NHS Fertility Treatment Disappointment

[Ladybug320]

I’m defeated.

I have an infertility diagnosis. I have moderate PCOS and was due to get tested for endometriosis in the next few months due to an ectopic pregnancy I had a few months ago. Both conditions increase the risk of miscarriage.

I’ve been with A fertility clinic through the NHS for over a year now. Every time I get pregnant (through medicated cycles) I have miscarried the pregnancy, but before I even get chance to hit viability, the clinic discharge me and cancel all future appointments. I’m talking the moment they find out I’m pregnant, there is no further help. After the first loss, I learnt my lesson from calling and notifying the clinic, I was expecting to be put on progesterone which is why I called, but instead was told I’m no longer needing their service because I “no longer have fertility issues” and was discharged there and then and the phone was put down on me. I was devastated and lost that pregnancy 3 days later.

It took 6 months and multiple PALS complaints to get back in with the clinic. I didn’t tell the clinic I was pregnant with my second pregnancy until I could confirm viability. The pregnancy was labelled non viable from the start and deemed a PUL but later confirmed ectopic due to symptoms and HCG levels. Was due methotrexate but miscarried naturally in the end. So I’m glad I followed my instincts and didn’t tell the clinic. Joke was on me though as it must have been flagged on my records that I was pregnant. I was discharged the moment my blood was drawn at EPU with a positive test result.

I was upset that they discharged me because the viability of the pregnancy was a question mark from the start and they would have seen that on my records as I’d read the report. Another month of complaints and I get a call from the clinic, they’re willing to see me and had arranged an appointment to get further testing for why the ectopic happened before resuming medicated cycles. Hooray! Finally progress. I was told to stop my protocol and take a break whilst waiting for the appointment which was due May this month.

Well BFP confirmed days before my appointment, a natural conception whilst taking a break and not on meds. I was so happy but also very scared. I’d started bleeding and was in a lot of pain. I rescheduled the fertility appointment instead of cancelling as I was worried it was going to end in miscarriage and my testing would get cancelled. I called EPU who scheduled bloods and a couple of early scans due to the ectopic risk. Signs weren’t looking promising after the second scan, GS was in my uterus but there was not much growth between scans, I was measuring a week behind and no fetal pole or heart beat detected at the 6 week mark + they had dated me back to 5 weeks again. I was right to reschedule the fertility appointment afterall, as once again I’m expecting to miscarry.

EPU have made me wait 2 weeks to confirm the pregnancy status and then I will have miscarriage management if needed. The scan is next Tuesday so I don’t have confirmation of the loss yet but have continued to bleed and cramp. I’m also on progesterone (thanks to my lovely gp not the clinic) so wonder if that’s prolonging the bleeding.

Anyway, I’ve logged onto my medical portal this afternoon, low and behold gynaecology have cancelled my fertility appointment that I had rescheduled for June. They haven’t given a reason but I assume because they can see I have a noted recent pregnancy on my records. I don’t want to call PALS until my scan next week so I can be 100% sure it’s a loss and will have evidence to support needing to stay in with fertility and keep my appointment.

I am at my wits end. Having multiple losses is hard enough, but to know I have absolutely no support or structure in place to find out why these losses are happening, is really discouraging. I plan on now going through recurring miscarriage clinic and Tommy’s for miscarriage testing but I still need fertility support due to still having infertility. Has anyone been through something similar? Does anyone know what my rights are as a patient under fertility on the NHS? I feel like I’m getting chewed up and spat out every single time. I was once asked if I’d been offered any emotional support for having lost 2 pregnancies in 7 months. When I said no, i haven’t, I wasn’t given any information on where I could get help and support I was just given a sad glance for a moment and then totally ignored. I just feel neglected and an after thought.

This is so frustrating to read, I'm so, so sorry you're going through this. I have no information on the legal/rights side, but they should know fertility isn't just about getting pregnant, but staying pregnant, so it's ridiculous to automatically discharge someone for getting pregnant even when the pregnancy isn't viable. I'm really hoping you can get some proper support 💕

@PurpleTurtleMoose thank you for your response. I completely agree. I don’t understand if after the first AND second loss, they’ve not learned that pregnancies aren’t sticking for me and I need further support. I haven’t gotten my report back yet from my 6 week scan, but I do know I was gaslit by the EPU nurses that I had miscalculated my dates. Frustratingly I had a positive blood test done by them on 2nd May which would have made it impossible for me to be 5 weeks on the 21st May. By that logic I’d have gotten my first positive at 3dpo. It’s just ridiculous. Also viability wouldn’t have been confirmed on that report because there was no fetal pole or heart beat. Fertility would have viewed that but still discharged me. I am sick on complaining to PALS. I’m not sure what else I can do

I’m so sorry you’ve been through so much OP, and are still going through so much. Unfortunately (as with a lot of NHS areas), it’s a bit of a “I did my part and that’s all we do” issue, and the different areas don’t really talk to or work with each other.

The role of the fertility clinic is not to help you stay pregnant, it’s simply to get you pregnant, so their “bit” essentially is just- positive pregnancy test- anything beyond that isn’t their remit and so they do just go ok, pregnant, we’re done then.

Once you have 3 miscarriages you can be referred and seen by the recurrent miscarriage clinic which is the best option in terms of care & probably what you need. They will investigate to find the cause of the miscarriage & set up a tailored care plan which will kick in after your positive test- so after the fertility clinic say off you go- which can include medication as well as regular bloods/scans to check development and any issues etc.

It is rubbish, and it’s a ridiculous system, but that is the issue you’re having really it is an issue with the way things are set up. The fertility clinic’s job is essentially done once you have a positive test, the miscarriage clinic would kick in from there, then into EPU/antenatal etc.

@Mrsttcno1 thank you, it’s been an ordeal.

Where did you get the information that it is standard to discharge as soon as the patient has a positive pregnancy test? I’ve known multiple people who have shared a similar experience to mine, in that they struggled to get pregnant and once they did, had struggles staying pregnant as well and they were always kept on the books with their fertility clinic until confirmed viability, they were also offered progesterone and sometimes other medication depending on diagnosis to help encourage a pregnancy to continue. I was under the impression that this should be the standard protocol and makes sense to be? As it’s a bit ridiculous to assume pregnancy will be successful especially as 1 in 4 pregnancies end in loss, and a lot of infertility causes are from conditions that also compromise pregnancies too.

I know the recurring miscarriage clinic can work in conjunction with your fertility clinic to find a cause and help with a better outcome as again I know people who have dealt with this, but they are not in the same county. I don’t think the recurring miscarriage clinic would be able to prescribe ovulation induction medication so I don’t see how I would be expected to have diagnostic testing with RMC, but no further help with the fertility clinic afterwards? It seems so counter productive and a lack of competence on NHS part.

It just doesn’t seem very productive or in favour of the patients best interest to discharge so hastily. I haven’t even gotten any sort of context to the appointment being cancelled. I’ve had no letter or phone call to say I’ve been discharged. I have just taken an educated guess from my past experiences as to why my appointment got cancelled. There is such a lack of communication it’s frustrating. I will be going back to PALS on Tuesday but I’m just so exhausted having to fight for a service that keeps being taken from me when it’s been my only lifeline to starting a family.

I'm sorry for everything you're going through.

In terms of NHS fertility support, they have really strict criteria, including how long it takes to get pregnant. Every time you have a new pregnancy, regardless of the outcome, it resets the clock. I've been there and it is super frustrating, but sadly just part of the system.

As PP has said, losses are handled separately to fertility in the NHS, at least in the investigation stages, and if you have 3 losses you are referred for recurrent miscarriage.

For me, the investigations found a genetic cause for my losses, so I now hit a different criteria pathway for fertility on the NHS and qualify for IVF with pre genetic testing (subject to funding being approved of course).

It can be super disheartening but I'm afraid it's just how the system works. I hope you manage to find some support and solutions xx

@Moosey898 the frustrating part is it doesn’t seem like it is just how the system works. Because it seems depending on your hospital depends on your experience and aftercare. I know this to be the case with IVF too, it seems to be a lottery.

It’s extremely disheartening knowing I could be two counties away and have a much better experience. If there is a system in place, it needs to be consistent. My friend (in Cornwall) was able to get continued support and was still on her fertility clinics system until she hit viability. She was also still in with fertility whilst going for RPL testing with the miscarriage clinic.

Extremely harsh criteria that isn’t consistent or beneficial to those who are struggling with loss as well as infertility. You are right that it is a complete reset once you get pregnant and have a loss. The only thing that has helped reduce the time it takes to get back in was multiple PALS complaints.

After Tuesday I will know more and will be contacting PALS for the 100th time. All going well I will be able to get a referral to RMC and have testing whilst waiting to get back in with fertility. It’s a never ending shit show 😭

I will be going through my gp to get a Tommy’s referral too as it seems their testing is more extensive than RMC.

The criteria can be applied really harshly and really arbitrarily unfortunately

you have gotten pregnant therefore under many (most) NHS trusts criteria you are therefore not infertile and the “clock” resets - to trying for 1-2 years without a BFP before they will refer you again (or 6 months if you are over a certain age)

depending on the number of losses you have suffered you may not be eligible for RMC either - for some trusts it’s 2 for others it’s 3 some count ectopics some don’t.

id try again with a complaint to PALS but unfortunately it may not go anywhere if that is your specific trusts policy (I know lots of women who were advised following private IVF cycles not to tell NHS until viability was confirmed for this very reason)

can you change IVF clinic to a private one that accepts NHS funding rather than a fully NHS one?

I’m glad you got hold of progesterone through your GP (mine worked that way too) You can conceive naturally so I’d ask for it as soon as you get pg. For me (pcos and fibroids) progesterone was the key.

It is a postcode lottery but your area is the same as mine in that any pregnancy resets the clock. It’s not that fertility clinic thinks miscarriage doesn’t happen, it’s just that they almost don’t really care because a positive test means you CAN get pregnant and that’s their part done, so after that you’re no longer their concern.

It is rubbish and really tough when dealing with that on top of everything else but I do think that’s standard across a lot of trusts.

I also did IVF via an NHS funded clinic and I wasn't discharged until viability was confirmed via a scan at 7 weeks. I was also given progesterone as part of the treatment package to increase the likelihood of staying pregnant. The clinic are still in touch now as they want me to send a survey confirming the baby's birth (I'm due in 2 weeks). I'm sorry to hear you've had such a woeful experience. It sounds like a huge postcode lottery in terms of what clinics offer. I don't think there's a standard NHS approach unfortunately and it seems to vary from authority to authority.

I totally understand. I've been fighting with the system for 7 years and for 4 missed miscarriages. And it sucks. We shouldn't have to put so much effort in to something so emotionally and often physically exhausting. I hope you are able to get extra support. To be honest I can't fault my care under the recurrent miscarriage clinic where I am. They have been super caring and thorough. I hope you can get the same x

@IVFeltbetter i have PCOS and possibly endo (under investigation). I don’t ovulate naturally. I need ovulation induction to get pregnant, I’ve only ovulated naturally after a miscarriage weirdly and only lasts a couple of months until I’m back to no periods or breakthrough bleeds with anovulatory cycles. I had years of not one BFP until I was offered clomid. That seemed to be the magic sauce! now I’ve had 3 and pregnancies in 11 months but non have then have stuck. The fertility clinic felt like a lifeline and so you can imagine that option being taken away from me because I got pregnant and then miscarried, was difficult pill to swallow. It shouldn’t be this way for anyone :(

@Mrsttcno1 I really believe the system/policy around this needs changing, it seems a lot of women are struggling with the “reset” once you get pregnant. I mean, if you’re only getting pregnant through the help of the clinic, that help shouldn’t be automatically taken away before the pregnancy is deemed viable. Just another way for the NHS to cut corners and restrict help to those who need it.

@Moosey898 I’m so sorry you’ve been chewed up and spat out too. I’m so glad the recurring miscarriage clinic have been so understanding and helpful, that must feel like a breath of fresh air despite the circumstance. I have everything crossed you’ll get your rainbow baby ❤️