I think, maybe, answers?

So far, the combination of mefenamic acid, paracetamol and tramadol works pretty well. I am not in much pain. There have been uncomfortable hours, here and there, but nothing nearly as fall-to-the-floor-horrible as previous cycles. I’m even prepared to go to work tomorrow morning. Is it a fluke? Is it a joke? Is it a visitation from Angelic Hosts? Only draw-back: as advertised on the box, tramadol makes me extremely sleepy. I nod off on the tube, now. I fall asleep face down into my dinner (salad, thank you for asking). I’m dozing off writing this. Every now and then my head jerks back and I go ‘wha? Wffst? Urgh?’ and start typing again.

So that’s one answer – how do we tame the Cute Ute and get her to just chillax, already? Knock her unconscious with scary addictive pain-killers. Yay!

Onwards to the follow-up visit to The Professor this afternoon.

Dragging my bleeding self across town was not too dreadful (despite nearly missing my stop and flinging myself through the closing tube doors going ‘aaaaaaaaaaaaaagh’ for the edification of my fellow passengers (see above for reasons wherefore)).

I found H near the hospital and let him steer me to the clinic. The nice receptionist warned us that there was a half-hour wait. Heigh-ho. For this we pay much much silver. I knitted, slowly and carefully, because I was dopey and there was an interesting possibility I might fall asleep into my half-a-sock and stab myself in the face. I peeped nosily at the other patients (‘but, but, she’s fatter than me!’) (nooo, I don’t have residual anger issues about the weight thing. Whatever made you think that?). I pestered H, who was being silent and anxious and had been refusing to admit he was anxious for days, until he got me water.

Meh. It’s a nicer waiting room than I’m used to. The seats are upholstered. But waiting is still very dreary.

Anyway, after exactly the promised half-hour delay, The Professor called us into her office, looking very full of good cheer, resemblance to Famous And Well-Loved Actress startling as ever. She had results to share with us, and we had questions to ask, and I was still one-third in la-la-land on tramadol, so I’m not sure I’m writing this down in the order in which it all occured. I shall have to get H to footnote it all in the comments. Anyway:

I asked about coeliac disease – Daisy the Commentator has mentioned it as worth looking in to. The Professor thinks if I’m really concerned I should get a referral to a gastroenterologist and have it checked out properly, but I have no indicative symptoms, so she doesn’t think it’s an issue. Possibly because I weigh *cough*many*cough* pounds and have beautifully behaved bowels when I’m not lavishly pouring opiates or prostaglandins into them.

Metformin. We asked about that, again, as everything I read or hear about it is wildly contradictory. She quoted some studies that metformin did increase ovulation in non-ovulatory patients with PCOS, but seemed to have no real effect either way on recurrent miscarriers. I ovulate au naturel these days and I am capable of losing weight solo as well, so she wouldn’t advise metformin for me.

As for the weight-loss, she was very pleased with me, and encouraged me to keep it up and see if I can get down to BMI 25 or under. (H has made a very pleasant low-carb stir-fry for dinner. Onwards).

We also discussed any possible further surgery for me, given that I am going to see the gynaecologists at The Hospital Out In The Country tomorrow (busy week, this) about the adenomyosis and anything else they’ve spotted in there. The Professor is of the opinion that we should leave Cute Ute strictly alone unless surgery is needed urgently. Anything exploratory or for shit and giggles (I’m pretty sure she phrased that differently) is not worth the risk, given that the plumbing seems to be in working order. She is also pretty sure that courses of lupron etc. would only be a waste of time at present. I am 35. I can get pregnant. Best leave well alone. And given that the new pain-killers make me feel almost functional, I think I shall leave well alone for a while longer. Unless the HOITC lot have spotted an Alien in there. Or the forceps they couldn’t account for after my last lap [joke!] [At least, I hope it's a joke].

Now for my blood test results.

Negative for Prothrombin Factor II mutation. Negative for Factor V Leiden mutation. Negative for MTHFR. I am immune to Rubella. Negative for APS/APLS. Oh, um, good?

And then there were my AMH results. She gave me a little print-out which included what would be very low, low, satisfactory and optimal results for comparison, and I got a result of 31.95 pmol/l. Anything above 15.7 is ‘satisfactory’, above 28.6 ‘optimal’. My God. Satsuma is a fresh-faced little superstar. Readings over 48.5 indicate PCOS or possibly even ovarian tumours, so I assume this lovely number means Satsuma isn’t in the throes of decorating herself with a double-thick layer of cysts after all. Well, we were assuming that already because she was ovulating so startlingly often. She’s a reformed ovary, indeed she is. Thank fuck. I was worried sick she was conking out and I’d have about three weeks of ovarian function left before she exploded in a puff of ashes. I shall stop freaking out about being 35 at once.

The Professor then turned to the TEG (thrombo-elastogram) and fibrinolytic tests. These are the ones the NHS does not do. And, lo and behold, I do, after all, have a clotting issue. My TEG result was elevated, ie even non-pregnant I am more likely to make a big fat blood-clot, and my fibrinolytic results indicated that my blood-clots take longer to disperse than usual. Neither is a risk factor for my everyday life (though does this explain the exceedingly icky clotty nature of my periods?), but when it comes to trying to establish a placenta… Well, damn me blue and call me Captain Obvious, but there’s a good old-fashioned point-a-finger cause of recurrent early miscarriages for you.

But, but but but, there’s a simple treatment. I go forth and buy some low-dose aspirin (apparently nice and cheap if you ask your Friendly Local Pharmacist). I start testing for pregnancy on the eleventh day post-ovulation with my super-sensitive tests. I see a second line, I start taking 150 mg a day of aspirin and I call The Professor immediately for a follow-up TEG and fibrinolysis test. If I still look clotty, I can have some low-molecular-weight heparin to stab myself with too (Lovenox, to you Statesiders). For (hopefully) nine whole months.

And yes, H and I are cleared to start banging each other sans goalie again.

I trundled slowly all the way home again, made myself a cup of tea, checked the clock to see when my next dose of tramadol was due, took my shoes off, sat down, and promptly burst into tears. Happy, relieved tears. Yes, OK, it sucks to have stupid clotty blood that clots and killed off five probably perfectly lovely embryos. But having an answer, a reason, a treatable reason why this keeps happening (also, bonus, a functional ovary in good nick), oh, God, the relief.

Not being a tomfool ‘nana-brain, I know this is all no guarantee of anything. I have PCOS, Satsuma could go on strike anyway, because she just bloody feels like it. I might not start the aspirin in time. I might not get the heparin in time. I might miscarry for a whole ‘nother reason (common-or-garden genetic mince, for example, which probably causes most ‘one-off’ miscarriages).

But suddenly, painfully, like blood running back into a foot that you’ve sat on until it went numb, I feel hopeful, for the first time in a long time.

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39 responses to “I think, maybe, answers?

  • Allison

    An answer, an answer!!! Oh May…!!! I know it doesn’t make things any easier, but by GOLLY, having something to blame and potentially treat is phenomenal!

    Go forth and bang and take that aspirin! And if needles are necessary, well, they won’t hurt nearly as badly as the pain you’ve been in for so long.

    I’m on a daily low-dose of aspirin for my one-copy MTHFR; it is supremely cheap and small.

    And YAY for finding some combination of drugs that helps with the pain. I’d rather be sleepy than curled on the floor waiting for my uterus to devour the rest of me – which I think shall happen sooner or later…

  • Betty M

    Yippee! A reason and a treatment and a stellar AMH. Yippee!

    I suggest the enteric coated low dose aspirin – marginally more expensive but better for the insides. Also i was told helps reduce risk of pre eclampsia too so a winner of a simple cheap drug.

  • a

    Well, if it’s helpful, that was pretty much my protocol (minus the extra aspirin {only one per day} and with plain old heparin twice a day). As we have discussed previously, I have an exceedingly disrespectful 3 year old to show for it. Hurray for a PLAN! And those subcutaneous shots are no big deal…

    Also, congratulations on finding a worthwhile drug cocktail. I can’t imagine being immobilised by pain every month. That would make me very angry.

  • Hairy Farmer Family

    LOVE THIS POST!
    LOVE THIS POST!
    LOVE THIS POST!
    *pause to run in small circles*
    LOVE THIS POST!

    (Except for pain. Booo, Pain!)

    Treatable condition: Ohhhhh, how we love thee. And how we wish you had been diagnosed before!

    I shall give you a few day’s worth of my heparin (in pre-loaded disposable syringes!) for emergency use. It’s sat there in 3 massive boxes, and I am too shit-scared to jab myself with it. I am supposed to be seeing GP for another month’s supply, but I will not even look at it currently. (In fact, after this news, I am thinking about asking my pharmacist for the aspirin instead. And my Consultant for TEG and fibrinolytic tests, because I’m now a little bemused about how I scored prophylactic heparin without ‘em.)

    You are not allowed any genetic-mince type disasters, May. You just aren’t. I will not bloody permit it. I will kick the shins of the God you don’t believe in, lobby the Government you despise AND stamp my foot: it shall not happen.

    Go forth and… well. Go forth. Do Stuff. Do Stuff Wildly.

    And if you’re stopping with me next week, I’ll make damn sure Harry doesn’t come visiting before breakfast!

  • arminta

    May, this is almost exactly my protocol (2 baby aspirin, or 176 mg) + Heparin). I noticed a difference in my clotty periods and PAINFUL cramps within a couple of cycles on the double aspirin (where I didn’t on the single 88mg one). Also, after six losses I am quite pregnant with what looks like is going to be a bring home baby on this protocol… Now, I did do the metformin during 1st trimester, but I am VERY PCOS’y and had elevated insulin and the like.

    I’m so glad the professor was able to help get you in the right direction towards a diagnosis & treatment!!!

  • MFA Mama

    YAAAAAY! In the absence of health, I always wish my friends “treatable problems!” and since you’re bent on being bloody-minded about your health (har) I like that this is treatable! LOVE it, in fact, and YAY for sharing injectable drugs with friends ;)

  • QoB

    Treatable! We love treatable. Oh, I’m hoping this good news turns into more good news.

  • Ben Warsop

    Oh.

    Let me know when I can breathe again, eh? And uncross my fingers?

    xxx to you both.

  • Jem

    Wow!

    Answers. AND all your test results. In one place. At one time. With an intelligent and thoughtful Professor to synthesize and deliver the answers.

    Again. Wow.

  • Cathy

    Oh May – nice news- if abnormal results can be called nice
    Best wishes from a (fertile) lurker.
    Are you still seeing the acupuncturist? She sounded good.

  • Rachel

    I read this post and smiled. I am so, so glad that they have found a reasonable, treatable explanation. Here’s to hoping Satsuma behaves very well indeed, and you can try this new course of treatment very, very soon.

    It may be a silly question, but I was put on low-dose aspirin from the moment we started cycling. Is there any reason not to start it pre-positive pee stick?

  • L.

    Oh, May, I’m so glad for you. Just thrilled to bits, actually, and relieved, and hopeful for your future. And just … aspirin, really, most of the time? Amazing!

    It sort of intuitively makes sense, in my don’t-actually-know-anything-medical-about-it-layman’s world, that being extra clotty would make periods hurt like the dickens. It would just be icing on the cake if you found that aspirin lessened the pain, too.

    I will take a moment to shoot a fleeting growl in the direction of all those people and institutions who failed to hear you and run these tests earlier, or make it possible for you to have them run. Grrr.

  • Erica Douglas

    Oh, I am so glad you finally have some good news. My gyn (who’s now my IVF doc too) put me on low-dose baby aspirin nearly two years ago ‘just in case.’ I bleed pretty easily now (papercuts, mosquito bites, etc) but it’s such a simple, cheap, safe treatment.

    And I am SO SO glad that you’ve found some pain relief that works!

  • May

    Well, HALLE- fuckin’-LUJAH.

    And this from an atheist. Praise the
    lawd!

  • Starling

    Must delurk to say HOORAY for answers, and possibilities, and no goalies. About time all these trips and tests turned up something good – I’m very pleased for you both!

  • serverwench

    *delurks to happy dance!* Happy double w00tz on having a diagnosis and a plan! *relurks*

  • manapan

    An answer! Hallelujah! The low-dose aspirin are very small and cheap. I get mine 100 for $4. If you have the chance and the curiosity, you should check out your red blood cells under a microscope after you start taking the aspirin. They get all spiky; it’s pretty awesome to a dork like me.

  • Teuchter

    This is bloody fantastic.
    Yaay – and other positive noises.

    Send that goalie back to the changing rooms pronto!

  • Claire

    Cool! Am glad that you have answers!

    I’m a Coeliac (well I came off gluten before they could test for it but I do have it!) and was super big (300 pounds). So weight has nothing to do with it. I just avoided bread and ate chocolate! Some docs are a bit blind to this. Also some Coeliacs have no symptoms at all. So why not get a test as well? It’s just a blood test initially. Don’t give up gluten though before the test (like I did) because then it won’t show.

    Claire x

  • Amy P

    Argh, it ate my thing. I shall have to re-puncuate.

    *boing*

  • Amy P

    *inserts a t*

  • Lilian

    I like this post! Glad you have some answers at last. :)

  • The Sheila

    Yayyyyyy for you and H – fingers crossed that all your dreams start coming true soon!

  • Twangy

    Oh MY GOODNESS! This, THIS is what we HOPED FOR!

    An answer has descended glowing from Heaven and angels are singing!
    I am so pleased for you.

    And the tramadol – that is Quite The Breakthrough too. It’s a huge, massive quality of life issue, after all, having that kind of pain so often.

    !!!

    TG for Prof, and PROPER blood tests. Total validation of spilling the silver!

  • Phil

    This is a very positive outcome from your latest visit to the esteemed professor.
    If something simple and cheap as aspirin works hooray. If you need to shoot up to keep everything under control then, oh well, at times it can be a pain in the behind (though how much does depend on where you’re doing the injecting…)

  • womb for improvement

    Aspirin *bangs head on table*

    So simple, so brilliant, so heartbreaking that the NHS couldn’t get there.

    Keep at it girl.

  • lizvelrene

    GREAT NEWS YAY! An identified problem, and treatable = Doubleplusgood.

  • Valery

    And also: yay for all the negative tests, because that is good news too. yay for Professor being very pleased with less pounds. She did shift the goal, didn’t she? Would you have smaller size clothes left? Then it would be handy to shrink into those, so that when the miracle happens you don’t have to jinx it but just get back the other sizes… Sorry for mumbling about wardrobes, just thinking that by the time I get back from holiday 11 days have past and and and well, who knows what happens in the mean time. It seems almost inevitable now. (hating myself for being jealous already, I’ll go pack my bags now)
    hugs

  • nh

    Hurrah, hurrah, hurrah.
    I’ll keep my fingers crossed that the hope continues and that you have positive things to celebrate soon.

  • everydaystrange

    You have an answer.

    Answers are fabulous.

    Also fabulous? The tone in this post. It’s lovely to see you, May.

  • The cheerleader

    An answer. A treatable answer. This is fantastic, after all the years of up hill climbing there has to be a missing-the-top-step feeling of unreality to this. So simple after all you have been through. Does this mean the diet can be ditched and you can celebrate with cake?

    I have taken 100mg of asprin every day this pregnancy, my obstetrician suggested it at the first appointment (5 weeks) ‘just incase’ because of my previous miscarriage as it ‘couldn’t do any harm’. My delight at your good news is somewhat warped by a realisation of what might have been if someone had done this for you. Don’t think about Cheerleader, don’t think about it…breathe.

    I’m delighted for you both and praying for even better news soon.

    C x

  • Hannah

    Oh May, reason to hope and a plan are such lovely things. I am keeping all my bits crossed for you and H. My well wishes for you are beyond words.

  • Nina

    OH. MY. GOD!!!! I leave for a week and all this happens? WTF? I’m so glad you finally have some answers. I broke out in to the biggest grin over here! All available appendages crossed for you until further notice.

  • Andie

    Hi May,

    I have been lurking on your blog on and off for a while and I am really really glad that they found the answer for you! Hurrah!

    I am wondering if you can help me out. I am in the same situation as you. I had a TEG in 2007 but my doc never discussed the results with me therefore I assumed it was normal. I have looked at the results myself, but with no reference ranges I have struggled to determine whether everthing is fine or not. Do you know what the results should be?

    I ask as I have the same icky-AF issue that you have, which only started after my first MC. Am wondering if this could be another piece of my puzzle.

  • piquantmolly

    Late to the party, but just wanted to say — “Well fuck me, an answer!” AWESOME!

    Now let’s get this show on the road!

  • Daisy

    Fantabulous news, am so happy for you! And yes, to second Claire, I too am coeliac and had few visible symptoms, was never underweight or constantly running to the loo, and only went to get tested to prove to my mum (she has it and it’s fairly hereditary in women) that I was NOT a coeliac ….. anywaaaaaay, that one backfired on me as I had the full endoscopy test and my small intestine (TMI? oh well..) was clearly poorly. It’s great that you’ve got a really clear lead on what to try next but like Claire says, even the professionals can be a bit muddy on coeliac disease so maybe file it in a very small drawer in the back of your head somewhere.
    Happy happy happy!! xx

  • Solnushka

    An identifiable problem with a clear treatment? Go the Prof, who is clearly worth the money. And obviously I’m a bit late to the party, but happy shagging!

  • So what the futility happened? | Nuts in May

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