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Miscarriage/pregnancy loss

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:
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igggi · 02/05/2011 10:27

Hi everyone. Good wishes to everyone today Smile

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igggi · 02/05/2011 10:27

Hi everyone. Good wishes to everyone today Smile

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digitalgirl · 02/05/2011 16:43

Bookmarking.

Well done for sorting LAF you do know there's an MN legend that threadstarters are blessed with extra special TTC luck?

kittens any poas action from you yet?

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Havingkittens · 02/05/2011 17:38

Hello! No, not yet. Well, erm, I did, but shouldn't have Blush. Too early yet. Been feeling quite ropey, got really bad shakes today and can't work out whether it's the Prednisolone or pg. Every other time I've got a BFP I've had a couple of really shakey days so who knows but I don't feel any other symptoms. I'm only on CD25 so far - 3 tablets left in the pack so I'll do another test on Wed morning I think as I have an appointment with my GP in the afternoon. He has been away and the other GPs have been drip feeding me my prescriptions which has been really annoying. It'll cost me a fortune this way so I'm hoping my GP will just do me the script for the whole amount. So far they've given me 15 Cyclagest which considering you're supposed to have one a day for 16 weeks is going to skint me if I have to pay full prescription price for every 15!

I hope the new thread brings lots of luck and babies! xxx

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luckyfor2 · 02/05/2011 20:02

Well done on the new thread LAF. Let's hope this is a good one for all of us. x

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ALovelyBunchOfCoconuts · 02/05/2011 21:28

Hi everyone, marking my place :)

kittens can you get one of those payment plans for your prescriptions? I think if you need more than a certain amount you can pay a set amount that will save you alot of money compared to the £7odd every time. Ask at your GP surgery if you think you may benefit. Will be posting that book weds/thurs I think :)

LAF thanks for the new thread, hope it brings luck to many more this year :)

Any potential newbies reading this, if you need any advice on RMC, this is the place to be. Best thread on MN Grin

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Havingkittens · 02/05/2011 21:47

Coconuts I think I will be fine as long as I can get my GP to sort out my prescriptions. I took the prescription request from Dr S in to the surgery as a prescription request and I suspect that because the other GPs don't know me they are being conservative with my prescriptions. Thanks for the suggestion though. Worth knowing about if they are still awkward. My GP is very sweet and helpful so hopefully all will be sorted once I see him. Thanks for sending the book too. Whenever you get a chance, don't put yourself out! x

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pureequeen · 03/05/2011 09:45

Hi everyone on the new thread. Comiserations to everyone starting back at work after a long weekend (or longer!).

Some sad news for me - miscarried last week, sitting alone in a pokey hotel room on a work trip. Very early (earliest yet - I think just 5 weeks and as my sister would say "why are you upset, it wasn't a real baby").

It is just all those horrible "what if" thoughts - is it my endometriosis? Was it another chromosome problem? Was it because I hefted my overnight bag down 7 flights of stairs at Bank station because the escalators were out?

I was doing everything to the book (eg progersterone, asprin, zero alcohol etc etc etc). What now? My next appt at the RMC clinic is in June. Do I wait a cycle before TTC again? Anyone have any views on that? I don't buy the dating thing, I know exactly when I ovulate etc so no need to wait a month just to date things.

Anyway, back to work now.

Hope everyone else having a better time and good luck to the TTC and pregnant ladies, wishing you all the best.

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Havingkittens · 03/05/2011 10:45

Pureequeen, I'm so sorry. You poor thing. Have you had all the test results back from the RMC or were you about to embark on testing and became pregnant in the meantime? I know it's compelling to want to get pregnant straight away but maybe it's worth holding out to make sure there is nothing more you can do to improve your chances?

I got pregnant for the 4th time whilst waiting for my first RMC appt and it didn't work out, the 5th time I was trying asprin & Vit D, I've waiting 6 months to start TTC again so that I could try and reduce my risks further and have, in that time found out that I had raised NK Cells so I feel there is possibly more hope for the next try. Do you think it may be worth waiting a little, just to see if there's anything else to try?

I'm sorry you were away and alone. Was there anyone you could confide in there? I hope you've had company and TLC over the bank holiday weekend. Take care of yourself. x

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pureequeen · 03/05/2011 11:23

Thanks kittens. The only thing I haven't had yet is a 3D uterus scan and day 1 progesterone blood test - everything else (incl karotyping) is OK, or at least not significant.

Think I might book in for a private appt with Mr S as that is the absolute last thing left for me to check out.

It was so awful when it happened - was at night, by myself (not travelling with a colleague) and then had to run a 6 hour meeting the next day with people whom I didn't know at all, standing at the whiteboard hoping that my overnight pad would hold out. Totally surreal and I am now thinking of packing in this working lark.

Have had some pretty serious chats with my husband about what is the point of me working my arse off if I am miserable.

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luckyfor2 · 03/05/2011 15:43

pureequeen what terrible news Sad, I'm so sorry you've had to go through this again, life is just not fair and to have to go through all of that on your own with nobody to talk to or be there must have been just horrible. I've just noticed on your stats that you have a septate uterus, could this have been the reason for such an early mc? Not that it makes it feel easier but just trying to work out why this could have happenned again. Thinking of you. So so sorry. xxx

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digitalgirl · 03/05/2011 15:50

pureequeen I'm so so sorry too Sad. It's particularly sad when you're on your own, no matter how early or 'used to it' you are. You did very well to continue working under the circumstances, I hope you are resting now. Even if you feel physically fine, you should take a break from work and give yourself some room to grieve (or at least not have to worry about work). I totally sympathise about feeling like you did everything right (I took aspirin, pregnacare and no caffeine/alcohol). But you definitely didn't cause it by carrying anything heavy. Please don't think that.
I would also suggest booking an appt with Mr S. He'll test you for whatever's left including NK Cells, Anti-nuclear antibodies and Thyroid antibodies. Have you had a full thrombophilia screening done, or just been tested for Anti-Phospholipid Antibodies? Has anyone ever suggested surgery for your endo or septate uterus (I don't know much about it, but wondered if it was an option)?

Also, I know it's very easy to want to keep TTC straight after a mc, which is fine if you've only had one or two. But with a history of rmc I think it's always best to wait at least one cycle to allow your body to rest. There's a small risk of miscarrying again whether it's because your nk cells are still high or whether its because your hormones will be out of balance I'm not sure. If there's anything we try to do when ttc after mc its to minimise the risks, no matter how small.

I've picked up my drugs. kittens I'm paying private and 4 cycles of prednisolone plus 2 weeks of cyclogest (had to order the rest in) has set me back a whopping £100 Shock. Mind you, I dread to think how much I've paid out for pg tests, opks, acupuncture, pregnacare and private consultations...

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LAF77 · 03/05/2011 19:04

Oh pureequeen my heart goes out to you. How sad to have a miscarriage in such a way. That is my worst fear about MC, just how you described, alone and away from home. It nearly happened to me on my third MC in Dec, but the full effects didn't start for another couple of days.

Of course, it was a real baby to you, all of your hopes and dreams about your family's next stage of development when you got the positive test. People just don't know what to say because RMC is not very common, so they try and brush it away, because it isn't their body and their hopes, and there are no answers as to why it happens multiple times to some of us. I can't believe that there aren't any reasons for 5 MCs, it is just that medicine doesn't know what they are yet.

I don't know what to say about what to do next, other than take some time out if you can. I didn't and it drove me to despair in the following weeks. I'm sure that the MC has nothing to do with carrying a heavy bag up the stairs. I stopped all exercise at the gym (and sex), took all of the vitamins, cut back on caffeine, and alcohol and it still happened to me three times. Where were you being treated at? Which clinic was looking into your history?

I'm terrified about trying again and getting the next positive test. I don't know if I could cope with the fear of MC again. Somehow we do, but it does change you as a person.

Lots of love, and if you feel like ranting and raving, I'm here to listen.

OP posts:
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ALovelyBunchOfCoconuts · 03/05/2011 20:55

purequeen so sorry to hear of your loss and under such lonely circumstances Sad You are so brave to have carried on working through the pain, emotionally as well as physically. Lots of love from me, take time to feel better, don't rush things x

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Havingkittens · 03/05/2011 21:42

Gosh Digital, I guess I should count myself lucky I'm on NHS! Talking of which, I am a chump! I went to see my friend today who has a young baby - first visit, which I've been plucking up the courage to do for the last 10 weeks, but that's another story. Anyway, she reminded me that once pregnant you get free prescriptions on the NHS so I cancelled my Dr's appointment and decided to wait until either I know I need my 3rd cycle of Prednisolone or I am pregnant. I can't believe I hadn't even thought of that. D'oh!

Pureequeen I think getting to see Dr S would be a really good idea if you can get your GP to refer you or afford him privately. When I was at the first NHS RMC, the hematologist refreshingly said "No, it's not bad luck. Having 1 or 2 miscarriages is bad luck. There has to be a reason for 4 Miscarriages, we just don't know what it is." Now having had a result back from Dr S confirming raised NK Cells it gives me something to work with. Some sort of hope at least, even if it doesn't end up working out for me in the end. I hope you're doing ok this evening. x

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igggi · 03/05/2011 21:53

Purequeen so sorry. And sorry you had to go through the first part of this alone, hope we can help with the rest of it. So sad to hear this.

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igggi · 03/05/2011 21:55

Regarding prescriptions, move to Scotland where they are free! Though come to think of it free anywhere if you have underactive thyroid, which some of you have.
I'm going to be so peeved at having to pay for my Dr S prescription (assuming he gives one to me and doesn't tell me to feck off with my useless eggs) when I pay nothing for NHS ones!

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confu3ed · 03/05/2011 22:36

So sorry Purequeen, and i hope you are looking after yourself. I know how you feel as I had to go away through the miscarriage I had a couple of years ago and found talking to customers whilst in agony almost impossible. Holding down a stressful job whilst going through miscarriages is so hard. I don't think it matters how far along you were, it was a pregnancy and to loose it, no matter how early on hurts psychologically. Your sister sounds as sensitive as mine, but I guess unless you go through mc you just don't understand and cannot empathise.

Pretty much all test results have come back as normal, only one left to come in. The nurse I spoke to told me that I am just unlucky and the chances are that next time we will be fine. Not convinced though, but I don't think I will be until I actually give birth! Not sure what to do now regarding ttc again

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Lola78 · 04/05/2011 10:16

So so sorry purequeen for your loss. I hope you are able to take some time out from work to get through the grief. We are all here for you xxx

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luckyfor2 · 04/05/2011 12:41

Still thining of you pureequeen. Sending lots of love. x

Confu3ed its good news all your tests came back clear but know how you feel as its hard when theres nothing to fix. Have they suggested you take aspirin or progesterone?

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milkyway07 · 04/05/2011 14:20

Sorry for your loss pureequeen. What a horrible experience, and I hope you are now surrounded with your loved ones. I started bleeding at work with three of my miscarriages - by the third one I was too embarrassed to tell anyone and go home, as I felt like a complete idiot and thought people would think I was stupid for trying again. It's crap that all of us have this horrible thing in common :(

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confu3ed · 04/05/2011 21:49

Luckyfor2 - The clinic that did the tests is an EPU not a RMC so I am a bit confused about the whole thing as I spoke to a nurse to get the results who told me that the consultant will write to me to confirm that everything is OK and may or may not refer me for a hysteroscopy but she seemed to think that was unlijkely. I feel frustrated with the whole thing as I thought I had been referred to a RMC not an EPU who really do not do much in the way of testing. I think that as I have only had 2 RMC and 3 in total that they do not think that there is an issue and keep using the word unlucky. I feel like screaming YOU THINK?!!! Worst thing today was I went back to see my GP who dealt with me through this miscarriage as I am having issues sleeping, she is bloody pregnant and asked me if anything had been stressing me out over the past few months, I mean is she for real?! Apologies for the rant but sometimes I wonder if they teach bedside manners at med school!

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Havingkittens · 04/05/2011 23:30

Confu3ed, it's good that your test results came back clear but I know the paradoxical feeling of disappointment when you feel there is no solution to be offered. It really does stink that they make us wait for 3 in a row before doing anything more involved with testing.

I'm feeling rather fed up. Pretty sure I have period pain. I did an internet cheapie test again this morning and it was negative too. I phoned up Dr S's midwife again today too as I've not been getting on well with the side effects of the Prednisolone. It seems most people don't have too much problem with them, so I don't want to frighten anyone, but I've been feeling pretty horrible on them personally. She told me that I should take the First Response test 10dpo and that if it came up negative I could stop the tablets if they were making me feel bad. First Response are supposed to work 6dpo but she said if I wait 'til day 10 to be on the safe side then I'll be pretty certain I'm not pregnant. I have one more pill to take tomorrow but may do a test to see if I can skip it, although it feels like there's a pretty good chance I may come one before I take the test. Knowing my luck though I will do the £8 test and then start bleeding just as I pull my knickers up! It sounds like a good plan for the next cycle at least (hopefully there won't be too many before I get a BFN), but at the moment I'd spend the £8 on a test even just to skip the last tablet.

The weird thing is that I was on Prednisolone for about 4-6 weeks about 7 years ago as I had Bells Palsy (That was fun, I can tell you! Just the thing to have a month into dating my new boyfriend - with whom I am celebrating my 7yr anniversary this week!) and I had no ill effects at all. Wish that were still the case. My granny has taken them on various occasions too and said they made her feel great!

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Havingkittens · 05/05/2011 08:26

Well, I didn't need to take my test, or my last pill. Fingers crossed for next month then...

I guess at 41 it's a bit much to expect to get lucky first time, even though it's often been pretty quick for me. Spending the day with one of my oldest friends' 10 week old baby hasn't really helped with the disappointment factor though Sad

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luckyfor2 · 05/05/2011 09:05

Oh god confu3ed I can't believe that, how horrible I bet you were completely gob smacked! There are so many issues with rmc, obviously the grief and depression that comes straight after along with the anxiety and desperation of another pregnancy and dreaming of a successful one. So theres no surprise you're having trouble sleeping. Living is hard in every respect when you have gone through what all of us have, it's just so hard. Is there a rmc near you that they could refer you to. Could you possibly speak to your consultant direct and tell him/her how desperate you are for help. The one thing I have learnt from this experience is that you don't get anywhere without shouting and screaming for help. I am truly sorry for you and hope you can work out which way you want to go. x

Sorry things haven't worked out kittens, I guess when you're used to getting pregnant first month it's abit of a shock to get a BFN, I've always got pregnant v.quicky so know how you must be feeling. It sounds like you're having a horrible time on the prednisolone and typical that its effecting you now of all times when like you say you were fine on them in the past - great just what you need! It's heartbreaking seeing friends with new babies and I'm sure that knocked you back abit but I bet your friend really appreciated seeing you. Hopefully soon you might be able to join her in happier circumstances.

Didn't sleep a wink last night - got another scan this pm.

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