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: https://justonemoretimeagain.wordpress.com/2014/07/04/full-time-administrative-assistant-required/

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: http://www.amazon.co.uk/Miscarriage-What-every-Woman-needs/dp/0752837575/ref=sr_1_3?s=books&ie=UTF8&qid=1409471375&sr=1-3&keywords=lesley+regan

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: http://miscarriage.about.com/od/twoormoremiscarriages/p/balancedtranslo.htm), 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.

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2 thoughts on “Practical Matters – What Happens at St Mary’s and Coventry RMC Clinics?

  1. Thanks very much for this post. I’m had three miscarriages in a row and am now waiting to see if I can have IVF or if i’ll be referred to the RMU, so this is really helpful to understand what will happen. Thank you for sharing xx

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