Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

Hello all, welcome to new people. To those who are low on hope and feeling overwhelmed by it all, we have all been there - you are not alone in those feelings.
To those currently pregnant, one day at a time and hang in tbere.
To those thinking about Coventry, I would highly recommend it - the testing has been covered by the others just wanted to add that their attitude is more helpful as well, than some other places I have encountered.

I appear to be locked out of fb so can't post on there. Fb think I am some kind of risk and have been insisting I send them my birth cert or passport (copies) before they will let me back in. I'm not doing that! If anyone has any idea what I can do (maybe someone on the fb group would know???? I know others are far more used to fb than me) let me know if you wouldn't mind.

That's odd bootles. I've heard of them asking for a phone number to send a confirmation text before, but never a birth certificate! Have you refused any other security stuff like that, that might cause them to worry?

I know March its weird. They asked for a phone number which I gave, and then felt a bit stroppy about them having so much info so hid my D.O.B and then worried my mobile was on display so tried to check that was hidden..maybe I did something else!

panda good luck with Coventry - they are quite straightforward to get an appointment with, and clinic days are mon and fri, for which you should be 2 cycles post mc and about 10 days post ovulation. You can't ttc the month you go due to the uterine scratch. Sorry if tbe others have already said this - I can't scroll back on phone.

Hi, it's very quiet around here these days. Could someone let me know how to join the FB group please?

bootles I've no advice but I've asked in the group for you!!

mimi if you pm me your Facebook name and a description of your profile picture I'll add you as a friend and invite you to the group (then you can defriend me!)

Bootles, i have just read of your locked out status - how dare they! (Although now i do gave a really good reason to get back on here!) I have no technical advice as i am a complete luddite, but how about setting up a new account? Find all your friends, send out your requests, get back on the fb group. I know liads of teachers who have had to have a new account with a psudoname due to pupils finding them and sending 'friend requests'.

Hi All

I've seen this post on recent trips to the mc board but was hoping not to have to join. Today however I've just started my 2nd mc so hope it's ok to join and hope to understand more about what happens next. Last mc was on August bank holiday Monday, we were lucky to be caught fairly quickly this time. Both have been early days today at 5+4, last one 4+6. We have been ttc#1 for 28 months now and have had no help from the dr's other than a Hycosy, SA and blood tests during this pregnancy which I demanded after being basically left to rot with no help. The one helping hand the dr's have offered is loads and loads of time to just go away and keep trying which is about as helpful as a chocolate teapot.

I'm going to have a read back over the last few pages of the thread so try to get to know you all.

Waves to everyone!

bootles could you set up an account with a diff email? Sounds dodgy sending your birth certificate, I would definitely be cynical.

Welcome Vap and sorry for your losses. You could ask your GP if they'll do blood clotting tests (and anything else), but they don't routinely test until after 3 mcs. You could also ask them about trying progesterone and heparin for your next pg.
There is the implantation clinic at Coventry hosp where you could be tested for uterine natural killer cells, an elevated level is said to play a part in mc. And as part of their treatment protocol they generally suggest progesterone, heparin and steroids (but only steroids if your levels come back high).
Hope this is of some use. I joined this thread after having 2 mcs and found it difficult knowing what to do (until these ladies helped me) as I couldn't bear to just 'have another mc' in order for the NHS to help me with testing etc.

Hi bumble thanks for your reply. Yes, I've been reading on here all about Coventry and will definitely give it a try. NHS won't give me progesterone under any circumstances as "there is no proof" even though so many ladies are given it. Very frustrating. I read in here you have to have had 2 normal cycles before you can book in. Is that correct? Will they prescribe progesterone? I have my next NHS fertility appointment at the end of January so hopefully they will do some tests as we have now been ttc #1 for 28 months. If they will see you in Coventry after 1 normal af then I should be able to go in Jan. Hopefully.
Any ideas when a hpt will go negative if you have a mc at 5+4?

Yes that's right, after 2 af, then call them when you get a pos opk after that and they'll fit you in 7-10dpo. They tend to give you an initial prescription for progesterone (4 wks worth) but then the rest is up to your GP or consultant to prescribe. They have said though that if you have problems getting a prescription, they will do a private one.
I wasn't under a rmc consultant (having 'only' had 2mcs) so my GP prescribed them. It seems gps Are a bit hit n miss with some prescribing no problem, and some refusing.

Sorry not sure about hpt, but wouldn't have thought it would take too long, within a couple of wks maybe.

Thanks barking, march freckle and bumble..yes I need to get back in with a new account. It's driving me nuts seeing e-mail alerts, a line of a post, and that's it. I'll try and get on to it.

vap hello, and sorry for your losses. I got meds from Coventry by taking their letter with my results and treatment plan to the gp, and also epu. I described them as an NHS based clinic, where a one off payment is required (I might have said private NHS based clinic or something) and had some luck with the gp (progesterone and prednisolone) and heparin from my epu - they are particularly good.

I agree a hpt may take a couple of weeks to turn neg - not really sure as mine were later and I tended to get my cycle back within 4 weeks (luckily) so tended to go by that more.

Hello ladies, may I join you?

I'm so sorry for all of your losses.x

I have a six year old DS, and married his step dad this year. Since then we've lost two pregnancies. Both early - six weeks and eight weeks, in July and in November. Am struggling recovering this time around, with a few complications. Emotionally I'm a wreck.

The GP has been less than useless - he argued against even doing blood tests, though I have persuaded him that is needed (I have PCOS and need to know my hormone levels), as well as a referral back to the gynecology team - I've had years of undiagnosed gyne issues which, combined with two mc, I am going to get to the bottom of, whether I'm fighting against the doctors or not.

The hardest bit right now is I've lost someone I thought was a best friend in relation to this. The positive (I will try to find one) is that DH is amazing, without question, and is my rock, along with some wonderful friends.

I can't stand the idea of intimacy right now, but we want to TTC again, when I'm ready.

Right - long intro over. Looking forward to getting you all.x

Hi elf sorry you find yourself here and for your losses this year. Sadly many of us get use to having to battle GPS and doctors on here so don't feel alone in your struggles with your gp. Keep chasing them for the referrals. Your recent loss wasn't long ago so give yourself time to feel more like intimacy with dh. Many of us have lost friends along this path but one thing you'll find on here is a bunch of new ones who understand what you are going through. More than you can believe! Xx

Hi, after a missed miscarriage in Sept (3rd) I went for my first appt at the recurrent miscarriage clinic to find out that I'm pregnant (only just!) 5 weeks, having quite bad cramping on one side and feeling like a complete emotional basket case! Considering my periods have been all over the place and I've had about 3 weeks bleeding free since September it's a bit of a mystery

Whispered congratulations consider. Hoping this is your rainbow baby. Did they offer to monitor you at all? Extra scans etc?

I might get an early scan depending on how busy they are, main advice was to reduce stress levels (ha!) And then telling me what would happed if/when this one fails. Not the most useful appointment in the world!

Everything crossed for you Consider.

Have had my appointment for the gyne through. It's been outsourced to a local private hospital, which obviously isn't good for the NHS but hoping maybe a completely new team might get some answers - or at least some investigations! - for everything.

Fingers crossed and willing this one on consider X

Welcome Elf and sorry for your losses It's when these things happen you find out who your real friends are and I think many of us on here have distanced ourselves from people we thought we could rely on. Good on you for being determined to get to the bottom of your problems and seeking testing. You won't regret it! X

Hi ladies, I am new here I am 40 (41 in March) and Iam just staring my fourth miscarriage this year.
My miscarriage journey started last December when I went for my 12 week scan and the baby had died at 8 weeks 5 days since then I can't seam to keep hold of my babies past 6/7 weeks.
I had blood taken on Monday after my latest scan at the EPU showed something but was inconclusive my hcg levels were 329 and my progesterone 2.4. I started bleeding yesterday morning. I had to go back today and thave more blood taken which showed my hcg level was 121
I have a little boy who is 2.
What advise do you ladies have that I can do? I have been referred to be tested for reoccuring miscarriages and they can't find anything wrong so I am wondering if I might need some progesterone help when I am pregnant.
I would really appreciate any help and advice. Xx

Welcome marcia, but so sorry you find yourself here. So sorry to hear about this latest loss. I know how hard it is to keep going after so many losses, but there is still hope.
Many of us have had the 'normal' result from the rmc testing and not found ourselves able to accept that result. For me, and many others, that has led us to further testing.
I went to the Coventry implantation clinic where I was tested for uterine natural killer cells (uNK). My level was high, so I was treated with steroids, heparin and progesterone for the first 13 wks of my next pg (now 27+4 pg). I don't believe I would be where I am without them. This is definitely an option you might want to explore and is relatively inexpensive (£360 one off fee), compared to other private options.
It sounds like you don't have an issue getting pg. One of the theories coventry have is called hyperfertility. It's where your uterus is too receptive, but not selective enough , so it accepts unsuitable eggs that would normally be rejected. I think it was part off my issue so I had 5mc in 17 months before finding the right plan.

We put together a spreadsheet with some of the clinic details that people have been to. There's a link to the google sheet on page 1 of the thread, just above the stats sheet. If you have any other questions I'd be happy to try and help. In the meantime, look after yourself. Hope you have lots of support IRL xx

Hello all, spent christmas eve in hospital having erpc having 3rd mc this year (lost at 13 weeks this time, 6 ish last time, 8ish weeks first time). Now in bits, relationship fairly battered, been told i will hear from a consultant in about a fortnight (am sceptical). Would love any advice on what to expect and what to ask. Sorry for everyone else's losses. It is shit.

Hey everyone I'm just looking for some advice...
I've had 6 pregnancies my first I was 21 and lost baby girl at 27 weeks. I've had a further 5 early miscarriages. My last one with two positive scans and then no reason for baby heart to stop. I have had tests and been given no answer. I was told because I'm still young (27) I should just keep trying! I just don't know what to do. Has anyone else had miscarriage after miscarriage and had a successful pregnancy? No one around me seems to understand it's not easy as just getting pregnant then losing the baby its the time between finding out and then going into Hosp for a procedure or having to go to the toilet and bleed s much and wondering is that the baby or just a clot!! It's so bloody hard.
Sorry for the rant I just need a ray of hope to tell me it's possible!
Thank you
Louise x

Hi, I've sort of come and gone from this thread a few times and am now back. My history is 1 ectopic (treated with methotrexate), 2 early miscarriages at 5/6 weeks and then a mmc at 11 weeks (baby's heart stopped beating at 10w after seeing hb at 6w). That was in late January 2013. I was seen in the rcm clinic at St George's in 2014 and was told nothing was wrong just unlucky but that I'd be given progesterone and aspirin and something else (I can't remember) once I conceived again. We were planning on ttc again but in March this year I had an abnormal smear and needed a lletz. I got the all clear in October time - such a mess as they now don't think I had any abnormal changes!

However, I am now hoping we will start trying. I'm going to make an appointment with my GP to ensure that the info I was given by the rcm clinic is in my notes so I'll be given the meds once I'm pregnant and then will start the process again.

I'm excited / terrified. The mmc had a profound effect on me. I think I dared to hope and I shouldn't have. Hope you don't mind me tagging along :)

Welcome pass, lbann and kirin, though sorry that you find yourselves needing to be here .

pass, if you have been referred to an rmc consultant then that's good news, although you might have a bit of a wait before an appointment. Many of the rmc prefer to wait 6 weeks before taking the bloods for the clotting tests, as your pg bloods will be different from non pg ones. When you get your appointment they will probably take about 8 vials of blood for all the clotting tests. They will hopefully offer you a uterine scan to check for any shape abnormalities, adhesions and things like polyps/fibroids. You may also be offered karyotyping on you and your partner, to look for genetic causes, although a recent change in nhs policy means that this is no longer routine unless karyotyping on the embryo (if you had it) comes back showing a possible cause. Also this is quite rare (less than 5%), and there is no specific treatment, so it's just keep going until you find a good egg/sperm combo.
In 50% of cases no cause is found and they put it down to 'bad luck'. This term makes me very

You're best to write a list of questions before you go so you don't forget anything. Make sure you ask about what support will be offered next pg (extra scans, appointment with the consultant etc), and how you access that support. I didn't ask this and when i rang the secretary with spotting in the next pg it took the consultant 4 weeks to get back to me, by which time I'd miscarried again. Also ask about what testing they are doing and what treatment they might offer. If you are thinking of seeking other testing/treatment, such as coventry, it would be worth finding out how open they are to prescribing that drug protocol. (My consultant refused to prescribe the steroids, so i had to go cap in hand to my gp.)
I was able to get some extra testing at my gp (full blood count, blood sugar, hormones, thyroid function, coeliac screen), which my consultant refused to do. All came back normal.

After this disappointing 'normal' diagnosis, and my 4th mc, i went to Coventry implantation clinic, and tested high for uNK cells (mentioned in post above). I would highly recommend them as a next step for anyone who had normal nhs results.

I had 5 mc in all, but am now 28+4 pg following the treatment (steroids, heparin, progesterone) from Coventry. I don't believe I'd be here without them.

lbann, persistence is important, and with my last two mc they may have been just 'bad luck', but i just didn't buy it for all of them. For you, after 5 early and one late mc, i definitely think it's worth you looking at some other testing. Coventry is a good place to start as it's cheap (£360) compared to some of the private options. There is still hope and lots of good news stories from this thread, although since the hacking, most have moved over to our facebook group. If any of you want to join that, pm me your name and a description of your pic and I'll try and add you.

Hi all,

I just wanted to post to thank those of you that supported me through such a tough time when I had my miscarriages. I truly couldn't see the light at the end of the tunnel but felt really touched and comforted by those that pointed me in the direction of help, told me about the Coventry protocol and replied when I felt so low. I really hope this encourages those that are going through the heartbreak at the moment.

We have just had our little boy before Christmas. After ignoring the fact I was pregnant for nine months I was able to look at our little miracle baby and let myself fall in love with him. He is beautiful. I really hope everyone on here gets that moment too. Lots of love and strength to you all xxx