Spotting, HCG rising, nothing on scan - ectopic?

[danielleb97]

Hi,

This is my first ever thread (I hope I'm posting in the right category, apologies if I'm not). I'm just looking for anyone who has had similar experiences to mine, as I'm so fed up of being in limbo already. sad

I got my first positive on 28/12, after trying to conceive with my fiancé for around 6 months. Going off my last period (27/11/20) I should be around 7 weeks today though I feel this could be off due to irregular cycle length and not tracking ovulation.

Everything was going fine until I started spotting around 2nd Jan, I was trying not to worry but ended up phoning my GP on 4th Jan and going in for some internal and external checks. They assured me everything seemed okay and it was likely implantation bleeding.

The spotting stopped on the 5th, until this Monday (11th) when it picked back up again. I felt quite concerned and phoned the EPU who told me they wouldn't scan me unless things got worse. However, we both really wanted some reassurance and figured since we were over 6 weeks, we should see something if we booked a private scan. We managed to get one for Monday evening, though they couldn't find much, even on an internal scan. The sonographer was really abrupt and cold with us and said I had a 'thick' uterine lining and also saw something that could have been a sac, but they said they couldn't be sure and chances were I was much earlier than 6 weeks. The sonographer did say said she could see it "was not an ectopic pregnancy" though.

Then on Tuesday, the spotting got a bit worse, not heavier, just brighter in colour which was concerning so I ended up phoning the EPU back Tuesday night and was advised to attend Wednesday morning for bloods. I went for these bloods, and my numbers came back at 1932, and they booked me in for a scan Thursday (yesterday) afternoon. They didn't tell me too much about the scan, just that there was "no sign" of a pregnancy. I then had a follow-up chat with the nurse same-day who said to me that I was likely experiencing a miscarriage (possibly already had miscarried) and that's why there was nothing on the scan. Though, they told me to come back on Friday (today) to have repeat bloods to confirm my HCG was going down.

I was understandably devastated and went home and have been grieving with my partner. I went back this morning for the repeat bloods and received the results in the last hour & they've risen. They're now 2595.

Now I've been told I have to go back to the EPU on Thursday 21st for a repeat scan and more bloods to "see if the pregnancy is progressing normally" - I said I had already been told I had miscarried, and I am still spotting bright red. They said that because the hormone levels have gone up, they can't tell what's going on until I go back on the 21st.

I was hoping someone can offer me advice/stories that may help me get through this 6 day wait until I go back to the EPU? I am really fearing the worst with an ectopic now, and feel I was misinformed by the private scan company I saw on Monday 11th as the EPU are clearly concerned I could be having an ectopic pregnancy.

I realise now that this is a complete essay and I apologise for that, thank you if you bothered to read all of this! X

@danielleb97 really sorry that you are going through this. I went through something similar a couple of months ago and one thing I would say is keep pushing your EPU to see you sooner so continue monitoring your bloods as really they need to be watching the rise over 48 hour periods.
I had suspected ectopic - which in the end wasn't fortunately - and they saw me regularly until my progesterone and HCG had lowered to a level where they were comfortable.
If you have any severe pain go to the hospital immediately (I did).
Fingers crossed things work out for you x

I’m so sorry you’re going through this. The uncertainty of the situation is just the worst!

I had an ectopic diagnosed in September after a couple of weeks of inconclusive scans, bleeding, and slow rising HCG levels. I agree with Busybee - the most important things is regular blood HCG tests because this will give most information.

What I would say is, perhaps prepare for the worst and hopefully that won’t happen. And most importantly stay away from Google! I spent hours looking for stories of people who were in similar situations and it wasn’t healthy at all.

It’s an awful waiting game, I’m so sorry xxx

@busybee93 @kate105 Thank you both so much for your kind words. It honestly is the worst. I already haven't worked since Monday, going to try and work on Monday if things don't get worse over the weekend.

So should I push the EPU for more bloods tomorrow? They are open 24/7 at the hospital I've been going to so I know I could ask to go then to keep up with 48-hour monitoring.

I'm also really not sure and unhappy about the private scan. Given there is a chance my pregnancy could be ectopic and is being monitored for this, I dread to think of the possibility of that if my symptoms hadn't of gotten worse I could be blissfully unaware of all this based off of that sonographers claim? Not sure whether to complain on that basis.

I'm definitely going to try and stay off Google - hard as it can be - have to distract myself with Netflix and my Kindle :') xxx

I’m sorry, the limbo is awful. I had an ectopic in October and they couldn’t see anything on a scan but your hcg is MUCH higher so it’s surprising. They also told me at one point they didn’t think it was ectopic, but now I know the figures it’s more common than people think so I’m surprised professionals write off the possibility so quickly.

My blood results in the end were the only thing that indicated it and they need to do a laparoscopy to check things out which is how my ectopic was found. I hope further bloods and scans can confirm what’s going on to save you the trouble of this. I would def keep pushing for them to monitor bloods as PP have said.

I have my fingers crossed for a good outcome xx

@Chica1990 thank you! So sorry to hear about your ectopic :(

Really? I haven’t looked too much into HCG levels or anything so I didn’t know if they were on the lower side or the higher side! I hate that I can’t even say for sure how far along I could/should be.

I’m surprised they wrote off the possibility with me too! It’s weird because no one at the EPU has outright said it could be ectopic, just warned me of the symptoms to look out for and said to call back ASAP if I experience any of them.

I’m guessing by Thursday they will be guessing that they should be able to see something, wherever it is, after waiting a week? Just don’t know how I’ll hold out that long without going crazy. Xx

So sorry you're going through this OP. My only advice to you is to keep pushing and read up on the NICE guidelines so you know what they should be doing, there is pretty of info for both miscarriage and ectopic - and it's much better than googling.

I agree with PPs and think you should push to get HCG levels monitored every 48 hours.

Fingers crossed for you x

How are things going @danielleb97 ?

Hi! Sorry for only just getting on here was a pretty traumatic day 😭

Scan was inconclusive again so they did more bloods yesterday around 12 ish and my HCG was 5151! Had to wait for doctor to get round to me and he was too concerned to let me go home so I had to be admitted.

They wanted to get me in for a laparoscopy yesterday to try and diagnose the pregnancy but couldn’t, I was distraught having to stay in overnight as I hate hospitals. Got rushed in for surgery first thing this morning which was good! I got lucky that the emergency surgery theatre had nothing on so because I was on the emergency list they picked me up straight away.

Came out of surgery and woke up about 12ish, had to wait on the the ward for 3+ hours for a doctor to tell me what actually happened... And they didn’t bloody find anything! He said there was a little bit of blood in the POD which they removed for me but no ectopic pregnancy - my tubes and ovaries were in such good condition they didn’t even want to touch them so let them be.

I’m back in AGAIN for repeat bloods tomorrow. The doctor said that the blood they found could have meant that the pregnancy was ectopic but my body was miscarrying it for me, so we are just praying the repeat bloods go down tomorrow... I don’t think anyone has the faintest clue what to do if they don’t! 😳 (side note but since I came out of theatre all my pregnancy symptoms have gone and I haven’t bled once... could it be that the blood there was causing HCG levels to be high? 🤔 not sure if that’s positive or not!)

Other good news is because there is no ectopic pregnancy and I recovered from the anaesthetic within an hour with no side effects and feel able to move, eat drink etc they discharged me about 4:30ish! Doctor said because there’s no ectopic that they can see I’m not in danger of rupturing anything so I’m allowed to recover at home for now. Feeling somewhat grateful I had the laparoscopy even though it didn’t conclude anything, because it’s allowed them to discharge me! So I’m back home with my partner and my dog which is the best feeling. Xx

Oh dear @danielleb97 I am so sorry. You have really been through it. Whatever happens, it will be really important to rest as your body has been through so much. I really hope you are able to get some answers in the next few days, what a brutal experience.

Wow @danielleb97 what a wait you had to go through for not really any answers. It baffles me how your hcg levels could be at that level and they didn’t find anything! I bet they were not looking forward to telling you that.

Hopefully it was self resolving itself for you and that’s the end of it for you so you can start moving on! Glad to hear you are back at home, I had to stay overnight after mine (first time sleeping in hospital) and I wasn’t a fan either.

Hopefully the bloods show it’s going down🤞🏻

What a day you must have had! Fingers crossed for you that it is sorting itself out. Good luck xxx

Welp, just had blood results back from today and they've risen again. 😓

Gone from 5151 to 5701 between Thursday and today, so now I have to go back tomorrow at 8am for another scan. 😭

I feel so mentally and physically drained by all of this now, would give anything for it to all be over so I can start to try and heal. I don't even feel like I can grieve properly yet or anything while I have no answers. Xxx

Oh @danielleb97 you poor thing! I just can’t believe it, what on Earth is happening? I hope they don’t put you through another laparoscopy. They’ve already done that so god knows what they think a scan will do?

You’ve really been through the wringer and I hope you get answers really soon 😞 keeping my fingers crossed for you 🤞🏻🤞🏻

I'm so sorry OP, this uncertainty must be awful. Try to be kind to yourself and get some rest before the scan.

Have your most recent scans been vaginal rather than abdominal? They are much more accurate. Have you asked where they've checked? It's very rare but ectopic pregnancies can implant in other areas, not just fallopian tubes.

Yeah, they checked all pelvic organs on the laparoscopy and had the footage and images to show me how good of a condition everything is in there. They said there was no sign of an ectopic whatsoever as usually there would be some indication of damage but there was literally nothing.

All my scans have been vaginal first, and then they do abdominal at the end just to check the areas the vaginal scan can't reach/see properly.

I went back for the scan yesterday and it was, unsurprisingly, inconclusive yet again. I also had another blood draw yesterday which came back at 6614 which means they've risen by just under 1000 in a day? Such a strange situation I am honestly baffled by it.

They are just saying it is a pregnancy of an unknown location and I have yet another invasive scan and bloods being taken this Thursday 🤦🏻‍♀️ at least the bruises on my arms have some time to heal before the next blood draw 😂 Got to laugh or I think I'll cry at this point.

I was thinking about you yesterday @danielleb97 hoping you would get some answers. This is the most baffling situation ever! What did they say would happen if your numbers have risen again on Thursday?

@danielleb97 I am so sorry you having to go through this.

I have gone through 2 ectopic pregnancies. 1 in the flopian tube and 1 on the outside of my uterus.
I really hope they have a more thorough look at this next scan, as there is clearly something there is the number keeps growing so rapidly.

Please keep us updated. Cant imagine the stress of the unknown and numerous professionals not getting it right xx

@danielleb97 just read your story. What a shocking thing to be going through and how incredibly emotionally draining not to be given any answers. I hope you get some news soon.

Just a small update.

I'm back this afternoon for another scan with a consultant, I think they want this consultant to check for something that's developed between the laparoscopy/previous scan and today given my hormone is still increasing.

Feel so fed up by all the uncertainty and I feel the outcome will be that I am offered the injection and just never get any real closure on where the pregnancy was. 😕

I feel like it'll be so hard to accept and I'll be equally as terrified to get pregnant again as much as I'll want to. I'm pretty sure we already have to wait 3 months after the surgery which feels so far away. X

@danielleb97 have been following this and thinking of you today. I know how awful the waiting is and the anxiety waiting for results can be. Lots of positive vibes being sent your way x

Oh wow they wanted you back in ahead of the blood test, did they find anything this time @danielleb97?

I really do hope you get answers as this must just be horrible 🤞🏻

How did it go this afternoon@danielleb97 ?

I hope you're okay OP. I can't believe they've not been able to locate the pregnancy. This limbo land is just awful.

@danielleb97 what a turbulent time you’ve had you poor thing! Having recently had an ectopic without any pain symptoms, only light bleeding, and very high HcG levels, I thought I’d be able to offer some help. This is beyond me though.
I wonder, do you live near a teaching hospital as sometimes they have better equipment and can possibly see more therefore??
I’m so sorry that you’ve been through all of this.
If you really have to wait, three months will fly by x x x

Hi all, bloods from yesterday rose again but a small-ish rise to 7320.

I’m back in on Friday for more surgery 😭 as they want to do another laparoscopy to do a surgical evac - the woman on the phone couldn’t even tell me what this is and what it’s for, all she could say is that it’s done via laparoscopy.

I’m hoping more will be clarified today for my pre-op appointment with covid swap and more bloods. :(

I’d give anything for this to all be over, really don’t fancy another overnight stay in hospital away from my partner xx