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Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

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Original poster

Does anyone have experience of molar pregnancy? Bit shocked here

126 replies

artifarti · 22/02/2011 15:42

I had a miscarriage and ERPC three weeks ago. Was just starting to recover from that when I got a phone call from my EPU today saying that I had had a molar pregnancy and am being referred to the specialist unit at Charing Cross Hospital. I have read all the information and am just a bit in shock with it all now. I know that the prognosis on all fronts is good but just can't quite believe it's happening to me. I wondered if anyone else had been through this and what their experience of it all was. Thanks in advance.

OP posts:

lisalou29 · 27/02/2011 19:25

Hi,
I had a complet Molar prgnancy in June 10 which was found at 14 weeks. I had a pre MC in Dec 09. It took a long time for my levels to drop but got put onto follow up Sep 10 til april 11. Im still finding it very hard to come to terms with, but Charing cross have been great they have always been on the end of the phone when im in tears trying to make head of tails of things. Im very lucky that I didnt need to have any chemo or any other treatment like some other ladys have, but its still very hard to let go. Alot of my friends when pg at the same time as me and they now have their babys and I dont.

I hope your levels come down quick and you dont have to wait to long to start ttc again. If you have any questions please feel free to ask away I will try and answer them. Take care. xx

Habbibu · 27/02/2011 19:28

Hi Lisa. Sorry you're still finding it so hard - it is rotten, that horrible "left behind" feeling. But there are lots of good news stories on this thread - my wee ds is one of them, conceived the month after I finished follow-up, so hang on in there. It really isn't long until April. Have you started taking folic acid yet?

Habbibu · 27/02/2011 19:29

And hello arti. Hope you are ok.

Original poster

artifarti · 27/02/2011 20:02

Thanks for posting lisa (and hello Habbibu). Glad to hear you are nearly at the end but sorry you are finding it hard. April is only a month away now really so you are so nearly there. I'm glad to hear that Charing Cross are good.

I had a lovely weekend away with our friends and all our children and managed to put all this to the back of my mind but today I am tired - and hungover for the first time in a long while! So wasn't happy to get home and find that my hospital haven't sent through any of the stuff that they said they had posted a week ago. I didn't really expect to hear from Charing Cross yet so that was no surprise. But I just feel so totally in limbo so I had a very big cry indeed. Sure I'll feel better after a good night's sleep.

Blackkat - thank you for asking. And I'm glad to hear that your service was helpful in some way (other thread), although I'm sure sad. Hope better times are round the corner for you.

OP posts:

Habbibu · 27/02/2011 20:07

Limbo feeling is vile - remember it with a shudder (and memories of big cries in work toilets!). When you start testing you'll prob get a sense of moving forward, even if in just a very small way. Hope you get some rest.

Blackkat · 27/02/2011 20:59

Hi arti glad you had a nice weekend away, hope tomorrow is a better day for you. ((hugs))

Thanks for your kind words, the service was a real help, feel much better today x

Original poster

artifarti · 28/02/2011 12:33

Spoke to my hospital to chase up missing information and found out that I have had a complete molar - i.e. the type more likely to require chemo. I feel like every statistic is going against me at the moment.

OP posts:

JiltedJohnsJulie · 28/02/2011 12:39

arti really hope that you don't have to have Chemo. Will you get your appointments at Charing Cross? Hopefully, you will know more soon.

exexpat · 28/02/2011 12:48

Arti- just chipping in to say that most people with complete molars still don't need chemo.

I had a rather persistent complete molar and needed three D&C's within the space of about two months but still avoided chemo. That was ten years ago, I had a one-year wait from around the time of the 3rd D&C, got pregnant the month I got the all-clear, and DD is now 8.

Hope all goes smoothly for you.

Habbibu · 28/02/2011 16:41

As exexpat says, it's still not likely you'll need chemo, though I know you must have that horrible "what next?" feeling atm. If you do have regrowth, odds are they'll do an ERPC under ultrasound, so they can check they've got all the tissue remaining - I had a second one under u/s. I know you feel rotten atm, and hope CC are in touch soon - have you called them? I'd get on the phone if you have any questions - I've only heard good things about the unit.

lisalou29 · 28/02/2011 16:54

Arti- I had a complet molar and didnt need to have chemo. As long as your levels are coming down there will be no need for any treatment, but you wont know that till you start having bloods tested to see where you hcg levels are. I know its hard not to worry but once you start with the testing things will start to move forward.

April's not to far away for me now but it feels like its been forever to get here, my family have been really good with it all, although they have found it all quite hard to understand, I hope you have a great support team at home and charing cross are always on the end of the phone. xxx

Original poster

artifarti · 28/02/2011 16:57

Thanks everyone. I called Charing Cross this morning and I was registered last Friday so they said my piss-in-the-post home correspondence kit should turn up in the next couple of days.

Feeling a bit more rational now but it's so hard to take refuge in statistics (85% will not need chemo etc.) when you've just scored a jackpot with the "only 1 in every 1,000 pregnancies are molar" stat.

OP posts:

exexpat · 28/02/2011 17:02

I know what you mean about the jackpot thing - I know someone has to be the 1 in 1,000, but I remember feeling why did I have to be that one, rather than the one who won the school raffle or whatever.

Still, reassuring to know you are now in the system at Charing Cross and with any luck you'll be tracking your hormone levels falling rapidly with no further intervention required.

Habbibu · 28/02/2011 17:03

Oh, god, yes - I remember that exact feeling!

JiltedJohnsJulie · 28/02/2011 19:22

Oh I remember that feeling too, especially as we had another pregnancy ended in another condition we had never heard of either.

Like the others have said though, there is a good chance that you won't need Chemo.

Habbibu · 28/02/2011 19:41

yy, JJJ - I remember ghoulishly calculating the odds of the things that happened to us actually happening. they were disconcertingly big, though, as was pointed out, not as big as those for winning the lottery, which somehow disappointed me...

Blackkat · 28/02/2011 19:46

arti , really hoping you don't need the chemo

JiltedJohnsJulie · 28/02/2011 19:47

Surely though, after we've been tapped with the unlucky stick a few times, its our turn for the lucky stick?

cep · 01/03/2011 18:22

arti fx you won't need the chemo. thinking of you.

Original poster

artifarti · 01/03/2011 18:55

Thanks cep. And congratulations to you! I really hope that all goes well for you. I feel like I was only on the TTC after MC about five minutes and didn't really get to 'know' anyone but everyone was so supportive to each other. Who knows what we would do without MN at times like this?!

OP posts:

cep · 01/03/2011 19:11

thankyou . definately, i would have been a lot worse if not for the ladies on the ttc after mc thread. it always helps to have people to talk to who have been there. i wish you all the best of luck, and don't forget we're still there on mc thread, if you need to chat.

Chloe55 · 02/03/2011 11:19

Arti I am so sorry to read this news. The replies you have had are very inspirational though and I hope you can find some sort of comfort in that. I hope the hospital are looking after you well and you are getting good support at home.

Original poster

artifarti · 02/03/2011 20:11

Thanks Chloe. Everyone on this thread is great. It's such a freakish condition that talking about it in real life tends to make people look horrified and/or confused like I might be making it up so it's nice to talk to people who've been through it and come out the other side. I also have lots of lovely family, friends and colleagues so I count myself very lucky (well apart from the obvious unluckiness of being dealt this crap in the first place!)

Piss-in-the-post kit arrived today so I am off to the hospital first thing to have bloods taken and sent off. Gulp. This is where the fun begins, I guess.

OP posts:

Habbibu · 02/03/2011 20:50

My consultant took my first bloods. I thought "oh, that's nice, personal service and all that". A day later, when a HUGE bruise came up, I realised there's a reason consultants don't do their own bloods. The MWs were pissing themselves laughing and he looked very sheepish when I rolled up my sleeve and said "Look what you DID!".

Good luck tomorrow - remember the first number doesn't mean a great deal - it's the next that counts, so they can see whether it's going up or down.

Blackkat · 02/03/2011 21:44

Arti Good luck tomorrow, will be thinking of you. Hope you don't get the Consultant to do the bloods! xx

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