First IVF round - thought it was a su... - Fertility Network UK

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First IVF round - thought it was a success, but lost it very early 💔 Disappointed with the clinic as well...

Lelllow profile image
29 Replies

It was our first IVF round (unexplained infertility) with a fresh, hatching embryo transfer. We had a good chance to succeed, and... the test turned out positive at 11dpt. I couldn't believe it, it was the first time in my life I saw 2 lines, even rather faint! I was sooooooo happy, but then...

The clinic advised testing on day 13 post-transfer, so the test was consistently positive, although it was not getting super dark. So when I called them to say it was positive, they said actually I need to test on day 14, and the given date was a mistake 🤯 So I did, and the line was still there, but not any darker. The clinic (we are NHS-funded) didn't advise any additional testing which I find very weird. They basically booked me in for 8 8-week scan and advised me to continue taking progesterone.

I was concerned the line was still faint-ish and went to a private b-hCG blood test, that returned at 60. Not a huge amount for 14dpt. I called the clinic saying I was concerned about the hCG levels being on the low side and if they could do the test too, which they said they don't do (🤯WHY?!?!?)

48-hours later, 16dpt I took another private test, and it got back at 10... My heart dropped❤️‍🩹 I knew something was off, I felt like my pregnancy symptoms were going away: I wasn't as tired anymore, not bloated, my skin rush from progesterone was fading (I had a bad reaction initially), etc.

Called the clinic, and they just said to stop the medication and expect to start bleeding in the next few days. Again, not even offered for a test to confirm the levels! And then the nurse had thought and suggested doing another urine test to make sure it was not ectopic...

I don't get it how this testing could be left for an ivf patient to self-diagnose and then the clinic just takes my words for granted and does not even check the results! It just blows my mind. I do have another, frozen round with them as a part of my funded treatment, but honestly, I am super concerned about the level of professionalism they leading NHS patients.

I am so heartbroken and couldn't believe my body betrayed me this time and didn't sustain the pregnancy. But also I am so angry and disappointed with the clinic. As if I hadn't taken the private tests I would just assume everything was ok and find out it there was nothing there on the scan 4 weeks later, or spontaneous bleeding.

Did anyone have experience with their clinic NOT checking hCG / progesterone levels post-transfer?

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Lelllow
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29 Replies
Tir-26 profile image
Tir-26

I’m so sorry for your loss, it’s heartbreaking.

My IVF treatments have been with private Clinics, they’ve always asked for a HCG test to be carried out and a second one to see if levels are rising. Some people on this forum will also advise what they’ve experienced too, some clinics may look for urine positive and then ask for blood. I’ve sadly had a few losses and in my experience the NHS don’t want to know anything about HCG levels, it’s not important to them in their clinical opinion. But as I said, my clinic ask for HCG.

Lily_82 profile image
Lily_82

Hi Lena-k,

I am sorry you are going through this. Two clinics I have dealt with so far never checked HCG levels and relied only on pregnancy tests. I had a chemical and on another occasion found out at 7 weeks scan the pregnancy wasn’t viable so totally understand your frustration.

I hope your next transfer work!

Lelllow profile image
Lelllow in reply toLily_82

Thanks for sharing. So devastating... I hope all is well with you now!

Lily_82 profile image
Lily_82 in reply toLelllow

Unfortunately not yet, I had failed 6th cycle recently but not giving up yet x

Skittles11 profile image
Skittles11

Hello, I'm so sorry for what you're going through.

My first clinic did not want to carry out HCG or progesterone testing, they certainly didn't do it as standard. They did on one occasion where I pushed it.

My second clinic does them as standard.

It seems to vary massively which isn't very helpful or consistent xx

Tamaa profile image
Tamaa

Hi Lena-k.. Sorry you had to go through this.Yes, my NHS funded cycle with clinic was the same.. Never tested post transfer for anything. Only relied on what I reported back from my home urine tests.

Lelllow profile image
Lelllow in reply toTamaa

Thanks for sharing your experience! I still struggle to turn my head around why such critical testing or medication adjustment don't take place with NHS funded cycles. It just doesn't make sense - surely simple blood drop isn't that huge expense...

Queg profile image
Queg

Hi Lena K, I'm so sorry for what you're going through. I know this doesn't help now, but next for your next round the GP may be able to help. I had a telephone consultation for abdominal pain and I explained to them how the test lines were weak and this was causing me a lot of anxiety. The GP said they could do the tests. I can't say they will do this for you but worth speaking to them if it happens with your frostie. Again, I'm so sorry for your loss.

Twiglet2 profile image
Twiglet2

I am so so sorry 😢 a chemical is harder than a BFN in my experience, your hopes get raised then dashed!! My clinic (nhs but I’m now privately funding there) also don’t do HCG tests unless you are bleeding heavily or have signs of eptopic. Even when I would happily pay.

To be honest I had a think about when I was in full on panic and mode on my missed misscariage last month of why they don’t and I guess it’s because a test doesn’t change the outcome in anyway and every single women is worried after their BFP about HCG levels so I can imagine it would be quite resource heavy for them and would mean that fewer women are actually able to go through IVF there if they had to use some of their funding to do repeat HCGs after a BFP where there is no concern of medical danger. Doesn’t make it any easier when you want answers quickly and are worried though but that helped me to think like that. I’ve had several chemicals, one in May that played out exactly like yours and a few that have lasted longer but I didn’t bother getting private HCGs as I knew what it meant. I just kept testing until line was gone and told the clinic. They just took my word for it. On a very limited budget they are prioritising what they fund. I have to say though when my embryo was measuring behind at 7 weeks they still didn’t do HCG but did scan me every single week and did take care of me right up to and past the misscariage to check everything has passed when I know they could have handed me off to the EPU instead which I am grateful for!

To the fact you’ve had a chemical, I know this sounds crazy now, but after the dust settles I always find comfort and positivity in the fact that the embryo did implant so you are half way there, your conditions are right to accept it (which is really hard to perfect!), your body in no way betrayed you it did exactly what it was meant to, and it is most likely that there was an issue with this particular embryo but it’s a good sign for going forward that you have the right set up and timing for the right embryo to stick next time xx 💜

Lelllow profile image
Lelllow in reply toTwiglet2

Thank you for your kind words ♥️I take a lot of comfort thinking that the fact that I did see two lines is a very positive sign.

It makes a lot of sense what you saying about NHS funding and “wasting” money on HCG test when it couldn’t change the outcome. I guess I just had wrong expectations and that’s why it got me so angry with them.

Also, speaking of expectations- I think one of the reason this chemical hit me so hard, is that I didn’t know it was a thing at all! I thought all I need is to get two lines on the test. Little did I know.

Thanks again for your support 🙏

Twiglet2 profile image
Twiglet2 in reply toLelllow

It’s defo not like the movies is it!? You are defo one step closer though. Take care of yourself and good luck going forward xxx

evalooda profile image
evalooda

I'm sorry for your loss - please know it's not your fault, your body didn't betray you as you say.

My clinic (private patient) never did any additional testing after transfer, just a home pregnancy test (I've had 6 transfers). I had 2 miscarriages so had my hcg done at the hospital on those occasions after bleeding, but that was only to confirm the drop.

It's so stressful I know and feels weird, but your clinic's protocols are pretty standard and not tied to you being NHS.

Rest up and give yourself time to grieve- this process is brutal.

Charlie_01 profile image
Charlie_01

Sorry to hear this. Same thing happened to me twice. I had two positives. They were good lines but not getting any darker. I rang them they said a positive is a positive but I just knew in my heart something wasn’t right. So same as you I went got bloods and they were low. I think they should check before offering a scan at one point I was told to stop testing.

WillowPark profile image
WillowPark

Hi, my clinic don't do blood tests either, just urine tests at home. I had a faint positive on my last fet at days 10-12. My OTD was day 15 and it was negative by then. I mentioned the positive tests and was expecting they might tell me to hold on a few more days or offer a blood test but they said if it was negative that day it simply hadn't worked. The nurse said I shouldn't have tested early because it wasn't a reliable result and it will be harder to take the BFN now but that's what it is. 🙄 It is hard to compare the NHS and private treatment. As someone else has pointed out, they have to do a cost/reward analysis and the early testing doesn't change the outcome at this stage. The way I see it, I'm lucky enough to be getting NHS funding (and alot of it where I live) so I don't look a gift horse in the mouth. While they don't offer the bells and whistles I'd get elsewhere, they have been amazing with me in so many ways and have got us closer to success than we would ever manage ourselves. They have gone out of their way to make sure I'm comfortable, healthy and supported. I've been offered so much stuff that really matters to me - counselling, painkillers for procedures, ability to 'do my own scans'. Genuinely I've been really impressed with my treatment. So if they don't give me a blood test that they think won't make any difference to whether I have a baby in 9 months time, or any of the add-ons that the HFEA don't recommend, or if they leave me waiting a few days longer than everyone else, then I trust them on that. Just my view of life!

Doodlebug23 profile image
Doodlebug23 in reply toWillowPark

This so accurately describes the difference between my NHS and private experiences! It is true you get what you pay for. Not because NHS professionals care any less, but due to the limited resources. I was lucky that most of my treatment and communication for NHS round was via my local satellite clinic, where I had everything barr egg collection and transfer. With only 1.5 FTE I did get the more personal touch from my local hospital. Unfortunately since my experience 5 years ago the NHS is now under so much more strain. I think we forget how lucky we are it even still exists. 5 years ago I was asked to do a blood test after a BFN to confirm it. A few years before that with natural conception I was asked to get a blood test to confirm BFP. Fast forward 5 years, and I was told when I asked for a blood test after a vv faint BFP a couple of weeks ago, that they don’t do them as protocol any more, and if I wanted to carry on with the pregnancy I would be referred to the midwife and get an appointment in 8 weeks!

Now my private clinic (in Spain which is why I am asking my own doctor for things) want a blood test to confirm a home test and repeat bloods to see HCG levels rising. I was convinced my first IVF BFP was an evap line so I didn’t want to pay for a private blood test. However my results came back 49 confirming a chemical. My doctor wanted to repeat bloods a few days later but by then I had clearly no line on a home test and had started bleeding so I didn’t bother.

Cridog profile image
Cridog

Hi Lena-K, I am so sorry to hear about your experience. I can relate so much with what you're saying.

We're also struggling with unexplained infertility, and have been trying to conceive for almost 6 years now. We've had our first round of IVF (ICSI because of my age and the clinic wanted to give all chances possible) and all was going very well, with great results of egg collection and fertilisation. We had one fresh embryo for transfer and another one that got frozen. The fresh transfer didn't work and I was devastated, the doctor didn't seem willing to check any further and even pushed to do the FET as soon as possible (due to my age, again). We had a very poor experience with the clinic and, although we are NHS funded for FET, we decided to go private to a different clinic.

After the fresh transfer, I was so, so, so angry, both with my body for betraying me so badly, but also with the clinic and how things were done. It took me a few months to calm down (still recovering), and decided to o private to give all the chances to the embryo we have left.

I hope from all my heart that you can take the time to heal and that you'll be able to take a decision that will make you feel at peace with yourself. And hope from all my heart that your next transfer will work!

Sending you big hugs from Scotland xxx

Lelllow profile image
Lelllow in reply toCridog

Thank you for sharing this. Yes, anger is something that really engulfed me - anger with my own body, clinic, universe... Now that I slept over it, and just waiting for pain to settle and to understand my next steps. I wishing you all the best of luck and success in your next rounds xxx

HollyT7 profile image
HollyT7

Hi, really big hug to you for such a shitty time! I’ve been right where you are and that sounds pretty standard, at least for our clinics locally.

The same happened to me but they didn’t advise to stop the progesterone, I stopped this once I started to bleed. For our second, I paid for a blood test to check hcg levels via the clinic after explaining how high my anxiety etc was following what happened previously. I only had the one test as it showed high levels so the nurse said it wasn’t worth while for the next one. My clinic don’t carry out pregnancy tests/blood tests following treatment, you’re just booked in for your 7+ week scan.

Private tests are always available to purchase and are probably a lot cheaper than anything the clinic can offer in terms of short term reassurance. Ultimately, anything can happen from a bfp to scan date unfortunately, regardless of the tests we do/don’t have, and it’s just unlucky we have the extra anxiety from the ivf on top of it.

Following our early loss, I had two transfers and have two healthy boys age 3 and 1 so take faith in your next transfer and that could be the one for you ❤️

Lelllow profile image
Lelllow in reply toHollyT7

Thank you for sharing your story - it gives me so much hope and comfort xx

CXCYCZ profile image
CXCYCZ

I was the same as you re not realising you could get a positive and then it disappear. It was a shock. A real shock. I was ready to shout from the rooftops that I was pregnant. I had waited so long. Chemicals, like many things in this process are cruel but they do show implantation did occur. That’s the positive to take from it. When you are ready to.

I used a private clinic overseas who insisted on blood tests which I had done by a uk clinic. It was the morning of the second blood test when I did a urine test first which was negative, I thought it was a bad test so I went out and bought more but they were negative too! I cried all the way to the clinic, a 45 minute drive. Managed to stop and compose myself before I went in then cried all the way through the blood test. I had no idea about chemicals, then I joined this forum and I’ve learnt so much.

I don’t think clinics, in my experience, prepare you for chemicals. Even with a low 26 on the first test neither clinic warned me it may be a chemical. Maybe they think you already know about them. You certainly do after the first and after you join these forums. Maybe they don’t want to add another layer of stress because I found after that time I stressed about the positive test and if it would stay! It’s like a hurdles course. You get over one, then there is another but you are running the course blind at first, so you learn each time you run it where the next hurdle is. Unless you are one of the exceptionally lucky ones and you get a clear run on attempt one.

The nurse at the private clinic in the uk said they don’t insist on blood tests either but they will do them if asked.

I’ve had three positive tests now (out of 10) and not once have I been asked by the nhs to have a blood test, in fact they seem quite happy to leave you be until the 12 week scan. It’s only the fertility clinic that asked for viability scans. It’s quite lonely after a positive test after all the attention during the ivf cycle!

Good luck for you next try!

Lelllow profile image
Lelllow in reply toCXCYCZ

That is so true - it is a pure shock. Never heard of chemical before, and of course I hoped for the first time success. It seems with this whole IVF process and infertility struggles there're so many nuances that we only learn as we go along this journey, unfortunately.

Thank you so much for your kind words xx

Batsford profile image
Batsford

I’m so sorry what you’ve been through. I’ve had very similar experiences - I had 3 chemical pregnancies and my clinic doesn’t offer HCG tests unless you specifically request them and pay for them. I didn’t find out about the first chemical pregnancy until the 7 week scan and it was devastating. I then read about HCG tests on here and started paying for them each time. It meant I could find out sooner which was helpful to me. I haven’t found my clinic particularly helpful after any of my chemical pregnancies and I’ve been treated each time by the EPU. I’ve now had immune tests and it is clear that my immune system is causing the chemical pregnancies and so I’m now on an immune protocol to hopefully treat the immune issues. Best of luck on your journey.

Lelllow profile image
Lelllow in reply toBatsford

Thanks for sharing this. I am sorry to hear you has experienced a few chemicals :( I hope the next round will be a success!

How did you do the immune testing - was it with your clinic or separately?

Batsford profile image
Batsford in reply toLelllow

Hi Lena-k,

I’ve done the tests through the Centre for Reproductive Immunology and Pregnancy in Epsom. It is founded and run by Professor Shehata, who is one of the pre-eminent specialists/leaders in reproductive immunology. They have excellent reviews and results. They now think that lots of implantation failures, chemical pregnancies and miscarriages are due to immune-related issues and they have cutting-edge blood tests to test for this and then protocols to treat the underlying immune issues. I wish I’d discovered them sooner rather than after 5 failed embryo transfers. Thank you - best of luck with your next transfer too!

Kitkat10 profile image
Kitkat10

hi, I’m sorry this happened. A similar thing happened to me; line wasn’t getting darker but I didn’t get a private HCG test and the clinic didn’t offer. I went at 7 weeks and the gestational sac was empty and at 7 weeks the HCG was only 300. They took another one 48 hours later and it was 200 so they told me to stop taking medication. I felt like 3 weeks had been a total waste as it was likely the HCG would not have been doubling at an earlier stage. It was sad and frustrating but seems unfortunately to be a common wait and see approach.

Don’t feel that your body didn’t sustain the pregnancy, it’s usually that the embryo wasn’t 100% right and didn’t continue to develop and hence comes to a halt and your body takes some time to recognise that. It’s cruel but it does happen in natural conception too, we just don’t know about it because it’s not medicated.

After this happened to me, I took the positive that the embryo had implanted and that the timing had been right but just waiting for the right embryo,

Good luck with everything going forward 🤞🤞🍀🍀

ClaudiaS profile image
ClaudiaS

I am really sorry for your experience! You have to stay strong to this journey bcz it can be really hard! The nhs and one famous privet clinic in uk made 7 years of my life a total hell with 0 results! I went abroad in a clinic suggested from forums in greece and it was amazing ! I found out there that uk is really bad when it comes to difficult ivf cases as it has a one fits all mindset! I suggest twice with them after 7 years and more than 11 et.

Hope for the best !

Lelllow profile image
Lelllow in reply toClaudiaS

Wow, what a journey. Thanks for sharing this!

Something really bothered me, when my much older female friend and I with two very different cases were put on exactly the same protocols. Although I am NHS and she is private in a very well-regarded clinic. Both of us didn't succeed yet, but the idea that we were on exactly the same treatment plan really surprised me. As you said 'one-fits-all ' approach.

Boo718 profile image
Boo718

hi I’m sorry your going through this. I’ve been there a few times and it’s tough. Unfortunately most clinics don’t do the blood tests especially nhs ones. You just go back in for the scan thinking all is ok when it’s sometimes not. It really is a piss poor service in most nhs ivf cases. You really have to stay on top of it yourself. I hope your ok xxx

Xmishell37 profile image
Xmishell37

I found out on Thursday my HCG was 9 (9 days after frozen transfer), Im NHS funded and they would only see me 1 full week later, which I know isn't as bad as Ur situation but still frustrating when they would know the situation within 4 days (if hcg doubles every 48 hours), I'm shocked u were only invited back for 8 week scan sorry you experienced that 😔 I'm in Scotland my experience so far has been ok but there are thing that can definitely be improved!! I'm mentally preparing for round 2 as I have one poor quality embryo left in storage after one miscarriage at 5.5 weeks and this one which i believe is a chemical pregnancy (will be confirmed next week) xx

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