Recurrent miscarriage support

[whatsgoingon22]

Hi all,

Just wondering if anyone can help or offer any advice or support.
I’m 99% sure I’m in the process of my third consecutive miscarriage in a year😕. Pretty grim- they all start with few pregnancy symptoms and brown discharge/spotting and it goes down hill from there. I seem too fertile as I get pregnant easily but they just don’t stick 😞. They have been missed m/c also.
It’s time we went and got some help at a private clinic as I can’t bear waiting forever on an nhs waiting list. Does any one have any suggestions in or around London (I’m Surrey based) for a good recurrent miscarriage clinic/fertility clinic that would start from scratch and take an overall look at everything? I’ve been reading a few different places and some appear more specialist in certain areas I guess we need to try and identify the actual issue before we specialise. If anyone has experience what tests would you recommend etc? Or any general advise etc Thank you x

Hi @whatsgoingon22 I'm very sorry for your losses ❤️ I've recently had my 4th loss and already had nhs tests which haven't shown anything abnormal (I've actually had 2 losses whilst under a Tommy's clinic and they've just told us to keep trying). We've decided to go private to see Dr Shehata who is based in Epsom, so very close to you (I travel from the Midlands). I saw him for my first appointment last week and have my follow up next week with my results and hopefully a plan. He focuses on immune factors for recurrent losses and looks at preconception. He is expensive, but I'm hopeful he can help us. If you look up the CRP Clinic, it's got all the details of the tests he offers. X

V sorry you’re going through this.

Some years ago now I went privately to St Mary’s clinic in London: v thorough investigations and good, considerate service.

At that time I ruled out Dr Shehata as the immunological stuff was unproven and wanted to try ‘mainstream’ first.

Apart from invasive tests, the ‘karyotyping’ ones on you and your DP were costliest, so would pursue NHS referral to save money on those alone!

Another often mentioned Dr on fertility forums back the. was Dr Siobhan Quenby, but think she was in the midlands back then.

Hi @Dozer I'm sorry you've been through this too ❤️ Professor Quenby is in Coventry - I've actually got an appointment with her at the end of the month. She works a lot on clinical trials. I have been waiting to see here for quite a while.

We had the parental karyotyping done, we were told that the nhs only usually do this after you've had 5, but they relented and agreed to do it after my 4th.

My experience is the nhs seem to have a protocol if you have aps / sticky bloods but if you don't, they do nothing (I think other recurrent mc clinics will try medical interventions but mine doesn't. Its also a national research centre and we've not been offered a trial either). My clinic wouldn't even prescribe progesterone until I'd had 4 losses - despite their own research saying that it can help for 3+ losses. I got it as I'd been to the implantation clinic in Coventry and saw professor Brosens for the nk cells test, which was normal but it could help me, it didn't so I know I need some more tests. We're waiting for the karyotyping for the baby but that takes a while and will only really tell us about that pregnancy. The nhs do feel that the babies were genetically normal though. And even if it was a genetic issue, the likelihood of that being the reason for our other 3 losses is statistically very unlikely.

I don't think there is a right or wrong way to go @whatsgoingon22. I would say try and have this pregnancy tested if you can. We feel like we're trying to rule things out now. I heard about Dr Shehata over a year ago but it's only after my recent loss we decided to go because nhs and private nhs testing have found nothing wrong with us, but we're at the stage where we can't keep doing the same thing and hoping for a different outcome - we've been told by the nhs to do just that.

Best wishes xx

@whatsgoingon22 I am also in Surrey and just had my third consecutive MC.
I had lots of tests done privately after MC2 and have been prescribed progesterone, low dose aspirin and fragmin as soon as I know I am pregnant. Despite all this I still miscarried two weeks ago. Now my fertility consultant is saying there are no further tests I can have. At a loss how
to continue from here.

My GP has referred me for NHS treatment but I have not heard anything yet.

Thank you all for taking time out to reply and so sorry for all of your losses😔
I had my scan today and I should be 6wks 3 days but measuring 6 weeks with a very slow heartbeat- barely visible. The sonographer and nurse basically said to prepare for the worst...... again😢its heart breaking and so unfair. I feel a little numb this time.
@VenusStarr does Dr Shehata mainly focus on NK cells?
@Dozer hope you don’t mind me asking but have you gone on to have a successful pregnancy since? Were you with St Mary’s at the time?
@AdriannaP it’s so so unfair. Which hospital are you with? I’m at East Surrey 😕
I am with you, I feel completely overwhelmed by all the possible routes and options. I don’t know where to start. I know NHS will make referral for me now after 3 but I know it will take forever.
@dozer @VenusStarr how do you know who to go to/which specialist clinic when you have no idea what the cause might be? I’m assuming this will cost thousands for testing?
For eg I don’t want to go Dr Shetata and he only focuses on one specific cause and it’s not that and you have to start from scratch again somewhere else. I’m 34 and know there’s no quick fix but I guess I don’t want to waste any more time either.
Dr Quenbys trials look very interesting especially as I get pregnant very easily but I don’t know how viable it will be to get up and down to Coventry 😭
Thank you and love to you all xxxx

@whatsgoingon22 it's really difficult. I have had the nhs standard tests via my Tommy's recurrent miscarriage clinic - they test for lupus anticoagulant / sticky bloods. This accounts for 20% of recurrent losses and they can treat this with aspirin and clexane injections.
As my tests were normal, we went to the Coventry implantation clinic where they test for the nk cells in the uterus. Again mine are normal but the doctor feels its my uterine lining causing an issue (I've never seen a heartbeat), so he prescribed cyclogest. My 4th pregnancy I had a big bleed on the cyclogest and it was a missed miscarriage.
So that's pointed us to go private with Dr Shehata - he is very focused on the other reasons for recurrent losses and how your body reacts to pregnancy, specifically nk cells / immune factors.
I agree that seeing Dr Shehata probably isn't a first line of investigation, particularly as it is very expensive.
If you can get the standard recurrent miscarriage tests done that would help. Also get your thyroid tested xx

@VenusStarr thank you for your reply again. How did you get in contact with Tommy’s clinic? I just think my GP/nhs will be so slow in getting all the regular tests so think we will need to go somewhere private for them but I’m just not sure where to actually start. It’s like a minefield and I want to go somewhere where they actually have an interest in helping rather than just making money. I’m thinking maybe should try St Mary’s first....
I know my gp did test my thyroid and progesterone during one of my last cycles and they were okay but I know it can change. 😕🤷🏼‍♀️

I was referred by my fertility consultant @whatsgoingon22 - we struggled to concieve so had started fertility tests at the hospital and he referred me after my second loss. I'm not sure you can see Tommy's privately, but I think you can see St Mary's privately - I think that's where Professor Regan and Raj Rai are based and they both have good reputations.

My thyroid fluctuates, anything over 2.5 isn't great for fertility, mine was 3.06 in January this year and my fertility doctor prescribed levothyroxine and my GP was quite unhappy as he felt my thyroid was fine.

I have felt that the nhs isn't interested in helping us - I've had 2 losses under Tommy's and 3 of my miscarriages have been carbon copies, I can pinpoint the day it goes wrong each time, but they have offered no additional care or guidance or explanations as to why that is happening. Just told us to try again. They wouldn't even prescribe progesterone in my last pregnancy, despite their own research stating that it can help for recurrent losses - they will only give it now I've had 4 losses but I've tried it and it didn't work anyway. It feels like they're happy to play Russian roulette with my health and potential future pregnancies and we don't feel we can do the same thing and hope for a different outcome xx

@VenusStarr that’s so interesting- my 3 MC were nearly identical too and 2 started on same day od pregnancy.
I find the lack of support and research so frustrating. I have been told there are no other test I can have?
I can’t believe that!!

I have one DC already and had a normal pregnancy, would that exclude me from killer cells etc.

@Dozer would you recommend St Mary’s as a starting point?

@VenusStarr please keep me updated on how you get on with Dr Shetata and Dr Quenby. I have high hopes on Dr Quenby for some reason.
That’s crazy that you can pin point it .... I’ve had brown spotting on week 6 in both of my last two including this one which is why I went for the scan today. Always start with spotting, dates have always been a few days short, last two have had slow heart beat, always missed miscarriages, some symptoms come and go and it all takes weeks to come to end. I don’t know and I don’t know if any of it means anything. I Joe I have a dip in my womb or an arcuate uterus but I don’t think that would cause miscarriages at 6/9wks 😕

@AdriannaP I’ve resigned myself that nhs testing probably won’t help us and that we need to go private. There has to be one of the other clinics that could support you? Perhaps St Mary’s as well? Xx

@whatsgoingon22 I am already with a private consultant but sounds like I need to change. Will investigate St. Mary’s

I have been referred to NHS miscarriage clinic, but not heard anything yet. My closest NHs Hospital is the Royal Surrey but no idea if I will have tests there.

It’s all so depressing. I am still heartbroken 💔

@AdriannaP ah I see, where is your private consultant? Yeh i think so, you can’t have completed all the tests. I would keep going. You know you can have a child so you have to be able to again.
Xx

Yes @whatsgoingon22 I'll let you know how I get on. Interestingly I have an arcuate and retroverted uterus.

I'm so sorry @AdriannaP, my last loss nearly broke me and I'm still not right now. That's why I'm desperate for answers. I think if you've not had the nk cells tests, it might be worth looking into. I feel I need to rule things out now, it's like a jigsaw puzzle for me, knowing I've been tested and even if the result is normal, I'm hopeful that I'm getting closer to an answer.
It is very frustrating to be told to keep trying or there's no more tests to be done when something is clearly wrong. Have you had the baby genetically tested? We sent our little one off as we've not had that done before - it will only tell us about that pregnancy but it's still more answers.

@whatsgoingon22 I hope that this pregnancy has a different outcome. But if it is over, I'd also recommend getting the baby karotyping done if you can. I'm still waiting for my results - they apparently take 8-12 weeks. Xx

@VenusStarr oh wow that’s very interesting. I’ve been told my womb is ‘far back’ also but I don’t know if that’s ‘retroverted’ or not.
Did anyone say anything about your arcuate womb of if it maybe linked to MC? I was due to have an mri to get a full view next week but obvs now I won’t be able to go through with it given what’s going on. For some reason, not that I know much but i don’t think my dip in my uterus is behind my miscarriages. It’s almost just another unknown worry.
The nurse did mention that if I have an ercp that will send it off for testing so I’m assuming that’s Karotyping. Do they do any other tests or take any other samples that you know of?
Sorry another question for you if you don’t mind, you are very knowledgeable! Do you know if they test egg/sperm quality as part of the general routine RMC tests or is that only in IVF clinics?
I’m so sorry for you and @AdriannaP, first one was physically horrific for me, second one was emotionally difficult and I needed CBT after it - still having it now. Started acupuncture too which helped. This time I feel numb. I feel like I’m so used to this path that it’s almost easier than if things went to plan and how scared I would be along the way then..... how messed up is that? People have no idea how traumatising one is never mind multiples :(
Lots of love and thanks for your support the last few days xxxx

That's OK @whatsgoingon22 my dip in my uterus is quite mild so they don't think it is a factor in the losses. In my second loss the epu did think the dip was more pronounced and more heart shaped with the baby in one of the horns - my uterus lining was 10mm on one side and 12mm on the other. But scans and the hysterscopy since then have not agreed with that and said its mild and fine.
I think retroverted uteruses (that doesn't look right, what the plural of uterus?! 😂 ) are different from the norm but not abnormal, if that makes sense - something like 1 in 5 women have them.

I was able to have medical management for my recent loss and I preserved the baby at home and took them back to the hospital the next day. My hospital weren't offering general anesthetic and I didn't feel I'd cope well with the procedure bring awake. I think they just look at the chromosomes - I was told that often they may not be able to get any results back or they could be inconclusive. I'm trying to prepare myself that we might not get answers. Also, the results only apply to that pregnancy, so it might explain that loss but doesn't really explain all your losses. The specialist I'm seeing said that multiple losses are not normal and statistically for all the babies to be chromosonally abnormal is impossible.
I did manage to get our rmc to test me and dh for parental karyotyping, so they check if you're carriers of particular genes or things like balanced translation. They told me that they only usually do it if you've had 5 losses 😔 but I kept asking and so I think they just did it to make me go away. We had those results last week and all is fine, but it's more answers in a way. It's expensive to do it yourself though.

I've never had my egg quality checked as part of my rmc tests. I did start taking 200mg of ubiquinol after my first loss as I've read this can help egg quality. We were going to do ivf and I do think that could be helpful for them to see the quality of the eggs but I don't know if a definitive test for quality.

Lots of love xx

@VenusStarr yeh she said mine was a small dip also but im not sure why she wanted me to have the mri 🤷🏼‍♀️I found the hysteroscopy so uncomfortable it was over in about a minute because I was in a lot of pain 😕. So sick of being prodded and poked and this is only the start of it all if we go for testing. I wonder why they don’t do egg quality tests.... surely that would be helpful. Yes I was on the ubiquinol also (I read it starts with an egg) up until I got the positive test but stopped again after that.
I don’t know anything obviously but I have a feeling this one and the last one may have been chromosomal because the heart beat has been slow ..... the first pg was going really well until 9weks, had a lovely fast heartbeat and progressing well but I had spent the first 7 weeks not knowing I was pregnant so I had done everything you’re not supposed to during that time......I guess it’s impossible to say but it does leave you scratching your head. Surely it has to work for us eventually ❤️❤️❤️ Sorry for rambling, when is your next appointment? It’s all so hard isn’t it? I am so happy we are in lockdown I can’t handle meeting friends or seeing newborns or pregnant bumps. This has affected so many of my friendships as I just want to isolate myself away from those who have what I want. Thank god for online support Xxx

I'm sorry the hysteroscopy was painful @whatsgoingon22 ❤️ I ended up having mine under general as I'd had a hsg (dye in tubes test) in the summer and not coped with the pain and then had my second loss, so think the consultant took pity on me.
Yes, our situations are slightly different as I've never seen a heartbeat - my latest one did get to 6+5 in growth so looked like the images I'd googled so I had wondered if they had had a heartbeat bit my others were measuring behind for the dates. Hopefully you can get karyotyping done. I know what you mean about more testing and prodding and poking. It's exhausting. I've started disconnecting in appointments, it's almost like they're happening to someone else.

My follow up / results appointment is on Wednesday next week. I can't believe how quickly thid week has gone.
I know exactly what you mean about lockdown helping. I haven't even really noticed a difference with this second one as I was barely going out or seeing anyone anyway and that suited me. I find I struggle to make conversations with people - put me with someone who's been through similar to me and I can't shut up! (as you can see from these long messages!! 😂) xx

@VenusStarr yes I’m exactly the same - I don’t want lockdown to end now !

I’m completely disconnected from everything now! I’d Almost be more scared/shocked if things started going correctly! Anyways I have my follow up scan tomorrow so will see what happens then although highly unlikely to be anything positive. All the best for your appointment on Wednesday, please let us know how you get on- hope you start getting some answers 🙏🏻Will be thinking of you! Xxxx

Hope all went well at your follow up today @whatsgoingon22?

I passed some retained tissue on Sunday, 6 weeks after my medical management, it's really freaked me out. My epu wouldn't see me, so my GP has arranged one for Saturday morning.

I'll let you know how tomorrow goes xx

@VenusStarr oh you poor thing, that would scared me too 😔I hope that was the end of it. My epu wouldn’t see me after my last natural MC, and ended up having to wait 10 weeks to be seen for a follow up scan ☹️It was awful.
Thank you so much for your message, by some miracle today was a completely different story, fast heartbeat, measuring pretty much bang on and had doubled in size in last 6 days , I can’t quite believe it. I’m not going to get too excited yet due to my history but I just hope all works out now but that was one big shock today. Really hope you get some answers tomorrow - good luck 🙏🏻❤️

That's amazing news! 💕 Keeping my fingers and toes crossed for you that this is the one 🤞 have you got another appointment booked in?
I'll let you know how I get on tomorrow, scared but excited xx

@VenusStarr hi Venus, how did you get on yesterday? I hope you got some answers?
No they wouldn’t agree to a follow up reassurance scan - think I’ll have to go private. Of course yesterday morning I had some brown discharge 😔I’m praying it was because of the internal scan 🙏🏻Never ever a dull moment on our journeys❤️

I'm sorry to hear about the brown discharge @whatsgoingon22 hopefully it isn't anything sinister but can understand your worry. I hope it stops soon and it's just one of those things ❤️ Are you going to book a scan before your 12 week one?

Yes, we did get an answer yesterday. My body has an aggressive autoimmune response to pregnancy, so I have a normal amount of nk cells but they essentially attack the pregnancy. So I've got a treatment plan and we've been given the go ahead to ttc again. I need medication to dampen my immune system and then an intralipid infusion every 4 weeks.
It was quite overwhelming and tiring yesterday but relieved to finally have a reason for our losses. Xx

@VenusStarr wow, that’s a lot to take on but amazing you got some news that will finally help you going forward. Thankfully you went for those tests as I know they’re not as common as the regular ones. I know it’s a lot to take but so much better for you moving forward that you can work with this plan and be on track to get your rainbow 🙏🏻🙏🏻
Thank you, my heart sank yesterday when I saw that and really feel that would be just the worst luck in the world but I guess we will wait and see. If it continues back to epu I go and if it stops I’ll prob get a private scan in two weeks or so 🤷🏼‍♀️❤️Please keep in touch x would love to hear how you get on and all the very best of luck xxxxxx

Hi Ladies, ok if I join? I'm so sorry to hear of your losses. It's like winning the crappiest lottery in the world and feels so unfair doesn't it?

I've had three losses in total, two this year. It took us over a year to catch the first time and we had investigations for including a lap and dye. I had a chemical first then a loss at 6 weeks, then the most recent was a loss at 12 weeks which I needed medical management for in June. I've been referred to Tommy's Birmingham and had bloods taken on 3rd October which I won't get my results back for until 16 December!!! Feeling worn out with it all and just want to find out.