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Miscarriage/pregnancy loss

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Recurrent MC--Testing and beyond--Part 5 continues here

999 replies

LAF77 · 02/05/2011 09:23

Here is the list of us on the thread and where we are in our journey through RMC. Nearly 4,000 posts in a year, so mark your place for the next thread.

Part one Part one

Part two Part two

Part three Part three

Part four Part four

STARTING TESTING
LOLA78: mc1 Dec 07 (6wks), DD Oct 08 (problem free pregnancy and natural birth), mmc2 Nov 10 6wks ERPC at 10wks, mc3 Feb 11 at 7wks - suspected ectopic but mc naturally, mc4 mar 11 at 5wks (started 75mg aspirin from a week before bfp) - hospitalised for excessive bleeding and clots. Now referred for testing at local fertility clinic, we have started having blood tests and am on 5mg folic acid.
SCOOTERCHASTER: DS Oct 08 (managed for SVT heart from 35wks), mc1 Sept 10 (7wks), mc2 Dec 10 (9 wks - hb @ 8wks), mc3 April 11 (7.5 wks, hb day b4 mc).
HAIRYLIGHTS, age 42, MC1 (Jun 10, very low HCG, suspected ectopic, methotrexate), MC 2 (Nov 22 2010, MMC,ERPC, no heart beat at ten weeks, fetus 8 week size), MC3 (MMC - Medical Management, Feb 13 2011, MMC at 7 week scan). Waiting to TTC
PANDA 3MMC, no.1 (embryonic loss - empty sac) 7weeks, no.2 at 12 weeks, no.3 at 8 weeks. Awaiting raft of tests for recurrent MC
CLAIREDELOON Age 38 1st mmc, development stopped approx 5 weeks (2007), 2nd mmc development stopped at approx 6 weeks (2009), 3rd mc development stopped at 9 weeks after seeing hb at 8+3 (2010). Bicornate uterus, starting testing Feb 2011.
NOTSOBARRENBROOK Age 35. 1st mmc @ 6 weeks (Jan 2009), 2nd mmc @ 6 weeks (Jan 2010), 3rd mmc @ 11 weeks, development stopped at 6 weeks 3 days (March 2010), 4th mmc @ 5 weeks (August 2010). Possible adenomyosis, awaiting hsg and results of testing from St Mary's.
MILKYWAY2007 Age 28 - DD age 3. 1st MC Oct 2009, 6 weeks. 2nd MMC March 2010, 11 weeks (baby passed away at 7 weeks). 3rd MC July 2010, 6 weeks. 4th MMC 24 Jan 2011, 9 weeks - no amniotic sac, baby measured 7weeks 4 days, no HB, had seen a healthy HB at 7 weeks. Blood clotting, hormone, genetic karyotype and shape and health of uterus checked and all clear. High dose folic acid prescribed.
LUCKYFOR2 Age 32 - DD age 5. DD age 3. 1st MC May 2010 found at 12 week scan passed away at 9 weeks. 2nd MC September 2010 natural at 8 weeks. 3nd MC January 2011 at 16 weeks, saw hb at 13 but no hb at 15.5. All tests have come back clear. Going to take Aspirin and Progesterone in next pregnancy (will be on Promise trial) currently ttc.
IGGI999 - Age 40, 3 year old DS. 3 MC last year, at 6, 8 and 8 weeks. Last two had hb detected. NHS blood tests came back clear, except for presence of antinuclear antibodies. To take aspirin for this. Going to see Shehata in May as think steroids are needed.
CONFU3ED - Age 35 1st MC 1998 14 weeks. DD age 11. 2nd MC July 2009 5.5 weeks. ERPC Twice. No tests. 6 months Clomid 3rd MC January 2010. The foetus sent for testing - came back fine. Been referred to recurrent MC clinic at the hospital for tests, waiting for appointment. Was told I have PCOS through a scan but never diagnosed.

UNDERGOING TREATMENT
HAVINGKITTENS Age 41 - MMC1 Nov 07 8wks (discovered due to bleeding at 10.5wks) ERPC, TOP1 for TS21 Aug 08, TOP2 for TS21 Feb 09, TOP incomplete, ERPC performed, Genetic Counselling & tests confirmed no chromosome problems with us, "just bad luck ", MMC2 Feb 10 5.5wks (seen at 8wk scan, no bleeding), MMC3 May 10 (as MMC2), RMC testing at UCH, no cause found - empirical 75mg asprin & vit D + early & regular scans for next pregnancy, MMC4 No fetal pole seen at 6.5 wks, follow up scan 10 days later, told of MMC, then "Something" spotted so instructed to wait another week before they would allow ERPC, ERPC a week later, waiting for NK Cell test results from Mr S on NHS, taking 75mg Asprin, Vit D, Pregnacare Plus (w/Omega 3), 5mg Folic Acid (been taking since 1st TOP to try & prevent TS21 or similar issues), NK Cells levels almost double what they should be. 25mg Prednisone from ovulation - CD1 or if BFP then 'til 12 wks and then weaned off 'til 14wks plus Progesterone pessaries from BFP - 16wks, Folic Acid, Omega3, Vit D - 12wks, Asprin - 20wks.
CRYSTAL5 Age 38 - DS age 4. 6 m/c 1 at 11 weeks, 5 at 5/6 weeks. Ok blood tests, under Endocrinologist for Hypothyroid
LADYBEE 37, MC1 (5wks), DS (2), MC2 blighted ovum discovered @ 8 wk scan, MC3 natural @ 9 wks following hb seen at 7 1/2 wk. PCOS previously diagnosed, Factor V Leiden heterozygote discovered in recent testing. Treatment with aspirin (from BFP) + clexane started at 6 weeks. MC4 MMC @ 8.1 wks (discovered @ 11 wk scan) following hb seen at 6+6 wks. Consultant suggests aspirin + clexane to start at 4 weeks, plus progesterone pessaries. Management of MC tbc.
DIGITALGIRL Age 32 - DS 2.8 - 4MCs since ttc#2. MC1 Nov2009 @5wks. MC2 Apr2010 @6-7wks. MC3 Oct2010 @7-8wks. MC4 Mar2011 @8wks. All natural, except MC4 managed with ERPC for karyotyping. Clotting tests normal. DH & I genetically normal. On Metformin for mild PCOS, plus 75mg aspirin, Pregnacare Plus & 25mcg VitD3. Diagnosed with high NK Cells (1.25) after MC4. Starting TTC in May with prednisolone from ovulation and will add cyclogest once pg. Under care of Mr S.
PUREEQUEEN Age 34, MC1 (7 weeks Jan 08) MC2 (6 weeks March 08), DS born (prem) 2009, MC3 (9 weeks Oct 10). MC4 Jan 2011. First 2 natural mcs latter 2 mmc/ERPCs. Chromosome test MC4 showed she had a genetic abnormality (cri du chat). Karotyping for me and DH fine but with "increase in length on satellite of short arm 13 and 15" (??) . Also have endo &septate uterus. Now TTC and will take aspirin and progesterone.
LAF77 , Age 33, MC1 (7 weeks Apr 10) MC2 (5 weeks Sept 10) MC3 (9 weeks Dec 10). All have been natural mcs and number 1 and 3 were embryonic . No children, First appointment with St. Mary's in April, second round of bloods in May, with results in June.

PREGNANT
MATTSMAMA Aged 41. 1st MMC November 2004. My DS (who I love with all my heart) born 2006. 2nd MMC July 2010. 2 chemical pregnancies September and October 2010. Under Dr Shehata and got BFP on first round of treatment for high thyroid antibodies and high killer cells.
BANANA87 Age 30- 1mmc@7 weeks, DD (2), 1 mmc 6 weeks, 1 mc 7 weeks, Going to try aspirin and progesterone as per consultant. Clotting bloods normal.
MUMMYABROAD Age 36, 1DS (2.9), 1MMC Mar 2010 (@14weeks) Ashermans diagnosis and treatment Nov 2010, Started TTC Jan 2011 BFP on Cycle 2 EDD 4/11/11. Heartbeat seen at 10 weeks.
GLITTERYBITS 1 anembryonic MC (12 weeks), unexplained infertility, 1 round of clomid, currently pg and terrified!
JUSTMEE Age 21, MC1 (7 weeks), MC2 (6weeks), MC3 (5weeks) currently pregnant with 4th pregnancy using clexane injecting 20mg a day
LOVELYBUNCHOFCOCONUTS Age 23, 1 MC (13 weeks), 1 MMC (10 weeks - growth stopped at 7), 1DD born 2008, PCOS diagnosis, bi-cornuate uterus. EDD 03/10/11
LOVEMYSLEEP Age 39, 1 mmc, dd born(now 5), 2nd mc (9wks, 2days), 3rd mc (9wks, 3days) and 4th mc at 5 wks. All tests on NHS came back clear. Currently undergoing treatment with Dr.Shehata for very high natural killer cells - aspirin, progesterone, steroids, omezaprole and one intralipid infusion completed.

GRADUATES WITH BABIES!!
LUNATIC dd1(4) 2 mmc (8 wks) dd2 stillborn (32+5). Seen at St Mary's. clotting problem, pg #5 aspirin 150g daily. Ds1 born 9/2/11 c/s @ 35 wks
STILLFRAZZLED Age 35, DS1 (3.6yo), 1 mc @ 5 weeks Jan 09, 2nd mc @ 9 weeks March 09, DS2 born @ 35+3 on 04/01/11 with Intra Uterine Growth Restriction but currently home and doing well.
MUMATRON Age 28 2 dc then 4mc, 3 @9weeks 1@5weeks, tests showed possible free protein s ishoo. dd2 born 06/01/2011, aspirin, claxane and high dose folic acid through pg.
JULEZBOO Age 29 1 mc @ 14 wks, DS1 (8yo) 4 mc @ 5/6 wks, DS2 (3) 2 mc @7 wks... DS3 (14/01/11 @35 wks) Dx with Factor V Leiden and Septate Uterus. Clexane and Aspirin throughout pregnancy and progesterone with DS3.

OP posts:
Havingkittens · 20/06/2011 16:34

Don't panic! My "Utter Nonsense" reply was aimed at your hospital not you Milky!

I hope Freelance has success with her proposed documentary. There are the odd newspaper articles that show up now and then, which have brought the whole NK Cell theory to the public eye but they are generally very vague. When I first started on the prednisolone I did a google search for something about it, can't remember what now, but it brought up a US based forum discussion which lead me to believe that this treatment has been standard practices in the US and Canada for over 10 years now!

What are you taking those other supplements for? Fertility? Or immunity?

aMuminwaiting · 20/06/2011 17:41

iloveblue my miscarriages have all been very different too and I'm sceptical about the chromosome testing but will try anything. As far as I'm aware there can be lots of different ways that incompatible chromosomes can affect pregnancy. Some like my Aunts and Uncles means they can get pregnant but she will never be able to go full term (I'm praying that isn't the case with me) and sometimes they can treat you by injecting some of the mans white blood cells. It all sounds complicated but I'm just taking hope that if a problems found it's one with a treatment. You are much stronger than I would be in your situation. Waiting 3 weeks for your next scan sounds horrendous. My consultant (before he retired and I was left with no one) said that he thought it was a blood clotting issue even though the results were negative (he doesn't have much faith in the hospital either it seems). I put so much trust into the progesterone and aspirin and it was my shortest pregnancy to date. The infuriating thing is (one of the infuriating things is) that the cause of one miscarriage may not be the same as the next. So one treatment might not work on one pregnancy but would have worked on a differnt one. It seems so much like pot luck and not a huge amount of science.

I'm from Kent Suffolksteph. I'm hoping that when I move I get a much better surgery and better care at Pembury. I'd say it can't get worse but I don't feel like tempting fate!

Havingkittens · 20/06/2011 17:48

Milky, just be sure to check that the Selenium you are taking isn't one with high levels of Vitamin A in it as this is not good to take during pregnancy.

milkyways · 20/06/2011 17:57

Phew!
On Dr Shehata's old website miscarriageclinic.co.uk, he had a section where he talked about what other things could be a cause for recurrent miscarriage and treatments you could have. He'd written that in studies, Scientists have found that levels of Magnesium and Selenium were low in infertile women or women who suffered from miscarriages. He didn't go into detail but I did my own research and found that after normalising the levels, 100% of the women in the trial (6 in total) had successful pregnancies. some of the papers regarding selenium and magnesium
With CoenzymeQ, he had written that levels were lower in women who had suffered a miscarriage. If that is the case, then I left a month every time to conceive again, so essentially I might have been unknowingly depleting my stores everytime I conceived and miscarried.
this is a very good site I have just found about susceptibility to miscarriages

milkyways · 20/06/2011 19:19

Thanks kittens. I was taking the selenium-ACE, but changed to 200ug selenium by itself. I did have a bit of a scare when I realised I was taking vitamin A by accident a few weeks back, but even with the selenium-ACE, it was only 300ug of vitamin A in retinol form, and considering the upper limit is 3000ug, and that vitamin A intake should be around 770ug for pregnant women I was quite safe.

iloveblue · 20/06/2011 19:42

That is a good website milky - thanks for sharing it.
Its funny as in the 'who's most at risk' section - only the top bullet-point applies to me, and maybe the caffeine one due to the odd cup of coffee.

justmee · 20/06/2011 20:16

Hey ladies

Just thought id pop on and see how you are all doing sorry havnt been on to much...

Hope your all doing well and have had some good news since i last spoke to you all

xxxxx

digitalgirl · 20/06/2011 22:46

iloveblue so sorry to hear your news from the scan. Sad I hope it happens swiftly and you can start to move on.

Am also feeling a bit down. I've had three bfn's in a row so pretty much obvious I'm not pregnant. I've had positives at 10dpo before and today was 12dpo. Don't feel remotely pg either, so just the long wait for af which is due on my birthday on Friday. Great. Another birthday where I am neither pregnant nor cradling my much longed for baby.

I am so pissed off with my body for taking so long to ovulate I reckon the egg was probably duff. I've booked a follow up appt with Mr S but won't see him till the 13th July. Will ask about Clomid but will probably be too late to take it next cycle. In the meantime will see if extra acupuncture will help. I feel so frustrated and pent up. I stopped the steroids today - perhaps it's withdrawal. I'd forgotten how awful I feel at the end of every failed cycle. It's actually not been since last August that I had a period when I'd tried really hard to get pg.

aMuminwaiting · 21/06/2011 08:33

I had the same digital girl. The month I got pregnant with my last baby was a 40 day cycle. And the one before that when I spent a fortune on pregnancy tests was a 50 day cycle! Before I started trying for a baby I had 28 day cycles and now they're all over the place. The months I'm not pregnant are the ones I get more 'symptoms' too. Felt like I was going mad. I actually didn't ovulate for the first 4 months. It's taken six months after each miscarriage to get pregnant again. Wish I was one of those people who get pregnant by standing too close to their husband! Actually if I'm going to wish for something it would be that we could all just get our babies and not have to worry about all this stuff that a lot women take for granted.
I'm 4.5 weeks post miscarriage now and wondering when my AF will show. I've had flecks of blood in mucus for over a week and last night a strong cramp so I thought it would start today but nothing so far.

I've heard acupuncture has a good success rate with recurrent miscarriage sufferers. I contacted a woman about it in Tenterden and will give it a try when I move nearer there. I keep using dates like birthdays and Christmas as a 'how pregnant would I have been then or how old would me baby be then' (depending on which pregnancy I'm thinking about). The pain can be overwhelming sometimes can't it? I have a friend who told me miserably when I was first pregnant that she wished she was with someone and having a family. She said it was never going to happen for her. Then a few months into seeing someone she got pregnant with twins and is now engaged with two beautiful baby girls. My DH and I have been together for 8 and half years and have three dead babies instead of our much longed for family. I suppose the positive to take from it is that things can turn around even when you think there's no hope but for us it will never give us the babies we've lost back.

georgiepie · 21/06/2011 09:34

Morning grls.

Muminwaiting im sorry things are so difficult for you right now. Its so difficult seeing your friends with there babies. I feel the same as you. Acupuncture is good, i personally found it helpful trying to get pregnant but not when i was pregnant.

After 4 mc's, at age 42 seeing Mr S is my last hope and last chance. I am preparing myself to move on if nothing happens before xmas.

milky thanks for all the info on your post. Really interesting to read. Do you mind me asking what does of folic acid and the reasons behind it?

Its 5 weeks since my ERPC and i have a regular cycle of 28 days. Do you think AF will show up soon? Should my homones be back to normal by now I wonder.

xx

Havingkittens · 21/06/2011 10:19

Hi Georgie, my periods usually take 6 weeks to come back after an ERPC, although the last one took 8 I think.

God, what a ridiculous thing to be in a position to say, "usually...after an ERPC". I've had 7 experiences to compare so far! FFS!

Justmee how are you doing? Last time we heard from you, you were having a Nuchal scan weren't you?

milkyways · 21/06/2011 12:48

iloveblue I've just looked at the site again, and only the top bullet applies to me too, I'm guilty of a cup of coffee now and again, but realistically I know I don't have a high enough caffeine intake to cause miscarriage.

georgie My period came back about 5-6 weeks after the ERPC. I don't know why, with all my other miscarriages my period returned right on the 30 day mark, but the ERPC messed up my cycle a bit.
The folic acid, aswell as reducing the risk of spina bifida, has also shown to improve blood circulation around the uterus so that it remains oxygen rich in there. Women with MTHFR gene usually have high levels of homocysteine which can be a cause for recurrent miscarriages. Folic acid deficiency can also lead to increased levels of homocysteine, which is why they are prescribed it in high dose. Lack of vitamin B12 can also lead to increased levels of homocysteine in the blood.

luckyfor2 · 21/06/2011 17:25

Hi everyone, I seem to have missed quite a lot over the past week. I did start writing a long post the other day and my computer crashed but my little girl has been sick so haven't had much time to post again, but I have been reading. I hope I've covered everyone/thing cause its really hard to catch up when you haven't been keeping up.

igggi so nice to hear from you and I totally understand you taking a break. I really hope you're looking after yourself and its good that you've got a holiday booked. Give yourself lots of pampering, think about you lots x

Welcome Georgipie you're in the right place though its a rubbish place for us all to have to be in at least we can be here for each other and it does help. Glad your appointment with Mr S went well, hopefully you will get some answers soon. I got my af 3 weeks after my erpc but it took 7 weeks for my af to return after mm at 16 weeks. Its painful waiting for af to come because you just want your body to return to normal but they generally say anything up to 8 weeks is normal.

milky honey I can totally understand how you have been feeling. After miscarriages (especially recurrent miscarriages) it became an obsession for me to have a baby and the desperation drived me to want to get pregnant. I know at the beginning of this pregnancy especially when I was feeling more sick and tired I kept asking myself if I was doing the right thing putting me and my family through it again. For people who have been through this its so hard to connect with the baby and believe that it will ever happen and unfortunately this hides the love and ruins the enjoyment of pregnancy. I think the counselling will be a really good thing for you and hopefully as your pregnancy develops and you get further on you will start feeling for the baby. I know it is hard to imagine any of this and I struggle with it so much myself. Take one day at a time and I'm sure your feelings will change and you will start to feel happier with yourself. You've also got the horrible hormones going through your body which sends us all crazy at times. I think of you every Monday on your scan day and I pray that everything is good news.

Ilove so sorry to hear your news about your scan, its such a kick in the mouth when it happens again and again and I know exactly how you are feeling right now. With regard to nkscells, I went to see Professor Quenby in Birmingham after my third mc, she did a small study last year (the results have just come out actually) and she has done lots of research on rmc and recently nkcells on the NHS. She looked at my post mortem results and could tell me by looking at the placenta results that nkcells did not apply to me. If you had a post mortem from your late loss then it should show on there. I think when suffering from recurrent mc we just need an answer and unfortunately there isn't always an answer (or not that they know of). Try and stay strong over the next few weeks, I hope your family are supportive and you can get lots of help.

With regard to testing, I had all my tests done the day I delivered (mc) my third baby when I was in hospital but they then retested me when I went in for my first consultation. From what I know the only thing that shows differently when pregnant is the blood clotting so it has to be done when pregnant and not pregnant ? but definitely not pregnant. The karyotyping takes 3 months so its good to get them done as soon as possible and it obviously doesn't matter whether you're pregnant or not.

justme nice to hear from you, hope you are well?

Digi so sorry about the bfn, it must be so frustrating for you having to wait such a long time to ovulate. I was really hoping that it would be good news for you this cycle. I know that acupuncture is supposed to be very good for regulating periods, if you don't already have it (which I think you do?) then it would be a very good idea.

kittens how have the steroids been this month, hope you haven't suffered as much as last month.

suffolk it sounds like you had a terrible experience in your local hospital. It is disgusting that some consultants/staff don't know how to behave and even know the general procedure especially when you're going through the hell that is mc. Glad that St Marys are dealing with it properly now and you feel more looked after. I personally have never taken my children to the clinic and actually have had to make special childcare arrangements for my youngest for my weekly scans. I would be scared to take them and it be bad news (again) but I guess not everyone can get childcare easily. As I have two children it doesn't bother me so much seeing children at the clinic but I always sit and look around and wonder whether anyone is upset that children are there, I think for people that are recently suffering a loss without children must find it really hard. Tricky one but understand what you mean.

LAF have you had your results yet?

muminwaiting I've been having weekly acupuncture since about a month after my third mc in January ? it has been quite an expense being £40 a session. It is supposed to be very good at regulating your cycle but I have also found that it has been really good with morning sickness and and all the other symptoms of pregnancy. The other thing that it has really helped with is my anxiety. I have had a terrible time with panic attacks and confidence since my miscarriages and its been a great support and I don't know how but it has definitely helped in some way.

My scan last week was fine and my consultant actually gave me a bit of a talking to about accepting the baby and how I needed to try and get more positive (I thought I was doing a pretty good job actually) but I completely broke down when she said that I needed to come to terms with the pregnancy and accept that I WAS going to have a baby. Its so difficult because its exactly around the time that we lost our last baby and my consultant at the time said the exact same thing! So its very hard to get comfort from this. I don't think I will be able to accept things until I find the confidence to tell people and show my (very big and hidden) bump. I've had quite a sad day today wondering whether my life will ever feel normal again. I've lost contact with so many friends and to be honest the friends that I have trusted and tried to confide in haven't given me much time and have generally got on with their own lives. I know I'm not the most important person in everyones life but I would have given so much more care to my so called friends (one in particular). I guess its really my fault for hiding for so long. I think people have forgotten I exist! Maybe when/if I get to 20 weeks I will be able to start doing the school run and generally seeing people more but its a very big step to take and I'm terrified I'll have a panic attack in the school grounds!

Sorry about the v.big post and the rabble about myself at the end, feeling abit sorry for me today.

LAF77 · 21/06/2011 17:25

OK, sorry for the selfish post, but here goes. I went to St. Mary's today. Nothing conclusive was found. TEG level was normal, antiphospholipids were normal, factor V leiden was normal. However, Facto VIIIC was slightly below normal. My reading was 58.6, but normal ranges from 60-140. They repeated the blood test today for this specific clotting issue. From my first search, it would seem that the treatment would be similar for factor V with heparin if deemed necessary. I need to find some sites that show what other hospitals and countries see as their normal range to see how it compares.

It's all still sinking in, no definitive answer as to why these MCs happened to me. I asked about the "non-fussy uterus" and natural killer cells. They would only look at me in this pool of people of faulty decidualisation (non-fussy uterus) if I have 5 mcs in a row. Natural killer cell testing is something that they are waiting for the results of Prof Quenby's trials at Liverpool.

I wasn't overly happy with the consultant, not one of the names that people have mentioned previously. I had a feeling that there wouldn't be any answers when I saw the PROMISE paperwork pack and he started off by saying that 50% of RMC women don't have a diagnosis for what went wrong.

So no treatment prescribed for me. Back on the TTC merry go round and see what happens this time. I'm frustrated because I've been waiting 6 months for this day and I was hoping for an answer. I was mentally preparing myself for no answer, but it doesn't make it any easier.

Like many of the sentiments expressed by others here, I feel like you have to really manage your own treatment for RMC, even when you are in the hands of experts. I've mentally planned that if I have a fourth mc, I will get tested for NK cells privately. St Mary's will check me again for TEG when I get pg, but I like to plan for what is going to happen. RMC has taken this away from me. I just have to see what will come next. I'm scared of trying again, scared of the prospect of a 4th mc.

We walked down Kings Road and saw so many prams, pretty pregnancy shops, it made me want to be sick, people blissfully going through pg....I bought 2 nice dresses from Ghost on a big discount so it wasn't all bad for me...

OP posts:
luckyfor2 · 21/06/2011 17:26

so sorry milky forgot to say how fab about the scan.x

luckyfor2 · 21/06/2011 17:42

Hi LAF I thought you were about ready for your results. I'm so sorry that they haven't found anything to FIX but in a way it is good that they haven't found anything because it means that it could be bad luck and next time it will be good luck. I do know how you feel because I have had the same news myself and it just seems impossible that there are no answers.

Its so hard seeing pregnant ladies looking happy and new mothers walking around with their babies in their beautiful prams looking at clothes and their lives looking so perfect. I really do hope that it will happen to you soon and you will get everything you want.

I spoke to the midwife who works with Prof Quenby today who put me on the PROMISE trial (just a ring in to see how things are going) and she told me that they do have the results of the NKcell trial. The results were 40/60 - 60 being the positive outcome. They are quite positive about the results but were obviously hoping for a much higher positive result. I understood everything at the time but now I'm wondering about all the details...apparently the trial was very small (less than 100) and they are now looking at doing a much bigger trial, but it will probably be next year as it takes such a long time to get large trials moving.

She also said that the ladies on her PROMISE trial were doing very well and that only 2 (though 2 suffering women is enough!) out of 15 had had a bad outcome so far. Maybe you could try the progesterone next time? Did they offer this?

LAF77 · 21/06/2011 19:41

Thanks for the info about the results from promise and NK trials lucky I've signed up to be on the promise trial, so we will go from there.

I'm sorry you are struggling with things at the moment. I still haven't seen or spoke to a lot of people since the third mc. People don't know what to say to me and don't reach out and I feel like I'm not part of their lives anymore.

I wish I could wave a magic wand and make it better for all of us.

OP posts:
justmee · 21/06/2011 20:54

hi girls

yes i was having a nuchal scna which showed thicker than it should be i was 3.4mm so they offered me a amnio but i refused with my mc i know its only 1-100 or something but i would be that 1 they also wanted me to stop taking clexane because the risk of bleeding in the amnio which already scared me that id mc iv tried so hard to get pregnant fiannly do worry so bad about mc agan and then hit wth tht totally knocked me down i was terrible for weeks but we decided to have a scan at 17 weeks then again at 22 and eveything was looking good so were just carrying on and trying to keep our heads up and im trying to enjoy pregnancy even in this heat which is actually killing me lol!

how have you all been getting on xxxx

digitalgirl · 21/06/2011 21:09

laf big ((((hugs)))) for you. I know how frustrating it is for all the tests to come back normal no matter how much you try to prepare for that. In some ways it gave me the confidence to try again knowing I'd ruled everything out. I made the same pact with myself about having nk cells tested privately if I was to have a fourth mc. In some ways I'm glad I waited till after my fourth - because if I'd tested sooner then started steroids and still miscarried because of the chromosomal abnormality it might have been much harder to take.
You will do what you feel is best for you. But if you feel particularly let down by St Mary's then I do know Mr S has a much more pro-active approach and you may just feel like he's at least prescribing you something.

lucky I feel so sad reading your post. I remember all too well the overwhelming sadness I felt in my last short-lived pregnancy. I can't imagine how it must be getting closer to your second trimester milestone. I hope it lifts and you are able to start embracing the future again.

milky I'm sorry I've not been replying to your posts - but I have been reading them and quietly nodding along with your decision to have counselling. Glad scans have been going well so far with you too.

I've been collecting all my paperwork to take to St Mary's on Tuesday. I'm partly thinking it's a complete waste of time. But they did say they'd scan me so I'm hoping to get another good look at my ovaries and see what's going on. I'll be on af but hopefully that won't stop them. I'm also wondering what their reaction will be to my treatment under Mr S. An arched eyebrow of disapproval I imagine.

iloveblue · 21/06/2011 21:52

Thanks for that info lucky.
I know my consultant said the placenta was normal after my late loss so it probably wasn't NK cells. I've heard they don't cause late losses,
Glad your scan went well - I can completly relate to your feelings towards your pregnancy, it must be hard.
I'm seriously considering whether I can potentially go through this again.
Can I ask what medication you are on (if any) at the moment?

LAF so sorry you didn't get a more definite diagnosis. It must be extremely frustrating.

digi sorry about the BFN's. Its understandable you are feeling down. I'm hoping will all my mite that it will be your turn soon.

justmee I'm so glad all is progressing well for you

Hope everyone else is okay,

luckyfor2 · 21/06/2011 22:17

Thank for understanding guys.

justme really glad to hear all is good.

Ilove I am taking aspirin (though nothing came up for blood clotting) as this seems to be standard after a second trimester loss and I am also on the PROMISE trial so took pesseries for first 12 weeks. I don't know whether it was progesterone or a placebo and wont find out either way for about 2 years until the trial is over. I also take pregnacare plus (with the omega 3).

I can understand you wondering what to do now because I felt exactly the same and I think we all do after a loss but I knew after my third that it would be harder not to try again. If I lose this one I really don't know if I would be able to do it again. But its hard to know until the time comes.

Digi I know you're thinking St Marys is a waste of time but all the care and help you can get I think the better. I can't imagine they will be pleased that you're seeing Mr S but that is just tough, they will have to live with it and help you any way they can. get whatever care you can from them and like you say when you do become pregnant with Mr S's help you can have all the scans etc from St Marys as well, its got to be worth it.

KnitterNotTwitter · 22/06/2011 14:46

Quick random question from me... i've been waiting for AF to turn up so i can go and have my cd3 tests... AF turned up today (well I'm spotting at least) so I'm thinking friday is going to be my CD3...

BUT I was planning to be in Somerset then. Anyone have any idea whether I could rock up at Bristol Royal Infirmary or somewhere with my blood test paperwork and get them to do the tests? Or am I living in a dream world where the NHS is joined-up enough to handle that sort of thing...

I could delay going away but would rather not....

Havingkittens · 22/06/2011 17:48

knitter I'm afraid I don't know the answer to your question but as far as I am aware the first day of spotting doesn't count as CD1, it's the first day of proper red bleeding. I reckon the best thing would be to phone up your hospital or GP and ask about whether you can get your bloods taken somewhere else.

I may be wrong but I seem to remember there was a couple of days leeway too with the test, as I remember being concerned about having a job booked on the day.

aMuminwaiting · 22/06/2011 20:35

Sorry to be such a miserable cow but I'm really finding it rough at the moment. Just feel like I can't keep upbeat for everyone anymore I just want to cry and cry. Went for the bloods for karyotyping at last and was sandwiched between a couple with a baby and a couple expecting a baby. I just wanted to scream my head off. The TV has had blood one born every minute USA all frigging evening and why is it that EVERY grand design has a pregnant woman on it?! Maybe we should all just build houses and that's the answer to bloody motherhood!!! Arrrrgggggggghhhhhhhhhhhhhhhhhhhhhhhh!
Sorry, I know everyone is finding life hard. I've had cramps for three days now so maybe my period is coming and I'm losing it because of a hormone overload.

digitalgirl · 22/06/2011 21:25

I'm so sorry you're having a rough time amuminwaiting it does seem that pregnant people are everywhere when we're at our lowest. Without dismissing the way you feel, I think hormones when due on really don't help with this feeling either. I've felt pretty low for the past couple of days and I'm due on this week. By the time CD1 rolls around I've usually snapped out of it though. Hope it's the same for you.

knitter I think some docs call it the day 2-5 test in order to cover the fact that sometimes CD1 is on a weekend or a bank holiday. I've had it done on CD2 before, so if that's easier than days 3-5 perhaps try that. I'm not sure whether you could turn up at any hospital for the test.

lucky you are right, I am hoping that once I'm pregnant again I can get scanned at St Mary's. I really don't want to go back to the same scan rooms at my local EPU. I can't fault the care at my local, but I have no good memories there. None at all.