Haisla's Adventures in Endoland

Life has become so hectic in the run up to Christmas that it's a bit scary.

I am looking at my diary and between now and Christmas I've got exactly one full weekend off when I won't be working. Other than that there's always a Saturday or a Sunday when there's something work related going on - be it a Christmas Carol concert or a Fayre.

I sort of knew that this is the way it would be this year, but it's still a little scary. I've got a few annual leave days still to take this year (which I was saving for our blessed IVF), but which I just cannot for love nor money fit in before Christmas. My plan is to talk to my line manager and see whether they could be rolled over into next year. It's normally a little frowned upon, but I could really do with those days, since next year is likely the year when we'll finally embark on IVF. My line manager is normally a fairly understanding and reasonable man, so I hope he'll go with it.

Since things are so hectic work-wise I have started a regime of self care, which included a massage the weekend before last. It was a cheapo-cheapo last minute one and I wasn't thoroughly impressed with the quality. My masseuse was very pleasant, but kind of stingy with the massage oil (I nearly felt like reminding her to top it up half-way through but politeness got the better of me). She also seemed to have no problem with massaging my spine (which I thought is a big no-no?) and it left me feeling a bit bruised and battered afterwards. M. seemed happy enough with his massage but a little scared of his masseuse who had a tendency to bark orders at him. It did leave me wondering at the legitimacy of their qualifications. I think we've mutually decided not to return there for a follow-up.

Anyway, both M. and I agree that monthly massage is the way forward, we'll just have to choose our provider a bit more carefully. M. found a good deal for an introductory 1h massage in a place near to us. I think we'll sample that one next. It's just nice to be doing something that is good for us for a change and I'm so glad that M, too, is on-board.

The upside with this crazy pre-Christmas busy-ness is that I've hardly had time to fret our infertility and our next doctor's appointment is only a week and a bit away. It's kind of crept up on us. I really need to get my stress levels in check before next year though, as my understanding is that it takes three months for eggs to mature.. And at the moment mine are stewing in a nice cocktail of stress hormones. Not good.

I really don't know whether I'll get much blogging done before Christmas. Things are pretty uneventful on the TTC front, but I'll try to ping something out after our IVF(?) appointment. It's just hard to fit anything extra in when all I want to do when I get home is collapse in front of the TV on our sofa and fall asleep. Again, not good.

I still read all the lovely blogs on my reading list and can only apologise if my commenting is a little erratic. I will cheer you on from the foggy haze that constitutes my consciousness these days.

I am officially married to a genius.

After battling with blogger all morning, my darling M has resolved all of my commenting issues (hopefully) for good.

We have now installed Disqus commenting system, which will not only allow people to leave comments using different browsers (people at blogger HQ, please take note), but also for me to manage my comments and reply directly to individual commenters!! It feels like I have just moved onto the 21st Century.

We are still trying to beta test the system to ensure that it really does work in as many different browsers as possible. You can leave comments anonymously by choosing "I'd rather post as a guest"- you'll just be asked to choose any name and include an email address which will not displayed.

We've tried to make commenting as pain-free as possible and really, truly hope it'll work.

Again I would like to apologise to anyone who tried to comment and got their comments eaten by blogger; I know how frustrating it is.

If you do encounter any problems with commenting on my blog in the future, please send me an email at: adventuresinendoland@gmail.com. I will try to check my emails there fairly frequently.

Precious Labmonkey wrote a whole separate post to notify me that she's having a hard time leaving comments on my blog - it appears that the glitch in the matrix has returned!!

I'm so sorry if you've been trying to comment and been unable to, I will try to rectify this problem (if I can with my almost non-existent techie skills) not necessarily now (as I am already running late from leaving for work) but by the weekend, I promise.

Thanks again, Labmonkey for bringing this up - you're a superstar!!! xxx

I've been awol of late, I realise.

Things got a bit hectic..

First there was an inspection at work that took up so much time to prepare for. I literally worked all hours to get our centre ready.

And then we had my family over on a visit, and that was full.on.

Lovely, but full on. We went sightseeing every single day and saw pretty much all the free stuff that there is to see in London. It was great, but exhausting. I love them dearly, but we both sighed a deep sigh of relief once we'd taken them back to the airport.

And the week just gone, I've mainly working and recuperating, since we didn't really have a weekend to wind down. And then this Saturday I worked again.

So I've had a couple of days off now and feel almost human again and ready to show my face at the blogosphere. I realise I've missed out on some pretty momentous moments in other bloggers' lives, so I can only apologise that I haven't been there for you!! I will try to be a better blogger and commenter again..

I can't even remember whether I last posted before or after the IUI, so at the risk of repeating myself I will go over it again.

We had the fourth IUI on three Fridays ago. Nurse Nelly wasn't there, so we had another nurse (of no name as yet) whom I hadn't met before and although she tried to be really considerate and gentle, I actually prefer Nelly. I know, I was shocked at finding myself pining after Nelly. I'd much rather discuss Nelly's family member who missed their plane than have someone overly anxious (namely nurse nameless) do the procedure and by trying to be extra-careful cause extra discomfort.

Unsurprisingly, the IUI did not work out. AF started last week and is almost over by now.

We have an appointment on 9th December to discuss, I hope, IVF with the NHS. Providing they haven't ran out of money and turned the IVF taps off. I will beg and plead. Because they promised, promised!!!

Oh, and we did go to see the private RE who specialises also in immunology issues. What a waste of our hard earned money. We could not for the life of us understand almost a word the doctor had to say to us. I'm sure he knows his business, but my goodness. The thick accent. The practice basically reeked of money and desperation. And that is not a pretty mix. Especially when we have the latter but not much of the former.

I guess my greatest disappointment was in the fact that he couldn't really give us any reassurance. I think it's related to fear of litigation. And I think I went there with overly high expectations. I wanted him to tell us that immunology is probably the cause for our fertility problems and that by pursuing the testing and treatment we'll get our baby. Well, he didn't. He basically told us that IVF is our best option and to not delay.

He said our chances with IVF are about 20% / cycle. If we do immunology testing and find out that there are problems the treatments could up our chances to 35%.

That's all he could say.

I tried to ask him whether he thought that immunology treatments could affect the quality of the embryos we get, or whether it would only improve our chances of implantation (that's what I thought I asked at least, M. later told me that he, too, had not understood my question the way I had worded it), but he didn't really understand or answer me.

We were both pretty floored when we left that place. 20% vs 35%. Doesn't sound overtly promising does it? I don't know what I expected but certainly not that. The appointment felt rushed. I thought that with money we could actually buy some proper time and interest from our physicians, but I guess I was wrong.. Perhaps those who really care, work within the NHS and not at a private practice making the big bucks.. Or perhaps I am being overtly harsh. It was a Friday, one of the busiest days at their practice apparently. All I could hear when we left, though was the chi-ching of their cash register.

Bottom line, I guess, is that we won't bother going back there. Alan E. Beer sounded so confident in his book about immunology. The living doctors seem to be rather more reserved in their estimations, as said, perhaps due to fear of litigation, should they make grandiose promises that don't come true.

One interesting thing, however, that this £200/h doctor said was that he considered my thyroid levels too high. Mine are 3.4. According to the NHS anything under 5 is fine. He said he would like to see the level nearer to 1 on anyone trying to conceive.

The interesting thing (and perhaps mildly 'crazy' sounding thing) is that for some time now I have had an inkling that all has not been well with my thyroid. I am always cold. Always. And I get this weird 'thyroid-y' feeling. I can't quite explain it apart from feeling like all is not well around my thyroid region. So some months ago I started supplementing by taking dried seaweed. I now have a regime of drinking a disgusting drink of fruit juice mixed with a largish quantity of dried seaweed every morning. And you know what, I've been feeling mostly better. Less thyroid-y. Still cold all the time, but less thyroid-y. And if I feel thyroid-y, I take two doses a day.

I toyed with the idea of actually going back to my GP and trying to get my thyroid levels tested again to see whether there's been a real improvement (either due to seaweed or placebo effect) or whether my thyroid levels are still messed up. But I couldn't really think of a good enough cover story for why I think my thyroid is causing me problems. And even if the levels came back at 3.4 again, I'd have a fight in my hands to try to get the NHS to recognise the level as high. I just don't know if I've got that kind of fight left in me. I know I'm meant to be advocating on my own behalf and everything, but it does feel like such hard work. Especially if there is a risk of coming across as a bit a looney.

Does anyone else have any experiences of thyroid levels and TTC?

One last little piece of news related to IF (esp. in the UK) was this article that appeared in the Evening Standard on 30/10/14. Apparently NewLife clinic is partnering with Access Fertility and will be offering IVF treatments with a money-back guarantee of up to 70% if the treatment(s) are unsuccessful. I haven't yet looked more into this or read the small print. The age limit is 37, and I hope that refers only to the prospective Mums (considering that M is 42). But it did shed a bit of extra hope into our situation. If we could try private IVF with some kind of a money-back guarantee, then perhaps we could afford at least one private round. It's kind of a game changer, if it really is true.

So lots to think about, research and mull over again..

But at least we're a little bit closer to IVF. I mean December is literally almost just around the corner.

Now this is going to be a long post, since I feel like I have a quite a bit to chew over..

First of all, I didn't get the job. 

It's funny, because I sort of knew it straight away after the interview (you know when you can tell that there isn't much interest among your audience) and there was this huge wave of relief that washed over me when I was walking back to the station. It would have been a great big commitment to start a new job at this junction, and I hadn't been fully conscious how anxious that had made me.

This job I have right now is not ideal for pregnancy etc., but at least I can take as much time off for my treatments as I need to - I have proven myself, people trust me and I can be open and honest about what is going on in my life and where my priorities lie (whilst still doing a great job at work). It just means that I can concentrate all my energies and efforts into getting pregnant, which is what I want more than I do a new job.

So, all in all I feel good about this.

And funnily enough I feel better about my current job, too. It's one of those things where you don't perhaps appreciate how good you've got it until it's (almost) gone. I love (and also occasionally hate) my job. It's my passion, I'm genuinely good at it; now I just have to figure out how to do it without burning out. So, I'll stick with it for the time being.

Job hunting was a nice distraction but it's time to return back to this bidness of getting us pregnant.

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Secondly, I have booked an appointment for us to see a consultant at a private clinic to discuss immunology testing on 24/10/14.  I am super excited about this. My family are coming over from Finland to visit us during that week, so both M and I have taken some time off. It's just the perfect time for this appointment, as we don't have to take any additional time off from work (which can be tricky for M). We'll chuck my family into the National Gallery or somewhere for an hour and go talk to the consultant. I am in the process of writing down questions and concerns to bring up, because for the first time I feel quite excited and hopeful that we will be speaking to a health professional who will actually be interested in our particular case.

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Thirdly, this final IUI cycle has gone a bit weird.  On Wednesday, when I had my last shot of Menopur, the scan showed that I had one 13mm follicle on the right-hand side and two follicles on the left (14mm and 9mm). All fine and dandy there.

But, then in yesterday's scan, the right-hand side follicle had completely disappeared. Did that follicle have a growth spurt and release an egg super early, or did it just wither and die? We may never know.

On the left-hand side I had two follies; 20mm and 14mm. We were instructed to have sex that night (which we duly did) and then I was instructed to take an ovulation test this morning. If the result was positive we were to have sex today and Sunday (and no IUI, i.e. cycle cancelled), if it was negative we were to have sex today and then do the trigger shot at 23:00 and have IUI on Monday morning.

I took the test and to my surprise it was negative. Like completely negative.

M had bought me a pack of those new fangled ovulation tests that display a flashing smiley face for 'high fertility' and plain smiley face for 'peak fertility'. I just got an empty circle. How is that possible when I have a 20mm follicle ready to burst?! (Unless it already burst yesterday, but wouldn't there be a residue of the LH I'd been producing?) These are the moments when I really don't understand anything about fertility.

Now I'm just thinking that won't Monday's IUI be a bit late for anything, if my only large follicle is already gone? Unless the 14mm one is meant to catch up or something.. Oh, who knows.. I'll just go with the flow.

Dr Duchess was quite apologetic about the potential cancellation of this cycle when I discussed it with her on Friday and said that we could have another round of IUI (should this round be cancelled) if we wanted to. I told her we'd 'think about it' (i.e. 'NO THANK YOU.'). She did then mention the magic IVF word (for the first time in the context of us actually moving towards it) and we now have an appointment with an NHS consultant on 09/12/14, which suits us perfectly, as it should give us enough time to make decisions about the immunology testing..

So, slowly, ever so slowly, we are inching forwards towards the blessed hope of an IVF.

And this is why I am so optimistic. I don't care about the job, I don't care about this cycle. All I care about is that we have a glimmer of hope in the horizon, and that that horizon isn't like miles and miles away.

So yay!!

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.

I've got an interview for a new job!!!

I am super nervous and excited.

I had literally given up this job as dead and buried since it took them more than two weeks to invite me for an interview after their closing date. I had done the psychological pep talk about how it was probably for the best and 'not meant to be' and how there were probably a ton of very high quality candidates (the job pays more than my current one with less responsibility - eeeep) and that in the greater scheme of things it would probably have been horrible to have had to negotiate the terms and conditions for an IVF cycle with a new employer.

And yet here I am with an interview (and an informal visit to boot tomorrow) lined up in two weeks' time.

I don't want to think too much about the future since the job is certainly not in the bag yet, but I am nervous either way. Luckily I still have my 'oh, well, it's probably for the best' self-spiel tugged away for a  later date, but I genuinely don't quite know what will happen if I do get this job..

I don't think it's realistic that I will be able to squeeze an IVF cycle out of the NHS in the next three months (which is the length of my notice period).. and yet I don't think I could be so brazen as to ask for time off for an IVF in my first few weeks in a new job..

Shitety-shit-shit. And I really would like this job. As said the money would be better, the job is far less stressful and far less high-risk (i.e. with less chaotic client group) and it's in an area of the field that I have genuine interest in.

However, if I do get offered this job and take it, will I be sacrificing my small window of opportunity for a biological family (by having to postpone IVF treatments potentially by months)? And if I don't get this job will I be doing the same by being in a high-stress job that is certainly not conducive to me getting pregnant?

Oh, the dilemmas of the developed world.

I have decided to take the 'que sera, sera' attitude for now, as I can't really affect the outcome of this scenario (apart from turning down the interview, which I am not going to do..).

Anyway, in a more directly infertility related news, we're approx. one week away from our fourth and final IUI cycle (I've got a feeling we may have missed the ovulation window this month - the progesterone may have made my last cycle seem longer than it actually was and eaten a few cycle days from this cycle, so when we finally managed to have some bedroom action I fear it may have been in vain for baby making purposes) after which we should hopefully have the talk with our Doc about moving on to IVF-land.

I've also started spotting on CD 17 (three days after supposed ovulation, so certainly not implantation bleed) so something's rotten in the state of my uterine lining, which I am going to discuss with Dr Dutchess when I see her in couple of weeks' time..

I am still toying with the idea of getting some immunology testing done (I've ordered and started reading 'Is Your Body Baby-Friendly?: Unexplained Infertility, Miscarriage and IVF Failure, Explained' by Alan E. Beer et al from Amazon that comes highly recommended in relation to this - I'll probably write another post about it soon) before we embark on the NHS paid IVF, just to maximise our chances. I know the immunology stuff is highly controversial, but I am still convinced that my endometriosis and immune system have something to do with our lack of babies.

The problem is that the testing is fairly expensive (we're talking thousands of pounds here) and the treatments are fairly pricey too. I would just like to speak to someone who is an expert in the field and try to get a sense of which tests might be useful.. Obviously I will go in with some cynicism attached as even the best infertility clinics are in the business of making money and therefore potentially likely to recommend the most expensive tests and treatments to everyone that walks through their doors. Hopefully I am savvy enough these days to smell a rat and a well rehearsed sales-speech a mile away..

But for now I better go do some research on my potential new employer so that I can approach tomorrow's informal visit with the required levels of knowledge and inquisitiveness.