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Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

Recurrent Miscarriage Support - tests, treatment, trying again - thread 9

995 replies

bakingtins · 19/01/2014 07:41

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

OP posts:
JBrd · 28/01/2014 16:55

Fab news, baking! Dirty weekend?! Shock Grin A lady in your 'condition'? Wink Have a great time!

cutie4416 · 28/01/2014 17:33

hey there, i have been looking for other woman who have been through what i have been. someone to talk to.
i have been pregnant 11 times i believe now 1 son to show for it. i am pregnant now, only 5 weeks along. all my mcs have been around 7 weeks, they took a very long time to figure out my problem. they have finally. im on tons of different meds to help this pregnancy. praying it does. my son really wants a brother or sister.
i have antiphospholipid anti bodies syndrome.

Notgivingup1 · 28/01/2014 18:47

Great news baking and enjoy your long weekend!

squizita · 28/01/2014 19:18

Cutie hi. Sorry to hear of all your losses. I've got a similar condition and similar losses in terms of when but only had 3 before I was tested. They have me on meds too - so glad youre now diagnosed! Sending positive vibes for you!

cutie4416 · 28/01/2014 19:35

hi wouldlove to be included in your chat. does anyone here have antiphsopholipid antibodies syndrome??

TinyTear · 29/01/2014 06:18

Here we go again...

Today I am pregnant...

tannyLoo · 29/01/2014 06:59

Tiny I'm really pleased for you. Totally understand how you're feeling. Good luck x

I'm probably out again. Number 5. The lines just aren't getting any stronger after 5 days, so I think it might be a chemical pregnancy. I'll ring EPAC in a bit, although I'm only 4 weeks so they might not see me.

I was so hopeful yesterday.

Bollocks.

tannyLoo · 29/01/2014 06:59

Tiny I'm really pleased for you. Totally understand how you're feeling. Good luck x

I'm probably out again. Number 5. The lines just aren't getting any stronger after 5 days, so I think it might be a chemical pregnancy. I'll ring EPAC in a bit, although I'm only 4 weeks so they might not see me.

I was so hopeful yesterday.

Bollocks.

TinyTear · 29/01/2014 07:03

Oh Tanny, sorry to hear that. How are you feeling?
I only tested the once with my DD so never followed lines getting darker.
Try and book a 6w scan

Justonemoretime · 29/01/2014 07:12

Hi Cutie, sorry you find yourself here, welcome. You'll find this thread is a really supportive and a great source of info.

Tiny congrats... hope its a sticky one... fx.

Tanny, are you near London? UCLH at Euston have a walk in EPU who are excellent. Good luck.

tannyLoo · 29/01/2014 07:14

Thanks Tiny. A bit low tbh. You know it might happen, but when it does, it still feels like a kick in the gut.

Testing is the only way I get any inkling of what is going on, and this fits with my last couple of MCs, where they didn't even get going properly.

Sorry. I really don't want to rain on your parade!

tannyLoo · 29/01/2014 07:26

Hi Just. Thanks. I'm near Bath, which is my local EPAC. They know me there now, which helps.

AhBut · 29/01/2014 08:39

I've been drawn to this thread after many years if being away from the pain of RM, and hope you don't mind an old hand popping in to say hi, and hopefully to give you some hope.

It is bollocks Tanny, you're right, and I really feel for all of you. Our pain stopped over 12 years ago, with a DS finally, but the pain keeps coming back at times to haunt you!

To give you hope, he was my 10th pregnancy after losses at 22, 19, 14 and a load early on. Plus another early one after him, at which point we decided to call it a day. But I got there - drugs, suture, surgery and months in hospital. And he's wonderful, which I hope will give you all some hope that it can work out. I smiled at references to Raj Rai .... He delivered my son almost 12 years ago! Glad he's still around.

A friend just texted me her 12 weeks scan photo and it hurt, still hurt after all those years! I'm paying the price for all the ERPCs and surgery now with gynae problems, but that's a small price to pay for what we got in the end.

Keep going ladies, if I can do it anyone can! and thanks for letting me listen, it's been cathartic for me!

JBrd · 29/01/2014 08:44

Congrats, Tiny, fingers crossed it's a sticky one!

tanny Sorry to hear that things are not going well, but don't give up hope just yet! Can you get blood tests done to check your hcg levels?

aMuminwaiting · 29/01/2014 08:52

Thanks for the motivation AhBut, it's really good to know there's hope. You say drugs, suture, surgery. What drugs did they give you? What kind of suture and surgery? Are you ok talking about it? I just want to feel like next time will be the right combination for me I guess. My times were similar to yours; 21+5, 11, 7, 12 (but had stopped going at 8), 5 and 17weeks.

I've had so many people telling me my body has been through hell and I'm going to pay for it long term. But what's the alternative? It's not our fault our bodies don't do what other seem to do as easily as sneezing! Also, my bug bare is (and I'm sure I'm not alone here), people cutting out bits of magazine articles/newspapers or excitedly telling you as soon as you walk in a room that there was some woman on the telly who'd had loads more miscarriages than you and she's got a baby now. I know they're trying to help but it grinds my gears people. I told my Mum last time she plonked a newspaper article on my kitchen counter that I'd waited a long time to see professor Regan and it would be a cold day in hell that I'd stride into her office with a newspaper article and say, "look this woman had 14 miscarriage and then they gave her this drug which I'm sure as a specialist in your field you must have just overlooked, can I have my baby now please?".

AhBut · 29/01/2014 09:38

Hi muminwaiting, I agree, there's no alternative and I wouldn't have done anything differently even if they'd warned me. I think I'm just a bit surprised how my current problems have made me relive some of the old emotion.

What I did, and it might not work for everyone, was built a wall around me and put myself in a bit of a bubble. I lost touch with good friends because it was too difficult (kids due on the same day and stuff) .... But we picked up again a few years later and they all understood and we're fine. Their kids are all older than mind, and I've stopped wondering 'what if' and now they help me out with advice as they've been there and done it already! During my successful pregnancy I literally only talked to my mum and 2 girlfriends, one who did all the practical things like buying me clothes, food when I was in hospital etc, and never asked anything emotionally of me. She was amazing!

I get the impression that medically things have really moved on since my time. Lesley Regan was relatively new, and I've never heard of Professor Q. I had a septate uterus with double cervix and vagina, which took a few goes to separate and had to be re-done later too. I have Sjogrens, but no other auto immune problems. My first 22 week loss was an IUD, no real reason found except possibly the uterus which hadn't been corrected by then. My cervix seemed to become incompetent over time and the suture ripped through it when I went into labour with the 19 week baby, normal baby, no reasons found.

With my son I had an IVF cycle, the rationale being to get a load of embryos to analyse to see if there was a pattern with the early losses. No one expected me to actually stay pregnant, but I did, only to be told at 18 weeks that the 12 or so spares that they'd analysed we're all completely abnormal. By then my cervix had started to open and I'd had another stitch, but was faced with a potentially abnormal baby as his was the only embryo they hadn't analysed. We opted just to carry on, rather than risk an amnio, and I had the equivalent of 20 week scans every week to check him out. I took aspirin and clexane throughout, and was on a trial drug to maintain cervix closure. My cervix opened to the stitch at 22 weeks, I survived a DVT at 24 weeks, and I stayed in hospital til he was born at 35 weeks. He had a bed in SCBU waiting for him the whole time, but never needed it! Quite how we got there I don't know, but honestly it really can work.

I think what made the biggest difference to me was feeling like the team at QC were really bothered about me. In my sons pregnancy I could ring whenever I felt awful and they'd just scan me, no questions asked. If you can build that relationship with a team I'd say that would really help. But it's hard to be engaging when you feel like shit and when people are thrusting stories of hope at you isn't it? I always just trusted in my own feelings and tried to block others' opinions out. It's left me with physical scars and emotional ones - I'm the most pessimistic person there is when it comes to my own health. And I've never stopped checking my knickers either - bloody frustrating habit!!

Knowing when to stop is an important question to consider too. After my very last loss I knew my uterus was completely knackered by the look on Mr Margara's face at the HSG, and we didn't want to miss out on DS's early years chasing a dream of a sibling. He loves being an only, it's not what I would have wanted for him, but if you're genuinely happy in life what the hell. I knew when it was time, and that's different for everyone.

I hope that's if some help, am thinking of and feeling for you all.

squizita · 29/01/2014 11:44

ahBut thanks for your story. Wow. It really puts things into perspective, as you say how lucky we are nowadays with treatments and very sensitive scans. I'm feeling very blessed indeed that after just 3 losses I was referred and diagnosed. So happy you got your DS eventually. :)

squizita · 29/01/2014 13:02

Cutie I have APS, a pretty cut-and-dried case. My tests showed no genetic problems, no problems on a scan with my uterus, no factor V, no Lupus etc. I have anticardiolipin antibodies and high thrombo, making me a classic 'no symptoms except when pregnant' APS case (except they think it might aggravate my bad back from time to time).

I have been given a 65-70% chance of success per pregnancy (or at least at this stage, early days, guess it can go up or down I guess) with clexane and 150mg aspirin daily from week 4. I go to St Marys every 2 or 3 weeks at the moment for scans and check ups.

This site is useful for information and advice: www.hughes-syndrome.org/about-hughes-syndrome/pregnancy.php#.Uuj7Y_nFLow

cutie4416 · 29/01/2014 13:47

has anyone had success with taking heparin injections with aspirin?

JBrd · 29/01/2014 13:51

ahBut Wow, what a story! Certainly puts things into perspective... I completely agree about it being priceless having a supportive medical team, it makes such a difference.

squiz How are the clexane injections going? I've now also been told to start again, got the leftover syringes from last time out yesterday. I'm sure there will be some nice juicy bruises soon Grin.

I've also been told to take 75mg aspirin per day - we will see! Hopefully, my GP can arrange for the referral with the haem consultant really soon, so I can ask if I might need a higher dose.

It's all so wishy-washy! My thrombophilia tests (which was repeated twice) both showed deficiency in protein S, which is implicated in clotting mechanisms, but the results were never clear enough to say 'yes, you have a clotting disorder' or 'no, you don't'.
On the other hand, not sure what else they could do if I had, other than heparin and aspirin...Sigh.

Sorry for the rant. I hate this limbo before 12 weeks! Today, I'm going down the route 'It's all going to go wrong again' Sad

squizita · 29/01/2014 14:48

Jbird Found that the 'flabby' bits right at the top/side of my thigh seem to produce only small, dark round bruises about the size of a dot from a felt-tip-pen. Much better than my belly! I checked on Youtube and various NHS pages and the upper thigh seems OK to inject for Heparin (anywhere fatty it seems) so I'm going to rotate between there and lower belly. I used to hate those hard to shift wobbly tops but now so relieved that fatty layer's there to inject!

I hate the limbo too. Keep thinking MMC alllll the time even when (as today) nothing is obviously wrong and indeed my symptoms seem 'normal' for my time (nausea, sore boobs, the usual). I wish I had a see-through tum!!

FiremanSamsWife · 29/01/2014 16:32

Hi ladies

Congratulations tiny, keeping everything crossed for you xx and congratulations baking, huge relief to hear about your dad!

Sorry I've been a bit quiet, just home now from the ERPC, bleeding more than I thought I would and very woozy but not too sore and tucked up in bed. I've just eaten a whole tub of maltesers.... whoops! They're sending away the products for examination so we'll see what comes back from that. Thanks to everyone who replied with what tk expect, I went in much calmer for all your kind words.

Hope all the knicker checkers are keeping calm and thank you for your story ahbut, positive examples help so much.

Hope anyone worrying about mc or who might be mc ing is ok xx

Justonemoretime · 29/01/2014 17:27

ahBut thank you for taking the time to share your story. So good to know that it can all work out in the end. Can I ask, what was the treatment for your Sjogrens? My tests at St Mary's have been all clear, but I have a maternal Aunt with Sjogrens and I wonder whether it's worth mentioning? I have no idea whether it is common in families?

Justonemoretime · 29/01/2014 17:28

Glad you're OK and recovering Firemans. You eat as many maltesters as you like. :)

FiremanSamsWife · 29/01/2014 17:38

Thanks Just, DH has been sent out for more chocolate already Smile