Ectopic Pregnancy - can't have more methotrexate, but they can't see a baby!

[naynay]

Hello,

I was diagnosed with an ectopic pregnancy (my third failed pregnancy sadly), about three weeks ago. They've tried MTX, but it hasn't worked and they can't give it to me again because I had a weird reaction to it. So I guess the next option is surgery, but I'm really worried about it because they can't find the pregnancy on any of their scans, so I feel like I may get operated on for nothing. Also, I get the impression that they've run out of options after that. My levels are pretty now (about 600), but they aren't budging at all, even going up slowly.

I was just wondering if anyone else had been in this position? I've looked on the Ectopic Pregnancy website, but they don't mention what happens in this case - I feel like a bit of a freak who is going to be half pregnant for ever. Any advice would be really gladly received. Thank you

Hi
Sorry about everything you have been through.
I am going through a similar situation I think, although it hasn't been going on for as long. The first hospital I attended thought it was possibly ectopic as HCG blood levels were 1600 but nothing could be seen in the scan. I had HCG levels checked after 48 hours and they had risen to 1700.
I attended my local hospital 2 days later and they said I had a miscarriage at some point and wouldn't test my levels again. I don't know how I could have had a miscarriage as I haven't had any bleeding apart from about 3 spots of blood.
I am still testing positive for pregnancy despite 2 internal scans that have shown nothing.
How do they know that yours is ectopic?
How often are your levels checked?
Sorry I can't offer any advice but feel I am also in limbo like you.

So very sorry to hear you are going through this.

I has an ectopic pregnancy in May 2010. I wasn't offered methotrexate & had my left tube removed. My beta HCG levels were pretty static like yours at around 400.

I was terrified that they would operate & remove a healthy tube or damage a very small intra uterine pregnancy as my scans were inconclusive. My operation revealed an obvious ectopic pregnancy & 350 ml of blood in my pelvis.

I waited two months, my husband was in Afghanistan so actually I didn't have much choice. I fell pregnant the first month we tried & had my DD in April 2011.

I found lighting a candle on the topic pregnancy trust website helped. I have been back and lit further ones on the due date & one year on.

Wishing you all the very best,

Hi. Sorry to hear you're going through this.

Given a choice i would opt for surgery for them to look in and see if they can locate the pregnancy.

I was seeing a recurrent miscarriage consultant when i had my etopic. I was having early scans from 5wks. They saw a mass in my womb and were unsure if it was possibly ectopic but they couldn't see my tubes at all.
After a week of going back for blood tests they finally decided it was probably a miscarriage, i had a d&c that afternoon & sent home that evening.

A week later after i was still bleeding, in pain & still getting + tests i rang up the EPU and asking if i could come in for a blood test & a scan as i felt there was something still wrong. Went in & scan showed nothing so i had to argue for a blood test which they said i didn't need.

That evening i got a call to say my hcg levels had risen since my d&c & it was ectopic & to come in at 9am the next morning.

Later on i got terrible pains and my heavy bleeding continued, i went to a&e. On call gyne doctor told me to go home & treated me VERY badly. Shipped off to a ward only because i was adamant something was wrong. Gyne doctor even said that isn't alot of bleeding.... it was dripping out (sorry tmi).
I was left on the ward until 11.15am when they finally got round to scanning me & only then did they discover my ectopic & it was about to burst.

They didn't think it'd be a problem because my hcg levels were low (under 500) so didn't expect for me to get so ill during the night.
I was rushed for surgery where they removed my left tube & found i was bleeding out & internally.

I obviously was given a choice in the treatment i could have had due to the doctors being negligent on so many levels.... from my first scans to the final scan where the pregnancy was discovered (at 8 weeks).
I don't like the idea of leaving a pregnancy and just waiting but thats just me as i know what happened to me when that happens.

Sorry i can't offer any real advice, it's such a heartbreaking position to be in.

Thanks so much for your posts - I'm sorry that you're all having or had such a difficult time. Lindorchocs to answer your question, they say it's ectopic because my levels aren't going down, they tend to stay around the same or go up with ectopic, but not up as fast as a normal pregnancy which doubles each day (I think). And they can't see anything in the womb - or tubes, so they don't have any idea where it is. My levels are checked about once a week (more often that that after the Methotrexate).

They called last night to say they want to wait and do another blood test in a week, to give the levels a chance to go down. If that doesn't work it'll be an operation (though they don't fancy their chances of finding anything). Serendipity, it sounds like your hospital have treated you really badly - I dread to think what would have happened to someone who wasn't tough enough to stand up for themselves. Lucky you did. Not that lucky is exactly the word to describe it. For the moment, I'm ok to wait because I'm hardly bleeding and not in any pain - if that changes I'll go back in again I guess. And I'd so much rather be at home right now than stuck on a hospital ward again. I'm just crossing every finger that the levels go down by next week, because I just don't want yet another operation (last 2 pregnancies ended up like that, one miscarriage one molar pregnancy....oh the joys).
And toobreathless - thank you for the note of hope.

All best all of you.

• Lindorchocs let me know how it's going. I'll be thinking of you. I hope they explain things better to you - it can be so confusing sometimes can't it? Totally depends on which doctor you get. If you have any more questions I'm happy to answer if I can.

Hi everyone
naynayI hope your levels go down next week after all you've been through with your other pregnancies too. The waiting is just awful isn't it?

I have just come back from seeing the GP as I started bleeding heavily this morning. He phoned the EPU and they don't think I need to go in, but they have said they would test my HCG levels. So the doctor took blood which the hospital will test. I should get the results tomorrow. I am so frustrated because I asked them repeatedly to test my levels at the EPU on Monday. I hope this test will give a clearer indication as to whether it's ectopic or not.
I am so annoyed that they sent me on my way saying it was a miscarriage despite not having any blood loss. Is this bleeding now the miscarriage? but surely it can't be because there was nothing to indicate a miscarriage was going to occur from the scan on Monday. If this blood is not a miscarriage where is it coming from?
I am so confused and not sure that googling symptoms and reading every post on MN is doing any good either!
I just want to feel 'normal' again

Hi Lindorchocs. I just wrote you a post and deleted in by mistake - so if you get two, then that's why!

Was just to say that the bleeding could be a miscarriage - it often happens later than you'd think. But of course you need to understand why they think that it is one, even when they saw nothing with an internal scan. If your GP hasn't explained this to you, then maybe you could call him/her back to get an explanation? It's hard enough going through all this without feeling like the professionals are backing you up or taking you seriously. Not understanding is just so stressful and scary isn't it?

Well done though for getting them to do the blood tests - that should really help. If the levels are static then that's a pretty good sign that it's ectopic I should think. If they're going down that it might be more likely to be a miscarriage.

There's a good website called the Ectopic Pregnancy Trust you could check out. Or Dr Leslie Regan is the expert on miscarriage - she might have a website. But don't drive yourself crazy - I know how hard it is not to spend hours on the web!

Good luck and all the best for your results.

Thanks for all your advice naynay,
I feel guilty that you posted hoping for some advice and ended up giving it instead!
The GP phoned yesterday and they are going to take some more HCG levels next Mon and Fri so feel a bit more reassured that I am being monitored. A nurse from my local hospital also phoned and was just lovely, she also wants me to go for a scan next week to reassure me and she apologised for the dismissive way I was treated at the hospital last week.
The nurse was very reassuring as I had lots of unanswered questions so I feel much better knowing more. I didnt realise I would feel so lightheaded and weak. Although feeling a bit better this morning.

Hope you have lots of lovely people looking after you and good luck for next week.

Hi Naynay. I had a very similar story to yours. I was scanned by the sonographer in EPU twice who couldn't find anything. I had bloods every 48 hours. My consultant (who had extra qualifications in scanning) found it after scanning for 40 minutes because she wanted to be sure it definately wasn't in my uterus or tube, as I'd already lost a tube the last time. My levels didn't drop initially and i was back and forth to the hospital every 48 for bloods, after a week they began to drop. I was more frightened when it wasn't working because of surgery. You can always ask for the EPU consultant to scan you.

Thanks Loopybear - I had some good news last week as my levels have dropped about half way to 200, so I'm just praying that they'll make it down to zero. I have to wait another week for the next blood test, so my fingers are crossed.

And Lindorchocs - I don't know if you're still checking this thread, but hope all went well for you - or at least got clearer. Sounds like you found a good n with the nurse. I don't know if it will be the same for you, but I've found myself on a bit of an emotional rollercoaster once the levels started dropping. But I guess that's normal. xx

I had surgery for an ectopic pregnancy just under a fortnight ago. Was scanned on Friday, assuming it was a miscarriage. Was very surprised to be told it was an ectopic pregnancy but they hoped it would resolve itself. It didn't. It ruptured 48 hours later and I had to have surgery and tube removed. The strange thing is that I feel much less emotional about it than I think I would have done about a miscarriage. I think the focus on the physical emergency meant I rather forgot about losing the pregnancy. Now wondering whether I am just cold, unfeeling cow.