Let me start off by apologising for being such a bad blogger. I haven’t posted anything about what’s been going on around here for far too long, and for that I’m sorry. But I hope this update about us going for Natural Killer Cells testing makes up for my absence.
The main reason for my silence is due to things being pretty quiet around here on the TTC front since the last miscarriage. We’ve been waiting for appointments, scans and procedures and then results and from said scans and procedures. I figured it would be easier to do one blog about it all rather than in dribs and drabs.
I’ll just briefly catch you up on what’s been happening since February.
I eventually had an MRI scan of my pelvis to find out once and for all whether I have a womb abnormality. After weeks of waiting and lots of chasing up, I finally got the results – no unicornuate uterus for me. Everything is completely normal!
In April, we had a routine follow up with our recurrent miscarriage Consultant to go over all our test results and plan where to go from here. Every test we have had done so far has come back normal. Unlike, our last few appointments which were very short and sweet, she became much more proactive and invested in us. She spent time checking over results and looking at what options were left to try. She decided it might be a good idea to perform a hysteroscopy. This is a procedure which involves a camera in your uterus, by doing this they can look at the lining of the womb, check for septums, scar tissue and look at your Fallopian tubes. I had the hysteroscopy in July, and you guessed it… more normal results. Everything looks fine and dandy in there!
Referring to Coventry
After the last miscarriage in February, we decided to refer ourselves to the Tommy’s miscarriage clinic in Coventry which is part of their National Centre for Miscarriage. We were specifically interested in Professor Quenby’s clinic which looks at Natural Killer Cells. I’m not even going to try and explain what these are and how they cause miscarriage. There’s a brilliant article written by Professor Jan Brosens from the national miscarriage centre which explains all about natural killer cells far better than I can. Definitely worth a read!
To self-refer to the Natural killer cells clinic you first need to monitor for ovulation. Once you get a positive ovulation test you contact the clinic to let them know and will then get an appointment to be seen within the next 7-10 days.
I began monitoring my cycle a few weeks after the miscarriage to figure out where I was up to and to my surprise, I actually got a positive ovulation test about 4-5 weeks later.
Excited and eager to get to Coventry and crack on with finding answers, I emailed straight away. When I got an email back a few days later, I was disappointed to learn that the NKcell testing can’t be done if you have miscarried within the last two months. I needed to wait until after two natural periods before I could go. Trying to be objective, I reasoned it gave me a good 2-3 months to save up the £540 for the tests (gulp)! It might seem a bit steep but for your £540 you get: a consultation with Professor Quenby or Professor Brosens, two NKcell biopsies and then a telephone consultation to discuss your results.
For anyone interested in the NKcell testing, here is the NKC clinic leaflet with all the information you need.
First consultation
We went for our first appointment in June and met Professor Jan Brosens. After taking note of our pregnancy history and investigations, Prof Brosens sat back and explained all about the mystery of miscarriage. He said that miscarriage is biology, a result of the body’s natural quality checks on a developing pregnancy. He explained that every embryo is unique – if something isn’t right, it will be rejected and miscarriage occurs. Every cycle, the lining of the uterus is also unique. If the structure of the lining is poor, a fertilised egg can’t implant and develop well, therefore results in miscarriage. A successful pregnancy requires both the embryo and the uterus lining to both be perfect at the same time (I seriously wonder how people get pregnant and stay pregnant at all!).
Martin and I could have listened to Prof Brosens talk all day, we found him fascinating. The way he so knowledgably and yet simply explained miscarriage just clicked with us. He validated miscarriage being so common with physiology rather than cliches. His words and manner were hypnotising, we instantly felt so much more hopeful and confident.
After the consultation, we went to get our biopsy taken. First they do an internal scan (actually lost count how many of these I’ve had) to check the lining of the uterus is thick enough to obtain a good sample. Then, similar to a smear test, they take the biopsy. I won’t lie, it was quite a bit more uncomfortable than a smear, it feels a little cramp like. The sample is taken by doing an endometrial scratch on the lining of your uterus and takes 10 seconds to obtain (but feels like 30). After this, we were free to head home and await our results by email within 4-6 weeks.
Second consultation
We returned around 5 weeks later for our second biopsy. After a stressful and delayed train journey (anyone who follows me on Insta may remember the cows on the train line instastory), we met with Prof Brosens once again. He checked our last results and gave us some recommendations for our next pregnancy before we headed off for our second biopsy.
His recommendations were to start using progesterone pessaries about a week before I am due to take a pregnancy test or expect my period. If I have a period, I can just stop using the pessaries. If I get a positive pregnancy test, I should keep using the pessaries up until around 12 weeks. He has also suggested it could be beneficial for me to be on heparin injections once pregnant, something our miscarriage Consultant has suggested too.
Our Results
Below I’ve included our NKcell biopsy results… normal. Well there’s nothing like a bit of consistency, hey?
Going to Coventry has been costly, but it has been 100% worth it and we are so glad we went. We may have walked away no closer to finding a cause for our miscarriages, but we have gained confidence and feel inspired by the professionals we have met there. There’s some promising results about endometrial scratches and recurrent miscarriage coming out of Coventry’s research, and we have had two! This could just be all that is needed to help the next pregnancy stick around. If so, then it’ll the best £540 we’ve ever spent!
After the last miscarriage we were driven by the need to find answers. Surly so many recurrent losses couldn’t be for no reason? We felt as long as there was a test or investigation to be done, we had the strength to keep wading through this shit storm. However, 6 months on and three more ‘normal’ investigations later, we have accepted that we may never find a cause for our miscarriages. And you know what, I think we are ok with this. We are free to just crack on, keep trying, and hope that the universe gives us a flippin’ break!
I adore you Sam. ? Xx
I experienced 3 miscarriages within about 13 months from June 2015 to July 2016. I then had most of the tests you describe but didn’t get around to doing the NK cells.
I’m currently 26 weeks pregnant and I was on the progesterone pessaries (til 13 weeks) still on high dose folic acid, aspirin and clexane (blood thinning injections) until around 36 weeks.
I was ready to give up even after the recurrent miscarriage appointments as all said everything was “normal” and I was just very unlucky- I hated this as I work in statistics so it really annoyed me. I don’t mind them saying it is unexplained but just down to luck I don’t think so. We already have a daughter who’s 4 so they claimed that automatically meant everything is fine.
When I found out I was pregnant this time a week after my last recurrent miscarriage appointment I didn’t for a second imagine I’d get this far but something seems to be working… best wishes.
Thank you for sharing this. I’ve thought about doing the NK cells testing, too. Waiting for our referral to the recurrent miscarriage clinic near us, but maybe after that we will look into this too.
Hi Jennie, I’m so sorry for my delay in responding. I hope you have had your referral to the recurrent miscarriage clinic and you are doing ok? Whilst we didn’t discover anything by having the NKcell testing, I’m glad we did it. It helped us knowing we had done and tested for all we could, and mentally helped us find some peace in the knowledge that there was nothing stopping us from having a baby – except for sheer bad luck. And now we are weeks away from our rainbow being here. Hopefully this long and difficult journey will have been worth it. Wishing you all the best. Lots of love. xxx
Hello,
My names Jennifer Ward. I just had to write and say don’t give up. And don’t give up on The NK cells testing. I was in a similar position to you. I had had 4 miscarriages and thought I would never be able to have a child. I too exhausted all avenues on the NHS. And even went private to get the NK cells tested. Everything came back normal. I was at a loss. Then I started researching some more and came across a consultant called DR hassam Shehata. He is a leading and pioneering professor in miscarriage and NK cell testing. Basically there are many different types of NK cells that affect different parts of your body. I had been testing for the wrong kind! He told me at this moment in time he was one of the only people in the country that test for this and has nearly a 90% success rate. I only had to have a blood test done (well lots of them!) and it got sent off to America and I got the results back Within a couple of weeks. It showed I had high NK cells! I was put on a course of steroids for the first 14 weeks of pregnancy (starting at ovulation) also aspirin (for blood clotting disorder factor 5 Leiden) and progesterone pesseries for the first 16 weeks. The steroids basically stops the NK cells for attacking the baby. I beg you to google Mr Shehata and make an appointment. You might have to wait a while to get one ( I had to wait months because he is so popular) but it was so worth it. He changed my whole world and I owe my healthy beautiful son (now 20months) to him. The tests are expensive I’m not going to lie, but I felt he was my last hope. When I turned up at his clinic I always saw pregnant women and women coming in with their babies…..all because of him. He was even on the news once because he had helped a women who had 20 Misscarriges. He is really trying to get this testing recognised by the NHS.
Please feel free to message me if you want to talk further about this. I just felt really strongly in my heart that I had to contact you and tell you.
Kind regards,
Jenny
Hello Jennifer.
Thank you so much for your kind and encouraging comment. I apologise for being so slow at replying.
I am so pleased to hear that after such a difficult journey, you finally have your rainbow. Just after receiving our final NKcell test results, we found out we were pregnant! We are now weeks away from our rainbow being here. I’m not sure exactly what has worked – whether it’s the endometrial scratches from the biopsies, the various medications I’ve had to take, or whether this little one has done it on their own. But whatever it is, i’m so thankful. It’s just so surreal to be prepping for their arrival!
Lots of love, Sam xxx
Hi Sam, great to read your blog and hear your positivity. If you have had the NK cells testing at Coventry, then you definitely don’t need to have testing done with Dr Shehata.
I’m also being treated by Coventry and am currently on their progesterone, prednisolone and heparin protocol.
I hope it works out for you and your husband soon. Wishing you lots of luck.
Hi Laurel, Thank you for taking the time to read my blog post. I hope you are doing ok, are you expecting your rainbow soon? I used progesterone and heparin as per recommendations from coventry, and am also taking aspirin as per our own consultant back home. We are now just weeks away from our rainbow being born. Its been a long and difficult road, but the light at the end of the tunnel is finally in sight. Sending lots of love and luck to you. xxx
Just interested to see what happened next. I’ve just had the first biopsy and wondering whether to bother with next one. Will just one have a positive effect?
Hi! So sorry for the slow response. I would suggest discussing further testing with your consultant based on your first biopsy result and how they do their testing, as testing may vary from clinic to clinic. I had two biopsies because thats how the Tommy’s clinic we went to does their testing due to it being part of clinical research. It required two biopsies because they compare the NK cells from one cycle to another. Both of my biopsies came back with ‘normal’ NKcell levels, so no treatment or further investigation was required. Wishing you all the best, xxx
Hi thank you for your blog we are currently having the biopsy done at st Mary’s after 7 miscarriages and having the hysteroscopy done to I’m like you and so far there has been no reasons