The day comes when they have to declare

I hopped nervously onto the scales this morning, and noted grimly that I had gained Shriek! pounds over Christmas. (There are three Imperial Groans in a Shriek, and roughly two Shrieks to the Ululation. 4 Ululations to the Shitload. I reckon a Groan = 2lbs.)

I’d half expected to gain more: my eating has been pretty profligate since *thinks* well, since Harry became poorly with ‘flu in the middle of December, I suppose. I become, under stress, a person with alarmingly embiggened food entitlement issues. As the ever-inspiring Cecily said recently, it’s easy to slip into “I deserve” behaviour. And it really is soooo, so sweet and easy when there’s festive biscuits, chocolate and cheese under your nose, morning, noon and – literally, because I spent a lot of ’em awake in December – night.

Stepping off the scales, I started furiously planning my assault on Mount Weight. Againagainagain. John has been nagging me to cancel my gym membership, as I’ve not been since I returned to part-time work back at the end of summer, and I was feeling grimly satisfied that I’d continued my haemorrhage of £30 a month for bugger all, after all. I was busily calculating how long it might take me to get back down to 13 stone (an Ululation+a Shriek away and my self-imposed maximum weight for beginning a pregnancy -or I will end up trampling on my own boobs when I walk waddle at the end of it) when it dawned on me that my reptile hindbrain is running (figuratively. Even my inner lizard feels podgy) before my higher thought processes have finished deciding whether to walk or not. Againagainagain. 

 Here’s the thing: Nice Consultant, having had a damn good rummage about in my innards, peered closely at everything, blitzed a wee bit of endometriosis on my left uterus, performed a polypectomy (benign) in my right uterus (that was the ‘synechia’ seen on scan, I expect and hope) and taken two biopsies that came back showing proliferative endometrium with no sign of atypia (the letter said atopia, mind you) has pronounced the Harry-Housed Uterus Of Doom, attached to my one decent-ish ovary, fit for purpose – and would like us ‘to try for a baby now.’

I stared miserably at her, sat in the plush surroundings of the local private hospital (as the NHS kindly gave me a surgery follow-up appointment in late March) and tried my best to explain to her why I have such deep-rooted misgivings. I am darkly convinced that the blood supply to my right uterus is borked. I’ve never, in the 25 years I’ve been suffering this shit, had a proper bleed from that uterus, pregnancy excepted; primordial brown-black gunk is all I ever get. (That thud you just heard was likely my father slamming the laptop lid shut in hasty recoil, btw.) My right-uterus pregnancy with Harry was successful only in that he survived with what appears to be very minimal brain damage. I started spotting at 9 weeks, and had increasingly heavy episodes of bleeding every few days, eventually accompanied by contractions. His heartbeat on the doppler was terrifying to listen to, because, every couple of hours (I spent a lot of time listening. A lot.) it would stutter, hiccup, and decrease from its gallop to a throttled set of slow – very, very slow – thuds. It was a while before Harry obliged me (and vindicated my slew of worried phone calls to my midwife – ‘your own abdominal sounds, I expect, dear’) by performing this particular trick in the presence of medical equipment operated by someone with an MD, but when he finally did, Consultants Were Urgently Summoned. Ultrasounds Were Ordered, Stat.

I had over 20 scans during my 33 week pregnancy with Harry, and was in and out of hospital like a fiddler’s elbow, but at no point was a cord or placental abnormality spotted, and I wish I’d had the presence of mind to ask for my placenta to be properly examined after birth. Harry gradually fell away from the growth charts, and was born with symmetrical IUGR. He became very unstable shortly after birth, required fully ventilating, and had atypical seizures accompanied by massive desaturations in NICU. He did not, evidently, manage to dodge all the bullets. But you know all this.

I blame my right uterus. I blame the crappy endometrium. I blame my faulty housing. It seems so inescapable to me that evidence indicative of a poorly oxygenated child, added to evidence indicative of a poorly oxygenated uterus, should equal CONCLUSION in the eyes of the medical world. How is it just me that thinks this?

And it is just me, you see. Everyone around me thinks I’m wrong about the uterus, and I am marooned by my fears, painted into a corner alone, bleakly conspicuous as the one who is expected to do all the bleeding if I am right and they are wrong, and it all goes totally tits. I am defensive, bewildered and afraid.

John has never shared my view of Right’s poor performance, stoutly citing the tally of my 3 miscarriages in Left. As far as he is concerned: only one uterus has produced a living baby; quod erat demonstrandum.

VIP Consultant was of the opinion, when we last spoke, that Harry’s difficulties are probably co-incidental.

In response to my expressed worries, Nice Consultant reassuringly (in manner. Not, regrettably, in effect) told me that the biopsy on Right is clear, and that it was a ‘lovely looking uterus!’ before she began talking about aspirin and heparin therapy and those bloody awful progesterone lard torpedos. I didn’t have the mental wherewithal to ask her explicitly while I was there, but I suspect that she would not countenance performing an expensive and quite major procedure – IVF – when there is no medical evidence, apart from my dark forebodings and probably-brain-damaged son, that it is required. Ethically grey, I think.

And, as John does not forget to point out, I swore I’d never have IVF again, in any case. I responded inversely to downregulatory drugs and gonadotrophins half the time, and it was the hormonal shock of chemical menopause that started my pesky heart palpitations in the first place.

 Take your life in your own hands and what happens? A terrible thing: no one to blame. I am under no obligation to believe either my doctors or my husband – only pressure, of an oblique and partially self-imposed sort. If I let myself, and myself alone, take this risk – because I want another child – in the face of what I believe to be great danger, then how could I avoid great bitterness and blame to myself if my child is born severely brain damaged, or dies?

And then, of course, there is the fact that I appear to have some type of auto-immune or clotting disorder, which has, thus far, declined to be identified by blood test. My first-ever pregnancy went so very, very heart-beatingly well (right up until the point where it abruptly, unfortunately and probably-chromosomally didn’t)… and all my subsequent pregnancies have been distinctly troubled affairs, a fact which I brood upon, darkly.

I am having a lot of dark-brooding type thoughts all round, in fact, because I have a lot of reasons not to have another child. The chances of my carrying a baby to term are, we know, pretty much zero. My terror of prematurity is fairly profound. We’re not rich (and surrogacy, although a logical suggestion, is not the solution for me.) John and I are both sporting a shocking amount of grey hair lately. Harry’s behaviour, although in no way his fault, often puts our relationship under strain. Coping with a newborn as challenging as Harry, as well as looking after Harry himself, would be… an utter impossibility. My forebrain backs wildly away, waving frantic *jazz hands*.

I am firmly of the opinion that when the archaeologists dig me up in a few hundred years’ time, the fancy-pants futuristic bone-mineral-density-type scan they do of my skeleton will reveal a tree-ring of complete devastation caused to my frame by sleep-deprivation, fear and stress during that time of pregnancy and early motherhood. I dread future baby sleep-deprivation to my very marrow, because prem babies generally aren’t restful. With colic, reflux, hole-in-heart, alarming apnoeic-distress episodes at EVERY nappy change due to (what, with hindsight, was fairly sodding pronounced) sensory processing disorder, and it’s unsurprising I was so battered, that, on a couple of occasions I actually hallucinated, which was interesting and un-fun.

And, when Harry was 2 or 3 months old and breastfeeding for England every two hours, my immune system fell through the floor and I came down with the most God-awful illness; flu symptoms, multiple cold sores all over my lips, tongue and up my nose, searing 40 degree temperature… I can remember, for the first and only time in my life, wanting to die. I wasn’t remotely depressed: I just felt so spectacularly wretched in my very febrile state that I thought that I was, in actual fact, really dying, and as the inevitable was happening it might as well get a move on and stop prolonging the agony. And I couldn’t even get anyone else to have Harry, because by that stage, he was disdainfully refusing a bottle. Emptying stomach=hurts=MOAR BOOB, MUMMY! It was quite a low point, and I am pretty sure I said I’d never do it again.

I am so horribly distressed. Harry would, I think, love to have a sibling and I would likely grieve that loss of his in later life as much as my own. Being an only child has its own peculiar set of benefits and penalties. But I just can’t bring myself to step off the edge, and commit. Commit to that Right Uterus of Doom – as opposed to the Left Uterus of Slightly Higher Numerical Doom But Markedly Better Blood Supply. Everytime I try to think about it seriously, I have a nasty mental wobble, feel quite sick, start sweating and hastily push the whole idea right to the back of my brain.

The back of my brain, where the podgy reptile lives. Lizard Hindbrain has, without consultation with higher authority, ordered the repro-friendly vitamins that Nice Consultant demanded, in the loveliest possible way, we both take. (I thoroughly enjoyed John’s expression when she told him she expected him to take Well Man Conception vitamins, but my smile sank out of sight when I discovered these particular vits were £10 a month. Each!)  Plus, Hindbrain also ordered some easy-dosages of the low-dose aspirin that I am supposed to be taking already, and aren’t. Hindbrain has also had a major re-arrange of the bedroom over Christmas to facilitate the path of multiple night-time trips to the ensuite. Hindbrain has even managed – and this was quite clever of it, working unsupported – to book an IUI cycle, commencing February. And today, it seems, Hindbrain is keen for me to quickly lose some weight.

I am still bewildered. I am still afraid. I have experienced 6 months of clomid, 2 IUIs, 2 IVFs, 4 miscarriages, a stressful pregnancy, a premature and dangerous birth and serious worries, first, about Harry’s survival, and later, his health – and withstood it, as people generally do when they have to, because being entirely overwhelmed by events is seldom a valid post-Victorian option. 

I know what lies behind and I know what might lie ahead. And the ground I’m standing on right now looks pretty damn comfy, thanks. But I’m 36 next month, so it’s now, really now, or… not. There’s nothing to gain by waiting. Refusing to choose is also a choice.

For some people the day comes
when they have to declare the great Yes
or the great No. It’s clear at once who has the Yes
ready within him; and saying it,

he goes from honour to honour, strong in his conviction.
He who refuses does not repent. Asked again,
he’d still say no. Yet that no – the right no –
drags him down all his life.
CP Cavafy

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25 Responses

  1. Good luck with that decision…I know it’s a tough one. I also say, go with your gut and go left…um should you so choose.

    • Ahhh, I’ve explained things badly. My left uterus is attached to a very submissive ovary indeed, and I would require IVF in order to become pregnant there. John doesn’t want to pay for IVF, I am frightened of IVF drugs, and my Dr likely wouldn’t perform it at any rate. The left uterus is not, it seems, an option for me.

  2. Believe me, there are far worse tragedies in life than being OR bearing an only child…

    I hate to see you put yourself through this.

  3. That is one crappy set of choices. For what it’s worth, if I were in your shoes I would wait 6-12 months to see how Harry progresses at school. If his more challenging behaviours (and by that I don’t mean naughtiness) improve then you may feel more positive about being able to deal with another try at a pregnancy. In the meantime you can take your vitamins etc and lose the weight you are worried about.

    It’s a shame that attaching the good ovary to the better uterus isn’t one of your options, you may have felt more confident then.

    Cyber hugs because that is all I can do for you apart from hoping for the best.

    • Ovary transfer would suit the case beautifully, indeed!
      Harry is so much improved already, that we have very high hopes of the next few years’ worth of development for him. We COULD wait a bit longer, but I’ve buggered about for over a year just having this laparoscopy, and I can feel my eggs deteriorating like stink.

  4. What if you were to be on the aspirin therapy now? Would that affect the, er, brown-black gunk (hm, there’s that thud again) from Uterus of Doom? Perhaps the clotting disorder is tied in to all of this and all that’s necessary to de-doomify is a little blood thinner action.

    One can but hope, yes?

    This entire post reminds me of my own thoughts between live birth numbers one and two. And of course, all of my worrying and obsessing over what had gone wrong with live birth number one failed to repeat itself, and it was a completely new, freakishly rare, and utterly unexpected complication that nearly killed me and live birth number two. And yet here we all are, and we’re fine, so I have no regrets.

    It sounds like you are about to take a similar plunge. Good luck. We will be with you the whole way, all bits crossed.

    • I thought that about the aspririn as well, and did begin to half-heartedly take a few low-dose aspirin last month, but I was having to halve, then quarter standard tablets to get the right dose, and… meh. It was just all too much for poor little me to cope with, or even remember, cutting pills in half and then putting them out of sight/reach of Harry – and out of mind of me. When my proper-dosage stuff turns up, I may have more luck.

      I am certainly expecting to expect Different Kinds Of Crap.

      And I’m inexpressibly pleased about your outcomes!

  5. Hmmm… I probably understand this dilemma relatively well, having a Uterus of Doom that, well, behaves relatively similarly in terms of having a shoddy lining, and in terms of what comes out. However, I can be fairly confident that the blood supply to said Uterus of Doom is probably normal, seeing as I only ever had one to start with.

    In terms of complications – I face very similar ones. For example, miscarriage, IUGR, inadequate endometrium, placenta accreta and it’s even more horrible variants, premature birth, and all of its associated problems. And you know what, it scares the bejeezus out of me. It is a dilemma – do I put myself through that? Is it worth it? What if the baby dies? What if I die? What if the baby has horrendous hypoxia-associated problems and it’s ALL MY FAULT? And nobody, apart from me, seems to understand how scary it is (and you, obviously!). They all say “oh just try, it might be OK” and yes, it might be, but then again, it could equally not be, and it’s ME who will have to deal with that loss, that illness, that trauma. Not them.

    But then, I don’t have any children, so in a way, I suppose I have less to lose by trying.

    Hmmm… I’m not sure if this helps at all, except to say that I understand how scary it must be for you, and also that you’re not alone in this. Whatever decision you come to must be your decision, and must be whatever is right for you and John.

    Although only bearing one child is nothing to be ashamed of, at all. As Val says, there are far worse things than being an only child.

  6. Ah Ann, my heart goes out to you. I have a dark and horrible falling-down-the-liftshaft fear of pregnancy and scans myself – and my history is not remotely close to what you’ve gone through. It’s so frightening to go against your instinct and it’s so hard to tease out what is pure fear and what your “gut” is saying. Having said all that, it does feel better when you decide, and just sort of suspend disbelief and go for it. Leap of faith..? Life is a daring adventure..?
    Hmmm.

    Is there a middle way? I know freezing your eggs involves IVF drugs of doom, though it would buy some time.

    You’ll find your way, Ann. With you all the way. xx

  7. I have a question, and excuse me if I should already know the answer and feel free to tell me my Reading Comprehension skills need to be upgraded: if your left ovary is so borked (love that word), how is it that you have gotten pregnant in the left uterus a few times?
    Also, is it possible that with some weight loss that ovary may perk up?
    Given all the problems with Harry’s pregnancy, you may be followed much more closely in a subsequent one, and therefore not be so alone in advocating for yourself and any small humans residing in the uteri…

    I suppose what I’m trying to figure out is if the circumstances, the terms that currently constrain your choices to these ones, may not be immutable.

  8. I am so sad that this is where you find yourself at the beginning of what should be a bright and shiny new year for you all.

    I’ve always been a great believer in following my gut (which is not difficult as it leads the way by close to a Shitload using your calculations) but for some inexplicable and perverse reason I want to tell you to ignore yours and go for the prize. And the evidence you’ve presented against trying again is very compelling. And I’ve read it three or four times to try and see why the doctors are right and you may be…well, over-catastrophising. But I can’t, my interpretation in your place would be exactly the same.

    It is a dilemma that would test Solomon and I only wish I could come over there, sit down with a cup of tea (No Biscuits – No Explanation Needed) and give you the biggest of hugs. For what it’s worth (and that is probably a great deal less than a Biscuit) I’ve always found the things I didn’t do to be the things I most regret.

    I am so sorry that this is such a big part of the worry and distraction of your life. And, as Twangy says, we’re with you all the way

  9. We only started trying again for children when we knew we could face the inevitable loss. I am very lucky to have two happy and realitivly healthy boys, but the longing was always there and the fear, the mind searing fear that loved locked away inside. I hope that the universe is smiling

  10. I am sorry that it’s such a hard decision and that there is no good and restful way to turn. I am just adding my voice to the previous posters: I am the only child of an only child, and really the only (ha!) downsides for me have been being solely responsible for my parents as they age (but then there’s no guarantee a sibling would have pulled their weight anyway) and being completely horrified when my own two daughters were at the worst of their normal sibling conflicts, which I eventually got used to, of course, alien though it was. Whatever happens, please don’t think that being an only is second best. When I had my second daughter my mother in law said “You’re a proper family now”, and I have never forgotten how angry I was : ) Good luck with your decision and whatever follows, and thank you for sharing.

  11. Whatever you decide, and whatever happens, you need to remember two things:

    1) it was the best decision you could take in gordian knot of the circumstances and
    2) you do not know that the alternative would have been any better

    Seriously. We Are too prone to assuming that the road we didn’t take led through rolling pastures sprinkled with wild flowers and tinkling brooks and bouncing lambikins, and we fail to consider that it could have been shorter path to a longer drop in to deeper and smellier shit.

    So whatever choice you make and whatever outcome happens, know you made the best choice in the circumstances, and that you don’t in fact know if it was the wrong one.

    You poor girl.

    xxx

  12. On the lard torpedo issue, I got on much better with a type of progesterone that you are supposed to swallow (?), anyway, one with a gelatine coating that you have to pierce with a needle before insertion.

    No further advice to offer, only waves of sympathy of some variety.

  13. In my foolish way I had been blithely carrying on thinking that trying for another was a done deal but given your explanation I can now see that it just isn’t an easy decision to make. It is blisteringly searingly hard.

    I was thinking if you have an auto- immune thing (and these can come on in pregnancy itself and vanish after) isn’t it possible that that sodded up the placenta in some way ending up with the IUGR rather than the uterus itself and its possible dodgy lining? I say this as that’s how it was with my L when she ended up with IUGR and I ended up with pre-eclampsia. anyway I am for the constant taking of low dose aspirin. I favour the enteric coated stuff even though it’s not as cheap as the non coated stuff which is at a ludicrous 99p for 100 last time I looked but then I have been on it permanently since L was born.

    I would have thought that if the drs cold be persuaded that the ute of doom was such then IVF to ensure an embryo went back in the good ute would be ok. Seems a lot less ethically dodgy than some of the things that have gone through. in fact not at all dodgy. Those drugs though. Uggh.

    All I really want to say though is that I’ll be here supporting you whatever decision you take. X

  14. I get all sweaty and tense just contemplating all this for you. (Which is totally, utterly, completely, USELESS of me, I know). All I can do is do metaphorical hand-holding and much, much hoping that all will be well, and all will be well, and all manner of things will be well.

    Oh, Ann. Hugs.

    • Dammit, hit post prematurely.

      I meant to add, the thing is, with me and all my miscarriages, is that they all happened so early I feel free to keep trying and trying in the knowledge that no one will be hurt by my body’s failure (except me. And H) – I’ve never got to heartbeat stage, none of the embryos could have suffered anything at all. But I think if I was in your situation I would be literally PUNCHING people who weren’t taking my fears seriously, and I am very impressed with you that you haven’t done that yet. (Though if you did, I’d pay your bail for you).

  15. Even after a few days of thinking the question seems as knotty as it did when I first read your full explanation. You’re a spectacular writer and how it shows in this post: you’ve laid it out so clearly that I have nothing much to do except agonize along with you.

    So what does Nice Consultant have to say about the brown-black gunk? And what does she think caused the difficulties that Harry experienced in utero?

  16. Ann, this is an issue isn’t it? I agree that whatever you choose it will not be easy. I think it is human nature to second guess and wonder about the road not taken. I do wonder of the aspirin and heparin will improve the blood flow, that is what it is designed to do, but what a harrowing 9 months. A few months on aspirin may give you an idea if you will see an improvement, I saw a change when I started aspirin therapy myself and I have a clotting disorder. My periods were shorter, the blood was more red and less cramping. The change happened within a couple of months so hopefully you will know soon.
    But of course you have my support in whatever you decide to do, I cannot imagine trying to raise a little boy and think about a risky pregnancy at the same time. You are a very brave woman.

  17. oh lovely,
    I totally sympathise. After all the crap I went through trying to get pregnant and failing in various life threatening ways I remember having to have this kind of a conversation with myself. I came to the conclusion that I would give it one more go, and if I didn’t get a child I could not live with that kind of fear and misery again, and that was without all the things you have been through, or having a child already to throw into the mix.

    You are brave and resourceful and you must do what feels right for you and nobody else. Nobody else has to go through those long dark tea times of the soul with you after all, and they can be very long and very dark indeed.

    I am sorry I cannot offer a wonderful, magic wand type solution for you. But I am sending lots of love.xx

  18. What a wonderful writer you are. I kept taking notes as I read. Truly.

    I agree with the commenter above (Ben) who said, essentially, that you do the best with the information you have and your own desires and whatever hope you can muster. And then you leap. You will never know what would have happened had you not chosen whatever you will choose–or not choose (which is, as you correctly said, its own choice). We are all flawed and human, stumbling along. But let me add my voice to those saying we are with you. You are brilliant and brave. I only wish childbearing, and choosing to have more children, did not have to be so fraught and painful for you.

  19. […] to even think of attempting to find out) 90% of the bleeding, too. I conclude that the lovely Problem-Uterus May was correct, and that the aspirin has tickled things up in my right uterus no […]

  20. […] of infection. Consequently, it is looking more and more likely that the autoimmune disorder I already suspected I host, is viewing these placental fragments with intense horror and suspicion. Had it […]

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