Looking for answers

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!

  
So, that’s all very nice, I hear you say, but what did Dr S have to say? (Note to my NA readers: I’ve figured that Dr S is kind of our equivalent of your Dr Braverman.)

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:

  1. 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. 
  2. 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. 
  3. Vitamin D – they gave me a stash of this at the clinic. 
  4. 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!

 

Advertisements

39 comments

    • Nara

      Ha, thanks! I was wondering if it was a result of having half my blood extracted from my body (haha) but I think I was probably due for a cold. Am using Lockets. They always make me feel a bit meh! I started taking the supplements last night. X

      Liked by 1 person

      • TryTryAgain

        The blood loss probably didn’t help!! But great that you’ve started on the supplements, I’m so keen to hear what the tests show. It’s interesting what you said about Dr S just focusing on miscarriage, rather than pushing their IVF/other treatments, that’s so true and what makes it quite refreshing. Have a good weekend and hope you feel better soon 🙂 xx

        Like

  1. notabroodychick

    I’m glad your appointment went well! Re: the vitamin D, you probably are deficient, as a lot of us in the UK are. I was very, despite having taken multivitamins for ages that had it in. I would really recommend getting your level tested, as then you know the situation for sure and what kind of dose you need to take to get the levels to the optimum for treatment quickly. It took me about 3 months to get my level up to what the clinic recommended for during treatment. On the Zita west clinic you can order a test.. It’s about £50 if I remember right, and you do it yourself at home and send it off, and then you get your results from the nutritionist and she tells you what vitamin D dose to take.

    Liked by 1 person

    • Nara

      Thanks! I’ll have to check what the tests were. (There’s a big long list!) I don’t know if it was included. The supplements were just his “good practice” ones that he recommended people take before getting their personalised test results. I’m taking 2 Vitamin D capsules a day. I’ll check on the list and see if they’ve tested for it! Hope you are well! Xx

      Like

      • notabroodychick

        I doubt the immune tests included vitamin D, mine didn’t and I’ve never heard of anyone’s who did. I had 19 vials of blood for my immune Tests! Good thing we are so used to needles going through IVF!

        Like

      • Nara

        They weren’t all immune tests. They were for different things… I don’t remember what they all were though! Will have to check.

        Like

  2. Courtney

    This is quite interesting. The thing with RI is that if your next cycle works, is it because of the RI or because it was just the cycle that worked? You’ll never know since you “only” have one failed cycle behind you. But I think it’s worth investigating and trying. It’s like acupuncture – my RE said that he wasn’t sure if it helped or not, but that there was no harm in doing it and that he’s noticed it makes his patients feel better and more in control, which is a good thing.

    Good luck in your wait! I’m anxious for you to get going again!

    Like

    • Nara

      Hey! Yes, I do agree with that. I kind of think the second cycle could work (although I really don’t feel optimistic about it) in which case I wouldn’t know what had helped. I guess it’s got something behind it because a lot of people who go there have many failed cycles and miscarriages before they go. I’ve just gone relatively early on in the process! And there’s a lot to be said for just feeling better about things, like acupuncture *may* help, and obviously helps a lot of people. (I keep meaning to do it but never get round to it!)

      I’m keen to get going, too! 🙂

      Like

  3. RJ

    Wow what a great doctor. He sounds so caring! I’ve heard less than stellar things about the US RI’s bedside manners, so it’s cool he is so calm and nice. It’s so great that you’re investigating this early…I still go back and forth about it. I’m so curious to hear the results. Hope they turn out well. You have me cracking up at the “different TWW”.

    Like

    • Nara

      Ha! Well he wasn’t overly caring in a touchy feely way. He was just quite straightforward and nice, and reassured me that I wasn’t being hysterical by coming and trying to find out answers. The receptionist and phlebotomist were really nice and chatty though. I think it makes you feel better if you feel safe and relaxed in a place!

      I don’t know whether RI is “the answer”. It may not be for some people but I think it’s worth looking into, based on my long history. If I lived close to the Alan Beer clinic I would be there like a shot!

      Liked by 1 person

      • RJ

        Yah I think you’re so right. I’ve made peace for now with trying again one more time before possibly investigating that option (or moving onto a surrogate).

        Liked by 1 person

  4. theskyandback

    Yay! I’m so glad you had your appointment and you feel at least slightly reassured. I’ve been waiting anxiously to hear how it all went. I’m actually starting to get annoyed at all the doctors that don’t “believe” in reproductive immunology. How can you not believe in science? Dr. Braverman, and I’m sure your Dr. S, are practicing science-based medicine. And they have results to prove it. I think the fact that it’s a relatively new field is what has the doubters weary of it. It can’t be just a coincidence that so many women can’t get pregnant or have recurring loss and then have success with RI. I guess I shouldn’t care so much if people believe in it or not. But I know beyond a shadow of a doubt that it helped me, and I hate to think of others not at least exploring it because their current RE tells them it’s all bull malarky. I can tell my current OB doesn’t really buy RI, but she works with Dr. Braverman anyway because as she says, “Look, he got you this far. There’s a live baby in there. That’s all I care about.” I wish more docs would at least take this stance. Anyway, whew, end rant! I know I’m preaching to the choir here. As I said before, I’m so glad you’re exploring this avenue! I can’t wait to hear about your results. I’m feeling very hopeful for you. Xoxo.

    Liked by 1 person

    • Nara

      Haha! Nothing wrong with a bit of passionate opinion! 🙂 I agree… I think it takes people a long time to change the prevailing opinion, eg the NHS is a government and tax run service, so there are all sorts of processes and governance they have to go through for anything to make it to the approved list. I guess it’s similar to the FDA process for getting stuff approved!

      They are really under strain so they can only provide quite standardised and cost effective treatment rather than a personalised treatment plan that a private clinic can (because you’re paying for the service and extra for any extras). So I do get that up to a point. I think they’re not responsive in the way of they can’t easily see that a one size fits all policy isn’t necessarily the most effective.

      Eg By forcing people to go through three miscarriages in order to get further treatment, you’re limiting their chances of further success (as the most free cycles of IVF you get are 3) and you’re risking their mental health, which can lead to further costs in treating depressed people, and depressed people have more health problems overall. It’s not that causal but I do think they’re taking a very short term view. (Plus more personalised treatment is more likely to work first time rather than giving many ineffective treatments.)

      Like

  5. pinksnow78

    It all sounds positive and is definitely worth a go – even if as you say, just for your own peace of mind 🙂 Hugs x x

    Like

  6. libraryowl33

    I’m so glad your appointment went well! I like that this dr wants to figure out what is going on with your fertility before suggesting a treatment. Good luck with your TWW! *hugs*

    Like

    • Nara

      Thank you! Yes, he doesn’t actually do any treatment like IVF (which I only found out once I went there). I assumed he would also do IVF. He just treats people who are having problems and works with their doctor (if their doc is willing). In our case any treatment I have is not condoned by the NHS so we’d have to keep it under the radar.

      Liked by 1 person

  7. My Perfect Breakdown

    I am so glad you got that appointment and you are seeking answers! Honestly, I would recommend it to anyone who can possibly afford it. There are so many people who suffer so much through years of IF/loss and go on to have successful pregnancies under the care of an RI. I guess, the eay I see it, it won’t hurt and if it helps then it’s worth every single penny! I truly hope this is the first step to your healthy pregnancy and baby!!!

    Like

    • Nara

      Thank you! I think it makes sense. Time will tell. What I find frustrating is that there’s no consistent information out there. Like I find the advice to have 3 miscarriages and then start worrying to be ridiculous. Why would anyone put themselves through that 3 times if they could try and avoid it? I found one miscarriage traumatic enough and I’ll do pretty much anything to avoid another one. I can’t imagine how difficult it must have been for you and how strong you must be to have gotten through it. X

      Like

      • My Perfect Breakdown

        I couldn’t agree with you more! The guideline of 3 miscarriages make no sense and the emotional impact of loss simply isn’t considered. I’m so glad you aren’t waiting for 3 losses before you start doing your research!

        Liked by 1 person

  8. thecommonostrich

    Knowledge is power. In run up to my IVF, my RE did every test imaginable to find out why we hadn’t gotten pregnant the good old fashioned way. (This was eventually how we discovered I had polyps.) Honestly, I would do all that testing again, even though most of it came back normal. At least then we knew what we were (or weren’t) dealing with.

    Even if the answer is “We don’t know” at least it is something you can SAY, you know what I mean? Better than “It could be X, Y, or Z…” Anyway, all this to say that I’m totally validating your choices. Hoping all those vials get you some answers!

    Like

    • Nara

      Ha! Exactly, that’s just how I feel! I want to be able to feel clear in my mind that I eliminated all the known possibilities, and I’m in the best possible position to try IVF 2. If it doesn’t work, there’s nothing I can do about it. But I can try and give my body the best chance.

      Liked by 1 person

    • Nara

      Thanks! As for the motorbike… It’s not very big, but I’m quite small so it was apparently rather comical! I still have the bike but I never ride it any more. Somehow seems mean to go off biking – I like to spend all my time at home with Dog. (And T! Mustn’t forget T! 😂)

      Liked by 1 person

  9. the longest journey

    I am so glad that you came out of your appointment feeling better about things. You never know how those appointments will go. It would be so nice to hear the words…well, at lest you can get pregnant…in a good way and to have a doctor actually look into the causes of RPL. I look forward to your updates. xo

    Like

    • Nara

      Thanks. I read your post yesterday about looking for fertility docs and what you’re looking for. I am similar in that way! I’ve been to a few and some are definitely easier than others to be a patient. I kind of think at the end of the day if you’re paying for something, and it’s a lot of money to pay, you need to feel secure in the knowledge that you’re spending your money wisely. I’m hoping Dr S is decent… He does seem to be so far. Only time will tell!

      Like

  10. EmilyMaine

    This all sounds great. I think it is well worth investigating and so many women have success after going down this path that I just can’t see it as hokum. But who really knows. I guess we have to wait for the science to catch up and tell us. And by that I just mean time yields more conclusive research but I know they have evidence right now that is guiding them. I can’t wait to hear what the tests show. Answers for you would be nice.

    Like

    • Nara

      Thank you! Yes, I agree – they are basing this on science, but they don’t have enough of a data set to overthrow conventional wisdom so far (eg “It’s perfectly normal to have up to 3 miscarriages” or “Sometimes infertility is just unexplained”). The other thing the docs at clinic 2 mentioned is that it’s hard to get a double blind study because the patients that come to them are self selecting. (ie Patients wanting treatment from them for infertility aren’t willing to possibly get conventional treatment – they want the treatment that they think is more suited to them, that they feel is more likely to lead to success.) My understanding is that to get a chance of getting it onto the “conventional list”, it needs to have several peer reviewed double blind studies, which is why it takes so long for any treatments to change.

      #sciencegeek 😉

      Liked by 1 person

  11. Babyscienceproject

    Glad it went well and that he turned out to be a nice person and not a pompous arsehole! Makes a big difference, especially if you’ll be seeing a lot of him over the coming months. Tweed jackets add an air of quiet confidence.

    Liked by 1 person

    • Nara

      Haha. Yes it’s nice he’s not pompous. Maybe he is! But it was a fairly short appointment so not too much time for that. 😉 I’m hoping I do see more of him and he continues to be nice. Who knows what might happen?!

      Like

  12. flatwhitetogo85

    I’m pleased things are progressing and that you’re “ticking things off”. Knowledge is power, and if they find nothing wrong at all then it’ll just put your mind at rest (slightly) for any future IVF cycles. I hope you start getting a few answers x x x

    Like

  13. Recurrently Unlucky

    I’m so glad you had a good experience with the RI so far and didn’t feel like he was trying to sell you false hope. I’m very curious to see what the tests will show and what protocol he will recommend to you! I really hope he can help you!

    Like

Tell us your thoughts...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s