Recurrent Miscarriage Testing, trials and tribulations...Part 7!

[squizita]

Hi all, carrying on from part 6. All kinicker-checkers, blood-testers, clinic-attenders and finger-crossers welcome. Nothing but love and crossed fingers...

Thanks donttry and tea, I'm going to keep going with the vit d just now and I got some vit b complex and omega 3 too, hope your feeling better donttry, congrats tea :)

Having a wobble about seeing Dr Q on Monday now, not so much about the actual test (more vaguely unpleasant guddling - god knows I've had enough of that) but whether I should be going at all. I was so upset at the thought of stopping TTC and felt better once we had a plan of what to do next, now I'm actually enjoying that we are not TTC and I don't have the worry of a potential BFP and the early weeks looming over me again. The last few times I've been pregnant it has been an "oh shit" reaction
I don't even know what I want any more. I'm beginning to think I'd be much better off to give up on the idea of a third child and find some other good things to focus on that don't have the potential to put me through the whole horrible cycle again. Maybe the sadness about stopping is just a grief process for what might have been but doesn't mean that carrying on is the right thing to do...?
I know that I'm not committing myself to TTC again by seeing Dr Q but if she offers us some hope then we are back on the merry-go-round again.
My boys are growing up so fast, in another year the youngest will be at school. All my friends have had their 2/3 kids close together and moved on to other things as the kids go off to school - we already had the biggest gap in the group because I had a MC in between the boys. We started TTC hoping for a 2 yr gap and now it would be minimum 4 yrs.
DH and I had a "state of the nation" discussion on our wedding anniversary, we normally talk about where we want to be in 1/5/10 yrs and I just don't know. What I want is not to have to have dealt with all this crap and to be able to have had my 3 kids at 2 yr intervals like everyone else and be happily able to hang up the nappies and move on.

Oh baking hugs.

I can't answer your quandries but going to see Dr Q means you'll never have that 'what if' moment later down the line - sorry that's all I can offer but I know it's a really personal decions.

Baking its such a dilemma but are you sure you're not just feeling good about not ttc because you know you have a plan and are having an enforced break? I would definitely still go for your appointment and ask lots of questions about the chances of success etc. I guess its only with all the facts that you can really make a decision. I think you'll just know when the time comes whether you feel you can ttc again and possibly go through another mc.

I understand where you are coming from though. I had always wanted 3 children but am now really hoping that if this pregnancy works out I will just be happy with 2 so we can move on from all this. Let us know what you decide. Always here to listen even if we can't make these choices for you.

Hello everyone. Had a good couple of weeks holiday, making most of unusually good internet in our little holiday cottage, everyone else asleep. Home tomorrow.

Baking, I can absolutely empathise. It's a bit different for us in that I was happy for, even planned for a biggish gap in between nos 2 and 3 - my boys are 2.4 years apart and for the first few years that was fine, i always figured I had plenty of time . Mc no. 4 would have resulted in a five-and-a-bit year gap between ds2 and dc3, mc no. 5 in a six-and-a-bit year gap. I'm thinking a lot atm about the advantages of being done and dusted - being on holiday, for example, and enjoying my two a lot, I've been thinking of the back-to-square-one-ness of what it would be like juggling the holiday needs of a 9yo, a nearly 7yo and a baby - and am envying people who know that two is enough for them, iyswim.

Glad things still going well, tea. Donttry, thinking of you - we are seeing geneticist on the 5th for a first appt (no diagnosis as yet, still have to go through bloods and everything as gynae wouldn't do them) and I have very mixed feelings about the whole thing.

Baking, you are very good and very honest at expressing your feelings. What shines through for me is your overwhelming desire to give it a shot. Despite the fear, the disruption, the pain, the uncertainty. The grief and frustration about the way things were meant to work out, and didn't. It is nice to be on a holiday from it all. But probably because it is just a holiday. Why do you want another child-maybe your answer lies in the answer to that question? There are a lot of good reasons why you should give up now, and perhaps a large reason. Was the third child part of a plan that can now never be? was it this idea of a particular kind of family life, rather than a third child in itself that you wanted? Or do you truly yearn to be a mother again?
I truly empathise. I'm doubting my reasons for having another child now. Had a fantasy about 2 girls close together. Playing through their childhood together. This cannot be now.

I read somewhere that life is not a problem to be solved but a mystery to be lived. I am still trying to figure this out fully but it seems like good advice.

Picardy, glad you had a lovely hol. Good luck with the geneticist. we are going in for karotyping on Wed and am going to see if the results can be expedited and sent straight to Dr Shehata.

hope everyone is well.

Good luck tomorrow Baking. I hope you get some helpful insight.
Had a weird AF, on and off, spotty at the end. I suppose that's normal for the first one after EPRC? Anyone else have short/light AFs? I really think this might be part of the problem, but since I seem to OV and am regular, doctors don't seem concerned...
Best wishes to all. xx

Thanks everyone.

Justone have you had a mid cycle scan? It's one of the tests I had to check that you are developing an adequate uterine lining to support a pregnancy.

Hi, Yes, I was in the process of having that looked at just before last pg, then I managed it and everyone said 'hooray!' and now it looks like I'm back to square one. I will certainly mention it at St Mary's in October. I know I can manage 22mm (when AF finally came back after 2nd MC (which needed 2x ERPC and 1 hyseroscopy and then 2 weeks HRT), but I'm afraid to say that 2.2 mm on day 23 was also spotted :(

Good luck today Tins, hope you're feeling ok whatever you decided.

I'm kind of hoping I can join this thread. Not sure if I'm 'eligible' as have had two miscarriages rather than three. Am being referred for testing early though, as they uncovered abnormalities with my uterus after the first mc so we agreed a compromise of two before referral (very magnanimous of them). They say its either bicornuate or septate but needed to do more tests to find out which and therefore what they can do about it.

No dc. Had the second mc last week. Was doing quite well until yesterday when I had something of a humiliating meltdown at the zoo with my parents, DB, DSIL and nieces. Probably suggests I'm not as fine as I'm trying to convince myself. I've also noticed an increase in pity responses this time round which I hate. Last time people did the whole 'at least you can conceive', 'it happens to so many people' bit which I grumbled about at the time but now kind of miss. This time people either don't know what to say and just look sad and sorry or talk about options such as surrogacy or adoption. Did other people find this?

Sorry I'm moaning. I appreciate that: I haven't been through the mill as much as the rest of you in terms of mc; that there is still the likelihood that next time will be fine according to stats; and I'm lucky in a way that they're looking in to something tangible, but I do feel pretty glum regardless.

Take care all.

Welcome ilovem - we don't apply the "recurrent" criteria as strictly as the NHS do! I'm really sorry you are going through miscarriage again. I think you are quite right that people just don't know what to say when it begins to look like it's not just bad luck. Do you have a date for investigations?

justone meant to say that an odd period straight after an ERPC is prob ok, as they've sucked out the lining and there will not have been chance to build up the endometrium again, so hope I didn't worry you. If it's persisting over a few cycles then maybe it's significant.

I'm off to Coventry shortly - wish me luck with the sat nav (and the appointment)

Oh phew. I hoped that would be the case. Also considered the TTC after mc positivity thread but it didn't feel the right place for me if you know what I mean. Far too positive, particularly when you know something is wrong.

I have what was going to be my booking in appointment with my GP on Weds so am going along and discussing it there.

Good luck in Coventry. I really hope you get a good plan for what next, and that it is given in a sufficiently containing way that you feel comfortable going ahead with it.

Hi all, back from hols. Was a good break. Going in on Thurs for my thyroid tests for the TABLET trials. Of course I'm scared 'what if this comes out as a problem and I get the placebo?'. But then at least I'll know, so I can tell a private clinic if needs be in future (and who knows, in many of these trials a good chunk of the placebo ladies carry to term anyhoo)... and at least in a couple of years some women in our position will have an answer they wouldn't have up till now. Answers and Karma.

Baking - Wishing you luck with Prof Q, I guess you're in there now with her. Hoping that the tests are not too unpleasant and that she gives you some information to help bring clarity and help you plan your best way forward.

Ilovem Welcome. Know exactly what you mean about the almost harsh 'you'll be OK' turning in to the scarier (albeit well meant) "you can adopt...". Sucks, doesn't it? :( Like your considered doomed right at the time you need courage to try again. Have you read any books on this? I read 'Miscarriage- What Every Woman Should Know' and 'Coming To Term'. The first one has some uplifting cases of septate and bicornate ladies carrying to term.

Donttry & Picardy Hope your appointments get you some answers and clarity. And I hope those answers are swiftly and clearly provided to you! (Don't get me started on NHS admin efficiency...).

...with general 'vitamin chat', my dose is: 1 x normal woman's multivit with everything except excessive A (although interestingly lack of A can be linked to molar - which is why it's common-er with women who've had several MCs/DCs in a row - months of no vit A- of course for very good reason), high-ish dose of B vit complex with folic acid (was advised on line and at health food shop that the complex absorbs better 'as a whole') for the old hormones etc' ... I am thinking of also boosting my D vitamins. Any good brands/doses people recommend for vitamin D?

Just a quickie about hospital notes for those who got second opinions.

Turns out Mr Shehata's office never requested my notes from Sussex (where I am normally treated) and had no intention of doing so. On sufferance she is now going to ring Sussex to see what they can send. I told her she needed my full records but this seems to floor her and she says they won't be able to do this in time.

Is this normal? Would a second opinion consultant not look at your medical records? Who's responsibility is it to get the notes? Sussex told me a few weeks ago Mr Shehatas office would request them but to chase them about it, which is what I was doing.

What can I do now? I'm really upset.

Hello You guy sound amazing and so supportive - thought I'd add my story! I am pregnant with my first child after 6 months of trying. I have had bleeding and bad cramps (worse than my period) according to the mid wife I am 9 weeks today but I think I ovulated day 20 and therefore I think I'm 6 weeks from conception. I belive there adding three weeks on. My bleeding started Friday, brown mucus then it got worse its still bad today. A&e took bloods yesterday and the hcg levels were 5900. I had an internal where my cervix was closed. Had a scan on my tummy where I had a yolk sac and a ges. Sac and a 4 mill foetus. I had an internal and that should the Same. They didn't say anything about a heart beat though when I asked she said it was a visual and they don't listen for a heart beat. She suggested I have a blood test agin tomorrow. (48hours) But the hospital rang and asked to cancel that and wait for a scan next week. This seems a long time to wait for what I think I already know is happening!?

Oh sorry I don't think i should be in this group :( sorry

That's ok Nemo - but you'll probably get more responses on the main miscarriage board.
If you are six weeks from conception that would be described as 8 weeks pregnant. 4-5mm is the size of a 6 week foetus and you would normally expect to see a heartbeat on the scan at that size (but not to hear one until much later on), so either your dates are out or things are not progressing as they should. Because you have a 6 week size foetus and that's the earliest they expect a heartbeat to be visible, if they can't see one they have to wait a week and rescan to see if it has developed. The wait is horrible, I'm sorry you have to go through it.

Baking how did your appointment go?

Good, thank you. I'm glad I went. Was going to update earlier but thought it might turn into an essay and I had to make tea.
Prof Q is massively enthusiastic about her research and has relocated to Coventry to work with Prof Jan Brosens on recurrent miscarriage.
She said success rates for RMCers with no diagnosed/treatable problem is only 40%. Her research was initially about growing uterine cells in the lab, apparently there are a group of women whose endometrial cells don't grow properly in the latter part of the cycle which affects implantation causing first trimester miscarriage. She was pretty convinced from my history that I fit into this group. This can be treated with progesterone but it needs to be given from day 21 of the cycle, by the time you get a BFP it's too late. Prof B's research is into the NK cells, and if levels are high they treat with prednisolone. Progesterone alone increases success to 60% and with prednisolone if NK cells high, to 80% in their initial trials. She also said the process of taking the biopsy seems to stimulate an inflammatory reaction causing a better lining to form - they've seen increased success rates with IVF just from doing a biopsy as part of the work-up, so she was encouraging us to try again as of now since the result would be back by the time I potentially got a BFP next cycle.
She was desperate to get hold of my samples for her research, so hopefully squiz is right and agreeing is good karma for me or at least help for someone else in this situation in the future.
She said no aspirin - if there is no blood clotting issue her opinion is it can be detrimental to implantation.
So now we have to decide if we have the courage to pin our colours to the mast for one last try....

donttry I never cease to be amazed at how disjointed medical records can be. When I went to see private consultant (self-referred) she didn't have or ask for my notes but took a detailed history. I had to get a paper copy of the results from the blood tests taken at the GP to give to her. When I saw the NHS RMC clinic (referred by EPU) they had a massive 2 inch thick file of my obstetric notes (6 pregnancies has generated a lot of paper) and access to the GP system on the computer. They all seem to send reports back to the GP so presumably that ends up on my notes there. Prof Q didn't seem that interested but had spoken to Dr G so knew I'd already had all the standard tests, she was more concerned about the pattern of the losses. Hope you get it sorted in time for your appointment.

squiz where was your hol? I am off to sunny Wales soon. I went for the TABLET trial. The nurse was really nice. The results were negative - thanks for recommending it, it's one thing I can strike off the long list!

ilovemypyjamas let us know how the test go. Good luck with them. I hate the pity/awkwardness of others so I don't talk about it.

Nemo so sorry you are going through this. Very frustrating not to have an answer. Could you insist on a blood test (presumably it is to see if hcg levels have increased). Agree at 8 weeks you would expect to see the heartbeat although not always as e.g. if you had a certain shape uterus (inverted I think) you might not be able to see it just yet.

Baking that sounds really positive actually! She sounds great. Interesting about the aspirin. 40% chance in itself sounds quite good, not to mind 80%. Also sounds nice and lowtech IFYWIM - bit o'progesterone and dash o'steroid. The steroids are supposed to make you feel like a champion as well. Good luck with the decision.

I've calmed down about the medical records now and dried my tears. I spoke to the Fool consultant's (original consultant) secretary and she was a sensible sort who said she would call up the records and could fax off whatever they need.

I'm off work this week. Heaven. Hate work (not the work in itself so much but the mad hierarchies and the fact its such a bad fit for me). Need to be self-employed.

Morning all.

Glad yesterday seems to have gone well Tins. Sounds like they know their stuff. Interesting to hear about the aspirin as someone who had considered self medicating with it. Apologies if I've misunderstood anything (new to this and structural probs are 'my area') but did they do the biopsy there and then and was that to test for NK cells? And is NK cells a new area of interest that isn't really offered yet on nhs because its so new? Just interested and feel free to tell me to mind my own!

Donttry - it must be so irritating to feel all this info is held about you and if someone would just look the answer might be there. If it helps I work in a service which diagnoses neurological problems and the Consultants there are far bigger on taking a really comprehensive clinical history from someone and using that to guide specific hypothesis testing about what's wrong (which they might test by requesting specific bits of their file), rather than going through lots of other information about them which won't necessarily help. It's because they're really good and know what they're doing. I very much hope that what your experiencing is a sign of competence rather than poor admin. Enjoy your week off. There's nothing worse than a job you hate.

Squiz - thanks for the book suggestion. I ordered it immediately. Love the sound of uplifting stories.

Nemo - the wait is always horrible. I hope all ends up being ok.

Baking, so pleased that yesterday seems to have been so encouraging. I don't know about you, but it made me want to try again ;) I have been thinking about going to see Prof Q but I also have the October test at St Mary's. Given the 'Try within 3 months' thing, I wan to get the St Mary's results in (I think they will be clear - Ilovem, I was also able to persuade GP to order a range of tests after 2nd MC due to possible genetic issue on DH's side - was clear. I hope your's turn up something helpful/treatable!).
I'm now thinking about the aspirin - should I have been taking it at all? and the progesterone - did I start it too late?
Nemo - sorry you're going through such an upsetting time, hope it all works out.
Enjoy your holidays, ladies! xx

baking it really sounds like a worthwhile visit. It was interesting to hear that she said about aspirin being detrimental if you're taking it and don't need it, like Raj Rai - it seems to be some new research that has been completed but the info has been slow coming out.

Raj Rai also said about me taking progesterone from my BFP was too late and needed to be taken from ov time too. I feel a weird reassurance that they seem to be singing from the same hymn sheet.

So exciting that she gave you the green light to 'go for it' with the optimistic stats on your side too, fingers crossed you get the outcome you wish for.

Nemo hope things work out ok for you.

AFM I'm still waiting for bloody AF to appear after my MC, its getting quite ridiculous and I'm so frustrated with it and don't know what to do. I have time off work and my 2nd appt booked with Raj Rai in 2 weeks but they'll be no point in going if I've not had my AF by then as he needs to have my FSH results for the 2nd appt - ANY ideas to speed the witch up ladies??? I've done heaps of BD, reflexology, acupuncture and .......don't judge me.....I soak my feet in epsom salts daily (its meant to speed up blood flow in that region or some such twaddle!)

donttry I think the steroids that make you feel like a champion are anabolic steroids, this would be prednisolone, a corticosteroid, which makes you fat and bloated! In fact she said as it's for a short period (4-12 weeks of pregnancy) and most people feel sick then it's likely to make it difficult to sleep and make me irritable. There's an enzyme in the placenta that breaks it down so not much passes to baby, older steroids carried a small risk to baby of cleft lip but they don't think pred does.

Ilovem yes she does a "one stop shop" implantation clinic for people who are having recurrent miscarriage or recurrent IVF failure, where she does a history, ultrasound scan and takes the biopsy (thin tube put through your cervix to take a piece of womb lining, not really any worse than a smear test). They are looking for abnormal growth patterns of the stromal cells (which is what the progesterone treats) and high levels of NK cells (which is what the pred treats). NK cells is new and still controversial, there are a few people in London (Dr Shehata is the one I've heard of but there are others) and Profs Quenby and Brosens based in Coventry. It's not available on the NHS, it's still at a research stage. My NHS consultant said in 10 years it will probably be mainstream, but that's no use to me! The doctors in London seem to use mainly blood tests, but there is a lot of discussion about whether what is happening in the blood is relevant to what is happening in the uterine wall. They also use treatments like intralipid (a component of total parentral nutrition) and IVIG (some sort of immunoglobulin) which have to be given regularly as intravenous infusions and are even more controversial. I'm a long way from London, I wasn't prepared to go to the expense/hassle/stress of getting myself into lots of treatment there. Coventry is a one stop shop - she'll email me when results are ready, talk me through them on the phone then liase with local consultant to make sure I get the appropriate treatments done here.
I've had all the standard NHS tests which were normal, as they are in 50% of RMC cases, and tests on my latest miscarried foetus confirmed it had no genetic problems. The NHS said they can do no more.

justone I know how you feel about the aspirin/progesterone. I'm going to have difficulty forgiving myself for the babies I lost if it turns out this was all totally treatable, but you just act on the best information you have at the time, what else can you do? There seems to be so much that is unknown.

Polka must admit I am slightly ing at the image of you with your feet in a bucket, but afraid I have no useful suggestions. How long is it now? Did you have ERPC? That seems to sometimes mean it takes a while for cycle to kick back in. V frustrating for you.

baking sounds a really positive. The odds sound like they can only come up. And even the test helps in itself - sounds a real positive and caring centre. So glad you got so much from it.

don'ttrythis we went up to North Norfolk- was a great break. As were waiting for tests, there was no POAS or calculation BD - and lots of forbidden foods! Enjoy yours!