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Original poster

CVS - Pain

26 replies

Moosmum87 · 21/11/2020 22:17

Hi I’m 13 weeks pregnant and have just been given a 1 in 8 chance of having a baby with Down syndrome. I’m just wondering of anyone’s experience with this. What were your chances, how was the test etc
I’m very nervous and have the abdominal cvs booked for Monday

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seashellseashell123 · 21/11/2020 22:25

I had one recently for twins so had it twice! I'm told most people just find it uncomfortable but I personally found it quite painful even with local anaesthetic. It was a manageable pain and over very quickly so nothing you will struggle with just sore! Also felt quite bruised for about a week afterwards so definitely take it easy! My odds were something like 1 in 100 ish for one twin and slightly higher for the other so they recommended CVS rather than non invasive. I got the results 2 days later both clear. I hope you have the same positive outcome it's a horrible timeSad

ineedmoresleepnow · 21/11/2020 22:26

Hi. So sorry you are going through this worry.
I had 1:4 for downs and even bigger odds for the others if I remember correctly.
The CVS was honestly fine. It looked really scary but was just a wierd feeling rather than painful.
Mine didn't show anything up and I had a heart scan too which again didn't find anything wrong.
Strangely I struggled with that as I thought if there was something they found then at least I knew and if it was heart related they could fix it. The unknown of we can't find anything was hard. But I have a perfectly healthy five year old now.
I hope it all goes well for you.

Original poster
Moosmum87 · 21/11/2020 22:56

@ineedmoresleepnow

Hi. So sorry you are going through this worry. I had 1:4 for downs and even bigger odds for the others if I remember correctly. The CVS was honestly fine. It looked really scary but was just a wierd feeling rather than painful. Mine didn't show anything up and I had a heart scan too which again didn't find anything wrong. Strangely I struggled with that as I thought if there was something they found then at least I knew and if it was heart related they could fix it. The unknown of we can't find anything was hard. But I have a perfectly healthy five year old now. I hope it all goes well for you.
Thank you so much for your input this has put my mind at ease. If you don't mind me asking. Did they say what the reasoning was for your chances being so high? I'm 34 soon but I'm not sure what else would be giving me these odds. I'm absolutely petrified of the procedure and then the waiting for the results.
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Original poster
Moosmum87 · 21/11/2020 22:57

@seashellseashell123

I had one recently for twins so had it twice! I'm told most people just find it uncomfortable but I personally found it quite painful even with local anaesthetic. It was a manageable pain and over very quickly so nothing you will struggle with just sore! Also felt quite bruised for about a week afterwards so definitely take it easy! My odds were something like 1 in 100 ish for one twin and slightly higher for the other so they recommended CVS rather than non invasive. I got the results 2 days later both clear. I hope you have the same positive outcome it's a horrible timeSad
Thank you for your reply I'm petrified. I am on another mums forum and unfortunately the replies I got were a little negative in terms of why I would even want a test and why would that matter so thank you for replying and not making me feel like a bad person for having the test
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ShalomToYouJackie · 21/11/2020 23:02

Thank you for your reply I'm petrified. I am on another mums forum and unfortunately the replies I got were a little negative in terms of why I would even want a test and why would that matter so thank you for replying and not making me feel like a bad person for having the test

That's rubbish OP, of course you'd want the test. I know some women say they wouldn't care what the test showed and would continue regardless so it doesn't matter but that's not the case for everyone at all and I think it's important to know so you can make an informed decision about what to do should the CVS show something.

I've not had a CVS done myself but I didn't want to read and run. Sending lots of love and hope it all goes okay xx

ineedmoresleepnow · 21/11/2020 23:23

My odds were very high because I had high amounts of nuchal fluid combined with blood results.
I was 33 so a similar age and I had had a private scan a few weeks earlier that they said nothing at so it was a complete shock for me. My 12 week scan hospital even told me they wouldn't book a 20 week scan as I probably wouldn't need it. I never returned there.
I had to travel for 1.5 hours for the test to a city hospital as i live rurally and I continued to go there for all further scans etc.
I was terrified too but it honestly wasn't a horrible experience in terms of pain, just obviously incredibly worrying.
The heart scan I had was at 16 weeks and again at 20 and they were absolutely fascinating.
In the end I was all signed off and went on to have a home birth.
Sending lots of positive thoughts for you.

ineedmoresleepnow · 21/11/2020 23:25

And don't listen to others judgements about tests and choices. You need to do what you feel is best for you and your family.

Trinpy · 21/11/2020 23:28

I had my CVS last week for a 1 in 11 chance of downs (Mine was high due to an 11mm NT). I was completely terrified especially since I'd read all these horror stories online of women vomiting/passing out etc! It hurt very briefly when the needle went in - like a sharp pinch pain - then the rest of the procedure was completely pain free. Really nothing to panic about at all.

I got my first lot of results back earlier in the week and it was all clear but in my case there are clear indicators that somethings up, so they're still trying to figure that out and how serious it could be.

It makes complete sense to me to have the test so you're not going into this blindly. Looking after a child with a disability is a big deal and it is sensible to have all the info whatever happens. I hope all goes well for you with the CVS and getting the results.

Ginandplatonic · 21/11/2020 23:38

I had one for similar reasons - I found it really quite uncomfortable, more in a toe-curling way than a painful way (local anaesthetic going in wasn’t great tho) if that makes sense?

By far the worst though was the wait afterwards. There were a few little niggly aches/period type cramps and I was SO worried they were signs I was miscarrying.

And of course the wait for results is horrendous. It doesn’t matter how many times you tell yourself a 1 in 8 chance of chromosome abnormalities means a 7 in 8 chance of no chromosome abnormality.

Don’t worry about what other people think of your decisions. Personally I can’t understand how anyone can be given odds like that and NOT need to find out for sure. But everyone is different, you just do what’s right for you. Good luck.

Original poster
Moosmum87 · 21/11/2020 23:46

@Ginandplatonic

I had one for similar reasons - I found it really quite uncomfortable, more in a toe-curling way than a painful way (local anaesthetic going in wasn’t great tho) if that makes sense?

By far the worst though was the wait afterwards. There were a few little niggly aches/period type cramps and I was SO worried they were signs I was miscarrying.

And of course the wait for results is horrendous. It doesn’t matter how many times you tell yourself a 1 in 8 chance of chromosome abnormalities means a 7 in 8 chance of no chromosome abnormality.

Don’t worry about what other people think of your decisions. Personally I can’t understand how anyone can be given odds like that and NOT need to find out for sure. But everyone is different, you just do what’s right for you. Good luck.

Thank you so much for your reply. Do you mind me asking what your chances were and what your outcome was I'm so overwhelmed with anxiety atm
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Original poster
Moosmum87 · 21/11/2020 23:47

@Trinpy

I had my CVS last week for a 1 in 11 chance of downs (Mine was high due to an 11mm NT). I was completely terrified especially since I'd read all these horror stories online of women vomiting/passing out etc! It hurt very briefly when the needle went in - like a sharp pinch pain - then the rest of the procedure was completely pain free. Really nothing to panic about at all.

I got my first lot of results back earlier in the week and it was all clear but in my case there are clear indicators that somethings up, so they're still trying to figure that out and how serious it could be.

It makes complete sense to me to have the test so you're not going into this blindly. Looking after a child with a disability is a big deal and it is sensible to have all the info whatever happens. I hope all goes well for you with the CVS and getting the results.

Thank you so much for your reply. It's such a worrying time and people have so many opinions
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Original poster
Moosmum87 · 21/11/2020 23:48

@ineedmoresleepnow

And don't listen to others judgements about tests and choices. You need to do what you feel is best for you and your family.
Thank you so so much for your positive message it's really appreciated
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Trinpy · 22/11/2020 00:04

@ineedmoresleepnow sorry to be nosy but can you remember what your nuchal fluid measurement was from that pregnancy?

Sorry to hijack your thread OP Blush.

Ginandplatonic · 22/11/2020 00:29

@Moosmum87 not at all - there wasn’t a specific high risk marker with that pregnancy, but I was 43 so my background risk was quite significant. In my previous pregnancy the 20 week scan had showed an abnormality that indicated a high risk of Edwards Syndrome (can’t remember specific numbers now). It was too late for CVS so had to have amniocentesis - it was such a horrendous, stressful, difficult time, deciding whether to have the test, waiting for the test, waiting for results, thinking about what to do if Edwards was confirmed. Results came back as normal but I still didn’t relax for the rest of that pregnancy until I saw him and he was fine. So next time with my high maternal age and the memory of that I just needed to know things were ok right from the start, so had the CVS. That baby was fine too.

ineedmoresleepnow · 22/11/2020 12:12

Hi Trinpy, sorry I don't know how to quote. It was 5.6mm if I remember correctly and that was the basis for the cvs. But when I went for the test they had the blood work too and that was what gave the 1:4 for downs but the Edwards and patua were more significant odds, I just can't remember but must have been 1:2 or 1:3.

ineedmoresleepnow · 22/11/2020 12:14

Trinpy that was the feedback I got, that they couldn't find anything wrong but doesn't meant there isn't anything wrong we just don't know what. She's five now and nothing has appeared yet. But I really struggled with that uncertainty. I hope everything works out for you

Trinpy · 22/11/2020 13:21

@ineedmoresleepnow thank you! I hope your dd continues to do well and there aren't any problems. Your story has given me a lot of hope though!

2 weeks ago we were being told our options were a) terminate b) wait to miscarry or c)have more tests and then choose either a) or b). So to now have the possibility of a healthy baby is pretty amazing Smile.

Original poster
Moosmum87 · 22/11/2020 14:31

[quote Trinpy]@ineedmoresleepnow thank you! I hope your dd continues to do well and there aren't any problems. Your story has given me a lot of hope though!

2 weeks ago we were being told our options were a) terminate b) wait to miscarry or c)have more tests and then choose either a) or b). So to now have the possibility of a healthy baby is pretty amazing Smile.[/quote]
Sending lots of positive energy and thoughts your way!
When are your next lot of tests? I go for my cvs tomorrow. I haven't even been able to sleep I'm overwhelmed with anxiety. I'm not looking forward to the wait after either for the results

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Trinpy · 23/11/2020 00:13

@Moosmum87 hope all goes well today. Please try not to be too anxious. There is nothing more you can do at this point except wait, so get the test over and done with then try and keep yourself busy as much as you can. Do you know how long you have to wait until you get the results? Mine was a 3 day wait for the first part and 3 weeks for the second. I should get the second part next week but the screening midwife told me that it's unusual for anything to come up on that if the first part is clear.

I've got another scan in 2 weeks time to check for any structural abnormalities. My consultant thought there might be a problem with the baby's heart but still too small to tell. Then we'll have the 20 week scan 3 weeks after that. I'm still deemed high risk for miscarriage so I'm just hoping everything's still ok in there!

Let us know how you got on.

Original poster
Moosmum87 · 23/11/2020 05:07

[quote Trinpy]@Moosmum87 hope all goes well today. Please try not to be too anxious. There is nothing more you can do at this point except wait, so get the test over and done with then try and keep yourself busy as much as you can. Do you know how long you have to wait until you get the results? Mine was a 3 day wait for the first part and 3 weeks for the second. I should get the second part next week but the screening midwife told me that it's unusual for anything to come up on that if the first part is clear.

I've got another scan in 2 weeks time to check for any structural abnormalities. My consultant thought there might be a problem with the baby's heart but still too small to tell. Then we'll have the 20 week scan 3 weeks after that. I'm still deemed high risk for miscarriage so I'm just hoping everything's still ok in there!

Let us know how you got on.[/quote]
Thanks for your message, I am super nervous about today but like you said there is nothing I can do now. They have said it could be a 5 day wait but I think they have said that to be safe as everything I've read says 3 days
Sounds like things are hopeful for you if the first result came back all ok. You will also have to keep you updated on your situation as will I.
How long are you classed as high risk for miscarriage? And is that because you have had the procedure of is it because of other factors?

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Trinpy · 23/11/2020 08:30

@Moosmum87 sorry, no I'm high risk for miscarriage because of all the fluid around my baby. The risk of miscarriage from the CVS is only small.

ineedmoresleepnow · 23/11/2020 08:50

@moosmum87 thinking of you today

Original poster
Moosmum87 · 23/11/2020 20:50

[quote Trinpy]@Moosmum87 sorry, no I'm high risk for miscarriage because of all the fluid around my baby. The risk of miscarriage from the CVS is only small.[/quote]
Just an update, I got there today and they had me booked for the IONA blood test. Said it would have been at least a 3 week wait for the CVS
The midwife did say that she had looked through all my results and numbers and couldn't see anything that jumped out as to why I have come up as 1 in 8 but she also didn't want to give me false hope. It's just a waiting game now so hopefully I will know by Friday

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Original poster
Moosmum87 · 23/11/2020 20:51

[quote ineedmoresleepnow]@moosmum87 thinking of you today[/quote]
Just an update, I got there today and they had me booked for the IONA blood test. Said it would have been at least a 3 week wait for the CVS
The midwife did say that she had looked through all my results and numbers and couldn't see anything that jumped out as to why I have come up as 1 in 8 but she also didn't want to give me false hope. It's just a waiting game now so hopefully I will know by Friday

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Trinpy · 23/11/2020 21:24

Thy could have told you you weren't having the CVS Hmm. All that worry about the procedure for nothing! I hope the result come back ok Flowers