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Find support and share your experiences on our Miscarriage forum.

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Find support and share your experiences on our Miscarriage forum.

Miscarriage/pregnancy loss

Molar pregnancy - please tell me your positive stories! I need cheering up...

264 replies

Habbibu · 24/04/2008 15:31

Just back from hospital - test results after EPRC showed partial molar pregnancy. Tired, fed up and in need of good news stories. Please!

OP posts:

Report

mistlethrush · 08/10/2008 21:51

Admitted for initial checks then first lot of treatment - but yes, staying in specialist Cancer hospital makes you think. Felt a fraud as I was effectively fine - just needed treatment - whereas other people on the ward I was on had secondary breast cancer etc. Some grim scans on lightboxes, 'crash' events in the middle of the night.... Makes you think.

Sorry Hab - yes, we did get off lightly!

Habbibu · 09/10/2008 13:59

Ooh - no - I meant I got off lightly, compared to you two!!! My mole barely persisted at all, after the second D&C...

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mistlethrush · 10/10/2008 19:11

I know - but I got off more lightly than hj, and we've all managed not to go through anything worse with it. There was a lady on the ward I was on who, despite going to Drs and Consultants numerous times wasn't diagnosed for 18 months - she had to have hysterectomy, and they were giving her a detailed scan of all her other organs...

Did you know that one of the Bronte sisters might have died of a mp?... Hypothesis that I have heard....

Habbibu · 01/12/2008 16:08

Woohoo! Just put what should be the last pot of piss in the post. The pisjoeg is cleaned and I hope the next time I have to use it is for a healthy pregnancy to prove I haven't been entirely subsisting on sugarcubes. Roll on Thursday....

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gnatbite · 01/12/2008 16:51

Hooray for you! Did mine last week, felt that putting the piss jug in the dishwasher rather than just washing it by hand was a poignant way to mark the end of this journey!! Hope yours is out again soon for pregnancy purposes - good luck

Aniyan · 01/12/2008 17:40

Hi ladies - sorry to gatecrash the thread, but I've just been referred to Sheffield following diagnosis of a partial molar pregnancy, and I have an embarrassingly trivial question for you!

I'm getting my head round it all & as my hcg levels are dropping like a stone I'm feeling pretty positive - though aware it's the start of a long haul.

I haven't heard from Sheffield yet, but the nurse at the hospital I was seen at originally told me I'd have to 'do that thing where you collect all your pee for a day and send it off to Sheffield' - whilst holding her hands apart to show me the size of the receptacle I'd be collecting it in - looked like something not far off a milk churn

Now, from what I've read I though I'd be sending off teeny little pots of pee - please tell me this nurse was hopelessly misinformed!

Thanks in advance - also wanted to say that, as a newbie to molar pregnancy it's so good to read this thread and others and hear positive stories

Habbibu · 01/12/2008 18:10

Aniyan - I was based at Dundee, but I think the technique is the same. You collect a 12 hour sample in a specially dedicated piss jug (we think IKEA should make one, hence pisjoeg), note the volume (which is an education) and then decant a little of this total sample into a tube. Might be worth asking Sheffield about this - I got a kit sent out in the post each time.

You do it overnight, so it's not too onerous - you get very used to the big jug of piss in the bathroom.

I'm sorry to hear about your diagnosis - it is a PITA, but there is brighter light at the end. Good luck!

Gnatbite - yay!!! Was so happy posting the sample. I take it your results were clear?

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ruddynorah · 01/12/2008 18:15

hey aniyan- i've just been referred to sheffield too. i'll join you in buying a pisjoeg

gnatbite · 01/12/2008 21:46

All clear thanks. I have just realised that it's nearly exactly a year since I got pregnant. It sounds mad, but it really has gone very quickly (complete molar diagnosed in February). My levels went down slowly but surely on their own. I am very unsure at the moment about trying again, I can't imagine just having one child (I have dd nearly 2) but I just can't imagine being pregnant again either! I guess I still have a way to go!

Aniyan and ruddynorah, sorry to hear that you have both just had molar diagnosis too, I hope that your levels drop quickly.

Aniyan · 01/12/2008 22:08

Thanks for the info, habbibu - the pee collecting doesn't sound too bad. I shall have to invest in a nice colourful pisjoeg - already had enough of peeing into dreary little sterile pots after one mmc and now this molar pg

Hi, ruddynorah - sorry to hear you're in the same boat, but also glad to have a travelling companion!

My hcg levels dropped from over 99,000 to 91 in the 3 weeks following the erpc, and this morning (4 weeks post-erpc) I did a home test (first and last one - I refuse to become an addict) and it was negative - obviously this is not official, but it was a relief, as I had a mmc in July and it took ages for my hcg to drop.

I already have ds who is 9, and we're hoping to get him a little sibling sooner rather than later - so this 6 month delay is a pita. Have you got any dcs already, ruddynorah?

ruddynorah · 02/12/2008 18:12

yes i have a dd, aged 2.5. this one would have been due in april.

had erpc end of september, only got called in to be told it was molar yesterday.

so far they've said it is partial, spine was seen at 12 week scan..which diagnosed missed miscarriage.

they did urine test (showed faint positive for Hcg) and blood which is to be sent to sheffield. i then have to have another blood test around about boxing day (within 3 months of erpc). from this, i gather, they will have some base results. then i do the sheffield piss by post thing.

i guess it's good the urine was a faint positive and not a screaming loudly strong positive?? anyway. we shall see. i can ring in 3 days for blood results which i guess will give me an actual reading.

Habbibu · 02/12/2008 19:19

Think faint positive 3 months down the line is v. good - my results (from about 2 weeks after ERPC) were as follows - copied over from mp forum:

1st result was 5000, and next was 6000, so was called back in for u/s, which showed a regrowth. Had 2nd ERPC on 16 May.
21 May - U/S looked clear, blood 3300, urine 6600 - oddly!
29 May - urine only - 360
5 June - 77
Oh hurray! Down to 16 last week - Dundee have told me that if it's down again this week they'll count the 6 month follow-up as starting from last week! So this could all be over by Christmas...
Update - 0 the week later, thank goodness, so am almost 3 weeks into 6 month follow up

Once down to zero, I had 2 fortnightly checks, and was then monthly. Keeping fingers crossed for Thurs now...

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hazeyjane · 02/12/2008 20:30

Hello

Sorry to hear about your molar pregnancies, Aniyan and Ruddynorah, mine was in 2003, which seems like a lifetime ago (well 2 lifetimes i guess, because i have had 2 dd's since!) I hope you get some good support at Sheffield, and here

Habbibu (and gnatbite)- YAY! that your pisjoeg is now in storage (I have to say dh threw mine out, muttering something about never having to see that grim object in the bathroom again). I keep my fingers crossed for you both.x

Habbibu · 04/12/2008 14:48

I'M OFF THE HOOK!!!! HURRRRRRRRAAAAAYYYYYY!!!! Just phoned lovely lovely Trish at Ninewells, at 2:30 on the dot - said "Hi Trish, it's Hab", and she burst out laughing - she hadn't had a chance to even look at the results.

But it's clear, I'm free, pisjoeg can go away. Thank heavens it's all over. It has been a long year.

Thanks so much to everyone who has posted on this thread - it's been enormously helpful, and really lifted my spirits. Onwards and upwards. Hope to see posts like this asap from ruddynorah, aniyan and anyone else still going through it.

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hazeyjane · 04/12/2008 19:25

Fantastic news Habbibu! Like you say onwards and upwards

Dh and I have just done a couple of photos of us and dd's to send to our nurse from Charing Cross and the consultant at Taunton (who persuaded us to have another go at ttc when I was to scared to even think about it).

Coming on this thread has reminded me just how amazing they were, and I've been meaning to do it for ages.

Good luck and strong positive thoughts to anyone else going through it.

Aniyan · 04/12/2008 21:25

So glad to hear your good news, Habbibu

Well, I got my first package from Sheffield today, so tomorrow morning I'll be decanting pee into the ridiculously tiny tube-thing they've sent me and posting it off to them.

Can they tell your hcg level from a urine sample (i.e. an actual number/amount rather than a 'yes, there's hormone in that pee') - or do they have to do blood tests for that?

Habbibu · 04/12/2008 21:33

Yes, they can tell levels from the urine sample. Have you got your pisjoeg all ready? I was so twitchy the first time I did one I kept getting up in the night to pee. Produced over a litre!

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Aniyan · 04/12/2008 23:14

Good - I'm glad they'd be able to give me a proper hcg level as I'm hoping it will have continued to drop as reassuringly as it has done so far.

Off to bed now, pisjoeg ready and waiting in the bathroom

ruddynorah · 06/12/2008 18:19

marvellous habbibu! hope i'll be there soon.

monkeybumsmum · 07/12/2008 21:19

That's great news Habbibu, so pleased for you that you got the all clear.

Only just seen this thread, and have spent ages reading it (dh is sat wondering where I've disappeared to ). It's great to hear such positive stories, and makes me think that there can be a happy ending after what we've all been through/are going through.

Wishing you lots of luck for the future - will be checking to see how you get on, and hoping that this time it takes less than five months! x

gnatbite · 09/12/2008 12:56

Good news Habbibu!! It is a relief isn't it, even though the results have been clear for a while, it's nice to put a line under everything so to speak. To everyone else, I hope follow ups etc are quick and non-eventful! Good luck all

Aitch · 09/12/2008 22:11

oh that is GREAT!

and i see you've found ruddynorah some time ago, i've just directed you to her latest thread. [dumbkopf]

Habbibu · 09/12/2008 22:48

s'ok - I didn't realise she'd started one, so it was good to be directed.

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mabelina · 13/12/2008 18:51

My friends was told she had a molar pregnancy at 5 weeks but everything would be fine. She is now 17 weeks. I had never heard of this and when i mentioned it to my doctor, he said there was no way she would have this baby. Ive still no idea what a molar pregnancy is. My friend is also a midwife and says there is nothing to worry about?

ClaireSlater · 14/12/2008 12:35

Hi Everyone,

Sorry to gatecrash your discussion. I'm a 4th year medical student and I just wanted to ask you all for some advice. I hope that's ok. As part of our course this year we have to complete a project on communication of health messages. I chose to work towards producing a leaflet on molar pregnancy. The leaflet will be for health professionals to give to women after they are told they have a molar pregnancy. It would be really helpful to know what you think should be included in this leaflet.

What information do you think the leaflet should include? What questions did you have when you were first told? What sources did you use to get information from?

I'd really appreciate any ideas or thoughts. Thank you all very much

Flip

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