Tumbling Through the Rabbit Hole...
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Stuff, just stuff..

Posted by Haisla Friday, 3 October 2014

I am exhausted by infertility.

I just had a text from a friend whom I haven't been in contact with in years (a childhood friend, whom I still count as part of my 'inner circle', even though we are equally bad at keeping in touch) letting me know that she is pregnant.

That in and of itself is all fine and dandy - yes it smarts a bit at first, but at the same time I am so pleased that she doesn't have to go through this shit that I am going through. But she would like to talk.. and that unfortunately I cannot do. I can send her my most excited and heartfelt congratulations by text, but to have to have a conversation where I'll recount my infertility journey blow by blow and she'll do the same with her pregnancy experiences will just be too much. I hope she'll understand.. and I hope she's happy and in a place where she feels ready to be a mummy (she's always been a bit of a wild child)..

I've also tied myself up in nots with all the immunology stuff.

I've read Alan E. Beer's book and I think I get the main premise - because I'm diagnosed with endometriosis there is a high likelihood that there is something wrong with my immune system. Certain natural killer cells may not be doing their job properly in sweeping up the endometrial cells that end up in my pelvic cavity as a result of 'retrograde menstruation' (which may have resulted in me developing endometriosis). Also as a result of the endo I may have excessively aggressive natural killer cells that attack implanting embryos. There may also be a host of other stuff wrong with me or nothing at all. That much I know.

However, most people who go for private immunology testing have been through a number of pregnancy losses or failed IVF cycles.

We haven't had any pregnancy losses (due to not having had any pregnancies for that matter) and we can't really afford to fail an IVF cycle.

We are offered two cycles of IVF by the NHS; one fresh and one frozen. We could probably afford one more private IVF cycle, but not the immunology testing and treatment that at that point would probably be useful if not necessary. So the logic goes that we'll try to get these immunology tests done prior to moving on to IVF. I've had this discussion with M and we've agreed to this plan in principle.

The thing is that immunology testing is shockingly expensive. The top clinic in London charges approx. £4,000 just for the testing (yep, you read that right, they do offer the most comprehensive set of tests, but still) and then there's the treatments, which are between £1,400 - £1,650 per IV-drip bag of IVIg (depending on the size of the dose) and £275 for intralipids .. It is a heck of a lot of money. Almost as much as we would spend on a private IVF cycle.. And if immunology is the issue, who knows how many rounds of treatment I would need (sometimes they are prescribed for a period of a months before the IVF cycle if the diagnosis is particularly bad). Oh, and then there's the £200 charge per consultation, not to mention other meds they could prescribe, like corticosteroids, Clexane, Humira, LIT, etc (depending on your diagnosis). The costs could really quite easily spiral out of control. Just thinking about this all makes me feel sick. Who's got this kind of money squirrelled away?!

There are slightly cheaper clinics out there (like one or two in London) but in my understanding many of them won't be willing to offer immunology testing let alone treatment unless they are also dishing out the IVF cycle themselves.

It just feels so messed up that most people can get pregnant just like that without really trying, and here we are considering spending majority of our mortgage deposit savings just to try to a) find out what is wrong with us and b) finally get knocked up. I feel angry and bitter and like it's just. not. fair! Trying to make these decision when the stakes are so high. This is our one little chance of having our own biological children. And we want to make the smartest possible decisions and spend our money wisely but the truth is that we are driven by fear. The possibility of this failing is terrifying. It's like staring into an abyss..

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In other TTC related news, AF arrived on Wednesday, I started on Menopur again on Thursday morning and our fourth and final IUI should take place sometime next week (unless of course my follicles mature and pop over the following weekend which would make this cycle a bust). We shall see. I'm not holding much hope after the failure of our last 'perfect' injectable IUI cycle. I have to say though, that the injections are much easier to deal with when dished out in the mornings. I'm far too dozy to feel anxious about them. So far so good. One injection down, only four more to go! I will survive and with minimal moaning, too, I hope.


Northern Star said...

Haisla, I am so sorry that this is the reality you are faced with. I understand completely.

Wishing you all the best as you move through the decision making process.

pregnant in my forties - hopefully! said...

Oh Haisla lovely, I'm sorry I didn't see this post. For some reason my browser got stuck on two posts ago, and then I found your last post so late, and now this. Feel very unsupportive and annoying as I have been checking in.
I'm so sorry that this is happening to you. I totally understand you not being able to talk to your friend. I can imagine anyone newly pregnant will want to discuss pregnancy with absolutely everyone, but you can't, and she will understand one day.
Is there no way you can get NHS help with the testing? Seems strange that it will fund 2 cycles but not investigate the cause that might prevent those cycles working!!! I am quite angry about things that were never looked into with me, back when my pre-40 age would have made it possible, so I know how unintelligent the system is.
I've just had to shell out for an IVF cycle, so I can imagine how you are feeling. Big hug honey, this is a difficult journey we are forced to take.

Patient Subfertility said...

I guess you've been at this for a while, but I would need a lot more than a couple books to spring for that kind of testing. Especially when this could still work. Fingers crossed for this IUI.

Anonymous said...

Haisla, I'm so sorry you are having to make these decisions about money and possible futures: mortgage vs. baby isn't something most people have to weigh, and it sucks that you are facing it. I agree with the other commenters that I would want more information before paying for testing. My sister had endometriosis (stage II or III, I believe), which was cleared with a laproscopy and then for future IVF protocols she's had intralipid injections. But I don't think she ever had any immune testing done, just worked with the assumption that the intralipids would help mediate any negative effects. I would see if some preliminary testing can be done with the NIH: it makes sense they'd want to maximize your chances right off the bat.

Haisla said...

Thanks for your comments!

I have and definitely will do even more research before deciding to fully embark on this. We've booked an initial consultation and I am looking forward to speaking to the consultant to see what he suggests based on the info we have so far.. One option, I suppose would be to treat the potential immunology issues empirically i.e. without the tests, but I think I'd prefer to have some answers..

Unfortunately because reproductive immunology is still such a controversial area of science, I don't think there's any hope in hell that the NHS will fork out for the tests. So we shall see how this'll all pan out.. But for now I feel a bit more peaceful about the way we're going.x

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