel ready for another transfer just yet.

Hope this all starts to move a bit faster for you. I do wonder now if I hadn't taken enough time to process what was happening so another side of the coin is that the time you have gives you that which might be a good thing.

@Trudycat89 it's so odd that all three of our times lines are sooo similar lol! Best of luck to you! I felt the same going into my consultation thought it wouldn't get us anywhere and when they suggested IVF I was surprised because it meant a plan. I truly expected to be fobbed off.

@Hoping4baby21 oh no, I’m sorry to hear it didn’t work this time. I know it will feel horrible now but you have those two frosties to try again with. Sounds like a good plan to give yourself a breather. I’m trying to read as much as I can on it al before we begin, not much more to do with our time.

I have a lot of questions, if that’s ok?

What protocol were you and how many eggs and embryos did you get initially, if you don’t mind me asking? I’m trying to be realistic in my head about how they’ll drop off when we get there. How was the process for you? How was ABC?

A positive of all this is I assume you had a fresh transfer and frozen have a better success rate so fingers crossed for next time.

I have my hycosy tomorrow at the Lister and I’m dreading it tbh. Been trying to get my private prescription this morning and struggling, was hoping to avoid their pharmacy in case it’s more pricey at the private hospital.

Were you on the lap waiting list already? I need to move to an area where nhs doctors are more helpful 🥴

@thislittlebird so I was on short protocol mild IVF. 150iu of Ovaleep. I had injections for 9 days as some of my follicles were ahead and I think they worried about overstimulating the bigger ones. I think got 7 eggs collected, 4 fertilised and 3 made it to day 4 blasts. 2 excellent and 1 good. I think only 4 fertilised as the others weren't mature enough but that is just a guess I will be having a review and finding out what they think. But I think it's a good sign that 3/4 made it to day 5 which is rare. So I don't have realistic experience of drop off as my final one dropped off on day 5. That isn't typical to be honest. Hoping it's a good sign of egg quality etc.

I think from what i have read 60-70% fertilise I was on track with that, and then you could expect up to 50% drop off by day 5 of those fertilised.

Abc was fine no issues with their service or decisions or anything like that. Nurses were lovely. My only question mark is that there is no monitoring in 2ww which might be normal but I am curious how they can make a suggestion of what to change next if they don't know what was going on with my hormones etc. I may want more monitoring around transfer than what I had next time to make sure we transfer at the best time. So wondering if I switch to Create fertility if they do more monitoring etc as opposed to going with ABC again. I'm not sure though.

So because i got referred to the private clinic for the NHS tests I think it had all moved MUCH faster no waiting list as it were but did need to pick a date that he was available. Lucky for me it wasn't a long wait. It was booked in before I started this cycle. I wasn't pulling out of anything for exactly this reason as it pushes me right back to square one. Also the private consultant will do both at the same time whereas NHS will do HSG first then Lap. Which just delays things. I also preferred the private consultant.

I heard that the rates for frozen were the same I think it helps that your body is in a more natural state during a frozen. I just really hope we are not one of those couples who need many many cycles and attempts.

Good luck for your HyCoSy tomorrow!