Many thanks to everyone who has contributed to our Miscarriage Code of Practice recommendations for Alan Johnson, Lord Darzi all other UK health ministers. We've compiled into a list of 10 key recommendations here.
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Miscarriage
: Molar pregnancy - please tell me your positive stories! I need cheering up...
(194 messages)
I'm really sorry to hear that you've got to go through this as well. I haven't had a molar myself, but have heard of a number of people who had and then went on to have perfectly normal pgs.
Thank you, and thanks for the leaflet - that's really helpful. Luckily, our local hospital is the regional follow-up centre, which does make things a bit better. Just really bloody fed up, tbh - may start gambling - risks of anencephaly are 1 in 1000, risks of molar pregnancy 1 in 1200. Perhaps a lottery ticket is required? Virtual chocolate and (not sure. Gin, possibly?) gratefully accepted...
This happened to somebody I know. It is very hard to deal with - not least because you have to wait before trying to get pregnant - when all you want to do is get pregnant. Her HCG levels normalised very quickly and everything is looking good. Give yourself a bit of time - maybe you and your partner could do with a holiday?
With various things, we have tried to take the approach that we have got rid of all our bad luck chances, and now should therefore, get the good luck. Still waiting though... Dh has a theory that theres a finite amount of crap to be endured in your life, so you must have run out of the allowance now.
Here - have a bloody big Bombay Sapphire martini on me. And theres a huge bar of Green and Blacks to go with it
cmot - oh, I do hope so. Feel a bit worn down by this just now.
NL - we've just been on holiday, unfortunately! Just after ERPC. It was lovely, but am back down to earth with a big bump now. To be honest, having to wait to try again may be a bit of a blessing - was feeling a bit weary at the thought of another pregnancy and all the stress and worry, despite wanting another baby very much, so maybe an enforced break from thinking about when to try again will do me good.
Ooh - have just ghoulishly done the maths - risk of anencephaly x risk of molar pregnancy = 1 in 1200000. Bloody hell. Is that better or worse than odds of winning the lottery?
6 months - he did say it might be ok after 3 or 4, but because of anencephaly I have to take high dose folic acid for 3 months ahead anyway, so it's all a bit moot really - I probably will just keep taking it, I suppose. Gah.
God, I don't know, Aitch. Just seems like it shouldn't be this hard. I still know people with far worse stories than mine, tbh, and thank my own stars for my beautiful girl. (Thanks for sharing that delightful story, by the way. Didn't know it was possible to laugh and retch at the same time).
Thanks, Molly. Fingers crossed it's just the one, mind...
it's not fair, i'm so pissed off for you. there was a woman on the EPT boards who had an ep then a molar pg and then a jolly, fat little boy i remember. she thought the sun and the moon shone from him, quite rightly.
that's a huge thing, imo, respecting your HCPs, really aided my recovery. actually i should say really damaged my recovery from eps after loathing my HCPs...
It's silly stuff that helped - today, after all the detail, he was asking how we were, and then said "Are you still close to your mother and sister? You had lots of support from them last time, didn't you?". That was 3 years ago. It's not in my notes. How does he remember this stuff? I said as much, and the midwife nodded in sage fashion. He's a fucking star.
Hi..did not want to read and run....My sister had a molar pregnancy and now is having her third child on saturday induced.she waited about 2 years befor ttc but had all 3 normal pregnacies and healthy babies. also it may be possible that you have to be monitored throughly during and after your pregnancies specially hen you want to go on the pill because there might be issues related to hormonal problems after having a molar pregnancie.i truly hope that soon you have better news.if you want to talk, feel free to CAT me or e-mail me lenacoelho2004@hotmail.com.big hug to you and your family.
he sounds truly lovely, hab, that's great. i love my consultant for that as well. although when i visited my SiL in hosp last year he badgered me about my high BPm which i'd prefer he forgot about.
OK, before I go to bed, here's my big-up to Ninewells:
Dr A - a star and a hero Midwife counsellors - who listen, arrange scans within 5 mins, phone up and let me cry at them for ages and ages Sonographers - who take the time to break bad news gently and kindly, who are genuinely delighted to see us again and came rushing to find us on postnatal ward when LittleHab was born Receptionists in ultrasound - who remembered us, ensured privacy and dignity when it was required, and were also excited about LittleHab's safe arrival Midwife who delivered dd1, stayed with us, talked to us about her, took photos and tucked her up cosily. She then came to find and hug us when LittleHab was born ... and so many others. It's an amazing place and a model of good practice for pregnancy loss.
Thanks, everybody. It's been good to talk about it tonight - part of finding a home for it, I guess. Off to bed now. Hab x
Your odds are immediately better because you have a partial rather than a complete mole. The chances of you having secondary moles is much much lower because of that.
Your HCG should also be less elevated that a full mole, so should go down to the required level faster, which reduces the follow up period (which influences the non-pregnancy period) too.
You will need to take care with some forms of contraception - any hormonal based methods (pill and some coils) may not be used because the hormones can increase the likelihood of recurrance.
Please don't hesitate to CAT me if there is anything at all you want to know about my experience of molar pregnancy.
Thanks so much, all of you. Woke up in a bit on a slump, so it's lovely to have all these kind and thoughtful messages. Soapbox - that's really helpful, thank you.
Don't know what it is now - they are sending out a kit soon. Don't think they do it weekly - as far as I recall they look at the first two and decide how frequently to monitor after that. Just tried to phone the unit prompted by your post, but got voicemail (she sounds v. nice!) - will try later on. I have no idea what a high level is!
I've had a partial molar pregnancy before at the end of 2004, had a year of doing urine tests for a hospital in Sheffield to make sure my hcg levels were ok.
At the end of the year I became pregnant with my dd, because of molar pregnancy I did get two early scans one at 6 weeks and one at seven weeks, which sort of put my mind at rest (never really fully relaxed until I had her in my arms).
Anyway, dd will be two in August and she's just perfect!
Hope this helps and that everything goes well for you in the future
Oh Habbibu, I've just seen this. sorry to hear the news
No experience, but just wanted to say it sounds like you are in good hands and you sound positive and strong. Thinking about you, and wishing you well for the future and hopefully I'll see you back on KCA before I graduate in November.
Hello, Daisy, and thanks - you've been an absolute star over all this. Yes, onwards and upwards, I hope. Thank God for MN. You're all bloody marvellous.
I had one 7 years ago. I already had had one normal pregnancy. Hcg levels normalised quite quickly, did monthly urine samples for about a year, although was down to negative within 3 or 4 months iirc. I then, for various unrelated reasons left it before trying to get pregnant, but now have a healthy and happy 5 year old after a trouble free pregnancy. When I did get pregnant with him, I had to get an early scan, otherwise antenatal care was all the same. After ds was born I had to have a final blood sample taken to again monitor hcg levels.
Sorry, posted before I'd finished. Just got the facts down first. Wanted to say it is a crappy thing to happen, but monitoring is excellent. There are quite alot of us on here who've had them so come back if you want any more help or support. In the meantime take care of yourself x
I've had a partial molar pg as well, between dd1 and ds. I got pg with ds rather earlier than i was meant to (my hormone levels took flipping ages to go back down) but all was well. I've since had another uncomplicated pg as well. Do CAT me if you need support. It was hideous at the time (I went back to smoking and drank far too much) but it does get better with time, if you hang on in there.
My goodness! You are all lovely. Feeling so much better now. Showed this thread to DH and it's really cheered him up. Wish I'd known about MN when we lost dd1 - we were desperate for good news stories then. Thank you, all of you.
oh i'm so glad that your DH is feeling a bit supported on here as well, because he deffo is, even if you're the one we all know. it's tough on the boy heart too, all this pg stuff.
Hello all - could do with some more advice. Bleeding/lochia post EPRC stopped probably about 4/5 days ago - nice healthy seeming tailing off, colour change, etc. PILs dropped by today, and while chatting I suddenly felt lots of fluid in my jeans... Now, I have pushed out a 10lb 11 baby, so my pelvic floor isn't what it was(!), but when I got to the bathroom, it turned out to be blood. Fairly bright red, looked like period blood, tbh.
Phoned hosp, and nice nurse said it's most likely to be a period - she said to keep an eye for changes/too heavy bleeding/going on too long, and she's making a note in my notes. I feel ok - tired, but no more than that - and think it is most likely to be a period, but there just seemed to be a lot of blood up front, if you know what I mean. Seems to have settled down now. I don't usually have heavy periods, but then I don't usually have molar pregnancies plus ERPC, so I'm willing to accept that things may be different. Does any of this sound familiar/ring alarm bells for anyone? I'm going to phone EPAC on Mon, but wanted to see what you all think. Many thanks.
Aw thats horrible for you isn't it. I had that though, and hadn't been warned it may happen and since then have warned people it may happen on discussions on here as it can be a bit scary. It was about a week after the ERPC, I was away from home, passing huge clots and a lot of pain. Rushed to inlaws GP, reassured, and told it was my body "clearing-out". It did calm down but was told obviously to keep an eye on it and get straight to hospital if very very heavy and clotty and painful. I would use pads I think.
I had a sudden heavier bleed after the main post-ERPC bleeding had stopped. Freaked me out a bit, but turned out to be nothing, just stopped on its own.
I had a persistent mp in 2003, but have since gone on to have 2 babies.
For me it was a long process, because my hcg levels wouldn't go down, but Charing Cross were fantastic, and I know that there is now a website with a forum to support people going through mp www.molarpregnancy.co.uk.
I had a complete molar pregnancy in 2006. I was in the 50% who only need 6 months of follow-up and needed no treatment - though the 2 month wait was stressful.
I got pregnant quickly after the follow-up, but had a missed miscarriage at 12 weeks (nothing to do with the molar pregnancy - I was 39). After 10 weeks of follow-up (you have to be followed up after every pregnancy no matter how short), I got pregnant again quickly and my DD (3rd child) is now 4 months old. The post-pregnancy follow up was also clear.
So it was stressful, but 11 out of 12 women don't need chemo.
Oh, thank you both. It is so good to hear these positive stories. Mungarra - I'm just a couple of years younger than you, so your story is very reassuring on that score!
I'm so sorry, everyone, for all of your losses, but am so grateful for all your support and advice.
here is some good news. My best friend is 37 weeks pregnant and had a molar pregnancy 15 months ago. She got pregnant the INSTANT she tried after her 6 months was up. At the time, like you she understandably found it all very hard. AND she has had the dreamiest pregnant ever, no sickness or anything. The same will happen to you ! Ps - she had a lot of accupuncture which she swears by.
Feeling not too bad today - bleeding easing a bit, and still no pain. Slightly more fed up about it, but that may be down to being tired - rudely awoken at 4 by a certain young lady, who didn't go back to sleep until 5, and then the alarm woke me at 6. Keen to get the test kit and find out where we are with things.
mousemole, thank you, that's lovely to hear. Have to say that I like lots of sickness in pregnancy - first two I was VERY sick (and although poor dd1 didn't make it, she had a good first trimester!) - this one I wasn't sick at all - I know all pregnancies are different, and oddly enough nausea is really common in molar pg, but it just didn't feel right. But I do hope for a short time to conception once we can start - hate the waiting and wondering...
ach, if you're fed up it's cos you've every right to be fed up. we'd all much rather that you were tired right now for the 'right' reasons. fingers crossed that you'll get your wish and next time will come quickly.
Fucking fuck. First test results back today and hcg levels bloody well still elevated. So the 6 month clock can't even start yet. I'm just vexed, I think - not scared or worried, just vexed and irritated. Don't know the level - wish I'd probed a bit more, actually - may try and see if GP can tell me more. I know it's not so high as to cause them concern, but it doesn't sound terribly low either. Bah.
Doesn't help that dd has been laid low with a virus all week and therefore her sleep (and ours) has been screwed completely...
habbibu, maybe you can ask your GP to test your blood for HCG levels? Am worried for you that it might be a persistent MP..do check it out asap cos' its been nearly a mth or so since you discovered it?
Thanks, Nandos. Cons is waiting until next week's urine test so he's got something to compare this level with, and I know that makes sense - for all I know the level could have been dropping already. I have a very good relationship with him - he's fab - so I do trust him. Just so wanted the level to be zero, so I could start the clock, if you see what I mean.
Do update us on your progress and in the mean time do try to relax.. i know its very irritating to know your HCG is still there in your system..but good luck to you and i hope everything will be fine soon
Oh dear. Came home to message from hospital - have to call first thing and go in for a scan. Guess the test results weren't what we were hoping for. Feeling quite blue...
oh fucky bollocks, habs. sorry i didn't see your update earlier (MN really need to sort out 'threads i'm on' imo). nothing to say really, is there, just that i hope that on the paradigm of 'it's not as good as it could be' i hope it is as good as it can be.
Thanks, Aitch - I guess it could now be worst case scenario (ie chemo), but that is really not a terrible thing - just dispiriting and saddening, and realising that it really could be up to 2 years before we get to try again.
On the plus side, you and ht have my blessing to hijack this thread for potty training chat...
Glad to see Aitch along to cheer you up too! PC crashed as I was just asking for help to avoid you being drawn into my poo obsession. I know you're not quite so scatalogically obsessed. Hope it's not chemo treatment Hab.
aye, well i don't want dispiriting and saddening for you, i reject it out of hand. i want lovely and kind and miraculous. but i'll tolerate 'not as bad as it could be', i suppose.
i will investigate the potty training as we've had an oddly unsuccessful day so i'm wondering if we have a rebellion on our hands. by the way, lapin was looking for places in italy to stay and i mentioned you had your very own castello...
i want this to work out beautifully for you, you know. it would be right, i feel.
Sorry, didn't mean to disappear. Ds fell at school today and has sprained his ankle. He doesn't do pain well and had to go and give lots of cuddles and get him back to sleep.
Glad your dh will be there for you tomorrow. Nothing particularly helpful to say really, just sending good vibes and trying to think of a good joke to make you smile.
ht - it's after 9! How have you defeated the cunning technological wiles of MrTwiddler? And yes, actually, keep your poo talk away from me. I know you and your kind. Aitch - that's most kindly positive of you, but I guess if it's going to be bad then I want to know Now. And it doesn't always happen to us, you know - we had an increased risk of NTDs after dd1, but LittleHab is so fine it's scary. So there, odds. <blows raspberry>. Where's lapin asking? Can't find it. Posey - poor DS! Am sending sympathetic whimpers to him. Bath, bed and book soon, I think. DD has been saying "Tummy sore" for a day or so, so tomorrow could be a right old NHS-fest...
littlehab imo comes right under lovely and kind and miraculous, or at least i feel dd does. More of that, please! <claps>
i think she may have mentioned it on another thread, or possibly even via the electronic mail . if you see her around you could tout your pasta stories at her and see if she bites. (the greedy beggar will, i bet).
what time's the app? i will watch the clock and send zingy positive thoughts at the appropriate moment. (usually about 20 mins after the app due to start if it's NHS )
Ok - spoke to NW. At the moment they think it may be retained product, though whether that means another EPRC or Methotrexate I don't know. hcg levels are up. Appointment for a scan at 3pm with Dr A, which is good - scan dept are fab, and know us well... Will update you later.
fingers crossed it's erpc. i've had metho, tbh it does take it out of you, whatever they say. will squish eyes together hopefully at 3pm on your behalf.
Plus side of metho, though, is that it's also used for psoriasis, so could kill 2 birds with 1 stone... <pollyanna emoticon>. You can give me the gen on metho later if that's what they say.
Habbibu, good luck on your scan, I had retained product when i had a molar pregnancy, and had 2 d&c's, unfortunately I went on to methotrexate eventually, because my hcg levels were so high, and the mp was persistant. I'll be thinking of you this afternoon, good luck.
Well, we've been to Todders, LittleHab is having lunch and will, with any luck, sleep soon. hazeyjane - may well be picking your brains for info and advice soon!
Ok - well, there is still molar tissue there, so another D&C tomorrow (told you Ninewells don't mess around!). That should be an end to it, but only the levels will tell. Have to go back in on Monday for more bloods. But you know? I feel really good. Dr A is a fucking star - did the scan himself, did the bloods himself, never seems in the slightest rush though he must be mad busy. And lovely molar follow-up co-ordinator came to see we'd made it to the scan ok, nurses were just lovely to LittleHab. Everytime I come out of there I just feel positive and buoyed up. Tomorrow will be fine - we're well used to the suite, and they all know us. They'll do the D&C under ultrasound this time, to try and ensure they get everything (they didn't know it was a mole last time). And chest x-ray to ensure there are no metasteses, so taking lots of care. So right now I'm actually really quite happy - I guess I like knowing where we are, and what's happening, and Dr A was so lovely - said "you can't get rid of me!" Told him we we thought it was the other way round. So - will try to post tomorrow night when I'm home. Thanks again, all - you're just great.
Good luck tomorrow Hab! It was great to hear you sounding so positive on the phone tonight. <feels sense of pride that nhs has it's amazing, caring and downright reassuring side>
Hi Hab. Your post made me feel very positive. You are having a crap time but the treatment you are getting sounds absolutely amazing and wonderfully caring. Which is as it should be. Unfortunately not all NHS is as good, but sounds like the great treatment we received when dh was very ill some years ago. Not to mention the amazing treatment everyone ever got on my ward in my nursing days...[puffed-up chest emoticon]
Blimey I don't half waffle when I've had a glass of wine on my first evening of holidays...
Anyway will be sending strong vibes to the Habbibu family tomorrow, and thinking of you.
he sounds absolutely brilliant. has the relationship developed into a full-blown crush yet? i tell you what, the one i have on my doc fair makes those waiting times fly by...
glad to hear you sounding so positive, i hope everything is resolved this time. as you say, last time they didn't know what they were dealing with, this time they do so it will hopefully be different. poo, though. but they sounds totally on top of it.
Och, he's a sweetheart - he was very chatty today. The problem with a mole is that even a couple of cells left have the potential to multiply, so they can't guarantee that the second D&C will work, but usually it does, apparently, as as he said, we'll worry when we have to, not before.
Do you know, the whole thinking I was going to have a baby seems a very long time ago now... I'm in a weirdly good mood right now - who knows - might have same (quite foxy) anaesthetist!
Well, yes and no - did burst into tears when slightly distracted receptionist suggested we take a seat in normal obs u/s waiting room! But it's just all been a bit of a rollercoaster, first mmc, then start to mc, then D&C, then holiday, wedding, then bleeding, then testing, then scan, now 2nd D&C - haven't really had time to dwell on baby that much. P's 3rd anniversary next month, so it may well hit a bit harder then, but I tend to just feel what I feel when I feel it, if that makes sense.
Sorry to hear you have to have another d&c, but glad they are seeing you so quickly. The one good(?!) thing about having a molar pregnancy, is that once they know what you have, and Charing Cross (or one of the other centres) are involved, things move really quickly and they are very, very thorough.
Your thread prompted me to dig out my molar pregnancy diary (now that is a fun read!), so if you want any info (not sure how I would do on advice!), then let me know.
I keep my fingers and everything else crossed for you for tomorrow, I really hope it gets sorted out once and for all, and that you, your dh and Littlehab are all ok.
that's as best, then. i wound myself up something chronic about anniversaries of things and always, always found that the day passed with more healing than i could have anticipated. but i'd really put myself through it in the run-up, unfortunately. nothing was as bad as the first time, though.
hah! she sounds like my kind of woman. i'm sorry to hear about your molar pregnancy (i bet that diary is a sad place), it's very kind of you to offer to help habs, i think.
Hi Hazeyjane - yes, the follow up does seem uber well organised - we're doubly lucky in that our local hospital is the Scottish follow-up centre (Dundee), so we get to have follow-up and treatment in familiar settings with familiar (and lovely) people. I may well take you up on the offer of info, hj - esp if we end up going down the metho route.
It was an enormous bar of galaxy though! Can't even remember what was upsetting me at the time. She's got good reason for rudeness. She has to put up with me getting excited about Dolly Parton and Eurovision. I don't mind what she says, because I'd do anything for her excellent company (and her supreme baking skills) Glad to see so many people coming along to cheer up Hab. If you ever need cheering up, I'm sure she'll come along and make you scones, or chocolate cake, or fishcakes, or tagine.... <goes off to look in cupboard as suddenly hungry>
Evening all. Got back from hosp at about 2:30, and have been mostly asleep since. Everything was fine as ever - all the lovely nurses who looked after me before were on duty, and came to say hello. Slight comedy in X-ray when fire alarm went off, so there's me and lots of elderly people sitting around in wheelchairs wondering if we're to be evacuated (turns out it was a toaster too close to a smoke alarm upstairs. Brings back memories of halls). Anyway, feel fine - Dr A did procedure himself, and all seemed to go well. Back in on Weds for histology results, more bloods and urine tests, and we'll see where we go from there. Poor DH - he's supposed to be marking scripts, starting exams etc all this week (and tomorrow), and is squishing it all in between FT child and wife-care!
It's great that your local hospital is the treatment centre, we had to travel up to Charing Cross for my treatment (well to start me off on chemo, anyway), and although the staff treating me were great, the hospital wasn't so good. Although it felt wierd to be a long way from home, we were lucky in that we've got lots of friends in London, that dh could stay with. Follow up ended up being really complicated, because the village we lived in then was a long way from the nearest hospital (I did become a minor celebrity in my local doctor's surgery, not sure if that is a good thing!)
The wierd thing about looking back at my notes (I needed a diary to keep track of hcg figures etc), was that dh and I have both got really happy memories of that year, I think we just made a real effort to be good to each other, and tried to do lots of lovely things.Best of all we ran away and got married the month after my treatment finished, to celebrate!
Hope you all have a good bank holiday weekend, and things are ok on Wednesday.
Funny you should say that, hazeyjane. We lost dd1 in 2005 at 21 weeks, and it was awful, but I do have some lovely memories of that year - an amazingly great holiday, lots of closeness and talks and same as you, just doing lovely things together. And so much support from the lovely ht, hence the love-in above! DH is being wonderful again just now (not that he ever isn't to be fair) though I think in some ways he's finding it harder than me - he was sad when he dropped me off this morning, poor love. I guess sometimes it's easier to be in the moment if it's happening directly to you. I feel like such an old hand in Ninewells now - won't be long before I've met everyone in the obs dept, I think.
Good to hear you've had such lovely care today Hab. Those last 2 posts are very heartwarming. I guess it sometimes takes something like this for us to sit back, take stock, slow down and make more time for each other. Have a restful weekend x
PS I wasn't sure of your "history" until that post, so really sorry to hear that