The down regulation scan that wasn’t

I am back from my down regulation appointment, apart from they should call it “down regulation” appointment because it wasn’t really a down regulation appointment after all. Confused? Yeah, me too.

My brain is fried on Zoladex and I just cannot sleep so you will have to forgive the turdness of my writing skillz today. Now I have had a little time to process the morning I think I am feeling okay about it all; I just need to tough out another week of extreme anxiety, insomnia, hot flushes and headaches. Also, if I EVER again say, “well at least I will know one way or the other tomorrow”, shoot me. Just shoot me dead.

I shall set the scene:

DOWN REGULATION APPOINTMENT – incl., mock transfer, endometrial scratch, consent forms etc (this is what it says on my appointment card).

I also just want to say that my clinic are lovely, really lovely. I feel a bit bad writing this, but it’s true and I want to, so umm, I guess I will.

NURSE: So you know why you are here today? We will take you through to the treatment room and the doctor will do your mock transfer and endometrial scratch.

ME: Do I need to be down regulated for that? When will I have the down regulation scan?

NURSE: You aren’t being down regulated.

ME: Yes I am.

NURSE: No you aren’t. We don’t do that anymore. We don’t do long protocols now.

ME: *deep breath* I’ve been down regulated on Zoladex since November, I am on a long protocol.

NURSE: Oh. checks notes. Ok, well your down regulation scan isn’t today, it is on Monday next week.

ME: Why does it say this is my down regulation appointment on my appointment card? It says in the information pack that the mock transfer and scratch take place at this appointment.

NURSE: Well we still call it the down regulation appointment because it used to be, but we don’t do those cycles anymore. We still call it the down regulation appointment though, we just kept the name.

Well that clears that up then.

The scratch and the transfer were easy peasy. Bit sharp, but if you’ve ever had endometriosis and/or a period in your life you’ll survive, trust me.

I then pay for my drugs and whisper to my husband, “they have prescribed me the wrong dose of stims and other drugs that I don’t need.” We have a hushed conversation in the waiting room about how unlikely it is that I would be prescribed the wrong drugs. Surely this is the one thing they know best? Although, technically I have been given a prescription for the pill 3 times incorrectly, which I have politely returned 3 times without filling… because I don’t need it, I am down regulating on Zoladex.

To cut a long story short, I was right. Sigh. I was given a credit note for the wrong drugs and the nurse is querying the stims dose with Dr Hero (who wasn’t in today).

I am so, so tired. Did I say that already? It sounds ridiculous, but I am struggling to stay awake for a whole day. I can’t think straight and I am still SO WORRIED that I haven’t down regulated properly again. Now I can add to that list that I am going to be on the wrong dose of stims. I am simultaneously panicking that it won’t all get checked out properly and I’ll end up on a lower dose then won’t get any eggs again, and also that I am pushing them into giving me a higher dose which will over stimulate me resulting in the cycle being cancelled. Stupid, I know.

They told me not to worry and that it’d be sorted out at my scan on Monday, but I can’t stop now. I think I am going to have to email them about the drugs and ask that a) is the lower dose an oversight, or intentional? b) if it is intentional, what is the rationale for lowering it given that I had already been told a different dose which was decided upon based on my previous IVF cycle and my AMH result. I feel like I need to know that my doctor has agreed this lower dose is the way forward before anything starts (he didn’t write the prescription).

I am so stressed I need to make a list of things I am worried about:

1. I have been given an incorrect prescription 4 times now.
2. I will be on a dose of stims that is too low because nobody read my notes properly and I won’t get any eggs.
3. I will be on a dose of stims that is too high because I’m kicking up a fuss and I’ll be over stimulated.
4. I’ve had two conflicting pieces of information about what dose I should be on and I don’t understand which one is right.
5. I won’t be down regulated so who gives a shit what dose of stims I am on.
6. I don’t know how I can do another week of down regulation. I feel like absolute shit.
7. I am supposed to be having a general anaesthetic, which is rare for egg collections. The nurse told me to keep reminding them because even if it’s written all over my notes they might forget. I am worried about this too.

I think there is more in there somewhere but that’ll do for now.

I’ll end on some bits of good news. It was hard for the doctor to see because my uterus is upside down, backwards, crap, shy, lying down etc but as far as he could tell the lining didn’t look thick. I had a scratch and my mock transfer was straightforward. If I do get pregnant again, this clinic provide progesterone support until 8 weeks so I won’t have to fight that little battle again.

So, back again on Monday for my actual down regulation scan, not today’s “down regulation” scan which wasn’t. It’s just called that. Nope, still doesn’t make any sense to me either.

Sorry guys, you will all need to get your lucky giraffes out, orange knickers and lucky onesies back on for me next week. Please and thank you. Surely nothing else can go wrong? Surely I will be able to start (the right dose, whatever that will be) of stims on Monday, surely? Surely? I’VE HAD ENOUGH OF THE WAITING AND SET BACKS NOW.

BB xx

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25 thoughts on “The down regulation scan that wasn’t

  1. mylifeasacasestudy

    Oh BB, I’m sorry you have to deal with these idiots! Thank goodness you are aware of what’s going on. Will forward “best wishes” to your forthcoming ‘real’ down regulation scan. XO

    Reply
    1. barrenbetty Post author

      Thanks! I shall bank them until next Monday. You know, I’m so glad I started a blog otherwise I wouldn’t know anything about anything right now and I’d be sailing off into another cycle with the wrong dose of stims, having paid for (non returnable!!) extra drugs I don’t need :/

      Reply
  2. redbluebird

    You should definitely contact them and ask all your medication questions! They owe you some reassurance and explanation. And that whole conversation with the nurse about the down regulation appointment completely confused me. Get it together, clinic

    Reply
    1. barrenbetty Post author

      That’s my feeling… If they are going to change the dose, fine, but they have to be able to explain why. A different doctor wrote it and I bet he just looked at my age and test results and wrote it based on those without reviewing my previous IVF cycle from the other clinic. I think it’s a mistake, but I really want to make sure they follow it up properly and check with MY doctor and MAKE HIM look at the notes properly. Yep, I am going to email them tomorrow. This is all going to be futile when I’m not down regulated on Monday anyway. Sigh.

      Reply
  3. Jenn

    Holy shit, dude! Are you SURE you like this RE clinic very much? There are so many red flags here it’s scary 😦 I know you like Dr. Hero a lot. But geez!

    Reply
    1. barrenbetty Post author

      They are all so nice! It is a worry though. It’s almost like nobody is ever reading my notes. Ever. I’m even more neurotic this time we are paying for everything (although the last round wasn’t free, it was cheaper). I feel bad when I question everything, but I think today’s little display has given me a bit more confidence to question them if I think they are wrong!!

      Reply
      1. Lisette

        I’m with Jenny. BB it’s crazy! They may be nice but they are fucking up bigtime. You are paying for it so they should be on top of their game. It’s not you being neurotic, we all would be the exact same. This shit is stressful and you need straight answers that you’re not getting. And on top of it you’re fucking paying for it! Ugh I feel so much for you hun. xxx

      2. barrenbetty Post author

        Thanks lovely! It always makes me feel better that other people think it’s not cool too. I never know whether it’s just me freaking out (again). I feel like I must bring some of it on myself… My cycles have all gone so wrong!!! The paying part is what is spurring me onto question everything… Even if I hate being the annoying, awkward, whinging patient :/

      3. GK

        You aren’t the annoying, awkward, whinging patient. You are the patient who is going through a stressful time and who deserves considerably better treatment than she is getting. I would present your doctor with the catalogue of errors that have happened so far in a short (non ranting) list and then explain that based on all the fuck ups to date you feel justified in questioning everything because they are obviously not reading you file correctly and than ask for a big warning note to be put on you file which alerts staff that you’re on an a-typical protocol and they need to READ THE FILE not just blindly follow standard routine! Good luck for Monday x

  4. aNeonPrincess

    I feel as though the doctor is the only one that ever really knows anything. Everyone else is just going off of a general script. I am constantly calling and emailing to clarify things. Good luck!

    Reply
    1. barrenbetty Post author

      You hit the nail on the head! I think the doctors are totally on it, but unfortunately the nurses and admin staff are all singing the same song. I think it’s a communication problem between the doctors and the nurses. We just need to remember it’s okay to keep questioning and to be our own advocate. Makes me feel like I am constantly complaining sometimes though!! :/

      Reply
  5. A Calm Persistence

    You have to remind them? That’s all crazy.. I can see why you’re worried. So sorry you have to worry about all of this on top of everything else. I am hoping for no more set backs, certainly you’ve had enough shit to deal with lately. Good luck!

    Reply
    1. barrenbetty Post author

      Yeah, that peed me off a bit. I’m going to look like such an annoying freak reminding them at every scan that I probably need my egg collection with a general. Oh well, I fear I have that reputation already!! I’m hoping that’s it now and it can all be plain sailing from now on…

      Reply
  6. Smile

    Yeah, I agree with the other ladies. I have never had any of these issues with my clinic (which has no bearing on it working, because it hasn’t) but I can see being uncomfortable about the staff other than the doctor being on top of things. And all the best of luck, I am impressed that you are staying calm with all of this confusion on top of the regular/insane stress levels that IVF brings!

    Reply
    1. barrenbetty Post author

      Yeah, like we need anymore worries!!! My doctor seems completely on it, but I think for some reason it’s not filtering down very well. Sigh. At least I am a mad, neurotic freak who spends hours online googling and therefore knows all the names of all the drugs and can spot when things look amiss!!

      Reply
  7. Fox

    It is really disturbing to me how many clinics seem to be moving towards one size fits all protocols. One size NEVER fits all – especially when you’re dealing with hormones. Keep fighting to get the correct treatment!

    Reply
    1. barrenbetty Post author

      So true.. I don’t get it. Surely everyone has different issues and needs different treatment?! I’m going to keep questioning everything, although I HATE being the annoying and awkward customer. At least I am developing a thick skin!!

      Reply
  8. gradualchanges

    it’s so messed up that we have to rely on them and they mess up so much! Way to go for being your own advocate. Don’t worry about their feelings. It they didn’t fuck up you wouldn’t have to check, check and check again to make sure. That said, try not to worry… impossible I know but at least do some slow breathing and make sure your body is not in panic mode…

    Reply
  9. Fertility Doll

    You remember what we said about all the little bumps along the way amounting to one big bump.. your baby.. keep strong missy!! Kick their asses and keep questioning everything. You’ve been through so much – you can get through this. I really wish I could kick them for you. Tell Dr Hero that you’re upset and maybe he’ll start paying attention more too. I’ll burn ALL the candles on Sunday night for you. ❤ x

    Reply

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