It can’t do any harm… the aspirin problem

Following on from this, I have recently read an interview with Professor Arri Coomarasamy , Consultant Gynaecologist and Sub-specialist in Reproductive Medicine and Surgery at Birmingham Women’s Hospital. You need to scroll down to read it here: I will try to find, read and share the aspirin research that is referred to. It’s not the first time that I have heard that there has been a study which seemed to show that aspirin used in pregnancy WHERE THERE IS NO KNOWN BLOOD CLOTTING ISSUE may actually CAUSE miscarriages. This is really scary for the hundreds of women under the care local RMC clinics where they still prescribe it ‘just in case’. The advice in the College guideline (the official list of what treatments/medicines work for what condition) still doesn’t seem to have been updated to reflect new findings. As a matter of fact, my GP was sent a letter from a local RMC consultant this August (2014) saying that they were not aware of any changes.

The way I'm making sense of miscarriage

There is a belief in the Recurrent Miscarriage community (medical practitioners and sufferers) that baby aspirin (75-81mg) can help prevent future miscarriages. The idea is that it thins the blood slightly, meaning that it flows more easily to the uterus, the placenta and the developing baby. This can be effective if the patient has a known blood thickening/clotting issue, for example:

  • the antiphospholipid (aPL) antibody and lupus anticoagulant – this test should be done twice, six weeks apart, when you are not pregnant

Antiphospholipid (aPL) antibodies are known to increase the chance of blood clots. These blood clots can block the blood supply to the foetus, which can cause a miscarriage. (from

St Mary’s, London, also perform the TEG test (, in which your blood is rushed to be tested straight away, while it’s still fresh to check for clotting disorders. I am due to have this test if and…

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The difficult demographic

In the very small bits of time when I’m not feeling sorry for myself, I feel sorry for the medical practitioners that come in to contact with women like me. Recurrent miscarriers; professional, educated late 30 something women. We are used to Getting Stuff Done. We’re clever, organised and our memories are long. And thanks to the Internet, we can research, read and gain at least a basic understanding of journal papers and read peer reviewed, published research. This ought to make us more difficult to fob off, but somehow this seems not to be the case. What is happening instead is that these kinds of character traits are making it easier to piss us off when we get fobbed off.

Don’t get me wrong, we know we’re the subjects of a very little understood area of medicine. RMC, after all, has been seriously underfunded for a long time. This is the case, in my view, because it happens to women and you don’t die from it. But there is current, peer reviewed research going on, and its high time that all of the major centres of excellence got on the collaborative bus, put their egos away and started moving forward.

Trying a new procedure at a new clinic (after reading their research) is not the same as going down to the health food shop and loading up your basket with as many supplements as you can carry, because you read on line that they worked for someone’s sister’s cousin. But some top consultants think it is the same.

I’ve been told IVF won’t help me, and I understand my medical issues sufficiently to accept this and not spend my money going privately for that treatment. I have also read several published medical papers on NK cells and new research on the dynamic process of implantation, and I don’t think it’s b*llsh*t. So I’ve made informed choices about what I need and what is worth paying for. Yes, I have also heard anecdotal stories of success, too. But I’m not just getting recommendations on buying a fridge, so, although they’re helpful, I’ve looked at research with medical authority, too. I’m not a fool.

The Philosopher R.M. Hare, in response to the question of whether unfalsifiable beliefs were meaningful and rationally held posits the theory of Bliks. In this theory, he gives the example of a student at university who thinks that all of the professors are trying to kill him. Nothing will shake his belief in this. Even when the professors are kindly towards him, he thinks to himself, “Aha! They are trying to  lull me in to a false sense of security before they strike!” This Blik is clearly insane, especially because no amount of evidence will persuade him to consider changing his view.

I am concerned that there are a few Bliks mixed in with the egos at some RMC clinics. And who suffers? Women and their partners who are looking for help and answers. We’re intelligent enough to know the difference between medicine and ‘snake oil’. Treating us as if we’re not is extremely frustrating, and I’m sure that everyone in the RMC world, on both sides of the speculum would agree that feeling wound up isn’t (literally) going to get us anywhere.

A little collaboration would go a long way. Bury the rivalry, please.

Practical Matters – What Happens at St Mary’s and Coventry RMC Clinics?

This post is intended to help ladies (and their partners) get an idea of what to expect if you have been referred for testing at these hospitals. I’m writing for those who have miscarried for a third (or more) time, as you are now officially sufferers of Recurrent Miscarriage, or Repeated Pregnancy Loss. You are probably in a state of grief and disbelief that you have miscarried again, at the same time as being determined to find some answers. You may have a helpful and supportive GP; you may not. Even if they are supportive, you will probably need to chase things up a bit, because although there are a lot of brilliant things about the NHS, sadly admin isn’t always one of them. See this post for more information:

These are my experience of these two hospitals. Your experiences might be slightly different, but hopefully this will be helpful to you. If you are able to do so, get your local hospital (wherever you had your last ERPC, if you had one), to send away the tissue samples from that procedure, or any tissues you have been able to recover, for genetic testing. If you take them to the hospital yourself, DO NOT allow them to be stored in formaldehyde, as this will make genetic testing impossible. This advice is from Prof Lesley Regan’s 2001 book, which you may find helpful:

A note on genetic testing; you may be asked to sign a parental consent form. This may be upsetting, but it is necessary, so it is good to be prepared to be asked to do so. Results from these tests take about 6 weeks and the consultant will normally phone you to tell you the results and follow it up with a letter. This information is very useful in determining what has happened in your most recent loss, and what might be able to be done to help you carry a baby successfully to term in the future. The NHS offers this kind of testing after three miscarriages, although, if there is a reason to believe that there may be a genetic issue in your or your partner’s family (many people live perfectly normally with a balanced translocation of chromosomes:, then you might be able to get these tests earlier. Some hospitals will let you pay for these tests after 2 miscarriages, others will fob you off (I was told that they ‘didn’t have the right container’ after my second miscarriage, queue hysterical woman in backless gown – I always regretted not fighting harder for that one). You may be able to get your local services to order karyotyping for you and your partner, which will establish whether either of you have a balanced translocation that you may be passing on. Again, the results take about 6 weeks. All of this information will be very useful in determining your treatment plan for your 4th ‘try’, and your RMC clinic will want to take it in to account.

I was seen at St Mary’s last year (October 2013) and for the first appointment you will be scanned, medical history taken and lots of blood drawn. These are for clotting, thyroid and antiphospholipid antibodies.  You will need to go for a hot chocolate or something afterwards. You may wish to take your old notes and paper work copies with you if you have them, they may take some copies for your file. You may be invited to sign up for the TABLET test which is a study involving thyroid antibodies. Many of us donated a sample but were not used for the trial because we didn’t fit the criteria, but you might be, if you wanted to sign up.

If you need anything doing (hysteroscopy etc.) they’ll book that in. I had a septum removed, which was fine, like an ERPC with two coils and HRT for a month afterwards. It was a day procedure and not very painful. Things to consider for St Mary’s; they don’t allow partners on the ward, so you will be admitted and put in bed for the day and your partner sent away at 07:30 am and asked to come back at about 15:00 (they’ll call him). This is unlike other hospitals where you can wait together until it’s your turn. Take a good book. At St Mary’s, they also try to fit in as many operations as possible, which can mean that there is a long wait if someone’s procedure takes longer than expected. When I was there, someone was sent home and given a new date for surgery. This was obviously very upsetting for them. I think this is rare, however, and was caused by an earlier surgery of the day being more complicated than anticipated. It happens.

You might have a non-surgical procedure, or just the blood tests, so please don’t be worried that you’ll necessarily end up in theatre!

You’ll go back for repeat blood tests 6 weeks or so after the first lot and then have an appointment to give you all your results about a month after that. They’ll tell you what your treatment/plan will be and then you ‘go forth and multiply’ and call them when you’re pregnant again so they can do the TEG blood test again and decide whether you need anything for that, too, in a pregnant state, as it can change that result.

Many ladies have also been up for private NK (natural killer) cell testing with Profs Brosens and Quenby at Coventry. This costs £360 and you need to have had 2 periods before you go. They take a uterine biopsy and then advise what to do when trying again. Some people have told me that the biopsy doesn’t hurt. I found it quite uncomfortable both during and afterwards, but nothing that paracetamol won’t deal with. They usually recommend 200mg progesterone from CD21 to CD28, carrying on if you get pregnant, and then Heparin from ‘in uterine’ scan. If you have high NK cells, you may also be offered steroids, but other ladies will know more about that. I do know of at least two success stories from ladies who have been to this clinic.

The results of the biopsy take about 5 weeks and they will email you with the outline results and a time to call for your consultation. After that, you’ll be emailed a letter detailing your treatment plan. If the protocol doesn’t work within three months (as happened with me), they may suggest not using the progesterone until you get a positive pregnancy test.

You will need to not be pregnant for these procedures and tests, and hopefully the break from trying to conceive will help you to get your head around everything and heal emotionally.

I hope this helps some ladies (and their partners) to understand what tests they can expect at these clinics. Remember, 50% of couples never get a clear answer as to why this has happened to them. As distressing as this is (because we want answers), it’s actually good news, because it means that you have a very good chance of being successful without intervention in the future.

It can’t do any harm… the aspirin problem

There is a belief in the Recurrent Miscarriage community (medical practitioners and sufferers) that baby aspirin (75-81mg) can help prevent future miscarriages. The idea is that it thins the blood slightly, meaning that it flows more easily to the uterus, the placenta and the developing baby. This can be effective if the patient has a known blood thickening/clotting issue, for example:

  • the antiphospholipid (aPL) antibody and lupus anticoagulant – this test should be done twice, six weeks apart, when you are not pregnant

Antiphospholipid (aPL) antibodies are known to increase the chance of blood clots. These blood clots can block the blood supply to the foetus, which can cause a miscarriage. (from

St Mary’s, London, also perform the TEG test (, in which your blood is rushed to be tested straight away, while it’s still fresh to check for clotting disorders. I am due to have this test if and when I am next pregnant. If it is positive, St Mary’s will prescribe 150mg of aspirin.

Many people, health professionals and lay people, advise and would be happy to take baby aspirin ‘just in case’ because it ‘can’t hurt’, and, in the months leading up to MMC3, before and during my pregnancy, I took it daily. I know it thins the blood, because at one stage I was covered in it. But that’s another story. I don’t think it did me any harm (except for maybe enabling me to implant a chromosomally abnormal fertilised egg – I wonder whether it contributed to my uterine lining being ‘less selective’). Baby 3 died of Turner’s Syndrome, and nothing on earth could have prevented that (except, perhaps me being 10 years younger!).

Professors Brosens and Quenby at Coventry do not share the view that aspirin ‘can’t hurt’, in fact they argue that it can be a contributory factor in miscarriage because of the implantation problems it can contribute to. Their article is here:

Whilst it does not directly talk about aspirin here, part of their view is that many women with clotting issues mentioned above had perfectly normal pregnancies, so there must be something else going on. I haven’t seen the data, but that’s what they say. Instead, they recommend heparin injections during pregnancy, which they argue are more beneficial in promoting placenta formation and blood flow. I have been prescribed this for next time, also.

So now I am in the difficult position of having two potentially conflicting action plans from two different top RMC clinics, not to mention the reluctance of my GP to order the heparin injections without first referring me to a haematologist.

Lucky for me, it’s a moot point, for now! But I look forward (!) to arguing for my treatment plan with the top RMC consultants in the country the next time I am pregnant. Because that’s the kind of stress I will need at that point in time.

I’m not a doctor, and I don’t know whether aspirin helps or not. But it is clear that the jury is still out, and more research is needed. It may not prove to be as benign as some people think it is. It certainly does help some women, but my worry is that if that isn’t you, it could just hurt.

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Dr Google and fixing you in the real world

In February 2013 I spend a very upsetting morning Googling Asherman’s Syndrome on my phone in a hotel room in Yorkshire. It’s not something that I would recommend anyone do to themselves, ever. Yorkshire and hotels are fine, just stay away from Dr Google!

I had been referred back to UCLH for investigations due to my periods becoming very short and light, and I was getting a bit worried that this would lead to implantation problems, and infertility. I had had 3 EPCS and one hysteroscopy, so I wanted to be sure that no damage had been done.

I had been scanned on the Friday and this had revealed that I had an abnormally thin uterine lining (2.2mm, should have been 7mm). Everyone was very reassuring, and I felt that I was in good hands. A further scan had been arranged the following month.

Then I went up on the train to visit relatives for the weekend and stayed in overnight with my sister in a travel lodge. The following morning, I woke up very early and, not wanting to disturb my sister, I started checking stuff out on my phone; what was normal after gyne surgery; how long does it normally take to recover; complications after ERPCs; Asherman’s Syndrome…

Asherman’s Syndrome is a condition caused by gyne surgery and subsequent infection in which scar tissue adhesions grow and fill or block the uterine cavity by basically sticking the sides together. Symptoms include light or absent periods. Worse, one article suggested that the ‘base layer’ could be damaged and the uterine lining would lose the ability to grow. Permanently.

You can imagine that I had self diagnosed myself as incurably infertile by this stage and was beside myself with worry and anxiety.

After having a bit of a word with myself (and a text to tell me that I had used up all of my data allowance on my phone), and a bit of comfort from my sister, I tried to put it out of my mind.

I went back for a follow up scan at UCLH a couple of weeks later (inconclusive) and was booked for another one a couple of weeks later for further comparison. I felt I was in good hands, medically speaking, but I was fast losing hope of being able to conceive.

Then I got pregnant for the third time, and everyone breathed a sign of relief and forgot about the threat of the dreaded Asherman’s Syndrome.

Sadly, baby three was not for this world from the outset, as we would later discover (Turner’s Syndrome; another story for another day). After my referral to St Mary’s, I was scanned and was, again, told that my uterine lining was ‘abnormally thin’. There was also ‘something’ (possibly scar tissue) in there that would need further investigation. Another hysteroscopy was booked for three weeks later. I had gone to that appointment on my own for some reason (there were too many of them, I think my husband was on a course), and I had expected it to be routine, but when they told my that I needed more surgery, I burst into tears. I don’t know what I was expecting, but it wasn’t that. The dreaded Asherman’s was back on the table. The nurses assured me that it was a) only a possibility, and b) treatable, but it wasn’t a diagnosis I wanted to hear.

As it turned out, it wasn’t Asherman’s at all, but a birth defect in the form of a heart shaped uterus. Professor Lesley Regan removed the dividing septum in a straight forward procedure, I was fitted with two coils and given a course of HRT for a month, and I am now (as far as I know) as good as new, uterus wise.

It’s by no means the end of my journey, but it was nothing like as scary as Dr Google would have had me believe. I love information, and do still do research online. But, a lesson has been learned about letting the internet take my imagination and fear to some insane places. For the moment, at least…

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Full time administrative assistant required

I think the NHS is a brilliant institution. I have found, almost without exception, the staff to be kind and sympathetic. OK, so there has been the odd sonographer whose dropped a clanger of a comment (“there should be a baby there”), but, really, who really knows how to do small talk in these kinds of situations?

After my repeat ERPC (Evacuation of the Products of Conception) after my second Missed Miscarriage (MMC), I was so weak, having lost a lot of blood, that a nurse had to hold me up as I nearly passed out in the toilet. The care I have received has been of a very high standard. Not to mention the excellent selection of opiates and the fact that it’s free at the point of care. I am very happy to live in the UK, and to have access to such services.

The admin, on the other hand, is sometimes, frankly, bonkers.

Point 5 of the Mumsnet Miscarriage Code of Care ( is joined-up care. Three times I have had to text the community midwife to say that I will no longer be needing her services. Three times.

To be fair, most of my hospital notes have been sent on to my GP. UCLH ( is particularly efficient, always writing up the letter whilst you are there, giving you one copy and putting the other in the post. Most of the info from clinics at local services got to my GP, too.

Sometimes letters arrive months after the appointment has taken place (I apparently had low vitamin D in October 2013, and got my results letter in March 2014). In one spectacular admin triumph, I once received 4 identical copies of the same results letter from St Mary’s, London.

After MMC 3, I wanted to be referred to St Mary’s without delay, because I knew that there would be a wait, and I wanted to get on with it. It was not a problem to get my GP (who is excellent) to agree to refer me, but the system just couldn’t cope with a non-local referral. After several letters asking me to choose one of four local hospitals and a lot of emails and phone calls, I finally got my St Mary’s appointment. But I had to work hard to make it happen in a timely manner.

My (and Mumsnet’s) point is this: women after MC are traumatized and vulnerable. They do not need to spend weeks/months researching their options, making phone calls and chasing emails. They shouldn’t have to call local services to tell them that their baby has died, and they certainly (and I am so lucky and glad that this has not happened to me, but I know plenty of women to whom this has happened) should not have to suffer reminders about routine scans. Sometimes it seems that the NHS grinds under the weight of its own admin and procedures. Individuals are lovely, but the dots don’t join up.

What I can tell you is that, at the moment, if you want joined-up care, you’d better get ready to be your own secretary until it’s sorted. Chase every results letter, ring and confirm every appointment. Find out the names and numbers and email addresses of every consultant’s secretary. Be the squeaky wheel. You may wait a long time, otherwise.

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The Facebook baby bomb

Social media is fun, right? Are you having fun yet?

I like Facebook. A lot. It’s fun to share status updates about what your dinner looks like, your cat in a box, and so on. We love it.

But sometimes Facebook can ruin your day. I’m taking, of course, about the MC-er’s dark nemesis: The 12 week scan photo. It catches you unawares; it won’t go away, no matter how many times you click ‘I don’t want to see this’ (go on, ask me why…). Even if you do get rid of it from you news feed (normally by un-following or de-friending the person concerned), it comes back again as friends ‘like’ and comment on it.


Of course, I’m not saying that people can’t share good news. Social media is a fantastic way to keep in touch with people in a weird active/passive way where you let the congratulations come to you. And it’s lovely to feel warm and loved. In fact, some of the biggest outpourings of love and support I have had have come from the Social Network. It’s the picture I can do with out.

Maybe it’s because I’ve never seen a baby shaped baby on a scan (MMC 3 had a discernible  head and arms at the 9.1 wk scan, and I swear I saw those arms wiggle. Although it might have been wind/hysteria). Maybe it’s because I’ve seen more ‘bad news’ scans than good, and I’m slightly traumatised by those grey, grainy images. Maybe I’ve just turned into a jealous old cow.

Whatever. The Facebook scan photo baby bomb turns a nice day into a bad day, and it comes right into your personal space without warning.

This excellent blog entry sums up very well what the FB baby bomb can do to a (mostly) sane woman:

And I’ll tell you what, Facebook. I’ll stop posting pictures of the cat when you stop baby bombing me. Do we have a deal?


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The things we do

Tomorrow I’m going to put my body through a tough physical ordeal. I’m going to swim 2 miles in open water ( for Tommy’s the baby charity ( I am quite apprehensive about it, to say the least.

Ever since I joined the unfortunate Recurrent Miscarriage club, I have felt compelled to engage in a range of what some might call ‘extreme’ behaviour (from the little reading I’ve done, people who have suffered trauma tend to do this). The lack of autonomy that any long term illness causes does make seems to make people want to do something to take some of the control back. So I swim. Outside. In lakes and waterways. Don’t misunderstand me, I enjoy it very much. But tomorrow’s two miles will be a challenge.

I want to write today about the part of my journey that took swimming away from me.

In May 2012 I had my second missed miscarriage (which I really didn’t see coming – I had, rather foolishly, believed people when they told me that I was unlucky, and it was very unlikely to happen again. Idiot.). The baby was showing no signs of coming away naturally, and so an ERPC (eugh phrase) procedure was booked for the next day. I’d had one of those in November 2011, so I knew what to expect. The procedure was uncomplicated, and I returned home to watch daytime TV and eat chocolate ice cream (not actually prescribed by the NHS, but helpful in their own way).

Two weeks later, I was still bleeding, quite heavily. I was still getting positive pregnancy tests. It was, as you can imagine, quite distressing. I put my mental recovery on hold while we tried to sort the physical stuff out.

After 5 weeks of ‘wait and see’, my GP sent me back to the EPU for another scan. There was some comparing of notes from my file and lots of to-ing and fro-ing. What was that mass?


A second ERPC was booked and a further scrape was done. You may be surprised to learn that these procedures are undertaken blind. Yes, that’s right. The surgeon CAN’T SEE WHAT THEY’RE DOING. This time, I lost a lot of blood (I’m not crying incompetence, I was red-raw inside and infection was taking hold. They wanted to make sure they got everything this time; it happens). I spent the day on the recovery ward having my bloods checked. Amazingly, because I am reasonably fit and active, I recovered well (thank you, swimming).

But it wasn’t over yet. I continued to bleed. We returned to the hospital again and this time saw the top consultant for a hysteroscopy (procedure where they take a look using a little camera). The mass was back. It couldn’t be removed for fear of causing damage (the dreaded Asherman’s syndrome, where scar tissue fills the uterus, and can lead to infertility). This wasn’t the news I was hoping for.

At this point, my local hospital referred me to UCH in London so that someone else could have a look. I must say that the EPU in UCH is like the Disney Land of EPUs. Its set up so well and everyone there is really great and taking care of you. More on them another time. On this occasion, I was scanned by 2 consultants who diagnosed retained products and booked me in for another ERPC in a few days time. I was blooded and consented and ready to roll.

The next day, I received a phone call from UCH, could I come back in NOW, the top consultant wants to have another look. So (not panicked at all), I returned to London. This time the plan was more conservative. What I had was a massive blood clot. My poor uterus (not following the stoic example set by the mind) had given up and simply couldn’t be bothered to heal. This was quite common and is sometimes observed in breast feeding mums, I was told. Its hormonal. Your body doesn’t know what to do and has given up. I was prescribed 2 weeks of HRT, which kick started the whole cycle and two weeks later I was back to ‘normal’.

I was, obviously, unable to swim (certainly not in lakes and waterways) for the whole summer. Gutted.

I shall have to remember how much I missed it when I’m half way round Alton Water tomorrow! (My DH is also fundraising for the same cause by riding the London 100 in August, hence the shared page.)

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Another frustrating day…

This is an entry I posted on a particularly soul searching day back in March last year. I’m reposting it here because I’m closing my other blog down.

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One 30 something woman

A couple of weeks ago I went for an ultrasound scan. How very exciting! Sadly not. This was the 6 month check-up following a Summer of disasterous adventures in what happens when a miscarriage goes very badly wrong. Yes, it’s true. My second missed miscarriage in 6 months turned me from the 1 in 5 to the 1 in 100 and beyond as I exhausted the gynaecological expertise of an entire hospital.

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Losing my innocence

The statistics tell us that as many as 1 in 4 pregnancies will not succeed, but that knowledge doesn’t make it any easier if miscarriage should happen to you. What you do get is a crash course in the using the NHS (mostly good, occasionally strange, sometimes frustrating – the admin is frequently bonkers).

My story has been going on for almost three years, and it isn’t over yet. I want to tell it in the hope that a) I get it off my chest, and b) share what I have learned in the hope that someone, somewhere might find it useful. Maybe even inspirational. If you’ve found this blog because you’re going through miscarriage, I’m sorry for your loss, and I hope you find something of use here.

So, here’s the first installment.

In November 2011, after one (one!) attempt, I tested negative on a HPT the day before going on holiday. I went on holiday, and experienced a weird, rather spotty period. It didn’t seem to stop after a week, which was a bit odd, but it did eventually wear off, so I forgot about it. Then, a week later, I was playing in an indoor just for fun badminton league when I noticed I was feeling slightly nauseous. We were off out to a birthday party that night in a pub, and I was planning to drink, so I decided to do another HPT just in case. I wasn’t expecting it, but, guess what? It was POSITIVE.

I can’t tell you; I was in shock. My DH was in shock. We immediately drove to Sainsbury’s for a digital HPT which confirmed that I was 2-3 weeks pregnant. We went to the party. I drove. When they got the birthday cake out, I ran to the toilets and threw up. That was the last normal pregnancy related thing that happened to me.

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