Partial molar and molar pregnancy support thread - all welcome!(553 Posts)
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.
I can't believe I we weren't told to wait, if there was even a chance of this happening. We even specifically asked the question. Perhaps when the consultant said 'when you feel ready' he didn't imagine we would feel ready in 2 weeks time...
Oh well... I have another scan next Friday, I guess we'll see what's going on then...
The chances of a molar/partial molar pregnancy are so small that I guess it isn't the norm to suggest waiting.
It could be that my consultant had a hunch that I mad a mole when he did the ERPC but didn't want to say anything until he'd had it confirmed? He's a bit of of an expert in the field, I think. Also, I think my age (40+) was a factor in saying no sex. At the scan where he spotted the missed miscarriage I remember him saying that if I got pg on the next cycle I had a 70% chance of miscarriage merely because of my age.
Sorry to hear you're going through this, MrsJD. I am surprised you haven't been scanned again (or did I miss that)? I had big gushy bleeds a couple of times after my first EPRC (from which a partial mole was diagnosed) - told Dundee, they had me in and scanned again after the 2nd bleed, and found molar tissue regrowing on the uterus, so I had a 2nd ERPC, and follow-up scan. But I know that CHX is a big centre of expertise too, so wouldn't want to second-guess them either!
Tbh, I'm surprised I haven't had a second scan yet either. To me it would make sense to do them as a routine thing after an ERPC for a molar pregnancy. CHX seem to focus just on hcg, so if that's ok everything else must be fine.
Will have one if I'm still bleeding 6 weeks from now (had a letter to that effect today). It's not gushing though and there are no clots now so I guess it doesn't seem that important.
CHX have phoned. Levels have rocketed back up. They want me to do one more lots of bloods and go in once the results come back.
oh no mesS, sorry to hear that. I have started bleeding too, mbe miscarrying...
sorry that was supposed to say 'sorry mrsD'...stupid phone.
Oh crikey Nerual. So sorry. I'll keep everything crossed for you that it isn't another miscarriage. Can you go and get a scan at your EPU? What a worry for you.
I called them and they said just wait and see, the bleeding seems to have mostly stopped (but I still have mild cramps),and I have a scan with them anyway on Friday. they said if it gets really heavy then go to a&e...
I have found this thread very useful and I'm so sorry to hear of the sad stories but will keep my fingers crossed that things look up for you all soon.
I will share my story also- I had an ERPC at 13 weeks for mmc- that was exactly 11 weeks ago today. I found out about 2 weeks after that re: partial molar pregnancy and was devastated as this was our first pregnancy (i'm 35). I'm being monitored by Charing Cross every two weeks. I have had continual heavy spotting with intermittent bleeding since the ERPC 11 weeks ago and this week the bleeding has got really heavy with back pain and abdo pain (mostly in the evenings) - the pain is quite severe and feels like my body is trying to get rid of stuff. I have been to my local hospital twice who have scanned me once and just check my HcG levels there last weekend and felt it didnt warrant a scan - I suppose Im really concerned re: continued bleeding but all charing cross and the hospital say is it's maybe a good thing and your levels are dropping.
My levels to date have been as follows post ERPC
7 wks: 384
9 wks: 297
10 wks: 203 (local hosp) due to pain and fresh blood)
Test due this Monday for more blood and very nervous as either there should be a massive drop due to the recent blood loss or worried they may have increased due to pain and bleeding. Its so hard to know what to think, has anyone else experienced a long time for levels to drop with continued heavy spotting and fresh bleeding at around 10 wks? I'm not sure whether it is a period as my levels are still around 200?
Hi Natt, just wanted to say sorry for your loss & continued pain & bleeding, sounds a bit like what MrsD is experiencing. My story is a little different but I'm not sure what is more 'normal', lots of bleeding/pain or nothing at all, like I had. I haven't had the experience of having my levels checked yet but I think mine fell really fast, as I had a negative pg test a couple of weeks after my erpc (hence my now possibly soon ending pregnancy!). But on the many forums I have been perusing, it does seem like a slower decline like you are experiencing seems more common.
Good luck for your test on monday and let us know how it goes...
Nattnothing - your experience sounds very similar to mine. My levels weren't tested until around 8 weeks after the ERPC and they were lower than yours (80something then). Mine stayed at this level for a month, fell at the start of Jan to 30ish, and have just risen to 137. I too have had severe abdo pain on and off since early Jan (12 weeks after ERPC).
I was told that I wouldn't get a period until hcg dropped below 25.
Nerual - how are you today?
Neural I hope you are doing ok and I hope your scan is positive as you must be worried sick.
Mrs JD - you situation does sound very similar to mine - its awful not kowing whether the pain and bleeding is a good sign or not - i think I have tortured myself this last week. The pain in the evenings is bad and lasts for a few hours - feels like my body is trying to get rid of stuff, just hoping my next bloods are still falling but im getting so impatient as this will be almost 12 weeks. Whole saga seems never ending! Has Charing Cross been in touch with you re: your rise. Hoping it will just be a temporary hitch and maybe it will fall again without intervention - are you still having bleeding and pain?
Mrs JD - did charing tell you that you cant have a period until your numbers are 25? If so then at least i know that all this pain etc is not a period....... which does worry me a lot!
Yes, Charing Cross said that to me a couple of days ago. Gynae consultant, who last saw me when levels were 37 and thought to be falling, said to expect a period within the next 6 weeks.
am ok today. basically, on Thursday evening I had a sudden gush of red blood, then nothing else really other than some small brownish spots. also have very mild lower abdo / back pain, which feels a bit like really mild period pain. I have no idea how I'm going to make it to Friday with my danit intact... am pretty much preparing myself for the worst though...
aargh. that was supposed to say 'not sure how I'm going to make it to Friday with my sanity intact'! stupid phone.
Good morning nerual - hang in there! Maybe go to your EPU to get your HcG levels checked and ask for a scan - I know you have one on Friday but if it was me I definitely couldn't wait as I'd be a wreck! I really hope that everything will be ok as lots of people bleed during the early weeks of pregnancy but with the history of partial molar be sure and get checked out asap. Thinking about you.....
Mrs JD thanks for letting me know re: levels and first period - I guess I cant help thinking this disease has started causing bleeding and pain. I feel like it hard to get any answers as Charing Cross just focus on the levels and dont really take the other symptoms on board - the local hospital are just directed by Charing Cross! That's why is so good to have people to chat to. I hope you are doing ok?
Nerual - keeping everything crossed for you. A miracle may still be possible. I'd be going out of my mind waiting until Friday.
Nattnothing - I find Charing Cross a bit too 'black and white' about levels. That is all they seem to be interested in but you know when something feels wrong inside.
Thoroughly fed up with it all this evening. Abdo pain has returned and the bleeding is not letting up. I woke up in a cold sweat last night fretting about having to go the Charing Cross - more the practical aspect/logistics than the actual treatment.
Hi MrsJD when do you go the Charing Cross, do you have to travel far? At least when you go there they will sort things for you - I know what you mean it all the upheaval and hassel
I'm just back from A&E this evening as my abdo pain got so severe and I couldnt get the bleeding to stop, plus passed really large clots. They give me meds to control the bleeding and did an internal, where they saw more large clots! Need to go to GP tomorrow and give her the info so she can make an urgent referral to gynae to get seen again this week. Feel so weak and fed up also! A&E did an HcG and levels have dropped to 123 (they were 203 last Sunday) - so a glimmer of hope I suppose but I wont settle until they are negative - hate this waiting!
Hang in there and let me know how things go ......
Nerual - how are you this evening?
How scary. Hope you are ok. Good that the levels have dropped though - a ray of hope.
It probably takes about 2 hours for me to get to CHX, at a rough guess. I am jinxed with trains, so maybe more.
Gosh Natt, all that pain, bleeding and passing large clots so long after erpc...that must be dreadful for you. Glad you are being referred to a gynae this week. Do you have to go to work? I hope not...
I'm actually feeling a fair bit better today, might venture into town to work. I basically didn't leave the house for fri, sat or sunday, but I don't think I can get away with 'working from home' for another day. Am toying with the idea of getting a private scan, just checked and there is somewhere quite near work that I can go. Might call today and see when I can get an appt, but if only on Thursday or something then may as well wait till friday...
Just spotted this thread again and as someone who had a CMP in 2011, just wanted to hold your hands a bit.
MrsJD - sorry that this is still going on for you and really hope Charing X can sort you out. I live in London and have been to the hospital/dept so if you ever needed hand-holding, let me know.
nerual - sorry that you are bleeding in this pregnancy. I got pg 5 months into my follow-up which was nerve-wracking. I had a lot of brown bleeding, exactly like with the CMP, which was awful but fortunately everything turned out well in the end. Hopefully that will be the case for you too. Fingers crossed.
natt - that's great that your levels have fallen but horrid that you are in pain etc. Hope all is well with you soon.
Could do with some virtual hand-holding today. I've spent far too long today looking on that molar pregnancy forum about what chemo involves, what it's like to stay at CHX, etc and feel totally freaked out. Sounds awful (but then cancer wouldn't be that great either).
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