Severely shortened cervix

[Nosejug]

Hello, bit of background. TTC 4.5 years. One MMc, one ectopic, 4 failed rounds of IVF and one current 16+2 pregnancy which was going swimmingly.

I had an intense lletz 2 years ago, 3x10mm passes and another unmeasured. I also had a massive haemorrhage two weeks later involving 4 transfusions plus platelets, still getting over it.

anyway, went for my first cervical scan today thinking the worst it would be is nearing their cut off (25mm) but it’s 11mm. It’s closed. She’s asked me to come back in tomorrow to attempt the stitch (but might not be enough cervix to stitch). I included my backstory to emphasise that this is likely the only close to successful pregnancy I’ll achieve. I’m a little numb/can’t believe it/crying intermittently. So sad to be back in a hole instead of the shiny enjoyment.

can anyone give me stories of success (which I would deem reaching 31 weeks, or similar)? I just feel so sad and scared.

Also on the subject of bed rest as I've seen it pop up on this thread a couple of times. When I was pregnant with my first born I wasn't advised bed rest. I was told light exercise is fine (walking, gentle yoga) and to continue as normal. I kept finding examples, particularly in America, of people going on full bed rest with far longer cervixes than mine and I was really concerned.
I pushed this with the consultant and she said there isn't any evidence to suggest bed rest is helpful and in fact it can be damaging due to the impact it has on you (both mental and physical).
For my second pregnancy which was the same hospital but different consultant, I pushed this again. And again I was told not to do bed rest.
So for all my pregnancies I have carried on as normal (within reason). I don't run, but I walk short distances daily and try to do light ante-natal yoga. I take it very easy.

I'm not a medical professional so please don't take my word for it, but I just wanted to share the advice I was given as it worked for me. It might be worth asking this exact question to your consultant x

Everyone has different experiences but I can tell you as soon as I started doing bed rest my cervix stayed stable. So it works, May not for some, My consultant has said that there is good evidence staying off your feet at this crucial time takes the weight of the cervix. Just to get to 24 weeks… and so on. Everyone has different experiences but I have only heard positive ones from bedrest :))

@Nosejug I'm on 400mg twice a day and have been since the start of the pregnancy. Had no issues with that dose so if you can increase it I definitely would!!

I think that’s the max - I’m on the max and it’s 800 daily, 400 morning and 400 at night x

Really hoping for you OP

I didn't even know they gave less! I was just prescribed that from positive test and to continue until 34 weeks

@NosejugYou are so welcome, I’m just so, so hopeful for you. What would say is don’t wait for a referral, give the St Thomas hospital preterm research midwives number a call - if you can’t travel down there, they may well be able to get an urgent message to Dr Shennan. Likewise Prof Simpson being in Leeds is a bit closer and he did a call either us 24 hours after we initially approached his secretary.

This is the phone number for Prof Shennan’s research midwives - 07721 109201

Ahh thanks everyone for your continued support and experiences.

so I called not my own consultant but one that was available to query both the progesterone amount and to ask for a referral letter for trying Prof. Shennan and/or prof Simpson.

Ive got a letter so thankyou again @KittyFantastica for pre-empting my morning task of asking how you contacted them both. Do you think I should try both at once or is that rude? Maybe if I’m just transparent about contacting them both! I’ve found a number via Leeds university which I imagine will be for his secretary. I’m just glad to be doing something, even if I just get 2nd opinion on what’s possible. Thankyou so much for your encouragement and aid in doing it. I don’t think I could live with regrets of inaction.

on the progesterone dosage front: so the consultant said that they changed the dose back from 400mg to 200mg two months ago as most recent research showed there were no differences in outcomes for the cohorts of women taking each dose. Obviously I’d be happy to take whatever dose, I just want to take the most helpful dose. I can’t pretend to be more familiar with research in this field than a team of consultants and obvs have to trust their judgement… though I will absolutely be asking for the opinion of the consultants I’m trying to reach out to.

I will also absolutely be asking for their opinions too on bedrest/modified bedrest. I did push the subject when I was in for the failed cerclage, and she was adamant that bedrest didn’t increase positive outcomes. But mechanically, I know if makes logical sense that less pressure would be good, as it’s pressure that might cause it to open. I know they’ll be thinking about my mental and physical health too, though they’re not factoring in what would happen to those if I lose this long fought for pregnancy.

Thank you everyone for your encouragements and experiences and opinions, I am actioning what I reasonably can and forming them into questions for consultants when I’m unsure. It’s amazing knowing there’s an online team of women also on board with me.

one off piste comment from the consultant that I did speak to, she sort of veered off and started telling me that if I start to labour or waters break or get an infection that they won’t be trying to save my baby and that I’m their priority. It was really confusing in the moment, it wasn’t something I had asked about, maybe I just didn’t follow the connection she’d made with something I had said, but it was confusing and alarming and, I think, unnecessary? Anyway.

17 weeks tomorrow 🤞

@Nosejug Well done! I’d contact them both - they are good friends and do a lot of research together. We spoke to Prof Simpson first and he recommended Prof Shennan just because he was a bit closer to us.

i have everything crossed for you, my lovely!

i had same thing as you in all pregnancies and had to be in bed rest the whole time and suggest once you put your progesterone in you literally lay there and stay there all evening and night. The more you had your feet up the better.

How are you doing @Nosejug I’m thinking of you ❤️

Hi @KittyFantastica :) I hope you and bambino are doing well.

I had my second scan on Tuesday this week and its maintained (it even measured 2mm more than the first consultant's most optimistic measurement) so I'm 16mm, but was told to expect variance in measuring week to week. Still terrified, but less in terror from moment to moment, I suppose that level of fear is hard to sustain. Really glad it's stayed the same, and feeling a bit better about progesterone only as studies show it to be as effective as cerclage. Not that I didn't want cerclage. Also I do keep getting told by people online how important bed rest is, but I've asked three seperate consultants who say it doesn't help. So I'm torn as I feel guilty when I'm doing things and guilty when I'm lying flat. I just do normal stuff without any lifting but also lie flat a lot.

I contacted Professor Shennan's team who have said they will see me :) One of my consultants questioned what could really be done differently, as my cervix isnt able to have TV cerclage, TAC isn't safe during pregnancy, and even a rescue TAC (which would have been my hope if things started to change) wouldn't be possible as I'm in Scotland and couldn't travel to London for it "or you'd give birth on the train". I just find it hard to accept that nothing can be done if I start to open, so I'm glad to even considered by Professor Shennan's team. I have a phone call next Wednesday so I can discuss with them what the consultant here brought up. At least no matter what I will have been trying everything. Was cool to see baby again, ribs and kidneys and a cute little bladder hah! I just cant accept that I wont get to keep them. Getting psychological support fortnightly too which is good, at the very least not to feel in freefall.

Hi @Nosejug, I remember your username from earlier threads and just wanted to say that I'm thinking of you and will be counting the weeks down alongside you from down south! And everyone else on this thread will be doing the same I'm sure!! And just to add, I know someone whose daughter was born at 26 weeks following 8 years of infertility, IVF and losses. She's a completely healthy, happy and adorable toddler now! Take it one day at a time and I hope you and baby will be in that zone before you know it!!

aw thank you @Waitingforday6 I remember your username too! I hope things have been going well for you.

18 weeks on saturday :)

So glad things are still going well for you and the progesterone sounds like it's working. Keep us updated, I'll be keeping everyone crossed for you. I'm 23 weeks now. They discharged me from the pre term birth clinic last week which has made me quite nervous (They didn't discharge me till 34 weeks in my previous pregnancies). She just said I've got the progesterone and there's nothing more they can do so scanning me isn't helpful. But I did like having the reassurance of the scans!

@Anothermanechange really?! thats surprising to me, you'd have thought they'd want to know if things started to change. Maybe because this is your fourth pregnancy and all three have made it to term then the risks are quite low statistically. I can imagine how uneasy that must feel. Is it one of the Tommy's satellite pre-term surveillance clinics? If so at least it's going to be good advice. How many days away are you from 24 weeks? Do you know what level of nicu your maternity hospital has? I'd be sent to one of the centralised clinics so not my own if it's very early. Def showing my need for knowing the plan...!

Yeah it seems to be because I've had three pregnancies to term and progesterone has worked every time. She doesn't seem to be concerned.
I find it disconcerting how much hospitals differ. The consultant I saw in my last pregnancy had me scanned weekly and till much later in the pregnancy.
The clinic I go to is just a department in my local hospital (South coast). I used be seen at the fetal medical centre in Denmark Hill which felt really reassuring as they were right at the forefront of research in that area.

I'll be 24 weeks next Tuesday. I'm not too concerned due to my previous pregnancies working out, but the reassurance of knowing the cervix is still closed is a game changer for being able to relax a bit. I might go to my GP at some point and say I'm concerned and need a scan.

That's a good point about the NICU, I will look into that! Need to know which would be the best hospital to go to.

@Nosejug I’m ready happy to hear everything sound stable!

bed rest isn’t recommended in the U.K. generally due to the heightened risk of blood clots during pregnancy and then adding bed rest on top increases the risk even more. Add age over 35 and any other health issues and it’s a red flag for doctors.

Prof Shennan’s team advised bed rest wouldn’t make a huge amount of difference with a stitch, but they did recommend modifying my lifestyle. So no baths, no swimming, no bending, squatting, kneeling, etc. Reduce (though don’t avoid completely) stair climbing, standing for long periods, etc.

I’m not sure if he could do so again, but I know a lady who was in Scotland and Prof Shennan travelled to her to do her stitch and teach the consultant at that hospital how to do it.

With 16mm or thereabouts, that should be more than enough for a cerclage!

@KittyFantastica thanks for passing on their instructions, I actually am doing some of these things (bending, kneeling, squatting) just in like.. normal activity like picking stuff up off the floor! And we have stairs in the house annoyingly, so I’ll try reduce my use of them. This was quite recent advice for you wasn’t it, so I should def follow it. And was that advice with cerclage in? I wonder if they’d modify for without.

i think the Scotland team said it was because the cervix is all inside that they couldn’t do it, not the length itself. Which is why she was questioning what else they could do. But then, maybe technique, skill… but then, again, research seems to chow cerclage as being as effective as progesterone. I will look forward to my phone call with them this Wednesday for sure.

Hi @Nosejug, very difficult time for you, sorry and sending lots of hugs.
Someone mentioned before, but could they put the Arabin pessary at least if not a cerclage?
I have 2 premature kids 32w and 33w, my cervix was good till like 22-24w abd then rapidly would just disappear. With my second kid (was in the UK) they also said no bed rest just get ready for delivery (was 26w!) But I put myself on moderate bed rest, was on progesterone (no stitch as too late) and managed to get to 33w.
Now pregnant with my third, we did surgery to correct the shape inside as dr told it is because of that I had premature deliveries. All was good again till like 25w, then cervix started rapidly decreasing again. They put Arabin pessary, progesterone 400mg and told me bed rest as much as possible (I still like sit, use stsirs but whenever possible try to take the weight off the cervix). My cervix is open inside wo a pressure but decrease slowed down significantly. I am now at my first milestone 28w.
I know my situation is different as weak cervix starts much later, but I do think the passary helps with a bed rest (I am now in another country). It is hery easy (few mins to put in), but just maybe like additional support

Wishing you all the strength possible!

@FlatWhiteAnyone thanks so much for your kind and helpful message and congratulations on 28 week milestone!

I think I’m going to keep doing what I’m doing (activity but lying down between to at least reduce the time that there’s a load on cervix) and add in the no bending/ squatting/ kneeling etc. if I can get advice from professor shennan’s preterm clinic I think I will feel that I’m in the best zone of researched advice. It’s so different everywhere I find it really confusing, even between consultants at my hospital.

im going to ask about the Ariban pessary, it’s been mentioned a few times. The issues with it are that my cervix is already all internal and it worked by supporting it externally, and that I’ve read it can make monitoring more difficult.

i am glad to have reached the minimum GA for using the QUiPP app. The statistics on that (albeit I can’t enter one of the details as it’s untested-the presence of protein glue fFN) are somewhat reassuring at least as I go from scan to scan, week to (hopefully) week.

Yes, those were all instructions for after the cerclage as you can’t risk anything pulling at it. Any signs of bleeding, irritation or infection and they’d have to take it out. There were no instructions for without for me because they didn’t actually know what was causing my cervix to shorten - it was perfectly normal until I started having like 60+ tightenings a day, so they think mine is mechanical issue caused my irritable uterus rather than typical cervical issue.

Thought I’d update, scan today showed 20mm which to me is amazing. Still short but not as extreme as the initial 11-14mm and most importantly the trend is going up (bizarrely, wonderfully) and not down.

plus I saw the baby yawn! a good scan day sees me through for a few days without feeling super emotional so I’ll go enjoy the patches of blue sky that have shown up today :)

Oh that's lovely, I'm so happy to hear that, enjoy every bit of good news. A yawn! So cute!!! ❤️

Great news OP 💕