Recurrent miscarriage tests - All normal! When did NHS offer a hysteroscopy?

[FrancyItaly]

I just received an email from the Doctor saying my results are all normal and to go next week for an appointment to discuss my first FET.

I don’t know how to take this news. I feel like the problem is still there, just has not been found! I had two miscarriages, one natural and one from my first IVF. Cytogenetics tests on the miscarriage tissue confirmed our little boy had no chromosomal issues. He was a 5AA embryo.

I am assuming now that my results came back as normal I will not have any sort of support (baby aspirin, eparin etc). How can I go for another transfer knowing I still have a problem there and I might have another miscarriage?

Did they offer you a hysteroscopy and at which point?

[Chel91]

Hi lovely, sorry to hear they didn't find a cause! Totally understand why that wouldn't necessarily be reassuring. I think "unexplained" is sometimes the worst because we don't have answers or solutions. Sending you a big hug!

Do you maybe have a list of the things they tested you for? Maybe they missed something some of the other ladies might have been tested for? Did they also test for immune stuff? Have you had a Hysteroscopy / sonohysterogram done before? This whole thing is such a minefield. I know it doesn't feel like it right now, but there also might be a good chance that it won't happen again. But I totally understand you don't want to take any chances at this point xx

[FrancyItaly in reply to Chel91]

Thank you! Yes I had testing for immunes. Do you think they will offer a hyperoscopy? I think they just want to go ahead with a FET. Shall I ask for baby aspirin/eparin as a precaution?

[Chel91 in reply to FrancyItaly]

Are you with NHS? I don't really know what exactly the NHS protocols for IVF specifically are to be honest, and I think it varies so much based on who you are dealing with. I think a sonohysterogram is usually done before a hysteroscopy usually though, but it does depend on symptoms.

Do you have any other symptoms that could indicate fibroids or other things, like pain, painful periods, bloating, heavy bleeding etc.? It might be worth going down that route if so and say you need to rule out fibroids etc before the FET. I've found that sometimes you really need to advocate for yourself whether it be for fertility, or pelvic pain, or PCOS.

You can buy low-dose aspirin OTC so if it would make you feel better I've been told by numerous doctors it's totally safe. Best of luck with your follow up. Hope it goes well and you are able to get the info you need xx

[FrancyItaly in reply to Chel91]

Thank you! Yes I did the fresh cycle with NHS in July and now I will do a FET still with them. I think they will agree to some medication if it does not harm, I will find out on Tuesday. I don’t suffer from pain, bloating and heavy bleeds. What they mentioned is my albumin level is very low, maybe something to mention at my appointment. Thank you for your precious suggestions! I hope you are doing well hun xxx

[Jess1981]

I'm so sorry you didn't get any clear answers but hope your clinic have suggestions going forwards . There is so much they still don't know about miscarriages. ☹️ I also got no answers for my daughters death or my early miscarriages either but after Amelia and 2 other early losses it was upsetting and frustrating to have no explanation but I'm now 25 weeks pregnant every pregnancy is different. Even with recurring losses women do go onto to have a baby. You have every chance of having a baby and I hope it happens soon for you Xx

[FrancyItaly in reply to Jess1981]

Do you think this could have happened just as a chance? I don’t know how I can even enjoy a pregnancy. Now I don’t even feel like having a FET and I’ve been waiting for it patiently for so long so it’s crazy I’m saying this! I am more than ready to do it, I would just like some support for peace of mind. They gave us an appointment on Tuesday, hopefully I will be able to ask some questions then x

[Jess1981 in reply to FrancyItaly]

I think it's impossible to fully enjoy a pregnancy after any miscarriages. It feels like I'm on a "white knuckle ride " ( my dads description) until my baby arrives safely, after losing Amelia I won't feel totally safe . I keep looking over my shoulder. Miscarriages can be just "bad luck" which is a term I really don't like. I think miscarriages and loss of a baby are still not understood well within the medical profession. ☹️I think it's positive they've ruled out a lot of potential issues that could have caused the losses but I understand it's very upsetting not to know the reasons why your babies just died 😢 I felt like that with Amelia we were so desperate to know why she just suddenly died to try to make some kind of sense of it but without clear answers I've been left to wondering if I could've done anything to have saved her ( even tho logically I know that isn't possible heart says different) Part of it gives some closure and if there is a reason you may be able to prevent it from happening again. It is scary I was just trying naturally ( after my endo was diagnosed and properly treated) I can't imagine having an IVF resting on it. ☹️ I just told myself there was no reason why another pregnancy couldn't work out and if we were prepared to throw the dice enough times eventually we might get "lucky" . I appreciate that isn't the view everyone else would want to take tho. I read stories of hope where a women had several losses and then had baby at the end of it - she also had no explanation for the losses she had experienced but it did demonstrate that even with many losses and no "known cause" you can still have a baby that gave me a sense of hope ( which I hope it gives you too ) I hope your clinic will have clearer plan for you and will give the reassurance you understandably need right now to go ahead. Again I'm really hoping this leads to you having a baby . Infertility is so tough but miscarriages are even harder to contend with ❤️ Hoping your rainbow 🌈 is coming soon Xx

[Fruitandflowers]

I had a hysteroscopy as part of investigations for gynae problems on the NHS, not related to fertility. Then after the two IVF chemicals my consultant said they could do an aqua/3D scan (so that also may be an option) but when he heard I'd already had a hysteroscopy, he said the latter was the 'gold standard' and better than what he was suggesting. He didn't recommend having it again but in the meantime I'd looked into it privately and was quoted £950-£1,500 under local anaesthetic or £3,100 under general. I also looked at NHS and again it seemed you could get referred for one for a lot of different reasons but the wait was quite long.

I took baby aspirin for my FET because the doctor said it couldn't hurt. x

[FrancyItaly]

I feel a bit lost, I don’t even know what tests they did. Hopefully I will find out on Tuesday at my appointment and I will see what they say about medication. If it doesn’t hurt then I want to be on it. Thank you x

[Sandydaiz]

My heart goes out to you. How frustrating. I'm in Ireland so a lot different but I had a hysteroscopy as part of IVF failed implantations. I was also put on heparin for reasons of 'doing no harm' rather than a medical reason. I know the NHS system is different but I'd certainly be asking for the hysteroscopy and about adding the heparin. Best of luck to you. I completely understand the wish to know once and for all.

[FrancyItaly in reply to Sandydaiz]

Thank you! I’ll ask, hopefully they will help somehow. At least I can be a bit happier about the transfer x

[Sandydaiz in reply to FrancyItaly]

Just wanted to mention also that I had the ERA too but also the Alice and Emma test. One of them(can't remember which is which) came back that I had a high level of bacteria in the uterus. So I was prescribed a vaginal pessary for 10 days. It was a probiotic. Got it in Boots, called Caneflor or something similar. I don't know if it made a difference but it worked anyway. Might be something to ask if you were to add in, would it do any harm.

[FrancyItaly in reply to Sandydaiz]

I am already taking vaginal probiotics, my gynecologist gave it to me when I went to Italy a month ago! I started this month. I will ask about it on Tuesday. Thank you for your help! Xxx

[Legallyblonde39]

I've had 2 miscarriages at 6 and 7 weeks and 5 early chemical pregnancies. NHS tested me and nothing found. Basically it's my age and pot luck which is why we are doing ivf. Mentally it's tough not having a specific cause but I just look at it as my body's way of saying this pregnancy isn't right for you. Sucks x

[FrancyItaly in reply to Legallyblonde39]

Sorry for your losses! I’m doing IVF because I have Pcos and I don’t ovulate naturally. I’m 33 this month. I have the feeling the just think is bad luck so I have to push for some support. I don’t know, I will see what they say on Tuesday x

[Hanj10]

I had 5 miscarriages and one failed FET my nhs recurrent miscarriage testing all came back normal but I did immune testing at private ivf clinic for TH1/TH2 ( T helper cell ratio) and PAI1 polymorphism 4g/5g both which came back as issues. I was given steroids for the TH1 and baby aspirin and inhixa injections (blood thinners) for the PAI 1 gene. My 2nd FET worked and I’m 36 weeks now. If you struggle with NHS (they basically told me after the initial blood tests there’s nothing more we can do it’s just bad luck) then maybe consider getting your gp to refer you to Coventry and Prof Quenby at the tommys research clinic. They offer further tests and are more helpful!

[FrancyItaly in reply to Hanj10]

I will ask for baby aspirin and blood thinners, otherwise I will go privately for these but I still need to have transfer with NHS. My immune testing (Chicago blood tests) I did at the private clinic came back normal too! So honestly don’t know if it was just bad luck but I will see what they say on Tuesday and take it from there!

[Zuna2017 in reply to Hanj10]

Which clinic offers immune testing in the UK? Do you have the names of the tests?

[FrancyItaly in reply to Zuna2017]

I did it at ARGC, it’s very pricey but worth checking! x

[Hanj10 in reply to Zuna2017]

I did them at care fertility x

[Positivechangeplease]

I’ve heard they don’t investigate properly until 3 recurrent miscarriages - which is a lot and something Tommy’s are trying to change. Were you on progesterone supplements? As I’ve heard a weak cervix can contribute to miscarriage. And they advise those patients to take progesterone for the entire time (certainly doesn’t harm).Have they found anything on scans that looks abnormal? Did your lining grow sufficiently etc. I do think it’s odd they haven’t offered you anything else unless it’s because the rules are still 3 recurrent miscarriage. I’m so sorry for your losses. I too had a natural pregnancy with miscarriage before ivf now. And very scared it might happen again.

[FrancyItaly in reply to Positivechangeplease]

No absolutely nothing. My lining was excellent. It was trilaminar and 12.7mm a week before transfer (the day of trigger!) I was only on 800mg Cyclogest per day, no other meds! They did all tests nhs do for recurrent miscarriage, they also did Cytogenetics test for free on my miscarriage tissue (even if i had “only” 2 miscarriages)

[Positivechangeplease in reply to FrancyItaly]

I was offered an ERA after my first transfer didn’t work. But not covered on the nhs and at a cost of 1700. Don’t know if it’s worth you trying that? And sounds like it wasn’t progesterone as you were taking that. It could just be unlucky as someone mentioned above but that just sounds like such a cop out I know. 😥 sorry can’t be of more help - it’s awful to not know what caused the miscarriage.

[joey81]

Hi FrancyItaly, so sorry youre going through all this. Its such a draining journey. Ive just had my 4th miscarriage and ive been offered a hysteroscopy by the recurrent miscarriage clinic as i have a stubborn but if tissue left inside, not sure if they would have given it otherwise. I think you should push your gynae for it as part of investigations. Also if you have work insurance, they do cover it as long as u dont say its fertility related. Btw how long did you have to complete your FET? Did you get an extension on your 12months due to covid? I recently received a letter from my nhs hospital saying that 12months is up so my egg collection was basically wasted and that i would now need to pay for my FeT for the nhs funded cycle! I didnt even have a single transfer, not fresh or frozen. Im so annoyed

[FrancyItaly in reply to joey81]

For me it was quick. I was referred in March. My funding was accepted in July and I had the fresh cycle the same month! So I have until July 2022, now I am only available for one FET with NHS. Sorry for your experience! I don’t think that’s fair if it was during Covid, you should talk to them!

[Core]

I got referred for a hysteroscopy by my clinic after 10 failed transfers, I hadn’t thought to ask before though, maybe you could ask them if they’ll refer you for one?xx

[FrancyItaly in reply to Core]

For failed you mean they did not implant or you had miscarriages like me? I would like to ask, at least ask to be referred for it, I am sure it will take ages but worth trying it all xxx

[Core in reply to FrancyItaly]

Didn’t implant, to be fair I got referred end of August then had a call end of October to book in, I couldn’t book as I was doing another transfer and haven’t heard since but plan is to chase it up tomorrow xx

[FrancyItaly in reply to Core]

Good luck! I’ll try to ask too! x