Wowzers. So I finally managed to catch up on everyone’s blogs! You’re all busy! And I have been too… Though sadly it’s mainly been work related rather than fertility related.
One fertility related update is that we went to Clinic 2’s open day. I mentioned in my last couple of posts that we were doing everything possible to understand our options prior to IVF cycle #2, as I’ve become more and more convinced over time that there must be a reason for my “unexplained infertility”.
As per my last update, we put in a request to delay our planned NHS cycle 2, as I wanted to see if we could get a few more opinions first. The main one (in my head) is the appointment I have in early February with the reproductive immunology specialist. (See my last post for details – I know that some people think they’re charlatans, but I’m willing to give it a go to try and rule out some issues at least, as I’ve had most physical scans and standard tests.) We also decided we would go along to find out more at Clinic 2.
Clinic 2 is a private fertility clinic that promotes mild/natural IVF. We went along to their open day last weekend and it was interesting. An open day is a free event although of course they’re heavily focused on upsell (making you come to their clinic for treatment). What I find interesting about Clinic 2’s approach is that they don’t advocate conventional IVF, which is the stuff you get on the NHS and the standard IVF that most people who talk about IVF are getting.
Basically, standard IVF wisdom is you ideally want to get as many eggs as possible, avoiding OHSS (ovarian hyperstimulation syndrome, where your ovaries go into overdrive and produce too many eggs and you get health complications). So standard IVF long protocol (which I did for our first cycle) has a period of down regulation (shutting everything down), and then you stimulate the ovaries to produce more eggs than they’d usually do in a cycle. In natural cycle IVF, they try and work with your natural cycle and catch the 1 or 2 eggs you would produce anyway. In mild IVF, they give a bit of mild stimulation (a lower amount, because you haven’t down regulated so they don’t have to start you up again) and you might get 2-4 eggs. It’s really different because they’re focusing more on egg quality and they feel that a lower amount of stimulation results in fewer, better quality eggs.
Anyway, we thought this sounded interesting, especially as I was a slow responder. Of my 12 eggs (after almost 2 weeks of stims), 6 fertilised, 3 were still going on day 2 and only 1 made it to transfer at 5 days. None of them were good enough to be frozen! In the natural/mild cycle they have a similar level of fertilisation but with a lot less drugs/side effects. (This is appealing to me as I did not enjoy the drugs at all.) It also means you can do repeated cycles without too much trouble because you’re not taking lots of drugs.
If you go to the open day, they upsell a consultation for about half the regular price. This is a far more detailed scan and a medical history / advice. So we paid our money and went along this week…
My initial thoughts on the consultation were that I was a bit irritated. We’d paid this money when clearly it was an upsell to make you want to do IVF with them, and the whole appointment was set up for that. We were massively delayed in seeing the doctor – over half an hour which considering our appointment was in the morning, meant they’d built up delays very quickly. Also, it was near my office and I felt a bit funny waiting around in a waiting room of a fertility clinic where someone could have seen me. (They have frosted glass but still. You do feel a bit exposed. I know it’s nothing to be ashamed of but I’m still not keen on work knowing my business.)
However, once the doctor got on with the scan, I did feel more at ease. (Funny when someone has a wand up you!) For one thing, their scanners are way more sophisticated than the NHS. And for another, he was really patient and explained everything and showed it so we could see it and understand it. He took a lot of measurements, looked at blood flow and looked at my ovaries and follicles and womb lining. It was far more visible and understandable (once he explained things!) so it was quite an education. My experience of NHS scans is they point the screen away from you and don’t really show you stuff or explain anything, unless it’s bad news. This doctor explained everything and what we should be looking for.
The scan showed that I had around 8 follicles in total and I was on day 5 of my cycle. It was a bit annoying as he said it would all be more visible on day 10, but they had told me when booking that it didn’t matter when it was in my cycle. I think when you spend a few hundred quid that you should be told things like that! Nonetheless he said that follicles are generally similar numbers although they vary from cycle to cycle. 8 follicles is a bit low and they’d expect more for my age. This was between both my ovaries – one had more and one was squashed in a peanut shape (squished in the middle) and only had about 2 or 3. Not great news.
His recommendation was that I get my AMH tested. This anti mullerian hormone gives an idea alongside the follicle number of my ovarian reserve. It means mine looks low for my age. It’s a test they don’t generally do at my NHS place as they’re not so worried about ovarian reserve as my number of eggs retrieved was within their tolerance limits…
In addition, I look like I have 1 growth in my front womb lining which he said he didn’t think would be an issue (as it’s in the front wall and not sticking out) and another smack bang in the middle. WTF?! It’s just like the other ultrasound tech said, that it seems like I have a fibroid… Where I allegedly had a fibroid removed. The scans at the place I went to are super sensitive and more sensitive than NHS scans – he even showed it in 3D. It’s either a fibroid or some sort of round growth/scar tissue. It’s just under 10mm which means that by usual standards, it wouldn’t affect fertility. But as far as they are concerned, they’d look to get it treated (err, I did, last month!) before doing any transfers.
I think that’s the thing with private clinics – their tolerances are lower. It’s easier to do more investigations and tests when patients are paying. I get that. It’s just a bit difficult to know what to do sometimes.
We explained about our NHS cycle and the fact we are eligible for 2 more and due to start another one, and he said we might as well do it, because if we are eligible then why turn down a “free” cycle? And in this case he said don’t bother with AMH because a standard long protocol won’t be concerned with ovarian reserve/egg quality given we retrieved 12 eggs last time. He recommended various things (like getting my weight down – again, as I am already feeling bad about all this post IVF/miscarriage weight gain, it’s not great for my self esteem! And I’m really not huge; I’m thinner than a lot of my friends, including the ones with babies… Agh).
He said if we did the NHS cycle and it failed then he would recommend mild IVF, given my previous cycle success/fertilisation rate. Maybe a few mildly medicated cycles and freeze the embryos, before transferring them once I have the suspected fibroid and so on (weight!) sorted out. It’s a thought. And it makes sense not to pay for a cycle when we have a “free” one on the table, even if it is likely to be highly medicated/highly stimulated. Unless I have a real aversion to taking more drugs then I should just go ahead and try the NHS cycle next. There are definitely pros I can see of going private though, such as the fact that this clinic tries to fit to your cycle rather than down regulating and heavily stimming you. It’s open 7 days a week rather than certain days for scans. And I think you are much more empowered as a private patient to ask for things… Even just to see the scans when they’re scanning you! This whole decision thing is such a minefield!
So where are we now? I’m not quite sure.
I have an appointment with the immune specialist at the other clinic, at the beginning of next month. We had confirmation through that my request to delay our NHS cycle for IVF 2 was accepted, so I’ll be starting down regulation at the end of March, unless I’m advised otherwise by one of my second opinions. This is good timing because Dr S, the immune guy, says ideally you would take any immune related drugs for around 6 weeks before starting IVF… It wouldn’t be 6 weeks probably but it would possibly still be beneficial. I still don’t know if I have any immune problems obviously. I may have none and T thinks it’s all a bit dodgy, but I am happy to be proved wrong and if it turns out I have no problems I will feel happy to have ruled them out.
It also gives me a bit of time to try and lose some of the dreaded weight. I’ve been trying since new year and I’ve lost around 2 kg (I fluctuate every day) so it’s slow progress, but I am working on it. I find it hard to lose weight without starving myself and I know that wouldn’t be a good idea for fertility. I just wish they wouldn’t emphasise this sort of stuff as it is such a mind****. I have been way lighter, and in my 20s, and I still didn’t conceive. I don’t think losing a bit of weight is really the problem or I would have a few babies from my lighter 20-something years. And all my friends who have babies are not skinny – most of them are larger than I am! It’s just another way to make us feel bad about ourselves when it most likely isn’t the problem. The same goes for age… I’m into fertile death zone now but I wasn’t always, and it wasn’t any different, so really please don’t tell me I left it too late or I’ll feel tempted to punch you…!
My sister and I have been talking about the whole thing too. I sent her the book on immune stuff… It seems like we have quite similar profiles. It’s tough for them as they’re only eligible for 1 NHS cycle where they live – and that’s the one that ended in a similar way to mine. For their next cycle they’d have to go private so I’ve been sharing info with her around the options I’ve found out about. I’ve been trying to imagine how I would feel if she got pregnant before me. It’s strange as she has had far more health problems than I have in the past so I always expected she might have problems getting pregnant. I guess I would be happy for her, and I know she’s struggled like I have. But it would still be hard I think. The best outcome would be if we were both pregnant at the same time… I know that’s very unlikely, but we can dream!
Other than that, I’ve had lots of hassle with this one particular person at work. I’ve talked about this woman on a previous post – the one who asked me if I was pregnant. Her upsetting behaviour is escalating and lately she’s been trying to take credit for my work. It’s all pretty upsetting but possibly more so as she’s now visibly pregnant. So not only is she causing me work hassles but she’s also got the one thing I want. (Not her baby! That would be weird! You know what I mean!) Ah, it’s times like these I think life is just not fair.
But also: I am okay, strangely, apart from this. I feel like I’m doing my best to resolve things. I have made appointments; I’ve done research. I managed to get my cycle put back a couple of months. And I really am working my butt off at work… Hopefully someone will notice. I have bigger fish to fry. My Dog, who is practically the centre of my universe, has been a bit unwell this week so I’m trying to spend time with him. He had some painkillers as his leg was hurting, but they seem to have given him diarrhoea… So I came home this evening to SIX little piles of [stuff] – not nice! And definitely not nice for Dog, who isn’t usually that prolific… He even managed to do another one, so he’s really not his happiest right now. We stopped the meds a couple of days ago but as it took over a week for him to react like that, we figure it might take a few days to calm down. Poor Dog! He’s on bed rest (which to him means tearing round the house and jumping about like a rabbit – he doesn’t do bed rest). I’m hoping that he perks up to his usual self soon. And I hope I do too!