Scared, nervous, petrified, worried...

all of them... All I can believe, really, is that I'm going to miscarry - Mr. Spouse alternates between denial (la, la, la) and saying "When you get big...". I'm still going to the loo 20 times a day, ten of them hormone related (what on earth would it be like if I had anything to put pressure on my bladder??!) and the other ten due to panicky knicker-checking. I still feel slightly nauseous some of the time, seem to have a heightened sense of smell, and have huge, painful boobs and some cramps. I'm terrified of:

exercise (last time I carried on jogging, but I've stopped this time, and I'm not sure about cycling or digging in the garden either, so I'm copping out)
stress at work (I'm sorely tempted to skive Monday and Tuesday, too, although I have meetings on Weds and Thurs)
sex (which hasn't been helped by having fairly low levels of lubrication, for some reason - I thought progesterone was supposed to increase this).
going too far from home (I think I only managed on Friday because I was already out of the house to go to the hospital)
food (I am not very well-informed on what is and isn't safe so spent ages in the supermarket agonising over some non-rinded goats' cheese which I'm pretty sure is OK)
drugs and even vitamins (I thought I should get some Omega-3 but the pregnancy ones came in huge, three-month, vastly expensive packets, so I thought of getting some non-pregnancy fish oils, and then panicked that they would be dangerous, so didn't get anything)
planning anything too far ahead (we are supposed to be booking our summer holidays - but have no idea what we will want to do or where we will want to go)

Basically I'm just terrified. I am assuming that, although I didn't miscarry on my own during the first pregnancy, I have turned into someone who does miscarry on their own. So I am just assuming I'm going to bleed before Friday, rather than have bad news on Friday (of course, I can't imagine I'll have good news on Friday). I'm sure it doesn't feel like this if you are a recurrent miscarrier who doesn't miscarry on their own, but I can't help feeling it would be better if a) I could go to the loo in peace, and less often and b) there was some chance they could do an ERPC and therefore a chromosomal analysis.

No scan

The registrar says they don’t do them at 5 weeks (and I am only 5 weeks today by the calendar, and probably 4w6 by when I ovulated – actually, now I think about it, I think I’ve only ever got pregnant on cycles when I ovulated a day or more late). She asked for blood tests – beta HcG (the nurse asked whether it was to be repeated, so it seems they do sometimes repeat them, but it isn’t – I also know that even some IVF clinics just do one), full blood count (in case the ENT doctor was right about me being anaemic – and if he was wrong, I’m to come off the extra iron), and clotting screen - she didn’t actually say why that one, but I am pretty sure it’s an online clotting test since some people have hyper clotting only during pregnancy. It was a bit strange actually to think that with all these pregnancies, no-one’s ever managed to do any tests during one of them.

She said she’d book me in again in 2 weeks for a scan. I thought about it for about 5 minutes while waiting for my blood tests and when she came back with the appointment request I asked if it could be brought forward, so it is next Friday instead. I have a feeling they don’t like to scan people unless they are then able to get a definitive answer, reasoning that an ambiguous scan may be worse than no scan. But I am not even sure that the pregnancy will last 2 more weeks, let alone my nerves.

Anyway, having arrived ultra-early, I left the hospital 7 minutes after my actual appointment time. Is this a world record? Then I got the train to where Mr. Spouse works, bought Lush products, had lunch with him, bought shoes for us both (our third wedding anniversary present to each other – leather, see?), and had a manicure. I’m so hard-working, me.

Don't tell...

I spent the day mainly sitting on the sofa, reading, watching telly, knitting, with a bit of surfing and also a bit of sewing thrown in. I even did some ironing. However I didn't tell work I was sick - I just checked my email and replied and said I was working from home. I still feel a bit crampy (not as bad as it was, but uncomfortable, and much better when I'm lying down) and stressed and really couldn't face people after the last two, very intense, days.

I'm fairly relaxed about tomorrow's appointment - I actually worked out even if I started bleeding now I couldn't bleed everything away by then (morbid? me?), and given how knackered I'm feeling (and, er, the fact that I did another test this afternoon and it was strongly positive) I doubt that's going to happen anyway. But I'm beginning to really hope they do a scan, even though last time they told me they don't scan at 5 weeks but do repeat blood tests (which would presumably mean going again on Monday... blurgh).

I was putting out some clothes for charity today that had been sitting waiting to be got rid of for several months. In among them were two vests with "secret support" from pregnancy no 1, over 2 years ago. I decided to keep them - I wore them in bed from about week 6 onwards, I seem to remember. Well, I need them now, so even if I just wear them till next week it might make me more comfortable. I don't think I have any lack of progesterone, somehow.

Edited: because I forgot to say that S, the work colleague who is adopting from overseas, was sitting next to me when I dashed out for the clinic phone call, and wanted to know who it was, and I couldn't resist telling her. She clearly hadn't been paying attention (and can you blame her) when I told her all my previous sagas because on hearing I had my first clinic appointment asked if I was 12 weeks. But now I'm wondering whether I should say "I promise not to talk about the pregnancy" to her. She's never managed to get pregnant, and was about to start IVF when they scanned her and found just one antral follicle. I know she finds this painful, but I'm not sure how she feels about another struggling person's pregnancy (as opposed to the irritating other staff we work with, who just have to drop their knickers, apparently).

Friday

My first appointment at the hospital. I told the nurse I'd only be 5 weeks and she said that was OK. Not sure if it was just a random timing, or last time there were none available in my 5th week, or if this was actually a systematic choice based on the timing of my previous losses.

Also not sure if they will scan me, or just do a blood test. Or what they'd see, if they did a scan.

Feast or famine

That's what it's like on this blog. I feel like I should post often as I might not get many opportunities to post-while-pregnant, just to annoy people.

Cramps: there are three kinds in my world.

Period pains: continual, more or less, and only start after the bleeding. Dull, achey, require painkillers.
Period-related-cramps: similar to period pains, but not continuous. Also dull, achey, and require painkillers. Occur before or during a period. Don't usually occur more than 2 or 3 days before a period.
Pregnancy-related-cramps: sharper, less painful, more like having a stitch in your side. Can also be felt in groin area. Can occur before a pregnancy but can also occur up to 7 days before a period. I don't think I've ever had them in a cycle when I couldn't have possibly been pregnant, and I also never got them before I was pregnant the first time, so I've put them down to either a) unsuccessful implantation or b) a now-slightly-stretched uterus reacting to progesterone.

I've been having type 2 (dull, achey) since about Thursday, but now type 3 (sharper, less painful) have kicked in too, and the proportion is increasing. So I'm in less pain and slightly less anxious that this is ending right now. The last couple of times I had no cramps in warning, only after bleeding, anyway.

Rang nurse. No-one there. Does this sound familiar? If I don't get an answer by about 4 p.m. I'll check with their admin office that she's actually in this week. I would quite like to know if they have any cramp-related advice. Or work-related advice. Or anything really. Interim compromise on the work trip is that I go, but drive myself so I can come home if I need to (I was planning on sharing a lift). Mr. Spouse suggested giving work the heads-up today but I'm not sure if I should tell them "not very well, waiting to hear back from hospital about whether they want to see me/me to go to bed" or wait till I do hear. Writing it down, I think possibly the former.

Nervous

Another positive test, stronger this time (First Response), at 4 a.m. I wasn't going to tell Mr. Spouse till normal getting-up time but I woke him getting back into bed so I blurted it out. He has forbidden me to do any more tests - and he doesn't know about the Friday one.

I would prefer just to curl up in bed and hide for the next week, but I'm not sure this is a good idea, and Mr. Spouse has forbidden it anyway. Unfortunately we have the most boring - but potentially argumentative - planning session ever with our department, lasting two days and taking place at a hotel about an hour from here. All the (numerous) men will get very drunk and ask why I'm not drinking. The women will congregate in the spa (which was my idea, originally) and ask why I'm not in the steam room. And it's kind of been suggested that it would be antisocial for me to book a massage. I am really not keen - I wasn't before, but now I'm afraid I'll start bleeding, and crying, while I'm there.

Still a little crampy, which I don't like. At all. But no bleeding or spotting. I'll ring the nurse tomorrow and ask about that (perhaps she'll tell me to go to bed? you think? no?) and also about doing a couple of blood tests, which they said they do sometimes do at 5 weeks.

Cupcakes

Both the ones we bought from the stall in the market today (mmm... Rocky Road, which was a kind of very thick dark chocolate with the walnuts and marshmallows, and Citrus, which had lemon curd inside it and lemon icing) and the one in the book I'm reading, A Piece of Cake, by Cupcake Brown. I have no idea why I feel the need to read this kind of book as they aren't even particularly representative of children who go through the care system/suffer abuse.

The cramps are slightly better (I didn't need any paracetemol today) and no bleeding as yet, so perhaps there is something in there. It doesn't seem very happy though. I have been trying to distract myself, so I've also been doing a bit of gardening type DIY, putting together a mini-greenhouse, with the help, and criticism (That's not straight! Here, hold this and let me do it.) of Mr. Spouse. He's the handyperson and I'm the gardener around here. But no heavy lifting, don't worry.

Oh look

Christmas uni holiday. Lots of R&R. Positive test last day of vacation. Stressful start of term. Miscarriage beginning of week 2.

Easter uni holiday. Lots of R&R. Positive test last day of vacation (i.e. today). You do the maths. But as it's only CD28 today and I actually think my period is due on CD29 by when I ovulated, and I have mega I'm-having-my-period-right-now cramps, I think this one is going to be a chemical pregnancy.

Still, at least I got to see where the second line should be on the cheapo dipstick tests. My only question is, do I still need to use pads if it's a chem as with a regular miscarriage, or can I go with tampons/mooncup?

Wrong, wrong, wrong

I found out on Easter Day that my friend, who is just a few days older than me, died last Wednesday. I have talked about her in the present tense several times and corrected myself, and likewise forgotten to correct myself, so I’m leaving that first sentence. She and her husband have two under-fives. She had stomach cancer, picked up when the younger one was 6 months old – she thought the exhaustion was just from being a new mother again. The older one started school in September. This is just wrong, beyond wrong.

There is a wake tonight and I am nearby, but not sure whether to go – the funeral is tomorrow, we had a long journey today and have a long one late tomorrow after what will no doubt be an emotionally harrowing afternoon. She is a friend from my old church, and was a large part of making me feel extremely welcome and making the place into a very tightly-knit community. There were only a few people that I got very close to, though, and she was one of them. She had a fairly late miscarriage before the first of their children, and was very comforting to me after my first miscarriage. And she was generally lovely, artistic, warm, welcoming, just a wonderful person. Even if she hadn’t been wonderful, this is just wrong, I tell you. Wrong, wrong, wrong.

How the other half lives

I think this is probably my first foray into private medicine, at least in the UK – in the US I had the sort of insurance that didn’t guarantee you a waiting room full of well-dressed City types, and on the NHS, especially where the RPL clinic is, you get a high proportion of scallies, and a low teeth-to-tattoo ratio. Think people who shouldn’t be wearing leggings, wearing them, and sitting outside the hospital smoking next to a) their baby and b) the No Smoking notice. Yes, I’m a snob.

The Small But Perfectly Formed Clinic is in the bowels of a London teaching hospital, in a mainly 19th century building, so there’s a limit to how posh it can be. But the open evening attendees were, as I say, not your usual gynae clientele.

Most of the talk was about IVF, with little acknowledgement that people might be there for other things, even though a couple of bright-eyed young things at the front asked about IUI during the questions section. The doctor giving the talk did acknowledge to us, though, that she should have talked about people with other needs, as they mentioned, though glossed over, what I think we might be most interested in – an ovarian reserve assessment. She also mentioned, as if it was the answer to ageing eggs, PGS, but she was honest enough to admit that our consultant was probably right, and it probably wouldn’t help us much.

Mr. Spouse says he doesn’t feel nearly as enthusiastic about adoption as he did before the last pregnancy, and I suspect his enthusiasm level isn’t high enough to start the process again at the moment – mine isn’t really, either, though I think it’s a little higher than his. It has also occurred to me that the next preparation course for our agency is probably in the summer, and they wouldn’t want us to do too many home study sessions before it, nor to leave too long a gap before starting again. So we will ring them when we get home and enquire, but not make definite moves to starting again. And I think we might book in for the ovarian reserve test.

I think I might need to compare how I’m feeling now to how I was feeling a year ago – because I suspect it’s the same. Feeling that I have no time, that the next month/six months are THE crucial months for both adoption and pregnancy, that if I put either one off even a little bit I will have missed the window, the perfect cycle, the perfect waiting child. I’m glad the consultant said what he said about my next year – I think I might need to learn to wait a bit more patiently, and to trust that a small amount of time is not going to make that much difference.

Today in the church year is Maundy Thursday – Jesus is all alone in the Garden of Gethsemane, and is very much about suffering, but I think also about trust – that not everything can happen immediately, or the way I want it to.

Apparently Normal

Well, you could have fooled me, but anyway Mr. Spouse was chuffed that his genetic analysis said that. So did mine. The consultant went through all the other results again - a couple of things are slightly quirky (apparently the mini-sacs on one ovary are not follicles, but something they can't quite explain found in 25% of healthy women, but if I had PCOS my hormone levels would be skewiff, and both ovaries would be about 3 times the size, and there is one blood test that is high and is found to be high in about 15% of RPL women as opposed to 5% of other women, but it doesn't make a difference to the outcome, and is usually linked to lupus or another immune problem, but I don't have any of the markers for those).

He reckons our chances with the next pregnancy are about 60%, which is good, as I was reckoning on 40-50%, and he says that given the signs, the next year should be fine for my fertility, and there isn't much difference between 41 and 40. Which is quite good, really, if I actually think about it, as so many other people seem to be saying "ooh, doom and gloom, pregnant past 40, forget it, it's the point of no return". He didn't think much to our suggestions of male factor and/or stress - there is an effect of both of these, but it's small compared to the effect of previous losses and of my age.

It's hard, though, to actually think about it. He did say that with no explanation for the miscarriages, I am in the best outcome group, and although we want to go along and be told a reason and that they can fix it, in fact we have a much better prognosis. But of course that's not what people (i.e. us) want. We want the magic wand and the crystal ball. Apparently about 25% of couples with RPL who come to the clinic don't try to get pregnant again. Since, by definition, you have to have got pregnant 3 times, it suggests you must have been keen to have children in the first place - so it says something that these couples don't try any more.

As for us? Well, I don't know. I don't think we'll be going for IVF. PGS is, as I suspected, a pointless exercise. He thinks it's a combination of the sample size and the willingness to get paid for treatments - not falsification of results, but the file drawer problem. If you'll get paid for doing a treatment, you don't publish the study that says there's no point in doing the treatment. He said there's a study soon to come out from Belgium or Holland saying that in a large population, prospective design there's no point in PGD for translocations, either. IVF with multiple embryos has no evidence to support it - and, given I'm relatively fertile and we would never countenance triplets, not much to recommend it for us, either.

This leaves trying again, and adoption. Try again now and put adoption on hold? Carry on trying vaguely while pursuing adoption? Have a break from trying and carry on with adoption? Just have a break? No idea. I feel like I should want to get on with something, but I'm not sure I really do - I thought I might be all gung-ho for one or the other, and maybe even wanting to ring the social worker before we go away, but I'm not sure I want to. But we are going to London on Weds and the land of Beer and Chocolate next week, so we will have a break from, well, from not doing very much work and feeling guilty about it.

Hospital yesterday, hospital tomorrow...

Went to have my ears looked at yesterday - because of ongoing dizziness - there is nothing wrong with them, apparently I am anaemic. I doubt it, but will ask the clinic tomorrow if this is a possibility.
Clinic tomorrow - have just been printing off abstracts to take with me and say "does this mean..." - I also found an article that said PGS does help with unexplained RPL. I find all this research published by people who might get paid for doing the therapies, on a piecework basis, against my deep-seated research-is-neutral biases. No-one pays me if they use the results of my findings, but those apocryphal "desperate couples" (i.e. us) are very likely to pay to go to a clinic that has published that therapy X may help someone in their situation. Fishy, I sometimes feel. Anyway I have two European articles and two US articles and both the US articles say PGD/S helps and one European article says it doesn't (and the other one is on risk factors).
I've been worrying more and more recently about my brother and the way he is (not) raising his daughters - posted for some advice on a forum I frequent - had some helpful and some not so helpful replies. Two people suggested my brother needs to "get some help", one of whom private-messaged me to ask if he was abusing my sister-in-law. I'm torn between "how dare she" and "yes, if she thought it might be happening, she should say something, even if she is way off and might well be projecting her own experiences". I replied with something slightly politer than the second.