St Marys Recurrent MC clinic experiences?

[ZxrH888]

Hi everyone

I am currently under the care of professor regan at St Marys following a second trimester MMC in January, Ive had the 3d scan and blood tests done - and so far only found a slight abnormal TEG test reading.

I am currently 11 weeks and on Aspirin and Clexane due to the TEG results but absolutely terrified of having another loss.. I started bleeding bright red then mixed with dark brown around 9 weeks its on and off and scans show baby is fine womb looks fine - so far its been put down to the blood thinning medications. Strangely i found injecting away from my tummy has resulted in no bleeding.

Just wanted to ask if any has been under this clinic and had successful pregnancies?

Yes, I have, many years ago now. To be honest, I can’t remember the ins and outs, I think they never found anything wrong but I was prescribed progesterone and I was also independently having acupuncture.

Hi, thanks for sharing your experience. I had a miscarriage at 14 weeks 5 days earlier this year and am under St Mary’s RMC. I’ve had the bloods and US done and have the PAI-1 4G/4G mutation. Now awaiting the TEG to see how much it is actually impacting my clotting in real life. I’ve found Prof Regan and her team to be great so far, very thorough. It’s also reassuring to hear you have been given treatment based on your TEG being borderline. I don’t want to take any chances next time I’m pregnant and would definitely want treatment if my TEG shows any indication of clotting issues. I’d be really interested to hear about your experience as you go through your pregnancy under their care. I wish you a healthy and happy journey!

Hi!
So sorry for your loss!
I "graduated" from the RMC clinic last week and had my last appointment. They have been fabulous so far, I was given a clear plan with my medications and so much reassurance. I was having scans every 2 weeks until 12 weeks - and now under the care of the hospital I'm registered to for my maternity care (Queen charlottes and chelsea - they fall under the same NHS trust). 12 week scan was perfect now just praying I can make it through the second trimester without any complications🙏🏽 So far I haven't had any more bleeding episodes thank god. Im currently 13 weeks🥹 Will update this thread as I go along xx

Hi, thanks for your reply. That’s so great to hear about your positive experience at St Mary’s, scans every 2 weeks is so reassuring! I wish this was standard care. Amazing to hear you’ve now moved through the 12 weeks of support :)! How do you feel about ‘graduating’ and moving over to Queen Charlottes and Chelsea? Can I ask about the process with TEG, did you have another test done at 6 weeks? My TEG came back normal, but the clinic said we need to retest when I’m next pregnant around 6 weeks to see if it changes due to the PAI-1 4G/4G I have. With the medications have you finished those or do you continue any now you’ve transferred? I got the impression that if I needed heparin injections I would need them throughout a future pregnancy. Wishing you a safe and an uneventful 2nd trimester journey and it would be great to hear how you get on!

Thank you❤️
I'm super anxious as expected but Queen charlottes EPU have been great too and happy to see me when I call in for reassurance. So a TEG test was done for me before i got pregnant, and they retested again once I told them I've conceived. In my case the results were the same both pre and post pregnancy, so I was put on Aspirin 150mg until 36 weeks and clexane until 20 weeks at least (They've said at my 20 week scan they should do the doppler scan to check placenta function and then make a decision on continuation of clexane or if I should come off it). This has made me quite nervous tbh - as much I hate the clexane I feel its safer to continue. I read professor regans book 'Miscarriage - what every woman should knows' and she states normally its continued until 34 weeks.. when I bought this up with them they said as I dont have any clotting disorder it may not be necessary as the placenta function is well established at that 20 week mark. I'm due to see
my consultant as my antenatal care is consultant led so will push to be kept on it for peace of mind - if its not doing any harm why take the chance to create a problem.. I've also been under the prematurity team given my last loss who saw me at 11 weeks and will see me every 2 weeks going forth and they're happy to keep me on progesterone througout, they are also doing cervical length checks regularly and offered me a cervical stitch although they dont feel i have cervical incompetency. So far it feels like all bases have been covered so just hoping everything works out ok this time😭

thank you so much for your detailed reply. I can imagine the anxiety, I know I will feel exactly the same when my time comes. I’ve started TTC this month and it’s bought up a lot of mixed feelings. But it’s reassuring to hear you are receiving good care and being looked after well. It gives me hope.
Great to hear you had the TEG when you were pregnant and they were able to start a treatment plan right away based on the results.
I’ve also read Professor Regan’s book and found it hugely insightful. You are right to advocate for yourself and question decisions about your care. It’s something I wish I’d been able to do in my pregnancy, but I was so naive and didn’t have any of the knowledge I have now. I completely agree that if if it isn’t doing harm why take a risk to stop it. I want all angles covered.
Can I ask what the process was with the pre-term specialist team you are now under? I’ve been speaking with the Guys Pre-term Birth Clinic given my previous loss was at 14+5 and would also like to be under them in a future pregnancy when I graduate from the St Mary’s RMC. How did you go about moving your care? Were you in touch with the pre-term birth specialists from the start of your pregnancy? Thinking of you and hoping everything is still going well for you and you are moving through this pregnancy positively 🙏

The Clinical nurse specialist who saw me at the RMC referred me to pre term clinic after I voiced concerns regarding incompetent cervix, during my first booking appt the midwife also agreed that it would be best for me to be reviewed by them. So I had the appointment booked in early on but they saw me once I reached 11 weeks for my first appt. Queens charlottes is under the same trust as St Marys so all the information was on the same system and accessible by whoever I'm due to see. Thank you so much, Im now 15 weeks - will update as I go along :)

Hi everyone, thanks for sharing your experience with St Mary's.

I'm on the waiting list and not sure what to do re trying to conceive in the meantime, but also dont want to waste time. Do any of you have an experience to share re turning up to your first appointment pregnant, and if they keep seeing you in this situation?

TIA xx

Hey Tia, they advise not to TTC while undergoing investigations as they can’t do certain tests when you’re pregnant. If you do get pregnant I think you wouldn’t be able to go ahead with the appointments. The base tests they do are bloods and a 3D transvaginal ultrasound, which of course can be done while pregnant. But if you are pregnant the results of the ultrasound will be different because even at an early stage the whole uterus changes and certain things won’t be able to be seen as clearly. Also depending on the results of the transvaginal ultrasound they may recommend a hysteroscopy and that couldn’t be done when pregnant. But completely appreciate you wanting to try in the meantime as the waiting lists are so long and the waiting feels impossible. I got a private 3D ultrasound done as I hoped it would speed things up it was approx £300. I found out that I had RPOC from the private scan and ended up having a really long recovery so I wasn’t able to try to conceive for months after my miscarriage as a result.

Hi!

I would hold off for the initial investigations at least (bloods and 3d scan) - this is what I had done, and then they suggested a hysteroscopy to check my womb but I fell pregnant before this could happen so they put me under the care of the early recurrent m miscarriage clinic. Also depends on your circumstances. I have had one MMC at 16 weeks, no issues picked up on 3D ultrasound or bloods so I felt like I didn't want to waste time waiting x

Hi, how are you doing? Hope your pregnancy is progressing peacefully.
I just found out I’m 4 weeks 2 days pregnant. Feeling cautiously optimistic! I think St Mary’s said they would repeat the TEG at 5 weeks pregnant is that what they did for you? When did you have your first scan was it 5 or 6 weeks? X

Hii, congratulations!! ❤️ I'm now 20weeks and everything's going smoothly😊
Yes they repeated it at 6 weeks for me and I then had scans every two weeks with them up until 12 weeks which was so reassuring. I had seen my local EPU and started on progesterone at around 5 weeks for spotting before the St Marys appointment.

Ahh that’s amazing to hear! I’m so pleased everything is progressing smoothly for you ❤️
I feel like the next 2 weeks waiting for my first scan at 6 weeks are going to be the longest of my life 😂!
Just wondering if you are based locally/in the catchment areas for St Mary’s/Queen Charlottes? I really want to have my midwifery care there but I am in SE London and not in there catchment area so I can self refer. Trying to see if my GP can do this for me as it would be so nice to have all care in one place.
I’m so reassured hearing your experiences with the care!

Honestly those first few weeks felt like an eternity for me too, but now it feels like time is flying by too quickly!
I am based locally, I live around 15mins from QC 😊 I wouldn't worry too much about the handover of care as they send all the plans etc to your registered maternity hospital and you should be able to contact them quite easily with any queries. Wishing you a safe and uneventful pregnancy❤️

Sorry I think I wasn't clear; does anyone have experience of turning up tot he fist appointment pregnant? I still have a few cycles before being seen nd it feels like wasted time; but would be more annoyed if I then got chucked off the list with no early pregnancy care or investigations.

Hi, I understand the frustration with waiting (I waited 6 months for the initial consultation), but they made it clear you musn't be pregnant or you'll be discharged. As hard as it is I would recommend waiting, as those initial investigations rule out so much and can give you peace of mind for the next time. Once I had all the testing and results I started TTC as I wasn't wanting to do the hysteroscopy as I felt confident it wasn't an issue with my womb in my case. So by the time they offered me a date for the procedure I emailed the secretary saying I'm already Pregnant - who then redirected my care to the early recurrent miscarriage clinic and they took over my care.

Hi @ZxrH888, how are you doing? I just had my first scan at St Mary’s and started on the Enoxaparin injections. Any tips on how to make the injections less painful?!

Hi!
Im doing great thank you! 23 weeks tomorrow🥳 I hope everything's going smoothly for you!
Glad to hear youve been seen! Ive tried the icing beforehand trick but to be honest its just find the good spots, I tend to prod around until I find somewhere that doesn't feel too sensitive and then go ahead and inject. For me its always less painful in the lower abdo region closer to love handles. Try injecting slowly so it doesnt feel too intense, I feel like I've been on them forever and to think I was very needle phobic! You get used to them after a while. Are you on aspirin too?

So pleased to hear that! Amazing news :)
I’m doing ok, it’s still very early days as I’m only 6w2d today. I measured a few days behind what I thought based on my ovulation date. But felt very relieved we saw a strong heartbeat on Wednesday at 6w0d! Really hoping this pregnancy sticks and progresses smoothly.
Im on 20mg enoxaparin and 75mg aspirin daily. I got my husband to inject me yesterday but we are at our friends for dinner tonight and I don’t want to tell them the news yet so I’ll have to inject myself sneakily in the toilet! Wish me luck haha!

I got pregnant when I was under St Mary’s! I’d been referred after three recurrent miscarriages but had already had quite a lot of the standard tests done privately. I think I’d only had my initial appointment with them when I found out I was pregnant, but they were great - they prescribed progesterone and I had fortnightly check ups and scans until I was discharged at 12 weeks. DS is now 3.5 and I’m 28 weeks with baby 2 ☺️

Hey @ZxrH888,
just checking it to see how you’re doing! I hope everything is still going well for you! I just wondered when you stopped with the clexane injections and aspirin, was it at 26 weeks?

Hi!
Thanks for checking in😊
Currently 36 weeks and scheduled for induction at 38 due to GD, i've only just stopped now at 36 weeks (They wanted me to stop clexane at 20weeks following doppler scan but I wanted to stay on it for peace of mind so carried on both aspirin and clexane and stopping at 36 weeks). Hope all is going smoothly with you!