lost 4 babies and am completely lost

[aMuminwaiting]

I went with my DH for my routine 12 week scan on Monday. The baby had died four weeks earlier and they sent me for a D&C. Every time we lose a baby it's like being in a nightmare that we can't wake up from. Our first was almost 22 weeks and I had a prem labour in hospital. I was alone because they'd sent my husband home to fetch me some books and things. They didn't even warn him when he got back that our dead son would be laying next to me. The next baby I lost at home at 11 weeks. My DH took him/her into the hospital thinking they would do testing as my first miscarriage was so late. We found out a week later that the form they got him to sign in his grief ridden fog wasn't for testing it was for them to dispose of the baby. The next baby was miscarried at my parents house at 7 weeks. This time my Aunt was staying with us so she took control and told the hospital that this baby had to be sent to Guys for testing and even had to tell them how to store it because the doctor on the phone told me to stick in the freezer until Monday! My DH and I were karyotyped. We were told our results would take four weeks and the babies about seven weeks. 15 weeks later and we still have no results. Straight after losing our third baby I got pregnant with our fourth. I was put on aspirin and cyclogest pesseries. I felt more sick than ever and had no bleeding at all. We thought this was going to be it at last until Monday sent us crashing down to earth. The anesthetist and a surgeon had separately come to speak to me about the procedure many hours before I went in and I'd told them both that the results from my third baby had clearly been lost in the system so please test this baby and not make this life a complete waste too. Just before they knocked me out in theatre I said "please tell me you're going to test this baby" and she said "oh no one's mentioned that". Yesterday my husband spent hours trying to get through to the consultant who had taken over from the one we saw last year. All he got was answer machines. I've been trying for 15 weeks and all I've ever got is put through to an answer machine and never called back. I've never felt so invisible. I honestly don't know what to do anymore. We won't try again because it seems pointless at this stage to keep making lives that will never make it. At the same time this need to be parents is tearing us both apart. We are so alone and no one will help us.

Wow that's a long time to wait for a period. I think mine will be ages this time too purely because the cyclogest messed up my body. Every time I miscarry I beg my body to hurry up and give me my period...NEVER thought I'd be wanting them to hurry up when I was in my twenties! I thought they gave you something to kick start periods if they took forever to return? Or is that just very wishful thinking?! I hope it comes for you soon.

I know he's a treasure. He's taking two days off work to look after his demented clingy wife. Can't wait. That's another thing I never thought would happen, me clingy and pretty much agoraphobic...only the dogs pleading looks and throwing my shoes at me gets me out and I can't get back quick enough.

No one ever mentioned the possibility that trying for a baby would be this hard. Not that I would have listened anyway. It has to happen somehow.

Is it normal to have crazy headaches after d&c? I had a few mild headaches when I was pregnant but for the last few days I've had terrible ones. If I bend down it feels like my eyeballs are going to pop out of my head. Not even the super strong tablets they gave me at the hospital seem to help. Could it be my hormones?

I did have lots of headaches - and I did ask the Dr but she said it was likely to be down to stress than anything else :(

Are you feeling any better?

Physically yes, apart from the headaches. Mentally not so good. DH had the day off yesterday which I hoped we could spend together but was mainly me in bed with a pillow over my head saying just kill me now. My head just feels bruised this morning luckily. Last night I had a nightmare where I went in for a scan and the doctor took out my uterus saying it "was useless but not to worry my husbands sperm was fine so we'd just find someone else to fertilise it". The dream went on and on, the next part I became obsessed that DH was going to leave me so I was following him around work. Then a blond woman went over and kissed him and he walked off with her. Before he went this morning he asked how I was and I answered "miscarriage is a slow torture". It takes ages to get pregnant (apart from the last time for us) every day feels like an eternity, hoping and praying the baby lives and then it's all so suddenly over and you have to wait forever for someone to see you and inevitably say something like "it's just bad luck, we can't find anything wrong, don't give up and keep trying". I am so angry that Guys told me they couldn't karyotype the last baby because it was not fetal tissue. I saw it, the sack was complete and my aunt who has over 30 years experience as a midwife saw it too! I asked her if she thought they just sent the one jar off that had a large clot in it rather than the one with the actual baby and she said "seems that way doesn't it". We only gave them the first one because we thought it could be placenta and may be of help, wouldn't have bothered if I thought they'd leave the actual baby behind. I'm sick of relying on people who are a constant let down.

Also, you know how I said I will NOT be trying again until we have some answers? Well my hormones are going mental and all I can think it "need to be pregnant, need to be pregnant". Please help me. I need the ladies on here to keep telling me to hold on and wait.

How are you doing batteryhen? Any sign of the blob monster yet?!

Your dreams although upsetting (and horrible)are normal. I think our dreams just show us what we are worried about from day to day. Just a release I suppose. I constantly dream about giving birth / being pregnant/being scanned. It's horrible to wake up to.

I know that now I am not pregnant - I am enjoying things that I CAN'T do when I am pg such as wine, smelly cheese, saunas etc. Make the most of this time - when you are pregnant you will be craving! You really do need to wait for tests you know. I had the constant 'must be pregnant thing' in my mind ALL the time - however for the sake of a month or 2 (hopefully) - you may get some answers and go on to a healthy baby :) I thought to myself - it would be awful to get pg and MC again - as I know I would have wished I had waited.

My news is - AF arrived this morning after a good session of accupuncure last night. I feel so relieved. I am seeing my consultant soon, so I will have lots of questions to ask. Any news from your GP?

No nothing. That's the thing really, if I had a date to aim for it would make the waiting easier to deal with. So lad you got AF. I was going to start acupuncture when I moved here but what with life being so chaotic never did. I'll have to find the address again. I was told it has great results for recurrent miscarriage sufferers. Have you been going long? Does it cost a lot?

You're right about the doing things you can't when pregnant. I've been pregnant so much and it limits what I can eat so I've been a real pig in the last week. Medium/rare beef...yes please, bring on the chocolate mousse and homemade mayonnaise! I saw someone who didn't know I'd lost the baby and when I explained I wasn't expecting anymore he looked confused...my buns in the oven are of the iced variety!

I am super crazy horny. When DH and I started trying three years ago now I didn't think it would mean the least amount of sex we'd every had! And it comes with so much pressure attached when you are ttc all the time. It will be strange to do the deed purely because we want to and not because he has to no matter how tired he may be because I'm ovulating. If I can get to Christmas having not bought opks and not gone mad from...everything, I'll be really impressed.

PS sauna sounds like a great idea. Must find one.

Never give up. we had 6 miscarriages before our first daughter, (found out hubby had chromosone translocation) and 9 altogether, we have 4 children now. all the best for the future

glad to hear you got af battery hen. how long was that after mc? i am coming up for 11 weeks this weekend but have booked in for accupuncture next week.

don't suppose you live in north west do you? that might be pushing our similarities too close lol!

amum - Keep on at your GP - you need some answers x I do recommend accupunture - it cost £40 a go, and I find it relaxes me, and helps me to be positive - as I am doing something that I am in control of. I also have reflexology too - which is gorgeous and I love it.- I found I was really horny too, and I know some people were worried about having sex again, but I wasn't - I just wanted to be close to DP :( so we went for it :) and didn't make too much of an issue about it or think about it too much.
pebs I had my erpc 13 weeks tomorrow. I was really worried as I know I ovulated at week 7 - and expected to have a period 2 weeks later. I had period pain but no blood which freaked me out and made me think I have ashermans. So I ovulated again on week 11, and now 2 weeks later here I am. I do think my accupuncture helped. At my erpc before this one my periods came back after 7 weeks but really light, this one seems a liitle bit heavier which I am releived about x

Oh - I am in the East Midlands :)

What's chromosone translocation coccyx? Is that something that would come from the karyotyping? DH and I have had that done (finally got those results and they were normal apparently), have had blood clotting tests, lupus and thyroid...all normal. What else is there to test? Do I get scans for my ovaries and uterus now? No one is telling me anything and I don't know what to expect. My Aunt has been a midwife for 30 years and went through infertility when I was little, she was given one course of IVF even though getting pregnant wasn't the issue, going full term was. She says that things have not moved on very much in all that time. There has to be more than 'keep trying'.

Our best friend came over today and said if they can't pinpoint a reason then shouldn't we keep trying? I don't know if I can do that. It feels like I'm condemning my babies to death. But I know there's tons of women out there who've lost more babies than me and gone on to have normal pregnancies. There's no reason I can't be one of those women is there?! I don't know what to do. Anyone out there? Am desperate to tie my husband down and demand he impregnate me but another part of me keeps saying don't put yourself through it again. Help.

Hi, I understand you conflicts - if we stop, it will certainly never happen, but if it's not going to work would be less painful to stop after 4 than 8, or whatever. I've found out I'm pg again, hoping this won't be mc #5. Regarding tests etc, I've had the NK cell tests and am on steroids for that, as to whether it works I'm not in a position to say!

Well congratulations and here's hoping (too small a word I know) that you've been given the right cocktail of drugs for this pregnancy. I know I'm not going to use cyclogest again because it didn't work the last two times and just prolonged the inevitable with this last baby. If I could just get the friggin letter for the consultant at least I may get a plan of action for next time.
Keep me posted Iggi999. Did you have to go to private to Liverpool for the NK testing?

I went to london, dr Shehata. My local RMC told me to take aspirin, they don't agree with the steroid stuff. I have spent close to a 1000 pounds (2 consultations, tests, and a private prescription, and train fares!) but for the first time I felt someone had some hope for me. Even if it comes to nothing, when I give up I'll feel I tried all I could. My last mc was in June, so things can turn round again in a few months. I agree taking progesterone can delay a mc, I think it's worth trying though but I'm going to demand weekly scans so there are no horrible surprises waiting for me . You've had some really poor treatment, I think you deserve a bit of action from a decent doctor now. What's funny when you see a rmc specialist like Shehata, is that he doesn't think 4 is all that many!

I guess it doesn't seem like many to someone who see's so many women who have suffered from rmc. It certainly feels like a lot to us though doesn't it! I've heard a few things about dr Shehata. One person said the follow up treatment after the NK test wasn't great. Has your experience been good?

I wrote a letter directly to the consultant I am supposed to be seeing but still haven't had a date for yet. My GP was great the first time I saw him but since then has told me he can't help me and to wait for the specialist...yeah ok but how long exactly?! Between pregnancy 3 and 4 I'd had no consultant appointment, no new tests, not even a midwife or GP appointment despite trying MANY times. It all moves way too slowly.

I was advised to do this - call the appointments secretary for the nhs person you're waiting to see and say you are willing to accept any cancellation at short notice (of course realistically you might not be able to!) I shaved a few months of my appt time this way, they called me up one morning and I was able to drop everything and go in that afternoon. I found the follow-up fine with Shehata, an appt to discuss my results and a plan for what to do in my next cycle. And of course, no long waits (which matters to me in my 40s) as you are private.

Did you say it was just over £1000 for the whole time you were with him? Or were there other costs? My DH and I both have very low wages and I'm trying to work out if we can realistically go private.

amum - I did what iggi said and called the consultants' secretary. I have seen MR S privately too - it is costly, but also I am being seen by My NHS consultant. I had my last MMC in June - and am seeing him next week. It is a long time but more due to the fact he has been away. Can you call your GP and ask twho he has referred you to and to make sure the referral has gone off? Either that or call the ward / EPAU where you last were and ask about follow up care xx

I went with every test done on the nhs (and all the results!) And so was just tested for nk cells and a repeat of one other. Consultation is about 250. Tests were 500. Follow up consultation is less, 150 I think. The prescription (for 4 months supply) cost 120. Of course, if he presribed different treatment it might be a lot more eg intrapallids. They can provide a breakdown of costs in advance, I think. I know it is a lot but I figured actually having a baby costs even more! I couldn't do it for ever, though.

That sounds doable. After all there's no point having our savings account for our baby when they're all dead. I have the name of the consultant I'm supposed to see and emailed her and wrote a letter because no one seems to answer phones in the nhs. I'll get cracking with going private. Thanks.

amum My gp did all these tests

Take this to your gp - and ask him to do them. By the time I saw MR S - I took a copy of all of these results so the only ones he had to do were the NK ones xx - It really kept my costs down.

Thanks. Finally got a consultant appointment...not with the person they told me it would be but hey, it's a date to work to. 11th October please hurry up!

Thats good news! When I was first referred I didn't see my consultant, but one of his team. Generally they are OK as they know how each other works. It is a step in the right direction, so I hope you can hold out until then! x

hi, just to say my friend had five miscarriages before going on to have a healthy DD. Each one was hell for her though....