So I finally had my long awaited appointment with Dr S. He’s one of the main doctors in London who specialise in reproductive immunology, thought to be a cause of many people’s prolonged infertility, IVF failure and recurrent miscarriage.
I was introduced to Dr S by one of my blogfriends, TryTryAgain. She’s currently pregnant after a tortuous experience of multiple losses – if that isn’t a recommendation, I don’t know what is!
She had recommended I read The Book: Is Your Body Baby Ready? by Alan Beer MD. It is a rather imposing tome that had a lot of scientific jargon but what I liked about it was that it seemed (to my tired brain) to make sense. It’s mainly about reproductive immunology which hypothesises that there is an immune response (or responses) in some people that causes their body to reject a baby at various stages of development – even before conception, in some cases.
Note: A lot of people (doctors, the NHS) think reproductive immunology is hokum or “woo”. This means that it’s not officially a part of NHS (the U.K. National Health service) protocol and you don’t typically get to do any investigations into miscarriage until you’ve had three, and you don’t get to pursue fertility treatment unless you’ve met certain criteria (different by which district you live in). So this does mean any RI stuff needs to be done privately, at not inconsiderable expense.
I don’t believe in God but I do believe in science. I think there is a reason for things even if that reason is randomness. And I think in the case of infertility that there can be many reasons, some of which you can influence and some of which you can’t. To my mind it makes sense to try and find out if any of the reasons for infertility might be affecting me. And if so, whether they are influenceable.
Of course, some of the things for which there’s evidence are less palatable than others. It’s difficult to feel like weight can have much of a bearing on fertility when for most of my life I’ve been of a normal BMI (until the last year or so when I started taking IVF drugs which made me gain weight, and then totally comfort ate after the miscarriage – even now I’m a size 10 UK, which is not big by any standards).
I’d estimate I’m in the bottom quartile out of my friends for weight, and there are very few who have kids who are thinner than me… So logically it seems harsh to “blame” myself for the weight. (Plus the fact I never conceived even when I was the lower end of the BMI scale and in my early twenties.) Nonetheless, I’m working on my weight – for self esteem more than anything – and I’ve managed to lose 4kg/just over half a stone since the start of the diet (January 4, because everyone knows diets start on Mondays).
I have smoked on and off for about a third of my adult life – quite heavily during the separation from my ex – but stopped a few years ago when I met T and felt less nihilistic. (I also stopped riding my motorbike. Somehow I care more about life now someone else is bothered. I also feel like I have to stay alive for Dog!)
And other negative, supposedly fertility-affecting behaviours: Drinking. Lack of exercise. I’ve cut back alcohol to next to nothing, and coffee to one a day. I don’t specifically exercise but I’m pretty active insofar as I have a sedentary job. I’m currently averaging over 14,000 steps a day which is not too bad.
I think I was a little worried beforehand in case I had too much emotionally riding on it. I probably do. It’s hard not to get your hopes up in this infertility experience. And we’ve probably all had enough bad experiences with doctors that we approach with a certain amount of expectation and fear of disappointment.
First impressions: The clinic is through a door into a little oasis off a high street. This might not seem much but as soon as you step through off the high street, you feel suddenly calmer.
When I got in, I already felt I knew the receptionist as we’d spoken on the phone several times. She’s lovely. The whole place looks more like someone’s front room, with sofas and magazines and so on. The clinic’s mission statement is in big writing behind the front desk… It’s about treating people with respect and being committed to helping people. Nice.
I had a short wait in the very plush waiting room, where I could get a (decaf) drink, plus a choice of water! Got to say, it’s the little things!
Firstly he was pretty nice. It’s maybe a misconception (intentional pun) but a lot of these docs have a bit of a rep for being brusque / direct / borderline rude. I guess it’s maybe the case when you have desperate women at the end of their tether that occasionally you have to give a metaphorical slap to knock out some hysteria. But I needn’t have worried. He’s a smart looking guy in a tweed jacket. For some reason I found that reassuring. (My white middle class upbringing maybe.) The clinic was super posh and literally everyone I encountered, from the receptionist to Dr S to the phlebotomist was super nice. I like nice.
He told me I came at the right time and said that the outlook was pretty good based on my history. (Dani from The Great Pudding Club Hunt: this was one of those times when “At least you can get pregnant” was said in such a way that it wasn’t a platitude – he said that he was optimistic that certain things could be eliminated based on the fact I’d had one IVF pregnancy. He said he often sees people who’ve never gotten pregnant even through IVF and who are older, and that the outlook is more difficult for them.)
I said I didn’t feel optimistic and wanted to eliminate all possible reasons and he was really reassuring but not platitudinous, if that makes sense. I felt a bit emotional and he was reassuring. He wasn’t spouting false hope or promising anything – he merely said it was a sensible course of action to try and figure out if there was a pinpointable cause before embarking on IVF #2.
We went through my (in)fertility history which I had collated and sent through in advance. I also managed to get a printed summary of my NHS records by asking my surgery. It basically makes me look like a right hypochondriac which is probably true! He asked me a bunch of questions to rule things out – like I’ve had scans recently so was able to tell him things about that, and I have regular(ish) but very heavy periods. He said this was probably the fibroid and suggested Transexemic acid (sp? On tube so can’t look it up!) – I’ve already had this prescribed but unfortunately it didn’t really help. I think if we finally draw a line under the fertility (either by having a baby or stopping trying) I would get it all whipped out – it is that painful and heavy that I don’t see why I should go through that every month apart from to have a baby.
He recommended I get a set of tests done – it was a pretty big list but not all of the possible ones. So at least he wasn’t trying to sell me everything! I’m totally aware of the idea that some people think that RI is offering false hope to the infertile and without sounding too defensive, I don’t think he was – he explained the rationale of each test and obviously I could decide whether to have them or not. I had already ring fenced a bunch of money in my savings account and it was pretty much the same as that. So although a large amount, not unexpected!
He also recommended that before we get the results, I start on the following regimen:
- Pregnacare (prenatal vitamins that we already have – we have His and Hers but you can also get them with Omega 3 which I’ll have to switch to once we’ve gotten through the backlog). I got this on Amazon subscription so a lot cheaper than in the shops.
- Omega 3 – 600-900. Should be in certain Pregnacare but isn’t in the one we have. I actually found this difficult to find that dosage as it usually seems to be 300 regular dosage or 1000 high dosage. I found some 1000 in Holland & Barrett (health food store) and when I read it, the actual omega 3 was within that range so I figured it would be okay.
- Vitamin D – they gave me a stash of this at the clinic.
- Baby aspirin – I got this in Boots.
I started feeling really ill that day so I didn’t start on it straight away as I’ve been dosing with other anti cold stuff so I didn’t want to kill myself. We will probably start at the weekend as I want us both to take the Pregnacare doses at the same time! The plan is to take it in the evening.
In terms of the actual blood taking (after you’ve paid a massive bill up front! I didn’t really take offence at that – it’s a lot, but then it’s probably a fraction of what my friends in the US and Canada pay), they took a lot of blood. I’m super okay with blood taking – my veins are a bit thin and buried under a comforting layer of blubber, but the lady was really nice and did her best. I often think the idea of giving blood is worse than the actual experience. That said, even I got a bit tired of the blood after what seemed like hundreds of vials. (TryTryAgain tells me hers was 22 – I didn’t count mine but think it was certainly approaching that, although probably not quite as many!) Off they went for testing and we have a follow up appointment in a few weeks.
I have a list of what Dr S recommended testing for me. I think it was quite straightforward including the immune stuff and blood clotting which was kind of what I expected. We also discussed T having a DNA fragmentation test but ultimately he advised us to wait on this as the NHS doesn’t support this treatment (it would be a type of treatment called IMSI – our trust does ICSI but not IMSI) so there would be no point in knowing right now.
He also was concerned about the fibroid and sceptical that it could have been removed and grown back in a month. I’ve kind of lost faith in the doctor who did the fibroid resection, firstly after the post op complications and secondly that he tells me it’s all sorted and gone whereas a scan at the NHS and the private clinic #2 suggests there’s a fibroid exactly where it was meant to have been removed. He said that ideally we would do another scan, a very detailed one (unfortunately probably the same scan as the one we paid for at clinic #2 but hey ho). He said that there’s a lot to suggest the role of fibroids in infertility is underestimated, especially those right in the middle of the uterus like mine is. Argh. I might try and get the clinic #2 to send me the scan details but ultimately I’ll probably have to shell out again.
What I find interesting is that the clinic exists purely to treat miscarriage and infertility and not to push its own treatments of IVF. I was kind of surprised actually. They just work with other clinics (mainly private) alongside your other treatment like IVF. What was almost reassuring was that I saw at least 3 pregnant ladies when I was there waiting. I know some people in this community find it hard to see pregnant women but to me, all those women had obviously struggled with infertility and/or miscarriage and they were still pregnant.
So we will find out on our follow up appointment in a few weeks what the tests show. T is coming to that – he couldn’t get the time off work as I went to the further away clinic in order to cut wait time. (I made the appointment back in December and this was the earliest.) He’s supportive of me but a bit sceptical of RI, which I guess is understandable but a bit unhelpful. (I suggested he read The Book but he wasn’t about to read 500 odd pages!) I am hoping meeting Dr S will help. My other feeling is even if the tests show nothing then at least we can go into cycle 2 feeling confident, whereas I really don’t feel confident now. And if they show something then we can do some treatment before starting the second cycle.
IVF #2 is scheduled to start end of March (down regulation with Buserelin; luteal protocol, stims with Menopur – we did Gonal F last time and I was a slow responder). So hopefully we will have a month or so to do any treatment and if no treatment, to continue on the health kick.
In general I feel like it has made me feel a bit better about things, like I’m actually doing something to try and increase our chances of success. I didn’t feel comfortable starting in January without anything changing so I’m glad I spoke with the NHS and asked them to put it off. I did feel that this kind of clinic is much more proactive in trying to address the root causes of infertility.
As Dr S said, no natural pregnancies in 13+ years is not just chance. (I keep changing the duration of how long we “count” my infertility as being, purely because I’ve never gotten pregnant, but in this case we are just counting the time in long term relationships rather than the whole time I’ve been “active”!) I guess a few months delay won’t have an overwhelming effect, and maybe this reproductive immunology stuff is all hokum, but as far as I’m concerned if it’s a placebo effect that works, then happy days!
So… Hunkering down for a slightly different Two Week Wait… Wish us luck!