Trying so hard to reserve judgement

I’m afraid this may not be one of the ‘thinky’ posts I so like to do, but more an update for those interested/concerned in how things are going with me. Feel free to disregard it if it doesn’t grab you (and goodness knows why it would – it’s far from positive – I’d rather it didn’t grab me, but hey, it’s my life and I can hardly duck out of it).

We had our appointment at the fertility clinic. Our expectations (as fuelled by a very positive meeting with an excellent endocrinologist) were thoroughly dashed. So at this stage we are still on a (very stressful (for me, anyway)) cliffhanger until calls tomorrow can begin to untangle exactly what went awry.

Husby (and others) has told me in no uncertain terms that there’s no point despairing just yet and that if I succumb to stress/pain/bewilderment at this stage, I’ll not be fit to fight the next round. Easy for him to say.

What we expected

  • We would see both a fertility doctor and the excellent endocrinologist
  • They would work together to decide a treatment plan which would get Husby back to himself and support the having of children
  • The alternative treatment plan would not be considered as we wish to have children
  • I would be examined to see if I had any underlying fertility problems which needed addressing, though none are anticipated
  • Husby’s treatment process would begin

What happened

  • The excellent endocrinologist was not available
  • The fertility doctor immediately dismissed the treatment plan recommended by the endocrinologist “Because your GP surgery would have to fund it and they won’t”
  • We were offered one treatment option – the one which will most likely (according to the endocrinologist, who knows about these things) irreversibly render Husby infertile
  • To allow some small chance of natural pregnancy, we were offered the chance of sperm storage (at our cost) and the possibility of IUI (8-16% chance of conception) or IVF (not a route we’re prepared to take, AND at our own cost, so it’s moot anyway) once I am 30 and qualify for funding
  • I was not examined but told, whilst sat IN the fertility doctor’s examining room, that I would need a referral from my GP before this could occur. At the fertility clinic. Where I was sitting.
  • We were told that the proposed treatment plan only ‘might’ render Husby infertile – a direct contradiction to what the endocrinologist told us.
  • Because of the sperm storage issue, Husby has to wait til February for another appointment at which he *might* begin treatment to improve his quality of life.
  • Because of the low quality of life (and energy and hormones) contributing to the sperm storage will be a major source of stress (mainly for Husby, but undoubtedly that will domino onto me) and as a result of that stress, any (already few enough) opportunities we might have for attempting to conceive will probably be severely compromised.
  • I will probably only ovulate twice more between now and the next appointment.

So we hardly spoke, came home and I went to bed for several hours. Then I cried a lot. Then I pulled myself together for a meeting, zombied through that and then came home and cried a lot more. My friends-and-relations rallied round and tried to deal with an un-responsive, crying lump of negativity, which was frankly all I was capable of. Husby tried to encourage me and somewhat succeeded.

And now we have an action plan of some phonecalls to get back in touch with the endocrinologist and express our extreme displeasure with the way the appointment went and see if she can’t pull some strings to get us expensive but non-axing-our-dreams-of-children treatment plan A. Especially seeing as she was SO for it. 

And I have to try to ready myself for the next round of struggling. I really thought/hoped/prayed that this appointment would be The Answer and it has proved the opposite.

If my phone was app-compatible and there was a ‘When you’re banging your head against a brick wall’ app, I would surely have downloaded it.

On the tiniest bit of a plus side, Husby and I have talked quite positively about the possibility of adopting a sibling group when it comes to adoption, as then they’d each have someone who’s remained consistent in their lives and we wouldn’t have to worry about trying to appropriately support an already-damaged child through the introduction of another damaged child. It would also mean not going through the adoption process twice, which (according to most sources) is the most stressful bit of all. We’ve had enough of stress.

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8 thoughts on “Trying so hard to reserve judgement

  1. Thanks for such a supportive response, Jane. I can't believe how you found out about Tilly! That's really unprofessional of them 😦

    We are thrilled that as of this afternoon, the excellent endocrinologist is also on side and will be contacting the fertility doctor to see WTH's going on and why the treatment options have been so drastically narrowed to a dumb one.

    We are continuing to look into adoption – I know there are kids with real needs here as well (though foster care is at least a better interim than an orphanage or baby home) and once we find a little more out about our timescale and fertility options, I daresay we will continue down that route. In fact, we definitely will at some point, whether we can have our own or not.

    I'm out from the duvet for today and gearing up for the next onslaught of news…here's hoping it's good this time.

    I expect I'll speak to you soon xXx

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  2. oh bloody hell!!!! so sorry hon ( that answers alot of questions i just asked you on Facebook! i would duvet dive and not come out as well!!! i hate the way our healthcare system is flippant and so often so throwaway about the things holding our hearts together! We found out about Tilly's diagnosis over the mobile phone!! when i became hysterical….yeah severe lifetime learning delay…no sleep….self harming….24/7 lifetime care (think i had the right to fall apart as we hadn't even thought Tilly had an issue at this point in life!) a very irritated doctor said .mrs george we dont all get to walk through life untouched like angels you know!!!!!

    so yeah….lets just pull your heart to pieces then throw you back to the world and say 'carry on'!

    honey your friends are right…it is not over yet….1 step and 1 desicion at a time!

    do look into adoption ( as well as following your fertility route!)…only this morning i went on the 'find a parent' website and saw 2 twin boys who i would bring home tomorrow…it said they had suffered injuries in early childhood (and i think they were only 3 as it was!) so there were some ongoing medical issues from that! OMG!!! can you imagine! There are kids like that right here to love as well. this is so not the end… in fact when you feel ok to come out from the duvet you have a world of options. Love and hugs xxxxxx

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  3. Thank you so much for your kind thoughts. I read about the peculiarities of the US system (was reading someone's rant the other day about doctors who were and weren't within their insurance remit and how much their bill had gone up as a result) and I am so grateful because if we had to pay for all the treatment and medication (especially as Husby's a type 1 diabetic into the bargain) we'd probably be in debtor's prison by now!

    Fortunately the endocrine doctor seems sensible and we're going to get back in touch with her – it's the fertility guy who seems to have a funding-heavy agenda. Hopefully the endocrinologist trumps him and can organise things much better.

    I'll try to keep my chin up (or as the current UK meme has it 'Keep Calm and Carry On') and start being as politely annoying as possible to get some decent answers. We've had a small success today, which is a boost – my GP is now on side.

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  4. Thank you (sadness is no excuse for poor grammar, right?). Things are looking a tiny, tiny bit more positive today now we have an action plan and are 'charging headlong' into trying to NOT let this be the way things remain. I daresay I'll keep everyone posted.

    Thank goodness for blogging – writing this stuff down really helps to organise the mind.

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  5. Oh, how frustrating the medical system is. I've heard that socialized medicine is not much better than the US's depending on how great an insurance plan you have is. Insurance is just as bad about bureaucratic red tape.

    I suppose the only thing I can say is “Keep your chin up.” When it comes to medicine you have to really be your own advocate and at times be annoying and demanding. If it's any consolation I wouldn't be here today had my mother listened to the advice of several doctors. She really had to go the extra mile to get anyone to listen to her about her own child's health issues.

    Worse case scenario you set up a little donation jar and fly yourself out for a visit with me and an endocrine doctor here. By pass all the red tape, I'd say. I've known of a few Canadians who've driven down just to not have to deal with GPs and that sort of thing and get to talk to a specialist.

    I'm afraid I'm not exactly the best person's shoulder to cry on, but if you ever need anything…there's always e-mail and Skype. My mom has a buddy in Cornwall she talks to periodically.

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  6. While I'm so very sorry that things didn't go as you'd hoped, I'm glad to hear you have such a good support group of friends and family to help you two through these difficult days. I was also glad to see that even in your frustration and disappointment, you can still rock some parentheses.
    Still praying.

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