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)

Hi ladies;
I hope this is the right place for me.
I'm 30 and DH 37. Last week we have suffered our third consecutive miscarriage but first second trimester loss
Jan 15 - natural miscarriage 4/5w
Oct 15 / MMC diagnosed at 11 empty sac
March 16 MMC diagnosed at 19w baby had died at 16+3

Mainly I'm here to try to get some answers as my losses all are quite different and the only trend is me and DH.
Also I'm desperate for good news stories of successful full term pregnancies. We do have an incredible 3 year old boy who was concieved, carried and laboured with no problems what so ever.

Andokate I'm so sorry to read this, I cannot imagine a second trimester loss, my heart really does break for you. I imagine the confusion considering you have a wonderful three year old must be even more frustrating for you.

I am looking for help and advise on a series of early loss, and I also want answers and hope

It's so difficult isn't it x

AnnieHoo oh right, sorry, didn't know about Clearblue calculation. However, while your b-hCG is at the low end of the reference range, it's still in the perfectly normal reference range.Your GP is right, it is a normal value - normal values are hugely variable.
What matters is whether it's going up, not where it is in the normal reference range. So really you should focus on what the next one is, and the one after that, etc.

Lucinda15 - sorry I don't have the facebook details as I'm not on the group - hopefully someone else will come along who can tell you how to do it!

Andokate really sorry to hear about your losses. Do you have help from your GP? After 3 losses you should qualify as having recurrent miscarriage and thus should be able to get some investigations done on the NHS. There are various places you can be referred to (eg St Mary's), and you can self-refer to Coventry. See Marchgirl's post near the top of the thread as to what some of the investigations can be...

Can anyone help me with what to expect on a private examination on why I can't keep my babies

I'm so lost

Hello to the newbies and so sorry to hear of your losses.

There is a link at the beginning of this thread somewhere outlining all of the different tests that are currently available for rcm; it was originally put together by march.

andokate I am really sorry to hear of your late loss, which sounds very similar to mine last year (mmc discovered at 20 week scan, dd died between 17 and 18 weeks). It was devastating and truly heartbreaking. I do hope you are getting lots of support and help from your hospital.

Re the Facebook group: I'm on it but have absolutely no idea how to add people. I will post there and get somebody to pop on over and lend a hand. X

Thanks. I am in New Zealand but will be referred to a RPL clinic. We had a series of tests done after second loss and everything came back normal.
We have undergone the same series of tests this time along with post Mortem of the lost little one.
Hopefully we get an answer but regardless I'm not ready to give up on our dream of a bigger family.

Andokate so am I. There are a few people here (both public and private) who have recurrent miscarriage research interests similar to those at St Mary's or Coventry, though they are few and far between. Feel free to PM me if you think I can be of any help in identifying someone relevant (you may well already know who's relevant near you).

I can add people to the secret FB group if you PM your real name and a description of your FB photo. I might need to send you a friend request depending on privacy settings

Penguin - I'm going through investigations at the moment and so far I've had lots and lots of blood tests, a couple of internal ultrasound scans to check the anatomy of my uterus and am waiting for an appointment for a hysteroscopy which is a camera into the uterus to check for any abnormalities and do a biopsy if necessary. I had losses at 6, 6 and 12 weeks last year and have a healthy 3yo who I conceived and carried with no issues at all. I did have a c-section so the hysteroscopy is partly to check that scar tissue isn't causing any issues.

So far I've been seen by the standard Gynae team and then referred to the specialist team at the major teaching hospital for further investigation as the initial tests didn't show anything

Anyone else really struggling with pregnancy announcements??

I've had 3 mc's and I'm feeling like I'm some awful Groundhog Day.

With each mc I go through a phase of finding pregnancy announcements really hard. I'm truly happy for people and keep in mind that I don't know what struggles they may have gone through for their babies (and I know some have had struggles!). But I still feel winded and It reminds me what I have lost and it takes a long time to get over that. but I eventually and feel I'm back on track and feeling ok again generally. But then I have another mc and am back to square one again. And there are more announcements and more babies born and i have to paint on a smile again and God, I just I dunno. It's just a bad cycle I can't seem to get out of!! It's tiring. Sorry - needed to vent....thought u ladies night understand

Totally understand (((lucinda))). It's so hard.

The accumulative effect of pregnancy and miscarriage over and over is bound to take its toll on us. It's a huge emotional strain. Bloody pregnancy announcements at work, in the supermarket, in the car.. God it's miserable!!

I just can't seem to escape it! A friend recently told me she is pregnant and due the same week my 3rd mc baby wld be. She had a scan and going well....I'm so happy for her. Another relative is due next week. We have had a string of births recently. All lovely news and please believe when I say I'm happy for them. But I just feel so desperately sad inside. We have had 3 losses in 9 months and it hurts me so much.

We have stopped TTC until we have had tests. Looking to try again after the summer but I've really lost hope. I am beginning to think there will be no more babies and I'm struggling a lot at the moment. DP has been great but has admitted he isn't as upset about it as I am, and it makes me feel I'm overreacting. I don't know. I just actually want to scream sometimes....I've got so much turmoil inside me and I'm trying to be strong and get over this thing (again!) and I'm pushing it all down but I'm finding it so hard.

Sorry to wallow in it and be down in the dumps. first period since last mc due next few days (I think) so that probably making things seem worse!! Flipping hormones!! Thanks for the shoulder though

lucinda I'm the same. My DH has always been optimistic and hopeful and it doesn't help when you are in a panic and it seems like nobody in the world is helping or listening or trying to help you.

I'm just waiting on results to confirm it but I'm going through my 5th miscarriage right now, it just doesn't feel right again and I know it's not going to last. I can't keep going. This is my last. For me it ends here. This process has ruined me. I have a lot of recovering to do once this is done. But I'm looking forward to getting my life back now. I'm 42 and it feels like the right time to stop anyway. I've tried my very best!

I don't know how old you are but so long as you have time on your side and you feel strong enough then there is hope. But you have to deal with the emotions and not squash them down otherwise it will pop up in stress or what happened to me is I got shingles - it seems to affect your neurology in different ways - anxiety, ruminating, irrational behaviour, anti social behaviour, loss of confidence... What had made me feel better and stronger is protecting myself as much as I can from situations that might be upsetting ( I avoided college reunions with friends kids there because it made me feel left out and sad). I booked holidays so I had something to look forward to instead of putting it off. Plenty of pampering and being kind to myself. I leaned on my DH a lot and he was very supportive (house stuff, cooking).. I avoided alcohol because it brought me down to extreme lows.

I'm avoiding thinking about this current loss as it overwhelms me how sad my story is and I hate pity so much i hate my story. I don't want it to be my story. I want to be brilliant and clever and fun and an important part of the family and friends group I love so much. I'm going to have to carve out a different life than I'd always dreamed of and I'm beginning to think it might not be that bad. But I'm probably a lot older than you so it's different - you still have hope. I wish I could make it better for you

annie I am so sorry for what you are going through - it is just not fair. I admire your outlook and send a huge hug. I think you are being so brave. I know you must have had some very dark days. I hope things get better for you. I am going to try and be positive - in actual fact I felt quite positive and upbeat initially after last mc. I did exactly what you have said, booked some holidays, a spa day, decided to focus on my job (which I have wanted to leave now for a year or two but been hanging on for mat leave!) and I knew I wasn't going to TTC for the summer and could just focus on other things....no baby, no pre-conception tablets, no two week waits, no pregnancy tests....yadda yadda. Just being relaxed and enjoying ourselves this summer. But I think with period due and all the announcements, I've found myself losing the battle a bit last few days. Just feel sad - and need a cry. Sometimes that's all we can do I think. I am having some counselling ao hopefully that will help me feel a bit stronger soon.

Thank you for the support and kind words. Wishing u lots of love and hope for a positive outcome for you xxxxx

Hi, I hope you don't mind me joining this thread. I've had 5 mc now, the latest being 16th Feb. I have my dd who is 3 and had no problems with. I then lost at 12 weeks, 5 weeks (3 times) and finally 11+3. I was found to have a clotting issue and was on 150mg of aspirin. I was so hopeful it would be different but due to my first loss I voiced my concerns. But because baby was growing well and appeared healthy they were dismissive. When I started to feel it was going the same as my first loss I tried to contact my rmc but they never called me back and my gp was dismissive too. Then I was in the hospital and had my baby in exactly the same way as my first loss.

I have a meeting to see my rmc next Tues which I'm nervous about. I was wondering if anyone had any advice on what to ask while I'm there? Can I demand that we try something different to get me over 12 weeks?

My hubby and I are agreed if nothing is changed we are giving up as I can't keep going through the losses anymore. It hurts because I don't want to give up really.

Welcome lexi, but sorry you have need to be here. Did they not prescribe heparin for the clotting disorder? I thought that was the standard treatment these days rather than aspirin. I'd certainly be asking about that. I'm sorry they were so dismissive of you. Sounds like pretty terrible care. Have you had any other testing like nk cells? It might be worth looking into this as another possible cause, but the nhs don't do this test.

Hi annie, I'm so sorry to hear that you don't think this most recent pg is going to work and also very sad to hear that this would be the end of the line for you. Have you had some spotting? In the nicest possible way, I really hope you're wrong and will keep my fingers crossed for you.

Sorry I haven't been on for a month or so. My rainbow baby boy, Niven, was born at the end of March so he's been keeping me busy. For anyone who doesn't know my story, I had 5 consecutive miscarriages between the birth of my daughter (now 3 and a half) and Niven. All standard nhs testing after mc3 came back normal and I was told it was just bad luck, just to keep trying and eventually one will stick. Consultant gave me progesterone to try next time. After mc4 I decided to go to the implantation clinic at Coventry, where they found that I had high levels of uNK (7.9%, normal is below 5%). They suggested prog from 7dpo, prednisolone from bfp and heparin from location scan. I had a fifth mc on the treatment, 2nd month trying, which was a real low point for me, but fell pg the next cycle and now Niven is here. I honestly don't think I would have made it without the Coventry treatment, in particular the steroids, and my local consultant was less than supportive of their research and treatment.

So I just wanted to say to everyone who thinks they might have another issue despite 'normal' nhs testing, trust your gut and seek some more testing.

It's horrible to keep going through this, but you can make it. I hope this gives some hope to those going through difficult times xx

Oh thank you so much marchgirl. It is so lovely to hear about Niven, your rainbow baby . I don't know, maybe I should have gone to Coventry afterall, maybe I still should go. I just felt too old to be pushing it this far. Your story and magnificat's have given me renewed hope. If you can both go through 5 and7 miscarriages then I could do it too.... I have a RL friend who had 11!

My second HGC test came out at 400 ( first was 305) so gp told me to expect a miscarriage. I really hope it comes soon so I can recover quickly. It's hard to believe as I'm still feeling a bit sick and have no spotting at all.

It's only today I'm thinking maybe we shouldn't draw a line?? But I'm 43 next month so it does seem like a good time to stop. I should just wait until this one passes and then make the decision when I'm free of pregnancy hormones. Feel amazingly ok at the moment.

Thank you so much for you responses

Congratulations on your rainbow marchgirl. It's lovely that after 5 you have your bundle of joy at last.

The aspirin seemed to be working for me so was hopeful. My mum had problems after my brother and also kept loosing around the 12 week mark. She had support from st marys after her third loss and had my sister. After my 3rd I went to my local rmc, they ran 3 blood tests and did a scan to tell me I was fine and discharged me back to my gp. I got my gp to refer me to st marys. Before I went to them I suffered a 4th loss. They ran a lot of tests (I can't remember which ones) but they all came back normal. However they told me to come back for the thrombolia (sp??) test when pregnant, which I did and that's how I was put on the aspirin. I thought I was going to loose again at the 5 week mark but I feel the aspirin saved it from dying that young. I just don't understand what's going wrong. With my first and latest I had scans right up until I lost them showing good growth and strong heartbeat. I'll never forget watching them jump around on that little screen. Just feel so lost and alone atm. My hubby and I aren't really talking either as we just end up upset.

Congrats marchgirl on your rainbow baby...such lovely news and gives us hope. I am waiting on my referral to st Mary's but hearing more and more about nk testing and Chicago tests...I've yet to read up properly as I find it all so confusing and I also feel a little overwhelmed and when I read more I get a bit down in the dumps thinking it's going to be a log road ahead. I try and just take one day at a time and I'm hoping st Mary's will find and fix the problem relatively easy!! (A girl can dream!) but in case I need to consider it, and perhaps get ball rolling while I wait for st Mary's, how do you get referred to Coventry? Can you do it on NHS or is it private and if so, how much are the tests?

annie I am sorry the GP has given you bad news I send a hug and hope you are feeling ok. If you are not ready to draw the line it seems there are more things that you can try - but yes, hormones are a flipping nightmare at this stage so allow yourself the time to be strong enough to deal with the 'what next' question.

lexi I am sorry you are feeling so lost and alone. Remember we are all here and we understand. Its just devastating and I'm so sorry you have suffered again and again. It's not fair.

Sending lots of positive thoughts to everyone today - thinking of you all

Sorry to hear about your bad news Annie. I follow the thread on a regular basis and sometimes post for help.
It's so hard to keep going. Sending my thoughts.

Lucinda, my bloods have gone off to Chicago for NK testing. I don't know much about it other than that's where they have gone. I get the results next week.

fraggle how did you arrange this? Who with and how much etc? X

Our fertility clinic organised it. We had level one and level two bloods at the same time, 18 bottles!!! It cost £2600!!! Double ouch.

Just to say I've had the Chicago tests done in Athens for €300 instead of $2000 - they're identical except the NK cytotoxicity assay uses intralipids instead of IVIG to test the killing power of the NK cells

Dr Gorgy apparently accepts the Athens tests as valid, so assume they must be reasonably pukka