The shit and the fan

Well, I’ve had my scan. Instead of good news or terrible news I appear to just have Increasingly Bad News.

It is still alive, goodness knows why because it is not a normal size. It is not even a remotely normal size. No matter how much I stretch everything, there is no normal sizing going on. It doesn’t look like it is developing normally.

I don’t know what to say really. I’ve forgotten again what happened. The nurse found it incredibly difficult to get a decent, clear picture and therefore found it very difficult to measure. She thinks it is about 9mm now so it has grown a smidge. A tiny smidge isn’t good enough. For it to be viable it needed to have doubled its size, not grown 1.5mm in 7 days.

I have no idea why the heart is still going with such conviction if there is clearly something genetically wrong. Isn’t nature supposed to work that out for itself?

If they were pessimistic last time, I don’t have a word for what they are now. They can’t tell me it’s over yet because it is still alive. They have told me to go home and presume to miscarry. When I start bleeding, go to A&E. Oh, and by the way the follicles on your right ovary are growing massively so you are at risk of ovarian torsion. Have you been having a lot of pain? Yes? Well, if it becomes unbearable make sure to go to A&E or call an ambulance.

Great. So what are my next steps? Close monitoring? More scans on my dwindling foetus and ovarian torsion? Of course not, what kind of fool are you? Go home and wait for your 12 week scan. Well, that or an emergency trip via ambulance to the hospital. Oh, and expect the worst if you do reach your 12 week scan. Don’t get your hopes up, it doesn’t mean it’s good news if you don’t start bleeding before hand.

I have two words for that piece of advice. Fuck and That.

I am currently attempting to get an appointment with a private IVF doctor at a more local clinic. It is a farce beyond farce to keep traveling a 460 mile round trip. I want the following.

a) A second opinion on what’s going on. Why is it so small but with a proper, viable heartbeat? Can they test when I miscarry to find out what’s wrong? There ain’t no hope in hell of that happening at an NHS general hospital.

b) If the poor thing keeps limping on and stays alive but isn’t growing properly will I need to have an abortion? Again, if I do, I want that with an endometriosis/IVF specialist; someone who is keeping my future fertility and imminent IVF treatment in mind, not some general surgeon who is treating me like any other pleb who can just pop out and get impregnated again whenever they feel like it. My insides are in a bad enough condition already. I want someone taking proper care of it.

c) Do they need to monitor the size of my ovaries and follicles? I Do Not Want to lose one of my ovaries to ovarian torsion, especially considering my already diabolical fertility situation.

d) How long will they wait before officially deciding it isn’t viable and what happens next? How long until I can have IVF again?

e) What can they do about the endometriosis before the next round of IVF since it meddled so horrendously with this round, despite having 2 operations within the last year?

I think I had more questions before, but I’ve sort of forgotten them now. My main concern is that I want to manage this up front and know what is going on, even if it is bad news (which it will be, I’m not sure I want too many comments telling me it’s going to be okay. It’s not). I don’t want to leave it to chance and roll up for my 12 week scan to be told they have to kill the thing, or it died weeks ago. I want to sort it ASAP, preserve whatever shitty fertility I have left, and make sure that I am as ready as I can be to start again.

I had a feeling it wasn’t going to be great news. I don’t think it’s possible to be anything but when you have been so conditioned to expect the worst. I think the clinic should appreciate how painful and distressing uncertainty is and not just send me away to wait for something terrible to happen. The nurse told me today to “wish away time”. I AM NOT A MAGICIAN YOU STUPID FAT COW.

I had such a good post lined up in my head, but it fell out somewhere between the hospital and getting on the train. I might remember and offend you with it tomorrow.

Don’t throw things at me, but I am half planning to have a small glass of wine later and a takeaway pizza. Oh, and I really wanted to say thank you so much for all your lovely messages this week. I normally reply to all messages since the reason I started the blog was to find people such as yourselves and you know, converse. I’m sorry, I’m a lamo. I’ve basically just been hiding under a rock all week. Normal service shall resume asap, I promise.

Oh, and one final complaint. Pregnancy symptoms still? Really? Still this sick? Why exactly? Nothing is happening? Why am I so tired when it is doing no growing or anything normal? I appear to have the worst of all worlds, marvellous.

Final thank you to all my Twitter ladies for all the swear words of solidarity. I believe my husband will thank you also since you are bearing the brunt of my distress which would otherwise be directed at him.

BB xx

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50 thoughts on “The shit and the fan

  1. SubFertileChick

    I’m totally gutted for you hun, you know that. I also agree with everything you have said. You cannot sit this out until 12 weeks! You need help. Now. Go and see someone private and get them to answer every question you’ve written on here. Sending love & strength xxxxxx

    Reply
    1. barrenbetty Post author

      Thanks lovely xxx I was a mess yesterday, but feel like I have got my shit together a bit now. Don’t even feel so sad about the embie… Guess it’s better it bites the dust now rather than later down the line if something is wrong. I will shortly be bankrupt having to pay for more rounds of IVF but bleugh, no choice. I’ve written the mothership list of questions for my next scan and also next IVF consultant appointment so I’m all ready to go. So glad I’m not waiting 4-5 more weeks to be seen by anyone!!! xxx

      Reply
  2. Bachelor's button

    Oh that all sounds totally rubbish. I wish for you it would be otherwise. You deserve that small glass of wine. Waiting for the worst is hideous but I don’t know that there will be any more immediate answers. I hope you can find a local clinic to advise. Damn and blast. I had high hopes for you and also for (nuts in) May. This has not been a good few weeks for any of us. Kindest!

    Reply
    1. barrenbetty Post author

      Thank you! I’ve got another scan tomorrow at a different hospital so might have a bit more information then. Guess it just wasn’t meant to be this time 😦

      Reply
  3. viv

    hi betty
    i am so sorry you are going through this. this might sound terrible, but i hope this is all over as soon as possible so you can carry on and start on a new chance.
    This time last year I was pregnant and hopeful, but the embryo didnt develop properly and at 9 weeks it was confirmed it wast going to work out (though at 7.5 weeks it hadnt looked good either, it wasnt until 9 weeks I accepted it). I ended up with an ERPC at 10 weeks. I felt pregnant until a few days after, when my HCG returned towards normal. there is no end of shit things about having a miscarriage, and suffering tiredness and morning sickness for almost the whole first trimester with no baby at the end of it was one of them.
    unfotunately if there is a developmental problem the heart doesnt necessarily realise and stop. a family member had a loss earlier this year at 28 weeks. a scan at 8 weeks (because of spotting) showed a worryingly small embryo, at 12 weeks they were told it was ok, then at 20 weeks they were diagnosed as edwards syndrome. while they were offered a termination, they wanted to let nature takes its course and the baby held on till week 28. i’m really really hoping this doesnt happen to you, but thought you should be aware. everyone is different but i always prefer to prepare for the worst to protect myself from the heartache of hope. it’s so unfair that when going through IVF, even if you do get pregnant it just feels like “it’s not a no yet” rather than “yes”.
    this will be the worst thing you’ve gone through so far with IF. you will cry. uncontrollably. in front of strangers. you will remember every milestone of scan dates and due date. but a year on, while i’m sad it doesnt hurt as much anymore, and i’m hopeful about the future. just remember that you will get over this.
    in the short term, have that pizza and wine.
    viv x
    (i found your blog a few months ago while googling “down regging not working”. i also have endo which seems to be the cause of my infertility, and will need to inject my suprecur next time. i’m also following on twitter)

    Reply
    1. barrenbetty Post author

      Did you sniff suprecur too and it didn’t work? I never found a fellow non-down-regulationer!! Hello! Pissed me off royally when that didn’t work. Am I following you on Twitter too? I’ll have to see if i can check. That’s terrible about your family member… Definitely so so much worse to have a late loss like that, god I can’t even imagine. I’ve accepted this is over which has made me feel better today. I just want to get it sorted out and a plan for what I’m doing next.. Oh, and maybe go smash up my old clinic and poo all over their desks.

      Reply
      1. viv

        I sniffed suprecur, and while my hormones were non existent and ovaries quiet, I kept growing a lining. I really wasnt expecting it as sniffing has worked twice in the past. I had a cyst (possible endometrioma) that ruptured while down regging so maybe that screwed things up. I’ll start down regging next month by injecting and hope it works.

        To answer another question, I had to wait 3 months for my hormones to settle after the mmc before they then wanted me to have scans and all the blood tests again before ivf (in case the pregnancy changed anything). So it was 6 months before we could have our next go (unsuccessful fet).

        Last year with 2 weeks my SiL, BiL’s sister and I all fell pregnant. I lost mine at 10 weeks and then dreaded all family gatherings. Turns out I was the lucky one. One had the 28 week loss due to Edwards syndrome, and the other lost at 30 weeks from a Brain that didn’t develop properly.

        I’m glad you are feeling more accepting. There is nothing you can do to change the end result, so accepting what happens is going to cause you less pain. You will get another chance, and you will be a mummy one day.
        Xx

  4. rceg91109

    My heart is breaking for you. Last fall I was in a situation where I was in limbo for a while about whether a pregnancy would be in that elusive “viable” category (BTW, it wasn’t “viable” in the end…it was ectopic…emergency surgery to remove the thing plus my entire tube…). Anyway, my experience was different but I will never, ever forget those days of limbo, when they weren’t sure yet what was happening or why. It was pure hell on earth when they told me to just wait and see what happened, and to prepare to “manage the miscarriage.” What horrible wording. “Manage?” Really? Anyway, you CAN NOT wait until the 12 week mark to know what’s going on and what the impact will be! That’s completely ludicrous! I mean, I remember the waiting being hell from hour to hour, so even day to day is a LOOOONG ass time to wait when you are experiencing something like this, much less WEEKS like they are telling you right now. Besides, I know you have already been to hell and back just to get to this point in the first place. Keep fighting for more answers, sooner! You deserve it.

    Reply
    1. barrenbetty Post author

      Thanks for your message. I’m so sorry that happened to you… Sounds like a complete nightmare. The limbo is awful, especially when it is pretty much a foregone conclusion that the news is bad! I don’t feel like they have taken any care of my mental wellbeing whatsoever at this clinic. I think I’m pretty strong, I can deal with bad news, but this weird shitty inbetween news? No, I’m not doing that. I’m on a mission to get answers this week, no more blindly listening to medical professionals for me x

      Reply
  5. Kitten

    This is awful. 😦 I am so sorry to hear about the baby and the terrible treatment you are receiving at your current clinic. Making you wait until 12 weeks or until there is an emergency situation is barbaric and should be considered malpractice. I hope you are able to see the private doctor soon. Keeping you in my thoughts.

    Reply
    1. barrenbetty Post author

      Thank you. I’m attempting to get a new clinic today and I’ve booked a scan at a new clinic for Thursday… Sort of feel like it might be over by then and hopefully they can sort me out quickly. I’m tempted to complain about this clinic once it’s all over (and obviously after I have my sticky hands on a full copy of my medical notes!)

      Reply
  6. redbluebird

    I agree with everyone saying waiting until 12 weeks is completely ridiculous of them to suggest to you. I’d have a hard time waiting a day. I feel like they should be able to get a clear picture at this point, so I hope you find a better place to go to follow up with everything.
    I’m so, so sorry that this looks to have a shitty ending. I’m sad and angry for you. Eat pizza and drink wine. Yell at people. Hide from everyone. Do whatever you want. I’m thinking of you. 😦

    Reply
    1. barrenbetty Post author

      They are mental if they think I am waiting another 4-5 weeks!!! No. Way. I’m going to my GP this afternoon and hopefully she will refer me to the new clinic… I’m taking my husband for back up because I am slightly out of my mind today. Booked another scan too and intend to book more so that they can intervene ASAP.

      Reply
  7. elaaisa

    Im on my cellphone so not sure this comment will go through. Im really sorry to hear these bad news and it seemed that the people you crossed werent to good in comforting you. I hope your IVF doctor or another private doctor will be able to help more. Im sending a huge hug!

    Reply
    1. barrenbetty Post author

      Thanks lovely! I am on a mission to get a new clinic and doctor ASAP. I’m booking myself more scans elsewhere too so they can monitor me properly… I’m not waiting 4-5 weeks for a termination, no thanks.

      Reply
  8. lisaliteration

    This is just not fair. I am so sorry, and I hope there is someone out there in the medical field who is more sensitive and can help you figure out what is going on and get you some closure. I feel like my own experience with miscarriage doesn’t really compare, because I didn’t even make it to the first scan. But in maybe a smaller way, I know what it’s like to have that hope taken from you, and it effing sucks. It sucks waiting for things to take their course, it sucks waiting to try again. There’s nothing that can make this okay. But we’re here to listen and support you in whatever comes next. ❤

    Reply
    1. barrenbetty Post author

      Thanks so much, and I’m so sorry it’s happened to you to. It totally sucks. I’m trying to get referred to a new clinic today, and I’m having another scan somewhere else on Thursday so should hopefully have a better idea. I think I’m going to book myself a series of scans to keep an eye on my ovary and the foetus. There must become a point very soon where they can tell its not viable and I went them to be able to sort it out then, not in 4-5 weeks time. I’d quite like them to do tests on it to see if they can tell what is wrong with it, but I’m not sure I’ll be able to get them to do that. Thanks for you message x

      Reply
  9. dogsarentkids

    How can anyone expect you to “wait it out” until the 12-week mark? Are they mental? You will go batshit insane before that time comes. I agree with finding a specialist for a second opinion, like straight away. When you’re TTC, it’s all about waiting. And now? MORE WAITING.

    Reply
  10. hopefulandhungry

    I’m so sorry that you are going through this abyss of the unknown. I hope you get some clear answers one way or another, but I really hope it’s still good news. Take care as best you can.

    Reply
    1. barrenbetty Post author

      Thank you. I think I’ve given up on good news… I know they didn’t exactly give me much information, but it is just far too small for where it should be and not progressing properly. I don’t think there is anyway it can be viable, I just wish they would be honest with me and make the call when they can rather than leaving me to fend for myself when something terrible happens. I’m having another scan at a different clinic later this week so might be able to get some more answers then x

      Reply
  11. The infernal infertile

    Total. Utter. Bullshit.

    This is bullshit. Unfair, cruel, and devastating.

    I admire your strength at only having a glass of wine… I’d be heading for the whole bottle. While I didn’t have any warning about my miscarriage, after we got back from A&E I sat down, continued bawling my eyes out, and proceeded to get very, very drunk.

    There is nothing worse than having a miscarriage in a hospital A&E, it’s so impersonal and while you’re terrified and want immediate treatment, the priority they put on it is so low. When you talk to your specialist, talk about options for where you should go if it happens. If you can avoid an A&E you should do so at all costs.

    Total. Bullshit.

    Thinking of you, and sending you loads of supportive hugs xxxx

    Reply
    1. barrenbetty Post author

      Soon as I have full confirmation that this is actually over, I am getting DRUNK. Unfortunately having not had anything for so long, I fear a bottle of wine may kill me. I’ll give it a go anyway and report back. I plan on going shopping, getting drunk and going on holiday. And saying lots of swear words. I’m so sorry that happened to you, it’s just awful. I hate how much awful stuff has happened to everyone… I just wish we had an easier ride of it. I’ve made a huge list of questions for the clinic and having an abortion or D&C there rather than just at the normal hospital is one of them. Bleugh xxx

      Reply
  12. Fertility Doll

    If you can go private, I’d go private. The NHS just feel cold and clinical. You need someone who wants to help. I want to punch the nurse for you… what the hell was she thinking to tell you to wish away time? I hate the universe for being so cruel, I’m heartbroken for you.

    Reply
    1. barrenbetty Post author

      I know you have been scrapping with the NHS too… I’m glad I got my ops on the NHS cos they were pretty big ones considering it was just endo and would have been v expensive. Feel like it was worth a go with the people I’d been seeing there, but I’m sick of it now. Private treatment is so expensive, I’m probably going to bankrupt myself but what can you do?! Life is a fucking twat bag sometimes.

      Reply
  13. Steph Mignon

    BB – This sucks a fat one! I’m sorry you’re having to deal with the haphazard system, the waiting, the bs. I also agree that it’s strange that you’re plagued with so many symptoms still. This just shows how hard your body is fighting! It still seems like a cruel joke though to make you suffer double. As someone said before me the universe is a little biatch. If I ever meet him/her I’ll biatch slap’em for us!

    Reply
    1. barrenbetty Post author

      Yeah, biatch slap em! I do feel better today now I’ve accepted it’s not viable… Err, despite my clinic telling me the contrary. Pretty sure it’s physically impossible to be a viable pregnancy that I must also be prepared for the worst for. Nah. I’m going for a scan at a new clinic on Thursday afternoon this week… Kind of feel like it will be over then, and I’m going to see my doctor today so that they can refer me to the new clinic properly. I’m not taking no more shit from any of these fuckwits!

      Reply
  14. Isabelle

    It’s ridiculous that they told you about the possiblity of ovarian torsion but were not going to do anything about it? 😦 I’m so sorry for what you are going through. Just want to let you know that I’m thinking of you.

    Reply
  15. newtoivf

    This is so utterly heart breaking, I’m just so fucking sorry. I can’t believe the NHS can be so fucking horrendous to you. I wish I could offer more than swearwords and virtual hugs. I hope you’re able to get an appointment and answers ASAP. Sending so much love and hugs xxx

    Reply
    1. barrenbetty Post author

      I like swear words and virtual hugs! I am royally fucked off with everything today. I need to keep my pathetic head on though for trip to GP… Feel like I am more likely to get my own way with sadness and crying than with rage.

      Reply
      1. newtoivf

        yes, lots of crying….it gets you alot. I used this tactic alot when they messed up my paperwork and it got me through a lot of hurdles! Hope it went well today xxx

      2. barrenbetty Post author

        It worked A TREAT! You would have been proud. I was the perfect mixture of broken hearted sobbing and icy determination to get what I wanted… Although I did exclaim to my husband how good I had been at keeping my shit together during the appointment and he just looked at me with open mouthed horror like I had stripped naked in there and run around screaming. Whatever, got my own way. Everyone knows a good tantrum is best.

  16. missymakes

    Fuck, fuck, FUCK. I am so sorry, Betty. I think you’re right to find a nearby doctor you can trust. Even if it doesn’t turn up better news, maybe they’ll be more committed to getting you the answers you need and deserve. Also, that nurse who told you to “wish away time” should be fired immediately. What an asshole.

    Reply
    1. barrenbetty Post author

      Thanks man… I hate that nurse even more this morning!! I’m tempted once its all over (and I’ve safely secured a copy of my medical notes!!) of complaining about my treatment. I feel better today now I’ve accepted it’s not viable and I just want to make sure I get it sorted out sooner rather than later. Got an appt with my doctor later so that I can get referred to the new clinic. Can’t really be farced with starting again but guess I don’t have much of a choice!

      Reply
  17. bebeparler

    Betty I went through the exact same scenario last year and praying I’m not in for a repeat this time. It’s truly awful and what you are going through now is really the worst thing that can happen. So sorry you’re having to endure it and get rubbish advice from an insensitive and thoughtless nurse. Follow your gut instinct and seek advice elsewhere. You’re in my thoughts. X

    Reply
    1. barrenbetty Post author

      Urgh, I hate so bad how much awful stuff has happened to my fellow bloggers. Nobody gets it easy do they? I hope this is second time lucky for you!! I feel better in a way now I’ve accepted it’s over and I’m going to take control and move my ass to a new clinic.

      Reply
  18. IVFfervescent gal

    BB. I don’t have enough cuss words in my verbal arsenal to adequately express how fucked this all is (and that’s quite a thing, coming from a crude Aussie). Sending you love, hugs and vile obscenities from Bondi xx

    Reply
  19. lamentingthelentil

    FUCK. fuck fuck fuck. I’m so sorry, BB. I’m furious, for some reason, and also so so sorry. Apparently I have no words except obscenities and apologies. I’m sending you so much love, friend.

    Reply

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