Recurrent Buns - MC Testing and Beyond... Part 4...!!!

[Julezboo]

Gosh we can chat ladies!!!

Part one HERE

Part two HERE

Part three HERE

List

STARTING TESTING

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 for sure. No children, no RMC appt, no diagnosis and not 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 27 - 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 - although high prolactin level found. Waiting for appointment at RMC with consultant, and wanting to be referred to St Mary's.
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. Bloods taken from me and DH at hospital at last MC and awaiting results on baby from PM.
IGGI2011 - Age 40, 3 year old DS. 3 MC last year, at 6, 8 and 8 weeks. Last two had hb detected. Having bloods taken by obs soon.

UNDERGOING TREATMENT

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
BANANA87 Age 30- 1mmc@7 weeks, DD (2), 1 mmc 6 weeks, 1 mc 7 weeks, currently waiting one more cycle before TTC. Going to try aspirin and progesterone as per consultant. Clotting bloods normal.

TTC

MUMMYABROAD Age 35, 1DS (2.9), 1MMC Mar 2010 (@14weeks) Ashermans diagnosis and treatment Nov 2010, Started TTC Jan 2011 Cycle 1
DIGITALGIRL Age 32 - DS 2.4 - 3MCs since ttc#2. MC1 5wks. MC2 6-7wks. MC3 7-8wks. Awaiting clotting & karyotyping results, under consultant care for rmc. Mild pcos. Currently TTC.
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

PREGNANT

LUNATIC dd1(4) 2 mmc (8 wks) dd2 stillborn (32+5), clotting problem, pg #5 section booked for 9th Feb @ 35wks. On 150mg aspirin daily.
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
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.
LOVELYBUNCHOFCOCONUTS Age 23, 1 MC (13 weeks), 1 MMC (10 weeks - growth stopped at 7), 1DD born 2008, PCOS diagnosis, bi-cornuate uterus.
HAIRYFAIRYLIGHTS
HAIRYCLAREYFAIRY

GRADUATES WITH BABIES!!

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 and currently in Special Care Baby Unit.
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.

Will do a catch up post now...

digi glad you've got that appointment thats great and hopefully you'll get some answers now.

Take care and keep us informed. Don't forget you can ask me anything you want - might not always have the answer but will do my best! x

digi you seem to be on a mission - and who can blame you! KWYM about groundhog day every time it happens I take myself off to bed and glare through the window for a while before I start ordering OPKs and extra reading material (just incase there is something I haven't discoverred), in a way it feels like normal (sad isn't it). I find waiting for results extremely painful its like time has stood still, but hopefully you should get these results faster than NHS. Well done for being strong (hope that doesn't sound patronising) its so hard at the stage. I'm strugling to decide whether to go and see Shehata. You got an appointment fast, did you just ring today?

Mattsmama what did Shehata prescribe for you? (sorry if you have already coverred this)

Hi everyone,

Glittery and coconuts I'm feeling VERY pukey. Havent actually chucked up its just all day (and night) nausea, I have had it for 5 days now and its really starting to wear me down. Its making me feel scared too because with the mmc I had HG and ended up in hospital, so I associate mega sickness with "bad" pregnancy - with DS I just had mild nausea and a couple of pukes and then it went away. I'm having a scan on Wed - I will be 6 + 5. I think I might ask about nausea meds too. So far I have tried, fizzy drinks, olives, crackers, ginger and eating regularly. Anything else I can try ladies?

I do have another question mattsmama - we're seeing him at one of his evening clinics in Surrey as it was quicker than waiting for a Harley St appointment. Does he order the blood test immediately or do you get another appointment somewhere else for the tests?

lucky yes we called this morning, was also surprised how quickly we got an appointment but very pleased as it means I will have seen him before going back to work.

I'm pretty convinced that seeing both him and my nhs consultant is the sort of progress I need in order to help me get through this emotionally. It was the not knowing that tore me up last time, being left to float in limbo while I waited the requisite two cycles before they would do the clotting tests. I googled rmc hourly till there were no articles left for me to read.

I've also just made up with one of my best friends that I drifted apart from over the last year. Which I think is good healing. She's just had her first baby, but had an awful reluctant pregnancy with hg. We couldn't relate to each other at all. But she's very happy now and is being very supportive (despite me completely ignoring her for the past year).

I've got a way to go yet, but feel a lot less helpless than I did last time.

mummy there is a HG thread in pregnancy with loads of suggestions. Lollies and meonade are a good thing to help to get fluids in. Oven chips and skittles I can't stop eating! My sickness didn't start til around 6+4ish. Funny how you associate HG with bad pregnancies. I am the opposite. As awful as it is it's the only thing keeping me going. I had no sickness with the mcs but had HG with DD so I'm hoping that that is good news for me.

digi glad you have reconnected with a friend, I did that not so long ago and it is the best thing I have even done.

That should say lemonade

digi I am really glad things are moving forward quickly. I felt exactly the same surge of hope when I finally called Dr Lower and had appointments/diagnosis then surgery set up really quickly. It was so fast moving compared to the months of "wait and see" approach all the other doctors wanted to take - I also spent hours and hours reading and googling. In the end the private option was very expensive, but I dont regret it for a minute.

coconuts thanks, I saw that thread title but didnt click on it, I have been in denial and just hoping it will disappear any minute now! Will try a lollipop.

digi I think I'm a little scared of all the meds I might have to take if I go to Shaheta which is stopping me making an appointment. Maybe I've been sucked in by the NHS again re. bad luck - its so hard. Guess I could just have the tests and see what comes back but then I would have to go through the treatment then. I wish someone could tell me what was going to happen (I know we all do its all so hard and scary and horrible) isn't it.

mummy I'm sorry you're feeling bad fingers crossed it will ease a little shortly. x

lucky I know exactly what you mean about having to accept a medicalised pregnancy. And also really really wanting to believe it was bad luck like the nhs docs say. I held onto that faith in my last pregnancy, and I needed that faith or else I would have spent those 5 weeks from bfp to the last scan completely and utterly resigned to it going wrong.

I asked DH this morning if we were right to get pregnant again without having first checked for NK Cells - and he said we both wanted to believe it was bad luck before. We both went back into ttc believing we'd had our run. And there's nothing wrong with that...because for every 'after x mcs I found I had nk cells' anecdote you get an 'after x mcs and all clear tests I had my baby' anecdote.

I don't regret that pregnancy, but I feel like I've given my body enough chances to prove it can't do it on it's own - if I could get a bit more help next time then I'm willing to give it a go. (Although tbh I think I may have crossed that line when I took aspirin for this last pregnancy.)

On a purely unscientific self-diagnosis - I haven't been ill for over 12 months. The last time I was ill, was when I caught a 24 hour bug during spring halfterm last year (and before that was a short fever when ds was 6 weeks). Since then my entire family have had gastric bugs, colds and flu. I've snogged DH when he's been ill, I've been surrounded by colleagues with swine flu and various coughs and colds in a stale airless office, and I've not even had a runny nose. My immune system certainly is strong, so I do wonder if maybe it's too good.

Sorry, I'm rambling now. Am back on the sofa after feeling a bit dizzy earlier...

digi you're not rambling at all - I always think I ramble but never anyone else. What you have put in your post is exactly what I'm scared of and I guess how you felt before you tried last time, its so hard to know the best way to go. My dh has sent an email to Mr Shahetas office (they closed at 4.00) to ask about an appointment/tests so I think we might get the tests and see what he has to say. I'm also seeing Quenby on Friday though I'm quiet sure she doesn't agree with how Shaheta carries out the tests, but if she can't help us where else are you supposed to go?

How are you feeling physically, it took me a good couple of weeks to recover after my D&C, I had no energy, it was exhausting, make sure you eat, sleep lots (when you can) and look after yourself. big hugsx

Hello everyone, not posted for ages as I have been waiting to see what is happening with my body. Looks like there is an issue again as I think I may have retained products 7 weeks after my ERPC, the doctor will not listen to me and refused to refer me for a scan. Tonight have a really swollen stomach and pain, feels like history repeating itself as this is exactly what happened after my last miscarriage and an ERPC, ended up having to have it repeated, I am just praying that this is not going to happen again as I just cannot have another general anesthetic and more time off work. Why my body will not get rid of products I don't know. Going back to docs tomorrow and I am going demand a scan, I am not going to put my mind at rest without it and I need to get on with my life. Just hope tomorrow puts an end to it and that retained products is not the issue, another ERPC would destroy me right now as I have just started feeling mentally sane again.

Managed to get a referral now to the RMC clinic, had to chase and chase though as the consultant sent it to the early pregnancy unit! useful! I just hope that I get some answers as I just cannot keep going through this. I have been told that one of the tests that they do means going to another clinic at the John Radcliffe hospital in Oxford and that we need to fill out a bunch of forms before we can have this test. Does anyone have any experience of this hospital or of any tests that require paperwork?

Digi - You are not rambling, we are all in the same boat! My immune system is the opposite to yours, I only have to walk past someone with a cold to catch it, and I thought that this may be why my body can't cope with being PG. I wish that there was an answer for us both. xx

digi that's very proactive of you. I just called my private health insurance contact today to be told they don't cover investigations for recurrent miscarriage, put the phone down and cried. Couldn't think of anything other action.
I'm so angry and upset about this, they will cover investigations for infertility, and the erpc if needed, but not investigations for RPL. As the advisor so kindly reminded me, my problem is not getting pregnant but holding on to the pregnancy.

Sigh.

Anyway - so digi can you share with me details of Shehata - I'm very impressed at getting an appt that quickly, but if you've got any information on costs that you could share I'd be hugely grateful.

Damn it. I'd pinned all my hopes on the insurance covering this, I'm not in this country for much longer and need to get appts quickly if I'm going to have any results and diagnosis before I leave.

Hi confused I really feel for you, I had retained products discovered 2 and half months after an mmc and medical management. Its horrible when it all drags out and you cant get closure. I hope your fears turn out to be unfounded, cant imagine how repeating an ERPC twice would be

Since I have been diagnosed with Ashermans, I have found out that retained products is very common in these cases. I know now that my uterine wall is not going to let go of anything easily ever again. I had retained products after the birth of DS and will very likely have them again if this pregnancy goes to term. Its a horrible thought that even if all goes well I will end up with AS again that will need treating after the birth - or even worse if it goes wrong I will have another mmc, ERPC and probably even worse AS than before.

Sorry I cant answer your questions about John Radcliff, I am glad that you have your referral though. I wonder if they will do any tests to find out if, like in my case, there is a reason for always retaining products? Hope you get some answers.

Hi confu3ed - I am being treated at the JR in Oxford. The waiting list is very short and I am sure you will be seen within a month. I have never had to wait more than 3 weeks for an appointment. At my last appointment with the pre-pregnancy counselling consultant, I was told that there was a new test that they have started doing for antibodies in the last 2 months. They have tested me for DRVVT and ANA and TPO antibodies - one of these is a new test, but I don't know which one. The only paperwork they did was filling out the forms in which the samples are sent to the labs in. I think your paperwork may just be for the referral. If you want any more info about the hospital such as parking/bus routes just pm me :)

Congratulations mattsmama

Hope you are okay digi - thinking of you.

Hi to everyone else, hope all you pregnant ladies are well and taking care of yourselves :)

digi Hi - I saw Mr Shehata at Ashstead for the first appointment and the bloods were taken straight away the same day. I think the results actually come back quite quickly so make that follow up appt as soon as you can because he books up really quickly! Let me know how you get on. Regarding colds etc - I haven't had a sniffle for at least 18 months! That is with a 4 year old who coughs and splutters everywhere and seems to catch something every week at pre-school. Been on the steroids now 15 days and I have a sore throat and a runny nose! Never thought I'd be happy to get a cold albeit a very minor one!

lucky I would advise anyone to get the killer cells test and whatever tests Mr Shehata advised. You have NOTHING to lose. It feels so strange to me taking meds during pregnancy (when pregnant with my DS I only took 1 paracetamol all the way through). Mr Shehata's results speak for themselves and although it's not a 100% guarantee at least you are covering all your options. Good luck ladies - let us know how you get on

digi Hi - I saw Mr Shehata at Ashstead for the first appointment and the bloods were taken straight away the same day. I think the results actually come back quite quickly so make that follow up appt as soon as you can because he books up really quickly! Let me know how you get on. Regarding colds etc - I haven't had a sniffle for at least 18 months! That is with a 4 year old who coughs and splutters everywhere and seems to catch something every week at pre-school. Been on the steroids now 15 days and I have a sore throat and a runny nose! Never thought I'd be happy to get a cold albeit a very minor one!

lucky I would advise anyone to get the killer cells test and whatever tests Mr Shehata advised. You have NOTHING to lose. It feels so strange to me taking meds during pregnancy (when pregnant with my DS I only took 1 paracetamol all the way through). Mr Shehata's results speak for themselves and although it's not a 100% guarantee at least you are covering all your options. Good luck ladies - let us know how you get on

Thanks Mattsmama, its good to hear someone who has seen him and feels confident. I'm not sure if I do get ill or not the last time I was ill I had what felt like flu a few weeks before I lost our baby, ached all over and full of cold (it doesn't seem to fit!). If you don't mind me asking how much did it cost for your initial visit and tests?

Thanks Mummyabroad! That is about how long it was for me last time 2-3 months :( It is rubbish isn't it as you just want to move on. This time though I have been looking out for signs and my tummy has been swollen since the op, what was strange was that I had a bleed which the doc said was a period, but I am not convinced as I had only stopped bleeding totally 2 weeks before plus it was not like a normal af and now 2 weeks later I am still having signs of bleeding. It is so frustrating when docs will not listen!
Asherman's is something that crossed my mind especially as I have had now 4 ERPC's and treatment for pre-cancerous cells. But I usually have normal periods so maybe not. At least with the referral they should do tests and rule such things out?
I have never heard of retained products after a birth before, that must be a scary thought, but if the hospital know about it can't they take some precautions this time round?

Milky thanks for the tips on the JR, it is great to hear from someone who has good first hand experience of the place. I had heard great things from a medical perspective, as one of my friends did a medical rotation there a while back and was full of praise. How long does it take for all of the tests and results? Oh and thanks for the tips on the paperwork too :)
I hope that they can start them soon as I am not going to TTC again until we get some answers, I just cannot keep putting us all through it. My DD is old enough to know that there is something going on and I am so sick of being upset. The mad thing is that since we have decided to wait, I feel so much happier! I know that i do want to be PG again just not ready to jump back on the TTC bus just yet.

I guess all the fertility treatment, drugs, blood tests etc took their toll much more than I realised at the time as for the first time in a long time I actually feel OK at the mo, mind you tomorrow could change all that!

confu3ed The last set of tests I had came back exactly 3 months later - this was the genetic karyotyping tests. The tests on my baby after the last miscarriage should be coming back this week or next. I have never had a problem with getting results back on time - they are very rigourous about timing. They'll take about 10 vials of blood - if it's the same test I had - the phlebotomist is lovely - she never seems to remember me, but Ive had bloods taken by her for the past 2 years now after every mc.
I hope you find out what is causing the abdomen pain - We're also trying to wait until we get results, but the temptation is far too great for me...

ladybee and lucky here is a page from his website that details his clinics and private consultation costs. DH managed to speak to his PA this morning, but when I've emailed her mid-week she's pretty speedy in responding (within the hour).

When I enquired last November about NK Cells testing I was told that the nk cells test is about £207. Once I took into account the intial consultation and a follow-up consultation I reckoned on about £600 for a diagnosis. But then I guess there's the cost of treatment after that.

mattsmama hooray for the runny nose! We've got a 7:30pm appointment, hence not sure anyone else will be around to take my blood. But hopefully. Will wait and see about booking a follow up, just in case. Also, assuming my body recovers in the same amount of time that it normally does after a natural mc I've got at least 5 weeks till I next ovulate so am in no immediate rush. Ideally would like to have a diagnosis by the time my WTF cycle is over.

Looked at my surgery notes today - two samples have been sent off. One for cytogenetics, the other for histology? Assuming one is chromosomes, the other is to check for infections? Will ask on Friday.

confu3ed hope you get it sorted. Can't think what to advise as this is my first erpc. Can you push for an hcg test to check levels have dropped sufficiently? Or anti-biotics to combat any infection?

I thought I was feeling better but have been having dizzy spells all evening...so obviously not quite 100% yet.

lucky I 'felt' like I was coming down with something last Monday. All my muscles were aching, and had an awful headache. Was expecting it to turn into a cold (ds had just got over a fever), but the next day I spotted and that's when we found out it was an mmc. It never turned into a cold. Am convinced it's related. Am also quite sure that no doctor will ever be able to tell me that it was.

Hi confused I had a really hard time getting doctors to listen to me too - keep pushing though, its is worth it in the end. When I had retained products after the mmc, my doc only took notice when I told him I had a positive HPT 2 and half months after the medical management. He scanned me straight away when he heard that. My blood HCG was then done and shown to be 250.

Sorry, I didnt explain it clearly about DS's birth, I had retained pieces of placenta detected a month after the birth. I didnt have periods after that for 6 months but then I took progesterone and got them back but they were lighter than before. I now know that this is an indicator of Ashermans but then I was just told that "birth changes things" - after the second ERPC I lost my periods altogether which in fact was a "good" thing because it made me push and push and push until I got the right diagnosis. It is certainly possible to have AS with periods (but they are light) Have you ever had an HSG? HSG's detect Ashermans in about 60% of cases - because to find it you really have to be looking for it. Most specialists use a combo of HSG + sHG as well as taking your history into account of course. They will normally look at this after bloods have been done to rule out hormonal causes. There are only two AS specialists in the UK (NHS-Dr Trew in Hammersmith, and Dr Lower, private, central london) and a handful of others around the world. Most other consultants believe that AS is very very rare (and therefore you cant have it) and incurable (and therefore they are reluctant to diagnose it) Most of the hundreds of women on the support group at www.ashermans.org have self diagnosed first and then found a specialist doctor to confirm the diagnosis and get treatment. There are lots and lots of success stories - and from women with much more severe cases than mine.

Hope you get answers, I agree with digi you really need an HCG test and precautionary antibiotics.xx

digi I would have thought they would do the blood tests the same day rather than hauling you back just to do the tests - but you never know (!) Hope it goes well!

lucky Mr Shehata's fee was £200 if I rememember rightly but it depends where you see him as to the cost of the blood tests. He has various clinics at Harley Street and a couple of other hospitals and the hospitals made the charge for the bloods in my case as that is where my first appt was. Think they were about £175.00. The killer cells test was the most expensive one - I had thyroid antibodies tested as well. Hope this helps

Hello, I just thought I'd update you as this might be helpful to know. Possibly not for LadyBee if you are leaving the country soon but could be useful for others who can't afford to see Dr Shehata privately.

My doctor referred me to Dr Shehata on the NHS. I am lucky, in that my GP is very sympathetic to my various pregnancy loss ordeals and is therefore only to eager to help in any way he can. I know some GPs can be curmudgeonly and old fashioned and not particularly helpful in these cases so perhaps if you've come up against a brick wall it may be worth seeing a different doctor in your practice. I find, often the younger or locum GPs are more open minded. Anyway, yes, it did take a while to get an appointment. About 3 months from the referral date. But as I'd gone to see my GP straight after my last ERPC 3 months was fine as I was happy to take a bit of a break after 3 miscarriages in 10 months.

My appointment was today. Dr Shehata was very nice and sent me down to have the NK Cell and Thyroid antibodies tests - different from the original Thyroid function tests I've already had at UCH, I think. He told me that the results shouldn't take much more than about 2 weeks to come back and that I should get either an appointment for a visit or for a phone consultation in 6-8 weeks. He told me that I needed to take 75mg Asprin, 25mcg/1000 IU of Vitamin D3, Pregnacare + Omega 3 and Folic Acid (I'm already taking 5mg) starting now and will need to have been taking all of these for 6 weeks before TTC again so, in theory, the wait for the follow up fits in ok with this.

He said that the speed of the results coming back was quite good, the tricky bit was getting the follow up appointment as he is very booked up at the NHS clinic. In the eventuality of it being difficult to get me in for the follow up appointment that soon I asked whether it would be possible to see him for that appointment privately to speed things up, and then go back to seeing him on the NHS for any necessary treatment during my next pregnancy. He said that was fine and entirely possible as I was now "in the system".

HavingKittens thats great news It sounds like really positive progress and I am so glad the dates and timings are fitting in right too. Its really nice to hear a positive NHS story for a change. Well done your GP.

havingkittens yuor GP sounds great. Very pleased things are moving forward for you :)