Tumbling Through the Rabbit Hole...
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Post-consult thoughts

Posted by Haisla Sunday, 13 July 2014

So, I decided to take a couple of days to reflect and gather my thoughts after our consult with the doctor before sharing them on the internets.

I'm aware that most of my recent posts have been of the more depressing kind, and although I have received such kind and compassionate responses, I am a little sick of always using this blog as the site where I discharge my darkest musings.

So I thought I'd take some stock and try to express here some of my more reasoned and balanced reflections for once.. (we'll see how I'll fare with that!)

Firstly, let me say that as a result of our consult, an IVF doesn't appear to be in the cards for us any time soon just yet.

For some reason I had misheard the doctor the last time we saw him and was under the impression that in our area NHS dishes out 3 IUIs and one fresh one frozen cycle of IVF to infertile couples.

Well, turns out that I was wrong and we are in fact entitled to 4 rounds of IUI (M. had thought this was the case, but had been wary to contradict my certainty). It also turns out that NHS is rather reluctant to skip any of the lower intensity procedures, so we are stuck with two more IUIs for now. With a month's wait in-between. Plus any extra-curricular postponements and delays that seem to be the NHS's forte.

The good news is that for the next two rounds we'll be using injectables rather than the blessed Clomid that nearly gave me double vision. The doctor seemed rather concerned about that. Apparently it has something to do with the hormones in Clomid triggering the pituitary gland, which can then have an affect on one's sight(?). The injectables on the other hand directly affect the ovaries, bypassing the pituitary glad completely. So that's one positive that came out from this consult.

So, note to self, if Clomid gives you eye-symptoms, ask for injectables instead!

When I asked about my age and whether IVF would not be better option for someone over 35; the doc's answer (I really need to come up with a name for him - let's call him Dr Caterpillar, in reference to good old Alice's Adventures) was that NHS will do IVF treatments up to the age of 40. I was so shocked at this answer that didn't know what to say in response! So, they would be quite happy to make me wait till I was forty before offering me IVF. No urgency, no recognition of my 'advanced maternal age', no appreciation of my rapidly diminishing ovarian reserve or decline in egg quality. Sometimes the NHS just makes me sick!

Then came a discussion of my weight again. I'd been quite pleased as I'd managed to maintain my weight steadily at the just over 20 BMI mark all year and had been quite self-congratulatory about it. Well turns out that that's not quite good enough and Dr Caterpillar considers me a poor responder based on our second round of Clomid (only one follicle). A poor responder?! But I ovulate every single month on my own!!! How am I a poor responder? (I didn't actually say this out loud - there is something about receiving these treatments free of charge that makes me bite my tongue, in case they decide to take it all away.. despite that fact that I have paid my tax an national insurance for the past 15 years in this country and am well entitled to the treatments I am receiving..)

Anyway, he recommended that I try to gain more weight. Apparently fat not only helps us to keep warm, but also regulates hormones, and so the more fat (within reason i.e. below BMI 30) the better the response to medicated cycles, it would appear.

Ironically since that appointment I have been suffering from the runs for three days now (apologies for TMI!), so have managed to lose even more of the precious weight  that I'd so carefully maintained.

I'm torn. On one hand I want to do everything in my power to make these cycles successful, on the other hand I am so sick of trying to eat more than is natural to me for the purpose of gaining weight. I had to do it last year for the lap and it left me feeling miserable and physically ill. I'll do what I can to make sure that I eat hearty meals and have snacks in-between, but I am not going to drive myself nuts over this.

So, the next steps forward look something like this:

Try naturally this coming cycle since we are flying to Finland for a two week holiday and I will be ovulating whilst there. (Nurse Nelly was thrilled when she heard that we are going on holiday and gave us a little encouraging smile that no doubt meant to say 'hopefully I won't be seeing you again'. I was almost expecting her to add the cheerful 'just relax' adage, but she knew better than throw herself to the wolves like that).

In August when we're back my period should start fairly shortly after that. I am to call Nurse Nelly again, pick up injectables and start jabbing myself at CD2.

If this round is unsuccessful, then we'll have a month's break (as stipulated by NHS to 'try naturally') in September and return back for IUI#4 in October.

With this timeline I am not expecting us to reach IVF until December, perhaps even Jan - Feb 2015, depending on the spanners that no doubt will be thrown in the works by whatever administrative errors, ultrasound closures, doctor's holidays etc that the NHS may care to conjure up. I am just trying to be realistic with my expectations here, having had my hopes dashed so many times.

So here are the positives:
1. We're doing injectables rather than Clomid
2. According to Nurse Nelly injectables are better for the uterine lining, which is excellent news, since with Clomid mine seemed to remain on the thinly side
3. We get 4 rounds of IUIs - I should surely view this as a positive; more is better than less, no?
4. We are still due two rounds of IVF - fresh and frozen - should all else fail
5. We aren't offered 6 rounds of IUI as is the case in some boroughs - can you imagine that!!! With all the 'rest cycles' that amounts to bloody 12 months all in all. And for some that is not a choice. It is a set of hoops randomly selected by NHS for people to jump through before they get to do IVF.

The negatives:
1. I'll have to wait at least 5 more months until we get to do IVF (i.e. we will remain on the "kiddie coaster" even longer than expected - thanks to JCH4DCU at Four Years Later for that lovely metaphor! : )
2. I will be a few months shy of 36 when that happens
3. My eggs are withering - why doesn't the NHS care!!!??

The questions I didn't have the tenacity to ask:
1. We've had two rounds of IUI - why didn't they work? 1 egg + 1 sperm + 1 reasonable uterus is all that is required and as far as we know we had all the components in place. WTF?!
2. I am getting older, and somewhere deep in my psyche IUIs seem like a big waste of time. I ovulate every month, M's sperm's okay, we have timed intercourse - what is the difference? What is the point?
3. What if I'm a poor responder to IVF meds and we don't get enough eggs to freeze? Do we forfeit our right to the FET?

Bottom line is that I feel peculiar after this consultation. I feel like the NHS is eking out these treatments in the vain hope that one of the cheaper ones will 'catch'. I don't think they really are able to see us as real people due to their restricted funding and guidelines. There is no real choice, we are on a conveyer belt and the choice is to accept what is on offer or walk away. And at the moment walking away would mean walking directly to a private clinic and parting with thousands upon thousands of pounds of money, which we can ill afford.

So the question is: do I stick with the free, no-choice treatments (with the risk that I may be wasting my time with sub-par clinicians, practices and facilities) or take our savings and choose to do probably max. one cycle of IVF at a top notch clinic and thereby exhaust all our options in one clear swoop (because the NHS would not take us back from going private). Since we are not rich, I am leaning towards option one. Am I being foolish?


Anonymous said...

Wow! This is a lot of information. I don't think you're being foolish at all. Wishing you all the best in making decisions. <3

TwoPlusOne said...

That's crazy that you NEED to do all 4 rounds of IUI before going into IVF! Lets hope its a blessing in disguise for you though. Positive thinking, right? ;)
I am borderline BMI 20 as well. My FS told me not to lose any more weight, but then I lost some when I went into GF diet anyway. We'll see soon if that had any effect in the success of our current IVF cycle...I just hate this balance we need to have between eating healthy and gaining weight, both of which we need to do at the same time - for me its always a battle I easily lose. Hope you have better luck my friend! xxx

Anonymous said...

First, abandon the concept of "foolish." Foolish is relative when it comes to IF and treatments. I've been thinking about this question a bit too. As I am in the US, I'm paying for this to some degree or another even though I do have insurance. And I've come down to the idea that I just don't want to regret any choices. So I'm prepared to spend a huge chunk of my savings for this. (Who really needs a downpayment on a house anyway?) Ultimately, you have to decide where that line is because, well... everyone's line is different.

Something else which I've found interesting as I've been reading your blog-- the difference between the US and UK health care systems. My insurance has a whole bunch of weird, seemingly arbitrary rules that have prevented/made it difficult to get treatment in what I think is a timely manner. Basically, I've come to realize that neither system is great, because they fail to treat human beings like HUMANS.

Keep your chin up, dear. Better things are around the corner.

Anonymous said...

I can completely understand taking some days to wade through that ocean of information! I am sorry all the answers weren't exactly what you'd expected or hoped for (and that they didn't just magic-wand you pregnant immediately, that would be ideal.. I keep hoping that'll happen when I go to the clinic, but no magic so far).
As for the spend-my-money or jump-through-your-hoops debate, I'd go with the free care for at least the next six months, which will see you through that first IVF (if needed, perhaps not!). That's just my two cents, but if you can spend your own money after, but will void the free cycle if you do your money first, then I'd go with their plan first were I in your shoes. The other thing to consider is there's no guarantee a private clinic would get to an IVF any faster: there are hoops on all sides, I have learned. This way you can navigate the health care system, and possibly make connections and initial paperwork with the private clinic simultaneously: overlap some hoops maybe? Do your clinics have to post their success rates? Ours do here, annually, so you could even check to make sure there isn't a massive discrepancy between the public and private clinics?
I hope some of the information has settled in now, and that having a plan, or options for a plan has been helpful! Good luck this cycle: enjoy the break from having relative strangers poke and prod you.

Haisla said...

Thanks so much for your comments! It's so helpful to have some sounding boards to bounce my wildly whirling thoughts on.

I think we'll opt for the free treatments for now, as frustrating as it is, because quite frankly they are free. And having just read Amateur Nester's list of treatment prices (in the US) for a humble IUI cycle I found it made my head spin and caused me to be super-grateful that we are actually getting any of this for free, no matter how poorly the treatments are dished out.

And in the greater scheme of things, perhaps six more months isn't such bad news, after all. I don't suffer from premature ovarian failure so presumable my eggs will remain almost as good (or bad!) as they are now even a couple of months down the line.. And after we've exhausted the NHS, if need be, I guess we can pull out the the big private guns and make sure that we take the no regrets route, if that feels like the right thing to do at that point.

As for success rates and league tables, the NHS (as far as I know) doesn't seem to have to publish any such things in relation to fertility treatments (please someone correct me if I'm wrong, as I'd love to know the figures for our clinic). In fact the NHS is terrifyingly secretive about these treatments. I wasn't able to find any information about what treatments were available in our borough (it's all a giant post code lottery out here) and therefore had to attend out first appointment with baited breath braced to be told that we'd be entitled to zilch. Luckily we live in one of the luckier boroughs and are entitled to 4 IUIs, 1 IVF and 1 FET, although there are some boroughs where people are entitled to up to 3 rounds of IVF on top of the IUIs.

So there we go. Decision has been made. I'll try to moan and whine a little less and count my little blessings instead.

JCH4DCU said...

I'm on day 3 of an injecibles and am hoping this is the cycle where everything falls into place. my first three IUI cycles were Clomid and I consider myself very fortunate that I didn't have any of the awful side effects I read about from others.

So very much hoping this works because I'm just not looking forward to IVF.

Good luck this month!

Jessah @ Dreaming of Dimples said...

Have fun in Finland. I hope that you get your BFP in the next 5 months and don't even need IVF.

Northern Star said...

Hi Haisla,

I have endo as well. My case is mild, so my uterus and tubes were always clear. BUT.

My FSH levels went down the drain in a big hurry over the course of about a year when I hit about 31/32. I went from totally normal levels to levels that meant I needed to consider donor eggs if I was going to do IVF.

I'm REALLY concerned reading your blog (not meaning to scare you at all), b/c for someone with endo, IUI seems to be a complete waste of time. You're right - you are ovulating, DH's sperm is fine, so the issue is not any of that ... it's the connecting and implanting that's the problem (I would assume).

It's really frustrating that there are not specialized fertility treatment plans for people with different issues ... every fertility problem is its own can of worms - you can't treat every cancer the same so why would we treat every fertility issue the same?

My suggestion is to check your FSH levels pronto - if they are not where they should be, then I'd recommend exploring some different options.

Best of luck. I know how shitty this all is - and don't worry about the venting on your blog. It's where we come to share the hard parts of this journey!

Haisla said...

Thanks for your comments - they really do make my day!! : )

Northern Star, that is really concerning. Thanks for sharing your story. The problem with the NHS is that once they've done all their infertility testing they are unlikely to yield to redoing them again. And privately the blood works would cost approx. £500. Then again knowing that your eggs are good before embarking on an IVF cycle is pretty crucial. And perhaps if I could prove through private tests that my eggs are going bad, I could pressurise the NHS to let me skip the IUI cycles.. Food for thought indeed!

It really does suck that the NHS is so inflexible.. And thanks for encouraging me to vent. Sometimes I just feel like I must come across like a right lunatic what with all the ranty wallowing. But I guess that's just part and parcel of the whole IF package. And better out than in, huh!? ; ) xx

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