Threatened miscarriage/ ectopic - any experiences?

[musicposy]

Hi there, I've had IVF and had a positive pregnancy test after only one cycle - all seemed to be going well.
Only tested on Weds, so am only 4 1/2 weeks. Last night I turned over in bed and had a sharp pain around my left ovary - enough to wake me up. This morning found I'd had quite a bit of brown bleeding in the night.

Hospital have doubled my progesterone dose and said that my early scan (booked for 7 wks) can be brought forward if need be. I still have this pain around my left ovary - they thought it could still be due to mild hyperstimualtion but said they would keep an eye on it in case ectopic, but it's too early to see or do anything about ectopic. Also apparently ectopic comes with shoulder pain which I haven't got.

The bleeding has eased off, though not completely gone.

Anyone got any experience of this? I'm 43 so I know the miscarriage risk is high

Thank you

I assume that if I still have pain or any bleeding Monday they will arrange to scan me. Trouble is I think it's hard to tell very much at this stage. I don't think you can see it yet. They said they could give me progesterone injections but if it was going to mc, it seems weird prolonging the agony.

Oh well, sit and wait I guess.

ok, your EPU need to scan you, it is unlikely that it is a ep, however this needs to be ruled aout. any bleeding in early pg needs to be checked out. shoulder-tip pain only occurs after the tube has ruptured and should never be seen as "the first sign" i have had many mc's and an ep and have learnt over the years to be very forceful about getting scans. call NHS direct, tell them about the bleeding and they will arrange a scan for you. in the meantime any further pain call EPU or out of hours doc and insist on a scan.

I agree, you must insist on a scan asap.
Shoulder tip pain can be a symptom of ectopic pregnancy, but tends to appear later on (i.e. when things are getting serious - it is caused by blood leaking into the abdomen and irritating things) and I have had 2 eps but have never experienced it.

Sorry - I don't want to alarm you and the overwhelming odds are this is not an ectopic but better safe than sorry. Even if it is too small to spot anything on the scan (and my last pregnancy was seen at 4+4) the EPAU can do serial blood tests to see if everything seems normal. It's a bit of a rollercoaster but you need to be sure that this is not ectopic I think.

I imagine the pain could also be a corpus luteum cyst (normal in pregnancy, nothing to worry about) if those still happen with IVF.

I really do hope this all turns out fine for you.

Thanks, that will help me be more forceful. I've been under private hosp in London for the IVF and therefore phoning them but I guess there's nothing to stop me phoning the EPU, which although still 20 odd miles away (our nearest, I checked, and with no clinic times listed)and seeing what they say to save a trip to London - plus cheaper!

I'm a bit worried about having care split between two providers but it's a long way to London (not to mention all the expense)and the IVF clinic do seem a bit laissez-faire over this to me

Will an EPU understand what could be just down to IVF? I've had some frankly scary experiences with NHS in the past and whilst a scan would be useful, don't want them making mistakes.

the EPU will know what to look for (although it depends on the hospital) good luck. stand your ground.

god, this type of thing makes me cross.

I'm not any sort of an expert but can't imagine that a scan would be any different due to the IVF. These days they probably see a fair few IVF patients, and so if there are things they need to take into account (maybe when checking your hormone levels?) they ought to understand . If you're worried you can always check anything the NHS suggests with your clinic and having a scan and/or blood tests won't do any harm.

Some EPAUs are walk-in but many others require a GP referral (I guess NHS direct may also be able to help) or for you to go in through A&E. It might be worth calling them to find out.

EPU nearest to us in Worthing say on website they require a GP or midwife referral, no walk ins, will only do scans Monday - Friday (Sats in emergency but no Sun) and will only treat patients from 6 weeks pregnant. So what am I meant to do for the next week and a half?

Still, I will see how I go tonight (no one to take me anywhere, hubby at work 50 miles away) and maybe phone out of hours GP tomorrow and see if I get anywhere.

Oh, it really annoys me when they say they'll only see people from 6 weeks. It's because 6 weeks is the earliest you'd want to scan in the case of, say, threatened miscarriage. But it seems to me to be total bollocks with potential ectopics - and I bet they do see people sooner than 6 weeks sometimes.

I know you say London is out of the way, but worst case you could get youself referred to UCH (where they do scan earlier) or walk in at St Georges in Tooting. Speak to your GP -- hopefully he/she will be helpful.

just want to add that my epu will see me from 5w if i have had bleeding etc.

I've just had an ectopic pregnancy. While it was being investigated I was told if I had any pain to go straight to A&E and not try to get to the EPU if it wasn't the closest option.

I'd advise you to go to A&E if you still have pain. They will be able to scan you there.

I was scanned today at the EPAC because I have a lot of abdominal pain and don't feel that great at all. They took blood tests and said my hormone levels were good - quite high - but they couldn't see any uterine pregnancy which concerned them. There was some "free fluid" in my abdomen, whatever that means. Mind you, at only 5 weeks, I would have thought they might not see much anyway? They debated keeping me in but decided in the end to let me go home and said if anything gets worse to go to A&E. I go back for more blood tests on Friday and scan at 6 wks pg.

They said the pain could be adhesions caused by the egg collection.

Anyone else been through this? If I end up having a laparoscopy and there's no ectopic, will it harm a normal pregnancy?

With mine I had 2 scans and both times they saw nothing in the uterus. They aren't entirely sure where my pregnancy is, but when they can't find anything in the uterus then it's not viable, wherever it is.

You may not need a laparoscopy. I'm being treated with methotrexate, which is a drug that breaks down the ectopic pregnancy. I can't get pregnant for 3 months because it depletes the folic acid, but after that there'll be no scarring so hopefully no effects on long-term fertility.

They may well do the same with you if they aren't entirely sure where the pregnancy is. They won't do anything until they're sure it isn't a healthy pregnancy.

I know how awful this time is when you just don't know what's going to happen. I really feel for you, and I hope everything turns out ok.

i have no experience with IVF but i know that sometimes 5 weeks is too early...i would wait for a couple of weeks and go back (a long wait when u are worried i know) dont give up hope and let us know how u get on xxxx

Hi Musicposy, I'm sorry you haven't had more positive, definitive news.

At 5 weeks my most recent normal pregnancy was visible on an internal scan performed by a vvv good doctor, but I know that scanning is not cut and dried and what one person will find another will not. Any pregnancy at this stage would be tiny.

The way it works is that, once your HCG levels go above 1500 they expect to see a pregnancy in the uterus. If there isn't one, it may be ectopic. If they can't find the pregnancy on a scan (as is common with ectopics) they treat using either methotrexate (although not all units use it) or an exploratory laparoscopy. The exception would be where your HCG levels decline, in which case they monitor you to make sure the pregnancy is ending by itself. Ectopic pregnancies are generally not viable so there is really no choice.

They did manage to find both of my ectopics on scans, btw, but not until I was over 6 weeks. But do not worry, they will not do anything unless they are sure.

I'm so sorry that you've found yourself in this awful limbo, and I really hope things turn out to be ok.

My HCG levels were over 5000, which sounds very high for 5 weeks, then? They did say they would expect to see something at that level of hormone

It's reassuring that they will wait until they are sure - I'm so worried about them making a mistake and harming this pregnancy if it's normal, especially as it's taken us 8 years and a house remortgage to get to this point .

Muser, how far along were you when they gave you the methotrexate?

The other thing that worries me is that the woman in charge of the scanning was very dismissive before I even sat down. I had had IUI under the NHS with her - 3 cycles that didn't work and she seemed very stroppy that I'd gone off to London to get this IVF done. She said it was London's problem, not theirs. I said I went to the GP as I hadn't felt well enough to travel. She was very annoyed I had been referred to them and implied it was ridiculous to a) be having one at my age and b) to be having a third child. She said "Third child - huh! You're very brave!" but in a really sarcastic way. She was all very nice when I was having IUI there, but not at all yesterday. It's a ridiculous thing to get upset over - I wasn't even allowed IVF on the NHS, even if I'd wanted to, because I already have children.

I guess if I'm worried she's not doing her job properly next week when I return, I can always go back to the Lister in London for a second opinion before I accept any treatment?

I do so hope this is Ok because we can't afford any more IVF and I don't think I could go through all this again anyhow. I'm 43 and we've been told it won't happen naturally. So it's the end of the line for our chances if it's ectopic.

I was around 7 weeks when I had mine. My HCG levels were about 3500 which is low, and they weren't rising fast. Do you know whether yours are doubling every 48 hours?

No, as they've only done one blood test yesterday. Second blood test tomorrow to compare and see if HCG is doubling, which I think makes ectopic much less likely. I think if HCG levels are not doubling or pretty much, they'll admit me back to hospital.Either way, I'm guessing they still have to see something in the right place on that screen eventually.

I read your posts on here, Muser, and I do wish you all the best for the future. It's such a difficult thing to go through.

so sorry you are going through this - its just horrible. I had an ectopic in september where pregnancy was discovered in tube at scan not related to pain or bleeding (i had had a MMC in april and they were giving me a reassurance scan!) Nothing was seen in the uterus at 61/2 wks by my reckoning but they went on to do bloods which didn't double, they went from 3500 to 4900 in 48 hours which meant baby was likely in tube. Another lady scanned me and found seven and a half week baby in my left tube. Rushed straight into surgery and very very lucky as ruptured on the way and abdomen filled up with blood. DOcs said i was incredibly lucky. Lost tube tho and told i had lesions on my other tube.

really hoping for a good outcome for you....the waiting is just hideous.

xxxxx

Over 5000 does sound high for 5 weeks to me.
My ectopics were caught between 6 and 7 weeks and my HCG was never higher than 3000.

If you don't like the sonographer doing the scan you can always ask for a doctor to do it (there should be a consultant in the EPAU). It is important that you have someone decent because either way you want to feel confident in what they are telling you. With my second ep I had a private scan where the lady dithered and wouldn't come off the fence. Two days later I went to a big EPAU at a teaching hospital and two consultants together made the diagnosis and could find it on screen, which at least made me feel less worried that they might have got it wrong.

Fingers crossed the blood tests come back with good news. I do feel for you, it is such a rollercoaster.

How did you go today Musicposy?

Hi there, levels were 8000 ish. This isn't the double they'd hoped for , but is just around borderline for an ectopic indicator.(about 66%, I think) So the upshot is, I don't think they know what to do. They debated taking me in tonight, but I haven't felt any worse and because of that they thought they could just keep an eye, and said that if anything gets worse, to go straight to A&E.

Of course, since then, I've been really worrying and I think this makes everything feel worse. Today I felt quite bright but tonight, not so good, but I think it's worry. Hubby works nights 50 miles away so I have no way of getting to hosp except ambulance but I've given my 14 year old very specific details of what to say should she have to call one in the night.

I'm just hoping it's still a bit too early for it to cause me major serious problems yet if it is ectopic, but it's hugely scary.

I've spent half the evening crying and wishing that I could go back to Jan and I would never have had the IVF. I have two lovely girls; I must have been crazy, but of course, you can't tell how these things are going to work out. I just wish I knew one way or the other.

I don't know when I've ever been so scared. Sorry for the long outpouring, this is just so hard. It's nice there are people on here who understand, that helps a lot.

musicposy i am really praying for you huny. so hope this works itself out....

Thinking of you musicposy. The waiting is the absolute worst part. I'm glad you've got people here to talk to. I also recommend taking a look at the discussion boards on www.ectopic.org.uk. As well as people who have gone through the same thing they have professionals who can give advice.

Thank you for that, Muser, I've joined and posted on there. I'm still not convinced that I shouldn't be in hospital but if I push it they will just take me in for an op and I don't want that unless it really is necessary. There doesn't seem to be an option for them just to keep an eye on me in there. It would make me feel less frightened but it would use up an NHS bed.

Caught between the devil and the deep blue sea.