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3 years and 4 miscarriages later... "we're pleased to say all the results are clear". So why can I not stop crying?!

(9 Posts)
10storeylovesong Wed 09-Nov-16 13:29:59

We've been ttc #2 now for 34 months. I'm so extremely grateful for the little miracle I already have - he was born at 27 weeks and after being told at 21 weeks that he had minimal chance of survival he is now a happy and healthy nearly 4 year old. I know how very lucky I am, but I can't seem to shake my longing for a second child.

We had all the fertility tests after 2 years of trying with no luck, and everything was clear so diagnosed with unexplained secondary infertility. I then went on to have 4 early miscarriages (between 5-6 weeks) in 6 months early this year and was referred to early miscarriage clinic. They've done a number of blood tests and scans "and are delighted to tell me that all the tests are clear". So why do I now feel so helpless and hopeless?! They've offered me an early scan at 6 weeks if I fall pregnant again - I can't get to 6 weeks so what good is that?? My friends and family keep telling me it's a good thing it's clear, but if I don't know what's wrong, how can I fix it?! And if there's nothing wrong, why can't I stay pregnant?!

FlyingCat Wed 09-Nov-16 13:38:59

So sorry for your losses and sorry you didn't find something fixable. I completely understand why you are upset - effectively the miscarriage people have, as nicely as they know how..., said "not our problem mate"! And left you without next steps.

Have you spoken to a fertility consultant? They focus not only on getting you pregnant but also keeping you pregnant.

What were the early miscarriage team looking at? Just you or also your partner? If there is nothing structurally wrong with you or your partner then one possibility is you are together producing a higher number of abnormally chromosomed embryos.
Further investigations into your eggs and your partner's sperm or possible immune conditions might identify a cause, and Possibly a treatment like ivf could help identify the strongest embryos for you and check for abnormalities before embryos are put back?

All is not lost, the journey for you may just be a little longer. Stay strong I wish you all the luck in the world.

10storeylovesong Wed 09-Nov-16 13:43:17

Thanks for your reply. They've checked myself and my partner and can't find a single thing abnormal. They even checked my bloods as the prem birth was due to a huge blood clot so suspected Hughes syndrome.

The fertility clinic have also discharged us, as they won't recommend clomid due to the risk of multiples with my prem birth history, and my husband is dead set against IVF.

I feel like I'm at the end of the road now, and not sure I know how to deal with it.

casiopeia Wed 09-Nov-16 13:44:32

So sorry about your miscarriages flowers, it is sh*t and so disheartening, so many times I wished something was actually found as it would be easier to either accept or treat.

I was in a similar position (but trying for our 1st), and after being given the 'all clear' at St Mary's miscarriage clinic, I threw myself at googling. After all the information on so many different conditions, I learnt about NK cells (simplistically an autoimmune disorder where your body's immune system attacks the unknown tissue- which is the baby) and decided to have tests done-privately available only. I was diagnosed with high NK cells and currently 16 weeks pregnant on the high NK cells protocol (5th pregnancy and first which went on past 9 weeks) . All is not won yet but very hopeful.

This may be not your case and irrelevant, just wanted to say there are many tests and treatments beyond what NHS offers. Don't give up your hope yet x

sycamore54321 Wed 09-Nov-16 13:59:23

I am so sorry. I have also been in the position of hoping the tests would show something so that at least we could try to fix it. And I know the frustration and pain of being told all is well, as inside you are screaming "if all is well, why am i not still pregnant".

My doctor was insistent however that no identified problem was better than having a problem identified and not knowing if treatment would work. She also put me on aspirin for my successful pregnancy despite the tests showing no blood issues, saying that it couldn't harm and there was a chance of a blood issue that technology hadn't yet got around to identifying. Could you ask your doctor about possible things like that, treatments that aren't necessarily indicated for you by testing but that don't carry large downsides?

And most importantly, do you have someone to talk to? I had the most amazing bereavement support medical social worker who I credit with saving me from depression at the very least. It was not always easy to find help or to ask for it but I hope there is someone you can turn to.

TheTantrumCometh Wed 09-Nov-16 14:16:47

I think there can be the thought of "you've got one, another one will come along soon" or "at least you've got one" etc from some people who just don't grasp how fundamentally it can effect you.

I've not experienced fertility issues myself but it's been heartbreaking just supporting friends through it. I can't imagine how terribly hard it must be for you to not have an answer as to why this is happening to you. If there's an issue then at least you can try and fix, or if there is no fixing, try to come to terms with the situation, but you're in limbo at the moment.

Go easy on yourself, take some time to process the latest news and then discuss with DH what you both want to do next flowers

10storeylovesong Wed 09-Nov-16 15:52:52

Thanks all, there very much is the feeling of I shouldn't be feeling like this as I'm so lucky to have my ds, which makes me feel bad for not being grateful and is a vicious circle.

I have been taking aspirin as the prem birth was caused by a huge 12 cm blood clot which formed at 21 weeks and they still don't know why. All it seems to do so far is to prolong the bleeding when I miscarry - in Feb I miscarried at only 5.5 weeks so was told it should just be like a period, then bled constantly for 6 weeks and had to have two lots of hormone treatments to stop it. I will give it another try though as so many people seem to have good results from it.

That's really interesting about the NK cells - definitely something to look into, thank you.

I've not got anyone to talk to at min, I was offering counselling after my ds as it was touch and go for a long time, and he had multiple operations, but I declined it thinking I was ok and dealing with it. I think it was just delayed though tbh, and then this isn't helping on top of it. I have googled local services as I have a very stressful job as well and struggling to cope at the minute, but don't know where to start.

sycamore54321 Wed 09-Nov-16 16:00:35

Just to be clear, I'm not specifically advising aspirin or otherwise for you, just suggesting that as an avenue of communication with your doctors, to explore the limits of the testing and ask if there are things that you could do with little risk even if they are not specifically indicated. Please don't take or not take aspirin on my word only.

And please please do look for aomeone to support you. It doesn't have to be formal counselling if you are not comfortable with that. I hated having to take the first steps of asking for help, it seemed so overwhelming but please believe me when I say it was worth it.

Of course you are grateful for your eldest child, that does not in any way de-legitimaise the hurt you are feeling now. I don't even think the people who say those things actually even mean them. They are just desperate to support you but don't have the right words to say.

Loopyaboutmy2boys Sun 13-Nov-16 08:17:23

I've have 2 boys followed by 12 early losses since 2013

After 3 mc's you will usually only be offered basic standard tests by the NHS. If you have a good consultant they will do a hysteroscopy to check for any obvious issues in your uterus. That's pretty much all the NHS does if you have a child already, the only other thing would be clomid but you say that is ruled out.

Hope some of this helps you :

A referral to Coventry on the NHS is definitely worth doing. It cost me and many others £360 before to have their tests but it is now free. I went back to see them on the NHS for the extra tests. They will do a biopsy to check the level of uterine NK cells, and they have a new test CD138 which checks for an infection. They also do a uterine scratch and ran more extensive blood tests on me than the standard NHS ones.

Another option is to ask your GP for an NHS referral to Mr Shehata at Epsom Hospital. I have also been there on the NHS and they test the level of NK cells in your blood (Coventry only test the cells in your uterine lining). Epsom also run their own other blood tests.

I tested for normal uterine NK cells at Coventry a year ago and the scratch made no difference and I carried on having MC's. I've just had my results from Epsom and have been diagnosed with high blood NK's and a couple of other things were flagged up and so I'm now going to be trying a new treatment protocol that includes prednisolone from ovulation. I know a lot of women from an old RMC thread on here that moved to Facebook. From that group there are quite a lot that have successfully had babies or are expecting babies now thanks to taking prednisolone. You get prescribed this drug from Coventry if you have high uterine NK cells and also from Epsom if you have high blood NK's. I begged Coventry for it but they wouldn't let me have it, even though I was convinced that there was a reason for my losses, I didn't buy into the theory that they were all abnormal embryos, no one would have such a bad run of luck! They all argue the toss over whose theory is correct but they are both using the same treatment and it seems to have worked for a lot of people so I urge you to get referred and not waste time like I did.

There are also tests referred to as Chicago tests, and the Athens Serum tests, it just depends on how much money you can throw at it, those were out of reach for us but I know people who have been successfully treated following those tests too.

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