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...

havingkittens my husband rang for an appointment this morning and we can't get in until 20 April (and that is privately) so wasn't as quick as digi but we've booked anyway. Did he tell you to take Vitamin D3, Omega 3 and folic acid in addition to the pregnacare before getting the results back? I already take pregnacare and have been wondering what extra vitamins to take milky was talking about what vitamins might be good to take in pregnancy and I asked me GP. She said she would do vitamin checks on me but to check with Prof Quenby on friday what ones would be worth checking. Fab news about been referred on the nhs my GP has been very understanding and did refer me to Quenby (wasn't sure what to do at the time) but not sure whether they would do another referral at this stage! Quiet happy to pay private anyway.

Hi lucky, yes he told me to start taking them straight away. When I was seen by the RMC at UCH I was told to take the Vitamin D3 and Folic Acid as a matter of course even without anything coming up on the tests apart from low ovarian reserve. She also told me to take the 75mg Asprin as an empirical measure from the time I got a BFP (not earlier because I get heartburn) so Dr Shehata's recommendations are not much different apart from the Omega 3 and Pregnacare (which a lot of people take when TTC anyway) so I think it's all good to take regardless of the test results. He only mentioned the normal dose of Folic Acid not the higher dose, I am on 5mg for other problems so it may not be necessary for you to take any more than the 400 microgrammes.

Blimey though 20 April? That's not much sooner than my follow up will be! Still, it is quicker than waiting for an NHS referral from scratch so it's good you've got the ball rolling. In the booklet he gave me it gave a breakdown of the percentage of the various causes of miscarriage and it claimed that 50% of miscarriages were caused by immunity problems.

I was going to say too, that on that basis it really is astounding that this testing isn't offered more widely on the NHS.

Thanks havingkittens I'm definately going to ask my GP to run the Vit D3 test though do you think I should start taking it anyway. The wait to see Shehata is a long time but me and DH have decided to ttc and if we don't conceive at least we will have an appointment ready for testing and to follow it through then. Shehata's office said they have an 85% success rate but so did my rmc consultant which does confuse me a little. If you don't mind me asking when did you have your mcs, my last one was at 15 weeks and I'm not sure how NK cells relate to my losses (will ask Quenby on Friday).

digi I also wonderred whether my flu was anything to do with the loss of our baby because I did feel very ill, but I had scans done after I was feeling better and he was fine at that point. When nobody can tell us why its hard not to look in to everything, I'm always wondering what I did and why it happenned, its hard not to.

On the more positive front I'm v.happy today as AF is in full swing.

Hope everyone is okay BIG WAVES and HUGS to who need them.

lucky just to say glad you've got that appointment. I would ring now and again on the of chances of any cancellations with Mr Shehata as a couple of times his PA has come up with other dates for me when I have done this. Good luck with your appt!

Lucky my MCs were all quite early. All MMCs so discovered later than if they were natural I guess. The first one was 8 weeks (discovered at 10 or 11), the others were all about 5-6 weeks.

It's so hard to know if an infection or illness caused it but there are so many people that get bugs and what have you whilst pregnant who are fine so who knows? I would imagine that if all was ok on your scan then that probably wasn't the reason. It's hard not to be on a quest for answers isn't it? Just to gain some sort of control over the situation rather than feeling helpless.

Milky thanks for the info, i had tests done on the foetus which came back fine. The doc said that it is unlikely that they will find anything in the tests and that it is probably bad luck. I just can't believe that.

Thanks Digi I am sure I don't have an infection as I feel fine I have already had 3 weeks of anti-biotics since the ERPC and I really don't want anymore I just wish that the doctor would take me seriously.

The doctor tried to get me a referral to the hospital today and they refused I have to have more HCG tests and if my levels have dropped then that is it. I have a swollen stomach just like when I miscarried and it hurts, just so frustrated that the medical profession seem to think I am fine. I get my bloods done tomorrow and the results on Friday and praying that maybe someone will scan me after that. I cannot believe that they will not with my history. I am toying with the idea of a private scan but not sure if anyone will see me just for a scan?

Mummyabroad it sounds like a battle to get diagnosed, but that seems to be the way with the NHS. Does scarring always get worse with an ERPC? No I have not had an HSG when I suggested scarring to my consultant, he said that my scan looked fine, but I know that in most cases any scarring cannot be seen in a scan. I have very light periods, but I always have had.

xx

lucky I was told by my GP to start taking the vitamin D supplements before getting results back from the blood tests. My consultant ran the tests about 2 weeks ago. Apparantly it takes a long time to process the results for this blood test.
My GP told me that even 20 mins sitting in the sun baring your hands and face is enough to stimulate the synthesis of Vitamin D. I am reading all these posts, and will be going out and buying omega 3 supplements tomorrow - I was taking this when I was pregnant with my daughter, so will give it a go again.

When I was pregnant with my daughter, I developed a horrible flu/cold along with food poisoning in week 5 that in turn developed into mild nausea and sickness and fatigue (classic pregnancy symptoms). I have also had the flu type symptoms followed by a cold with every pregnancy, except for the one in the summer. I don't know if this is just because of a low immune system or something else.

Another symptom I have had during my pregnancies I mc'd has been feeling cold around my tummy and chest area. Does anyone else have this during the first weeks of pregnancy? I never had it with my daughter.

Hi confused

So sorry you are not getting better help. I had a swollen tummy too, and I am a firm believer that when your instincts tell you something is not right, they are to be trusted.

No one knows for sure why thousands of women have ERPC's and are just fine and some have them and get scarred. It could be that some women have a natural propensity to scar more than others. I have quite a few smalls scars from tiny cuts and grazes that I have got over the years so maybe I am just one of those ladies. I know in my case another ERPC would be a problem because I already have a thin endometrium that has suffered damage, the likelihood of me scarring again because of this alone is very high, so I would do all I could to have an ERPC with someone who knew about scar tissue, was willing to do it under ultrasound guidance and I would take high dose estrogen afterwards to try and make the endometrium grow quickly before scar tissue could get established. Its a shame these three things arent standard for everyone, then maybe there would be no Ashermans cases.

Some women get scar tissue even though they have never had a traumatic birth/retained products/surgery etc. because scar tissue can also be caused by infections - so if you feel you are at risk of infection, do hurry and get more antibiotics.

Its true that you cant see scar tissue on a normal scan, but you can get "clues" If your midcycle lining (day 10) is below 7mm this would indicate something is preventing the lining from growing properly. HSG's are useful for detecting AS but are better for more obvious cases. There is a study that showed that HSG's AS detection rate is only around 60%. I hope you get offered one at some point because they are really good for learning things like whether your fallopian tubes are completely open or if you have a different shaped uterus (septate etc)

If you want a private scan there is a thread full of newly pregnant after mc women here who know all about where the best places to go are - I think for normal scan with a sonographer its about £75, depending on where you are in the country.

If you want to kill two birds with one stone and rule out/look into AS then Doctor Lower (who treated me) in Central London charges £205 for a consult + £250 for a 3D scan. He is the only AS doctor who diagnoses via scans. Let me know if you want his details.

best of luck with the bloods - at least that is small a step forward. xxx

havingkittens that's great that you saw him on the nhs. Very informative re: supplements too. I was on aspirin and pregnacare plus (with omega 3) during my last pregnancy - maybe that's how it got too 8 weeks.

lucky well done for booking an appointment.

The Alan Beer book got delivered today. Very interesting reading. I don't think I would want to have read it before now. I am adamant that 4 miscarriages in a row is not bad luck.

It's been a week since that scan. Had a big chat with dsis tonite about it all. She was so sad for me and in awe of how much I'd educated myself. It's the only way though. You can't just sit there and let doctors tell you to keep trying when they have no idea why you keep miscarrying.

Sorry just read that back and it sounds really big headed. It was the first time I'd spoken to her about it - I think anyone would be impressed by what we all know. It's so sad that we can't trust what we're all told and that we have to research and google and find recommendations of specialists.
confu3ed I can't believe they won't scan you. Are you anywhere near a hospital with a walk in epu? Whittington has one in north London. Or you could just pitch up to an a&e and they'd have to send you to a gynae dept for a scan especially if you're testing positive on a pregnancy test.

I got that Dr Beer book on ebay, it arrived at the end of last week and I thought I'd read some of it before my appointment but didn't really get a chance. I must say, my head nearly exploded when I opened it! Information overload! When I did get to my appointment I just couldn't imagine asking all those questions about all the things addressed in the book. It mentions both migraine and IBS sufferers being at risk, both of which apply to me. I'm going to try and have another look at it before my next appointment though.

Just to let anyone that's interested know, having paid £13.29 for a box of Pregnacare plus at Holland & Barrett because I wanted to start them straight away, I have now learned that you can get them at www.chemistdirect.co.uk for £8.99 - good to know for when I run out!

Oh and 25 microgram Vitamin D3 at Holland & Barrett is in their 1 penny sale which means you can buy one jar and get a second for 1p. I think they have Folic Acid in this offer too so you can get one of each and the cheapest is 1p or two jars of each for more or less the price of one depending on how stocked up you want to be.

digi, havingkittens I took pregnacare plus (with omega 3) up to been about 12 week and then just went onto pregnacare original (without omega 3) as I was feeling really sick and the capsules felt too much to swollow, obviously since the mc I've been wondering if this is a reason (as you do!) HK sorry for all the questions but did he tell you to just take the O3 with the pregnacare of a fuller strength O3? I'll have to get to Holand & Barrett and stock up...boots have a 3for2 on vits at the moment but they're £14.99.

confu3ed sorry you're having trouble getting some answers, I can't believe they wont scan you after everything you've been through its horrible when you're in a desperate state and nobody wants to listen, I hope the the bloods come back and someone will take you seriously.

digi your post didn't sound bigheaded your dsis is right to be in awe like you say you've got to get as much information as possible, its such a shame that we have to but theres no other option.

He said any Omega 3 is fine but suggested the pregnacare plus because he wanted me to take the multivitamin as well. He also said non fish oil derived Omega 3 is fine too if you are a vegetarian.

He didn't mention why but I have read, both in Alan Beer's book and on various websites that Omega 3 helps calm an overactive immune system.

hello ladies Just thought I would add to this thread that if any of you have Hashimoto's Hypothyroidism as I do (which is an auto immune problem) then you shouldn't take a prenatal with iodine in it as this aggravates the antibodies. I take Sanatogen Mum to Be which doesn't have iodine and the Mum Omega. I am under Mr Shehata and he said these are fine to take too. Hope this of some help to someone

Vit D3 bought and more pregnacare plus ordered (amazon also sell it for £8.99) Thanks Havingkittens

Still bleeding here, but it's only been a week since the erpc so hopefully not much longer.

Hello Just a quickie from me waiting to see how the scan went glittery ? :)

A question for MummyAbroad, how did you first suspect you had Asherman's? Or simply a question for those who have had a few ERPCs.

I ask only because I have had so many procedures now, 7 in total, and I can't help but worry if there have been any ramifications. I recently seem to get rather uncomfortable cramping a couple of days after my period. I don't get bad period pain apart from the first day but my periods only last 3 days and are not particularly heavy. When I had my uterine scan as part of my RMC tests last year they said everything was fine and there was no sign of scarring or adhesions but I can't help wondering where these cramps are coming from. I have only had 2 periods so far since my ERPC so maybe this is why my period is not as heavy as it used to be. In fact I only really get a chance to have a couple of periods between each pregnancy so maybe I'm just not giving my body enough time to get a proper lining up. It could also be my age of course. Don't periods get shorter and lighter as you get older. I am only (only! haha!) 41 but my mum and grandma both started menopause at about 43 (yikes!).

Anyway, it's more the cramps that worry me. Anyone got any ideas or similar experience? Is it just my body getting back to normal after the hormonal rollercoaster?

Hi HavingKittens I had no periods at all after the last ERPC. I was prescribed progesterone to bring on a bleed and it didnt work, then I was prescribed the pill for a month and that didnt work. My cervix was 100% scarred shut so blood couldnt get out at all. I also had some scarring in the uterus (probably what caused the mc) The majority of women on the yahoo support group/NPO do have periods and it is much harder to get a diagnosis when you do. If you want more information there is a very experienced AS doctor who replies to emails for free - [email protected] You could ask him what he recommends. Alternatively sign up to the yahoo group and read the files section, they have 10 years worth of info there, very interesting reading.

A uterine scan would not show scar tissue. Only a hysteroscopy will 100% reveal the true extent of adhesions but most AS specialists recommend an HSG + sHG and that you send the films to them for review. The hysteroscopy is then done to treat at the same time as diagnose. Cramping and not bleeding is associated with trappped blood, but cramps in themselves can be a) a good sign that enough lining is being built up or b) an indication of endometriosis (women with AS are at greater risk of developing endometriosis).

I am not really sure about periods getting shorter and lighter with age. I know that the lining thins when menapause starts, but before then I believe the flow should be the same. If you are worried about the lining then try and get a scan done at mid cycle (day 10) to measure it. It should be at least 7mm. If its not then I would try and do some more invasive investigations like HSG/sHG.

In my news - I have just had a scan, I'm 6.5 - measuring bang on for dates and heartbeat is 120 - I am very pleased DH overheard my doc say to his assistant that it was a "miracle" that I was pregnant as I had had Ashermans, and that I went to see an "amazing" doctor in London.

The only slightly worrying thing is that I asked for extra measurements at week 12-16 to check for incompetent cervix (as recommended by my London doc) but this doc said that IC is a "myth" I know he will do the measurements anyway, but I will have to get a plan B in place if it looked like I actually needed a stitch. London doc did say that I was low risk for this though, so hopefully I wont have to jump on a plane for emergency surgery!

Hi Having Kittens,

Have only occasionally posted on here but saw your question about having lots of ERPC's.

I have had 8 ERPC/ops for retained placenta and have v light periods (but no cramping). After having 3 MMC in the last 12 months i decided that i may be at risk of having Asherman's. I read the info that MummyAbroad posted (many thanks)and decided to go and see Dr Lower as per her recommendation. This was covered by BUPA as i didnt mention TTC just said was worried about light periods.

Anyway was scanned by him and he put my mind at rest that i didnt have scarring-which i was v relieved about after the number of ERPC's I've had! Am now pregnant again but only v early days. Hope this helps.

mummya so glad to hear the scan went well and bang on dates which is fantastic.

Having extremely heavy AF now after been worried when first two days were spotting to light. My first AF after mc was very light and I spotted on and off up to day 19, pretty sure I didn't Ov that month either and now this, is this normal? I just want my body to be right so I can conceive again.

havingkittens not sure about the light bleeds but periods can change after each pregnancy, it might be a good idea as mummya says to have a scan in the middle of your cicle to see what the thickness is. Its so frustrating when you don't know whats going on inside your own body isn't it.

I guess the scan I had when I was having my RMC tests was done mid cycle with no cause for concern, which was prior to my last pregnancy. My main concern/question is why I am having such cramps a couple of days after my period stopped. I would understand if it was ovulation time but it's much too early for that. They have been quite uncomfortable today.

I tend to conceive very easily so maybe there is another reason.

Thanks for the info though MummyAbroad. I may drop him an email to see what he thinks. Brilliant news about your scan! So pleased positive things are happening for you at last.

HI Libby7 congrats on your pregnancy, hope this one is sticky and uneventful.

luckyfor2 glad your AF is in full force, this must be one less thing to worry about then. I have seen a lot of ladies on this board and TTC board say they didnt ov first month after mc, I think there is no real "normal" in that first cycle.

Havingkittens If the sonographer wasnt looking for lining measurements in particular they may not have told you there was a problem. A measurement of 3mm for example is "normal" at the beginning of the cycle but not mid cycle. If they didnt know where you were in your cycle (were you told to go on an exact day?) then they might have dismissed a low measurement as normal and just thought you were in the early phase IYSWIM. Can you request a copy of your notes so you can check? The best way to get a measurement is go on day 10 and get the sonographer to look at your ovaries and see if there is a large pre ovulatory follicle growing, this will confirm you are mid cycle and pre ov when the lining should be thickest. If lining issues are really a problem then three measurements should be taken each time and the test repeated next month to double check. The lining should also look even (trilaminar, or triple striped) uneven looking lining pre-ov would also indicate a problem worth looking at more with SHG/sHG.

Is there someone you can mention these post AF cramps too? Have you got any appointments coming up? I'm afriad I dont really know what it might mean, but I have heard a lot of AS ladies complain of very painful cramps pre treatment.

Mummy thank you for the info, and my stomach was huge the last time they missed products. I am getting so frustrated knowing that no-one will listen to me. Like you say you know your own body. I guess I just have to wait for the bloods on Friday but had pain today and if its worse tomorrow I might just go to A & E maybe then I will get a scan? Failing that a private one doesnt sound too expensive, and thanks for the doc name for AS might well need that in a couple of months once I have got over this ordeal. Big time congratulations on the scan :)

Cheers digi and nowhere near here to go, I am in Reading and there is nothing at all my helpful EPU told me to go to my GP when I said that I had done that and that I was still having some blood traces and pain and my stomach was huge she told me to go to A & E if it gets worse. I just dont know whether to do that or wait till Friday now.

Thanks Lucky4

And ladies Asda do pregnacare 3 boxes for £10 or at least they were doing it for that price the last time I ordered some.