I’m so gutted right now and not sure where to go next. Finally we had our first IVF referral appointment at the hospital yesterday which we’ve been waiting and looking forward to for ages. After going through my records, an internal exam, weighing and measuring me, booking me in for a hysteroscopy (to remove some polyps that may interfere with implantation), I was sat down to go through the CCG’s eligibility list. The doctor proceeded to go through the criteria, ticking off each one and I’m thinking great, we are good to go! And then she stopped just before the end. She said now, this one - you have to have had unexplained fertility for 24 months. I explained we have been TTC for over 3 years and although we have naturally conceived twice, both ended in early miscarriage, the last one a year ago. She said, so that’s not 24 months. I explained that miscarriages are surely not counted as ‘fertility’. We have been ttc 3 years and still have no child at the end of it. So now I’m being told we have to wait at least another year before they will even consider putting us on a waiting list. So it would be 18 months before we can even begin our first and only NHS treatment, which may not even work! I will be nearly 38 by then, husband 43 and I know my chances will have been significantly reduced. Also if we happen to conceive naturally in that time and I have another miscarriage (which will kill me!) I will feel like I need to hide it from doctors so as to not push back my place on the waiting list further.
Hubby and I are so shocked right now. Went in to get on the IVF waiting list and left with a hysteroscopy appointment and still another 1.5 years before we even get close to getting any help 😖 Even though hub has less than 1% motility and morphology sperm so our chances of conceiving again are slim.
Anyone else had this experience? I know it’s hard for those ladies out there who have never naturally conceived and you should take priority of course, but I would not wish my miscarriage experiences on anyone and now feel I have been punished for them! Any advice welcome. Xx
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That is awful. How can they be so cruel? I know you have said that you have had tests before and come out as "normal" did you do the NK tests and Thrombophilia testing?
Hopefully you can appeal the nurses decision, it seems far too long to wait. Big hugs xxx
Thanks so much for your kind words Camillage. I’ve had the Thrombophillia test) which also came out normal) but not NK cells testing - I was under the impression that was still an new area of study that hadn’t been fully scientifically proven yet?
Do you know how I would go about appealing the decision? Have you ever done anything similar before? x
I am so sorry that I have not. Hopefully someone on here will be able to help. Possibly if you dm Diane Arnold she may be able to help too. I would definitely start by contacting my gp. Yes, nk testing is new but it was something else I could think of. Some people have had success with that.
Also, if you have had two miscarriages already do you know your blood type and your husbands? I was given a thing called Anti-d to help stop my body creating antibodies to reject my husband's blood should I become pregnant as I am o negative and he is o positive x
Yes that’s true Diane is great at the practical advice. I think you’re right, I should go back to my GP first and see if there’s any light at the end of the tunnel x
I hadn’t heard of Anti-D but will look into it thank you x
Thank you Kirstyblue, I know - I have no idea how it got that far when they must have known the decision would be a no.
I’ve had lots of tests and am told there is nothing wrong with me so there is nothing to even take medication for. But it would almost be easier if there was something and at least I could try to take some control of the situation. Sounds awful I know. x
Im so sorry to hear your your experience, its horrendously cruel. Im not sure if this varies where you live but I was under the impression that when you were over 35 that you were fast tracked and given some priority for treatment?! Also for the fact that your hubby had abnormal sperm I would have though would also act in your favour. Can you appeal? Maybe some other ladies can help if they have been through this process?! Hugs.xx
I would have thought we would have things sped up due to age too but apparently that has no bearing at all. You just go on the list, same as everyone else.
I mentioned the sperm too, but all they seem to see is the fact that on paper we have conceived twice - there is no careful consideration of what we have been through at all. It’s just about ticking boxes 😢
I am sorry for what you have gone through. It is really unfair.
I understand where you are coming from. When we went to the GP initially, he agreed to refer, but then he forgot to...so that took time to get the referral through.
Then finally when we had our 1st apt with consultant, he said your medical records show you are not immune to rubella so i had to have the injection and this took a further 3 months for numerous blood tests to prove i was immune to rubella.
Then they weighed myself and my OH and because he does martial arts he had some muscle on him but they rejected the referral saying he is overweight and didnt meet the criteria. OH was fuming cos he has no fat on him.
It took months for him to lose weight. Upon returning, the Trust turned us down again saying the NHS guidelines changed and the BMI has been changed to 29 instead of 30. So OH needed to lose more weight.
It was a constant battle. He lost more weight..
We went for numerous pre IVF tests etc and fell under the 'unexplained' category.
Our next hurdle was in the NHS taking time in referring to the private clinic and it involved alot of chasing up due to lack of communication i guess.
All the above must have taken up a year. I spoke to one of the nurses at the clinic and broke down, told her everything. She said once the clinic have the contract/referral everything will go quick. It did....It all happened in last month in September (egg collection and transfer)
We too only had one go on the nhs. We ended up having the icsi and thankfully we fell pregnant on the 1st cycle (given that no embryos made it to blastocyst stage and were not suitable for freezing).
We are very fortunate, lucky and blessed to be where we are today. I am getting ready to go to my 1st scan and will message you when i return.
Oh dear me, so upsetting it’s getting to show that admin process is taking first then the actual situation. I don’t see you are in any better position having miscarriages then those who never conceived naturally-miscarriage is just awful thing and drainage emotionally, you are strong woman. You deserve to have equal chances with the waiting list on nhs as those without miscarriage.
I’m sorry for your miscarriages, I had only one and still didn’t go over the grief completely, I hope you soon get your dreams come true💗
Any chance you can start private? I totally understand you it’s so long to wait for nhs, if you can only afford just try private-maybe option will be to do ivf abroad they might be less expensive, lots of couples decide to do it, I have one friend she did it too and eventually became mother! Just wanted to wish you best of luck whatever decision you take!
So sorry for your losses 😢
I have heard of this rule, it’s flipping unfair 🙄
When we conceived the first time our fertility doctor thought about whether or not to “record it” until we were further along, then realised we would not qualify for NHS funding for IVF as I have a grown up son ( whose 20 today!) so he recorded it. If we had been he wouldn’t have recorded it, as it would mean we would be waiting the same length of time as you are.
It ended up being a chemical pregnancy & my endo re grew much worse ( that was our issue) fast forward 13 months & 2 more surgeries & I’m now 8 weeks pregnant! Please don’t give up hope 😘
Perhaps with the polyps being removed your next pregnancy will be successful, I am sure having ALL my endo removed made the difference in us getting pregnant & being more successful than last time. I won’t know what caused our loss but I’m sure having any endo in me wasn’t helpful.
Can the specialist prescribe anything to support another pregnancy better such as progesterone pessaries, low dose aspirin or prednisone ( low dose steroids) ? I am taking progesterone pessaries (200mg x2 daily) & prednisone for slightly raised nk cells( 5mg x 2 2 daily) Some people might think it’s Mumbojumbo ( not here!) but I find it comforting to know I’m giving my baby the best chance.
It is good that you have conceived , I’m so sorry it didn’t have a happier outcome. But it good that you can get pregnant with infertility that is half the battle. I took my chemical pregnancy as a positive thing-it showed my body how to get pregnant, before that we didn’t think it was possible.
I know your hubbys sperm isn’t great, maybe look into supplements he can take to help improve it. My hubby was awful at remembering to take vitamins lucky his sperm must have been okay! It only takes one good sperm 😘🤞🏻
I’m sorry you are going through this & hope you can fall again naturally with a better outcome xoxo 😘
Thank you Jess for sharing your story - it does give me some hope. Hub is going to start Condensyl which I hear has great results. When I went to the recurrent miscarriage clinic they said that they wouldn’t prescribe anything as all my hormones, progesterone etc were good and that I don’t need aspirin in my case.
Maybe the polyps removal will be what we need - who knows.
Hi I had to wait 12 months from my first referral & initial consultation on the nhs in Wales! I’ve never been pregnant, and had been trying for over 5yrs! It was a long and stressful wait, especially as time is so precious. I waited my year, and I must say after that the care, support & treatment I had was fantastic. Just had my first cycle, egg collection & embryo transfer, unfortunately I only had 1 good embryo which I had transferred last week, none to freeze, 1 week to go before pregnancy test unfortunately I have bled since then so I think it is going to be a negative result. Good luck and I hope this helps xxx
Sorry to hear you had to wait to so long. Good luck and really hope you get the results you deserve xx
I’m so sorry to hear of your experience and think it is totally unfair. I’m a GP and I would interpret it that you have been trying to conceive for over 2 years. I would contact PALS at the hospital you went to and also your CCG and ask them to clarify the criteria. Unless they have specified that having a miscarriage resets the clock, I would suggest they are on shaky ground. Most CCGs hold their meetings in public once a month and you can email them a question that they should answer in that meeting.
Are you still getting your investigations? Also, my understanding was that if there was an issue with sperm, you could get referred sooner as you’re not having IVF at that point- just investigations and possible treatment for the sperm issue. None of my referrals have been bounced but I’m based in west London.
Zoe this is so useful, especially with your GP experience thank you. I don’t know what PALS is but I will look into it...
As far as I’m aware there are no further investigations I am entitled to until I’ve had a third miscarriage (something to look forward to!!)
From what I can gather they won’t except there’s an issue with his sperm results because even though they are way below optimal percentage of normal forms he has “got me pregnant” twice.
PALS is patient advice and liaison service- every hospital has one (just google your hospital name and PALS and it will come up with some details). They deal with initial complaints and feedback. They send you confirmation of your issue so I normally suggest an email over a telephone call. Good luck! X
I'm not sure if referral criteria are different for different CCGs. My husband had significant sperm issues and we were referred at 10 months TTC, took a little persuasion to get the sperm analysis done in the first place but once we had an obvious issue we were referred and started treatment within 5 months which is how long it took to have everything retested again and consents done.
As Zoe has said I would definitely push them on the issue....please let us know how you get on.
I am shocked i asked my fertility nurse if it will go against us that i had a miscarriage and she said no when sending off my referral but obviously it does im so sorry that is awful but i know some areas are more strict than others with criteria as my fertility nurse favoured one clinic over another with us as she said they were more likely to say yes as the other was stricter
Yes I think (as so many ladies on here are all too aware) there's so many differences in criteria depending on where you live. Fingers crossed the mc will have no impact on your referral in your area. Sorry for your loss and good luck x
I am sorry for your loses. Although ive not had any loses, I experienced a similar thing going through the referral process. In my area your gp refers you after a few blood tests and a SA, you see a fertility specialist at the local hospital who does all of the initial testing, more blood tests, hsg, scans, I also had 3 clomid cycles and when that doesn't work they then determine whether you meet the criteria for ivf which is carried out by a private clinic but paid for by the nhs. So after spending nearly 1.5 years going through the testing at my local hospital (we had been ttc for 2.5 years before this and now a total of 6 years ttc) with the fertility specialist and all being good with my results they tell me the last thing to test is my AMH and this needs to be above 5.4 to qualify, mine was 3.0, they re-did the test, 2.3. At the age of 32 i was then turned away with nothing, neither my husband or i have any children and I've never been pregnant, we weren't even offered counselling to deal with this especially as they said my chances of conceiving were pretty much never but not impossible. We felt let down and devastated and completely in the dark. After all the waiting for tests, appts to come through and 2 - 4 months between each appt it just took so long. After being turned down, i went off and had a private cycle of ivf - bfn, had my amh tested and it had gone up to 7.5 which meant I would qualify for nhs treatment, I then had to go through the referral from my gp again but once I was seen at the hospital I had to have my fsh re-tested as the results for this were out of date, turned out my fsh was then too high didnt didn't meet the criteria, I had to have it re-tested again and next it came out fine. For me it was a very long process and very upsetting.
Apparently hospitals and GPS are under no obligation to hand you a copy of the criteria, if they did from the outset or at least tell you about them, it would cause a lot less stress and hurt. I didn't even know the criteria existed before all of this, let alone knew what it was.
There's a lot more that can be tested that the nhs doesn't cover in their testing. Surely with all my results coming back normal there's got to be something else that's wrong?! Earlier this year I had the c4m2 blood test, i am a positive carrier of a blood clotting disorder which can cause implantation failure or early misscarriage, more recently I've had the utrine natural killer cells biopsies, my first came back below normal and apparently my second biopsy has re-set my lining to make it normal. In my case there is more to it than the testing the nhs carries out.
What are your ccgs criteria on having already had ivf? I was only allowed 1 private cycle and still qualified for nhs (I didn't know this at the time) If your ccgs criteria allows for you to have a private cycle, could you do this whilst waiting for your nhs one?
Wow, you are a very strong person - sounds like hell that they put you through all that only to be turned away. Hopefully now your tests are bringing up some answers for you. Your story really makes me think we shouldn't rely on the NHS for this... Our CCG say you can have up to 2 private IVF round and still qualify. If only we had a magic money tree! x
The day they told me i wouldnt conceive and turned me away is the day i also found out my sil was 9 weeks pregnant, it was a pretty rough time. But i feel like i have to be strong because if im not, who else is going to help me. Ive learnt a lot about the processes and you have to be switched on. Even now we have our nhs funded cycles (1 down the next to start at the end of November) i have to be asking questions and thinking outside of the box. What makes me angry is that the criteria they set doesn't help those that need it most. I have a plan going forward and it helps knowing that if this next step fails, i know where im going next and my husband is with me and we are in this together. The money tree would be helpful, if only they existed. In the end i had to look at the nhs route as a bonus, because if i would have been turned down again, I couldn't give up on not having a child xx
I'm so sorry it's just awful and it feels like a real kick in the teeth. The same happened to me I was beginning an IVF cycle that the clinic cancelled in between investigations I feel pregnant naturally and had a miscarriage and then I didn't qualify for funding. We had to go private as I just couldn't face waiting for another 1-2 years. Despite the financial implication I'm glad to be private as there is no endless waiting they just crack on with things, no waiting months for appointments, referrals, treatment etc. I do still feel a bit bitter that I didn't get to have my one go on the NHS especially because I work in the NHS and give them my heart and soul everyday! It is cruel and I really feel where you are coming from and the emotional impact it all has xxx
Wow that really sucks, to have to deal with a cancelled cycle and miscarriage at the same time. You poor thing. Especially when you work for the NHS - I know funding is tight but we all pay our taxes and should be entitled to some kind of consistancy in what we are are aren't entitled to...Hope it works out for you xx
Totally agree! Hope it all works out for you too xxx
I've been in exactly the same situation Hun & it's bloody unfair. I was diagnosed with severe Endometriosis & needed to have surgery before I could start NHS funded IVF. I tried to conceive whilst waiting to start but was told my chances were almost non existent. I went for a scan prior to starting IVF to be told I was pregnant but she couldn't find a heartbeat. That ended in miscarriage. I was told as I had concieved we had to try again for 2 years or 18 months ( can't remember which now ) before we could have NHS funded IVF . Last January we attended the fertility clinic & had some blood tests / sti tests & semen analysis redone. The consultant even said it was obvious I wasn't going to concieve without IVF. Later that month I concieved! That ended in another miscarriage. I was then told I'd need to wait again before I was entitled to NHS funding & by the time I had waited I would have been too old for funding! I was also told I needed to have a 3rd miscarriage before I would get referred to the miscarriage clinic. The bereavement midwife at my hospital said due to being 40 my GP may refer me to the miscarriage clinic. Unfortunately though he said he thought the referral wouldn't be accepted but he would run it through the surgery partners who declined to do it. It just made me so angry with my body for getting pregnant which wasn't good. Your GP & clinic might be far more helpful than mine but I had no choice but to go private. X
Thank you Gracieboos, I'm learning that with the slim chance of falling pregnant (and miscarrying again) we shouldn't get to attached to an NHS place on the list. Useful to know but so sorry to hear you went through that. I hate the 3 miscarriage rule for investigations, it's all so cruel. Sorry for your losses xx
I'm sorry for your loss too Hun. It's just so unfair & frustrating because after the miscarriages you are still childless so I don't agree funding should be put on hold at all. It makes the grief of the miscarriages 100 times worse as it eats into the hope you had for the IVF too. I really hope somehow you get a happy ending. Xx
I feel for you! I am so sorry you have had such a tough journey so far. The NHS requirements are terrible!! I was fortunate to have one try on the NHS but the criteria was that if I had EVER gotten pregnant even if it ended in miscarriage then I wouldn't have been eligible. Also, if my husband had a got someone pregnant or had a child from a previous relationship then we wouldn't have been eligible. I had to be under 35, under a certain weight, trying to conceive for over 3 years...the list went on! It's no fair, and I think its absolutely awful!
It really is so strict, I understand they have to give help to those most in need but wish they considered people as individuals not just via a list of tick boxes! Thanks for your understanding x
Not sure what CCG you are under, but have a google as sometimes you can find the criteria etc. Also have a look on the below links to see if there is anything to assist. It’s not even got to the CCG for them to refuse it!!
Thank you, I will check out the links! Actually spoke to my GP yesterday who’s thankfully been very supportive. But he said that if they are going by the letter of law, our CCG does state 24 months of unexplained infertility - the definition of which is an inability to conceive, not an inability to carry a baby. I am going to keep fighting though x
I hid my first miscarriage (my consultant gynae actually encouraged this) to get my ccg nhs funding. I got pregnant on month 25 of trying then lost it. It’s ridiculous that this situation exists in some areas but not in others.
You can’t do much about it though.
Given your age, maybe consider going private and if you can’t afford it look into one of the funding loans? Some give you money back if your ivf doesn’t result in a live birth. Although you have fallen pregnant before, so it could happen naturally again.
Finally can you get your gp to do as many of the recurrent miscarriage tests as they are willing to do? Look on the Tommy’s website to see what you could ask for. Your gp won’t refer you to a recurrent miscarriage clinic unless you miscarry again but might refer you for some tests?
Oh I’m so sorry you were told to hide your miscarriage, what an awful state of affairs! I’m sorry for your loss too.
I didn’t realise there were funding loans - do you know where you go to apply for them?
Re. the tests I’ve had quite a few already (some I paid privately for) so I will check the Tommy’s website to see if there are any I’ve missed. Great advice thank you xx
I’m so sorry to hear this. We were about to begin ivf when we conceived naturally but had an early miscarriage. We began an NHS funded cycle 6 months later. I think they’re being unreasonable. Good luck lovely xx
Sorry to hear about your loss. That’s great you were able to continue - I guess your CCG criteria must be a lot less strict. We live in an over populated area so demands on NHS resources are high and they have to reduce numbers I guess. That’s the only way I can justify it to myself anyway. 😞 Good luck with your journey x
I just read on twitter that 59% of Uk couples have to self fund their ivf. I bet if you looked at the stats for just England it would be much higher, because Scotland and Wales are more generous than many English areas. It’s disgusting.
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