Partial molar and molar pregnancy support thread - all welcome!

(554 Posts)
MrsJohnDeere Wed 28-Nov-12 11:06:13

I thought I would start this thread as a place where anyone who is going this or has gone through this in the past could share experiences, vent about life, etc.

After a MMC at 12 weeks and an ERPC a few weeks ago I've just found out the cause was a partial mole. I've been referred to Charing Cross and am waiting to hear back from them to start the monitoring etc.

I know the chances of cancer developing are about 1/100 but I'm still struggling with the 'OMG I'm going to die' feeling at the moment, plus the grief and stress of the miscarriage itself.

I haven't told anyone in RL, other than dh, even friends who know about the miscarriage. I'm worried abut how they'll react and that I'll end up blubbing.

Lou1791 Fri 12-Feb-16 19:30:28

Hi all,

I'm so glad I've found this thread, would appreciate being able to get a few things off my chest.

I'm still waiting to find out if I have had a complete molar pregnancy as initial pathology after my erpc was inconclusive (although it's likely I have and have started testing with Charing Cross already).

I had, in my view, a miscarriage on 5th Jan when I was about 9 weeks (unsure of dates) pregnant. I'd had a scan that day, which had been referred to as a pregnancy of unknown location, but the dr explained then that it might be molar. Had never heard of it before then.
After a week of hCG testing, I had the erpc (reluctantly.)

Since, I have sent my first sample to Charing Cross and my levels were 888. Hence my losing all hope that it might not be molar after all.

I'm really struggling with the fact that most people have never heard of molar pregnancies or GTD, and having to explain it to people (I told a lot of work colleagues about the miscarriage.) Also finding it difficult to know that there may never have been a baby, can't get my head round this. Not sure I've 'come to terms' with that.

I've had days where I've felt better but feel like it's one step forwards two steps back in terms of emotional healing. It's so surreal - I've never been more unwell than a cold my entire life.

Went to an open session at Charing Cross this week. It was useful, but it some ways made me feel worse because it brought home how rare it is and I already feel so alone.

I sort of feel like I want/need to talk about it a lot but not sure people (dh, close friends) want to listen.

Thanks for reading; I've found MN so helpful in the last few weeks.

GwendolynMoon Thu 07-Jan-16 10:18:31

Thank you so much Purple it really helps to hear positive stories from people who have been through it as well. Congrats on your ds smile

Purplefrogshoes Wed 06-Jan-16 22:07:21

Hi gwen that's fabulous news! I also had a CMP. I was terrified to try again when I had been given the all clear but I did and I now have a gorgeous nearly 8 month old ds. I only needed to send one sample after birth and I was signed off again. Wishing you the best of luck flowers

GwendolynMoon Wed 06-Jan-16 14:55:33

Happy New Year everyone and wishing all of you who have had a difficult 2015 a much better year.

We arrived back from being away over Christmas and NY to a letter from Charing Cross saying that as my last urine sample (sent mid Dec) was normal I am now officially signed off smile

I went for my 12 week scan on the 17th of December 2014 (also our 3rd wedding anniversary, clearly not a great one!!) where we were told they suspected a molar pregnancy, had my ERPC the next day and was subsequently diagnosed with a full molar pregnancy. My hcg levels were incredibly high and took 6 months to go down to 0 and then had another 6 months of sending in monthly urine samples. So all in all has been a slow process. So am just sending love and support to everyone going through this at the moment.

My DH and I do very much want a second child (have a DS nearly 3) and it has been frustrating having to wait to try again but now that we have been given the all clear to do so I am, to be honest, a bit terrified of this happening again sad

Mariash16 Thu 19-Nov-15 10:15:06

Hi Mae,

Sorry for what you're going through. I had an erpc (and laparoscopy as they thought it might be ectopic) 3 weeks ago and have been diagnosed with complete molar. Referred to Charing Cross and had first set of blood taken on Monday so hoping to find out results today. Fingers crossed for low numbers!

The initial shock etc has died down a bit now and have been reading lots of stories about women who have gone on to have successful pregnancies which has helped. Having never heard of a molar pregnancy before, I could probably now tell you everything about it I've done so much reading (probably a bit too much really!).

Anyway, please feel free to vent if you need to. Everyone around me is supportive but I think its hard to understand unless you've been through it, which is why these forums are great.

All the best xx

Purplefrogshoes Sun 15-Nov-15 23:47:04

I'm glad it was straight forward mea I hope your levels drop quickly flowers

magnificatAnimaMea Sat 14-Nov-15 00:13:02

Thanks Purplefrogshoes and hazeyjane. ERPC done yesterday - all went fine, very straightforward. I do still feel somewhat pregnant, but that's to be expected. I will find out about monitoring next week, but i think it's just weekly b-hCGs for 6 months, unless it doesn't start dropping quickly, in which case it goes back to 48-hourly b-hCGs, 2-weekly scans and presumably methotrexate. They're pretty thorough here... they're not Charing Cross, and very much not a big tertiary teaching hospital of the kind you'd see in the UK, but they're sensible, and they follow appropriate guidelines, and they're willing to discuss research literature if you have something to say that they haven't covered. So it should all be fine.

hazeyjane Fri 13-Nov-15 14:30:08

Mea - sorry to hear this. Hopefully you will get treatment and monitoring sorted soon. When I had my molar diagnosed, I was scanned, had to wait 10 days, then had a further scan and blood test, which showed sky high hcg, and the scan looked like a molar pg. I had an erpc as an emergency, and then monitoring by Charing X started straight away.

Will be thinking of you. flowers

Purplefrogshoes Fri 13-Nov-15 14:18:38

Hi mea I'm so sorry. My molar pregnancy wasn't diagnosed until months after I had erpc. I hope your doing ok flowers

magnificatAnimaMea Thu 12-Nov-15 00:05:48

answering my own question - going for an ERPC tomorrow because they think it may be molar. hCG is now near 200,000... confused

magnificatAnimaMea Tue 10-Nov-15 05:24:48

Does anyone have a feel for whether still-climbing beta-hCG levels might mean in the context of a MMC/blighted ovum diagnosed 2 weeks ago but probably now about 5 weeks since the foetus stopped developing? Partial molar/ other Gestational Trophoblastic disease? Or is this just normal?

I had a dating scan at (probably) 10+0, showing a 22mm gestational sac and yolk sac, normal size for 7+2, but no foetal pole or heartbeat. hCG was 56,000, climbing to 88,000 2 days later and 100,000 a week later. 10 days later I had another scan and the gestational sac was 21 or 22mm and no yolk sac and still no foetal pole or heartbeat and hCG "a bit over 100,000". 3 days later (yesterday) my hCG was 150,000.

Because the sac isn't 25mm, they won't diagnose a blighted ovum until my hCG levels start falling or until we get to 10 days after the most recent scan (I have 6 days to wait yet).

The midwives, nurses, and 2 obstetricians all seemed to think I would have miscarried by now. I've had no cramping or bleeding at all.

But hCG still going up so long after the foetus stopped developing, still feeling pregnant, and absolutely no signs of miscarriage at all is making me wonder about GTD... anyone got any advice?

jododo Thu 29-Oct-15 22:13:52

Bloods were down to 35 on Monday and I had more bloods done in hospital on Wednesday so should get the result tomorrow (didn't get a chance to phone today). Still waiting on the liver MRI report but prof thinks it's a birth mark type thing so I'm not too worried. Had an ultrasound to figure out what is causing this week's increase in pain (spent Sunday night in A&E). It seems to be a benign ovarian cyst, which I'm hoping will settle down of it's own accord as my hcg levels return to zero.
The funeral went as well as can be expected. It was lovely to meet all Granny's friends, there were at least 70 there.

hazeyjane Tue 27-Oct-15 20:30:05

45 is great. I hope they continue to fall.

The whole testing thing is relentless, and I became a bit obsessive - I still have my ratty old hand drawn calendar, with every single result and test done scrawled on it.

Good luck tomorrow with seeing the Prof (do you have a specialist nurse who goes in with you?) and I hope the funeral is ok.

Will be thinking of you. flowers

jododo Tue 27-Oct-15 20:10:27

I'm being tested twice weekly. Last Thursday's result was down to 45 so doing well.
I live in Bristol so similar distance. I'm currently in London for my granny's funeral so taking the opportunity to see prof Seckl and his team tomorrow.

hazeyjane Sun 25-Oct-15 20:40:14

So sorry to read your post jododo - I was under Professor Seckl in 2003 when I had a choriocarcinoma, and stayed at Charing X for several weeks.

I hope your hcg levels fall consistently - how frequently are you being tested?

I found it very hard staying in ChX for such a long time, with dh travelling between Somerset and London - fortunately it was before we had children. The second time I was dilue to stay, I just couldn't bear it, and they let me stay with friends and come in daily as an outpatient.

I will be keeping everything crossed for you. X

jododo Sun 25-Oct-15 20:33:05

Hi, I'm so glad I found this thread. I must admit I haven't attempted to read back because it's just so long, so if I'm repeating stuff I apologise. I'm under Charing Cross (CX) for GTD, query choriocarcinoma.

I had surgery for my second ectopic pregnancy in my local hospital at the beginning of September, and it now seems that was also a molar pregnancy. My hcg levels didn't return to normal and were starting to rise again so they gave me a dose of methotrexate. After that I was in a lot of pain, it turns out I had internal bleeding. So, more emergency surgery, this time by two consultants. They kind of panicked when they found tiny growths in my abdomen, some of which were bleeding, and sent me to CX. I spent 10 days there having MRIs, CT scans, ultrasounds, and a million blood tests. The hcg has been falling since that one dose of methotrexate. Prof Seckl and his team say it's because it's the same drug they use for chemo, so I basically had a one-off dose of chemo. If it continues to fall and goes back to zero I'll be monitored for a long time but I shouldn't need any further treatment. But if it plateaus or rises again I'll need chemo. I went a bit mental in CX (have mental health issues already), which is the only reason they sent me home. I'm terrified I'm going to have to go back in again. It's so far away. My husband wasn't coping well at home with our son either (not helped by his granny and my granny both dying that week so both sets of parents are tied up). It's just all so crap.

This week I've been getting pregnancy symptoms again (sore boobs, nausea, night sweats). After my previous pregnancies (1 mc, 1 healthy, 1 ectopic) I had similar symptoms as the hormone levels dropped back to normal so I'm trying to tell myself that's all this is. I get the next blood results tomorrow so I think it's going to be another sleepless night tonight.

TimeTicking37 Thu 17-Sep-15 21:46:03

I'm new to MumsNet and this is my first post. I suffered my second miscarriage in February this year ( the first being several years ago & we didn't try for a while as I was so upset)
Pregnant again in May this year only to be told at our scan that baby had died at 7 weeks 6 days without me knowing. Long story short, hospital have contacted me recently to say I had a Partial Molar Pregnancy. Spoke to a consultant who registered me with Charring Cross, gave me a leaflet and sent me home. No support, no information, nothing. I live in Belfast and can't travel to London for the support meetings Charring Cross offer.
Mostly I feel very alone. My partner thinks I should be getting over things and I have to explain the situation over and over to family and friends as no one has heard of it before..... Would just like them to acknowledge that even if they couldn't have survived, it was still my baby. I'm still grieving the loss... and the months and months of testing and not being able to get pregnant again in that time....
Sorry for the rambling post but just venting it all here to get it off my chest!

Kanaham Tue 01-Sep-15 20:30:22

Hello everyone,

Thank you first to mumsnet for being such a support through a tough time. It's the first time I've ever posted but reading everyone's comments and experiences has been so helpful to me and made me feel much less alone.

I had a mmc at 12 week scan having seen hb at 8 weeks so it came as quite a shock. I had suffered hyperemesis throughout the pregnancy and just got on with it as everyone kept telling me that sickness meant a healthy pregnancy (although I lost 2 stone and didn't feel healthy!).

I had an erpc a week later.. Lost a litre of blood almost needed a transfusion.

Six months later my hcg levels are still crawling down and not completely back to normal although they are now at 4; down from 93000 prior to the erpc.

I recently had further surgery as I have symptoms suggestive of Ashermans syndrome (pain but no periods). They found some retained products and some scarring but hopefully they have removed as much as possible. I am going to have another hysteroscopy in 8 weeks to check that there is no scarring left.

My hcg has recently gone up slightly although as is is so close to what Sheffield define as normal I think that this is quite common.

I seem to have got a rare complication on top of a rare complication and am feeling a tad unlucky at the moment although I know things could be so much worse. Hope to reach the end of this saga soon but I fear for the future when I eventually am able to ttc again that I am at higher risk of further miscarriage. I am not sure I can manage another 9 months of this again!


Theresaflyinmyhouse Sat 15-Aug-15 17:32:36

Thank you so much for the reply! I'm feeling lost and angry today. Hcg the day before the erpc was 13. I have no idea on if that's good but it sounds low.

Thanks again for the reply, I hope you're pregnancy is fabulous. Xxx

magpiedreams Sat 15-Aug-15 11:53:24

Hi theresafly
I've not posted on this thread before but saw your recent post and wanted to say hi.
I had a partial molar preg in feb this year - was a MMC at 12+6, then medical management then hostlogy showed a partial molar. I was under Sheffield for monitoring, did not need any treatment and got to normal at around 14w after the medical management. Was cleared to TTC and got pregnant the next month - now 6+ weeks and slightly anxious but otherwise totally ok.

It sounds like you are taking it in your stride which is great. Shame about having retained products but at least you know after ERPC everything should be gone. How are your levels? Hope coming down for you ok. Molar preg is horrible in that you feel grief for the lost pregnancy but then in limbo while you want and check you're well and can carry on with life.

Wishing you all the best x

Theresaflyinmyhouse Fri 07-Aug-15 18:29:59

Hey all. It's anyone still about on here? I've just found out I've had a probable molar pregnancy. Had an mva a month ago after weeks of scans where nothing changed. Then found out this week from histology. I've just had an erpc as I had retained products which is another kick in the teeth!

I'm finding things ok at the moment. A few people I know have miscarried at a similar time to me and I feel so jealous that they just get to move in with their lives/ttc.

rascalrae Tue 21-Jul-15 10:20:32

Really sorry you're having to go through this Bex1206, it's very hard. It's completely unacceptable that you've seen this information in your notes and it hasn't been explained to you but try not to panic too much until things have been confirmed. With an ERPC they can check whether there were any abnormalities with the tissue and it might be that you have had a partial molar pregnancy (where the abnormalities are with the placenta) or they might be able to rule it out. If it is molar, you will probably be asked to come back to see a consultant at the hospital and they will need to refer you to a specialist centre who will do some further tests and monitor your hormone levels. In the meantime just concentrate on your own physical and mental recovery. Do use contraception until you know what's going on. Try not to panic yourself by reading lots about molar pregnancies because it might not be that, and if it is, it might be tough going for a bit, delaying your plans for another baby and giving you uncertainty to deal with, but it's not always the worst case scenario. I had a partial molar last year. It was a tough time but I'm pregnant again, due in a few weeks. Have some support at the ready and you'll be ok. Best of luck x

Bex1206 Tue 21-Jul-15 07:06:03

So I had my erpc this morning, I went to see the surgeon just before theatre and she was lovely but I was left very confused. She said I had to start taking contraception straight away and not to try again until after my results are back. She kept saying if it's what we think it is but wouldn't say anymore. As far as I was concerned the babies heart had stopped and there wasn't much more to it. Anyway everything went absolutely fine, she came out to see me after and again kept saying about results and if it's what we think. I had no idea what she meant. I was discharged from the hospital and given my notes to take to my GP only to read suspected partial molar pregnancy. Now I'm in even more of a mess and can't see my GP for another 6 days to get some answers. I just wish the surgeon had said this instead of just writing it on my notes, that way I could be more prepared.....sorry to rant but I just need some support?

Purplefrogshoes Sat 04-Jul-15 13:18:35

I'm so sorry sardeano I bled for a long time too. I hope your levels are even lower on Monday.

Sardeano28 Fri 03-Jul-15 01:05:11

Hi hope no one minds me posting. I had a partial molar pregnancy. Went to 12 week scan , no heartbeat tests on bubba showed molar. It's been 7 weeks since my dnc. I'm still bleeding it's been so long getting me down now. I'm under charing cross. My levels were 33 two weeks ago. More results Monday. I just want it to be over ,this is my second misscarriage in 8 months. Xsorry for everyone's losses. X

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