This waiting is making me feel sick with worry

[northernsunshine]

PUL have to wait until Friday for a scan

Some help needed please. Diagnosed with pregnancy unknown location on Thursday after a transvaginal scan for right handed side pain. There was no sac and sonographer could find any pregnancy. She found a small group of “organised blood vessels” on the edge of the uterus which she said she couldn’t rule out as ectopic.

Took my HCG levels and progesterone. Came back as 1,107 HCG and 40 progesterone. Repeated this 48 hours later and levels came back 2,224 on the Saturday. Said they can’t rescan me until Friday because they don’t have any appointments and they need to allow it time to “grow” to be visible. The sonographer also said there is no point doing more hcg levels because they don’t tell us anything she said if they double it can still mean ectopic pregnancy.

Am I just supposed to sit here and wait it out until Friday? She advised doing a private scan. I really want to know what’s going on in my body, if it is ectopic then surely it’s best to rescan as soon as possible. And surely it’s good to have an up to date record of my HCG levels for reference.

Just feels like a cost saving exercise (NHS in the UK) .. they’ll just wait until my symptoms are hideous before doing anything.

For reference i think I ovulated around March 6 - 10, last had sex on March 6. I have longer cycles, last period started on Feb 15.

If it helps, I had HCG of 1979 when I was scanned for potential ectopic and they could see my gestational sac + yolk sac. So in theory if you got a private scan, you should be able to see more at this stage (but it can be common not to!)

Sorry should have said she advised against doing a private scan

There's not really any point in doing a private scan this early on, especially as the NHS will be doing one so soon. The pregnancy is barely visible so a private scan can cause more worry if they find nothing and wouldn't speed up the process for the NHS if they find an ectopic pregnancy as they'd be sorting this on Friday anyway.

Same with HCG results. HCG can rise in line even with an ectopic so it doesn't actually help.

Thanks @piechipsgravy that is useful, have been told once HCG hits 1,500 should be able to see something. Do you mind me asking why they suspected ectopic? And how things turned out?

@northernsunshine I had cramping/a persistent niggling feeling on one side and shooting pains in vagina. Scan at 4+5 which ruled it out as we saw sac in my uterus. As they couldn't see fetal pole/heartbeat yet (which they did stress wouldn't be seen at that gestation) they booked me in for a follow up scan at 6+3 where we saw baby and a heartbeat so all good so far. I'm 8+3 now and have a private scan on Friday (booked before we knew we'd be having the EPU scans).

Hello - I’m sorry you’re having such a tough time of it.

I was exactly where you are now in November 2023. I had niggling pains (sometimes shooting down my leg) and was a suspected ectopic marked down as PUL.

An incredibly long story short, my HCG continued to rise x2 or more every 48 hours and I’m afraid to say that it ended up being a blighted ovum (although I think they have a different name for it now?). It only showed up on the scans properly when I was about 6-7 weeks.

i remember desperately trawling through Mumsnet to try and find people with other experiences similar to mine - I really, really hope that you’re one of the success stories.

The waiting between scans etc is agonising and I went properly mad. Probably shouldn’t say this but I’d recommend stepping away from MN if you can (although you’re probably not as obsessive as I was!)

let us know how you get on x

Hi @Confusedandtired90 thanks so much for your message. I’m sorry things ended that way for you, that sounds really tough. How are you doing now? I am trying not to obsessively spend time researching this but it is so difficult 😫my screen time has gone through the roof. The logical side of me knows none of this makes any difference but I hate the feeling of being blindsided by things, would rather know what could potentially happen 😢 x

I honestly could have written your message - I spent the whole time manically refreshing MN and reading medical journals! It's almost like I felt more knowledge might change the outcome.

I'm still quite sad about it but have recently found out I'm pregnant again. Feels like something isn't right again this time but trying my best to stay level to see how it all pans out.

Try and keep yourself busy with nice things until Friday - really hope it all works out!

@northernsunshine sorry you are having an uncertain time. I've had an ectopic and it really sucks. Good news for you though if there is a chance it's a healthy pregnancy that's just too early to see, given your HCG doubled and you have a history of long cycle. I'll keep my fingers crossed

@Confusedandtired90 sorry about your previous loss and congrats on your new pregnancy. If it helps at all my pregnancy following my ectopic I just knew in my soul something wasn't right with the pregnancy. I think in fact it was my minds way of protecting me from the disappointment of another loss because nothing was wrong and I had a healthy baby boy, now 9 weeks old. I hope you get your rainbow baby too

The waiting is brutal. I had a long wait, too - I had some bleeding and they couldn't see anything, so said there either wasn't a heartbeat, or it was too early. I had a 7 day wait and it was excruciating. I spent the whole time desperately searching the internet trying to find information and work out my chances. I even called two private scan places who, to their credit, wouldn't book me in when I explained, as they said I was better to wait.

It's really, really hard; and in reality, nothing makes it easier. Distraction is the best tool you've got, and it's sometimes not possible, and sometimes not enough, but it will give you some moments of almost peace.

I really hope everything goes your way on Friday x

@Confusedandtired90 you have basically described my last four days 🙃 glad I’m not alone.

Congratulations on your new pregnancy! Hope it is wholly uneventful and you can enjoy it.

Thanks so much for your kind words @LavenderSweetPea - I really hope that's what it is as I'm not sure I could handle another!

@northernsunshine what was your outcome?
My PUL 4 weeks ago is now a healthy baby with heartbeat measuring 7w5d