Partial molar and molar pregnancy support thread - all welcome!

(505 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.

megly Fri 21-Dec-12 19:00:47

I had a partial molar in June this year, as it wasn't diagnosed for many months, I ended up pregnant again so had to wait to be tested until that pregnancy ended (failed). I did though have 2 erpc's after the first pregnancy which we now can see was due to the PMP. Once the second pregnancy ended my levels fell in a couple of weeks to a similar level to yours. Then after a heavy period back right down. So the hormones falling is very good and that level is low yes. And as I said, my first 'period' was very heavy and definitely felt like my body was still getting rid of the residue which was a good thing. The pregnancy symptoms also continued for some weeks and I did think that stress about it all made them worse. So it is possible that you are quite fine. But you Definitely should call the hospital and certainly shouldn't fly till all is clear. Exexpat is totally right. I was meant to do a long haul flight during the second miscarriage and the doctors said don't. Are you at Charing x? Results take 24 hours there not weeks, I'm quite surprised about your wait?

Huge sympathies. Its completely hideous the stress and pain of molar pregnancies. And so many doctors seem not to understand at all.

MrsJohnDeere Fri 21-Dec-12 22:35:20

Arrrgghhh! Don't know what to do for the best.

No, haven't told my travel insurer. The bleeding is very light but has been going on (and off) for about 3 weeks.

I am at Charing Cross.

The reason my results could take so long is that my local hospital is rubbish. I have the bloods done at my GPs. They semd the. To the local (crap) hospital who centrifuge them, or whatever it is called, amd send them on. They took over a week to send the first lot to Charing Cross. On the same time frame the second lot would be due to arrive on Christmas Day or Boxing Day but obv because of the bank holidays they then wouldn't get them until Thursday at best (by which time I would be on holiday).

Why is life so complicated ?!

MrsJohnDeere Fri 21-Dec-12 22:36:04

Sorry lots of typos. Too much wine

exexpat Fri 21-Dec-12 22:50:50

OK, I think you definitely need to speak to both Charing X and your travel insurers ASAP - try calling tomorrow, don't wait till Monday. At the moment you are leaving yourself wide open to massive medical bills if anything goes wrong while you're away.

I have to say that in your position I would be starting to seriously consider cancelling the holiday. You may be fine, but you may not, and it's a big risk to take.

exexpat Fri 21-Dec-12 22:55:25

Also, I'd second the suggestion to take a pregnancy test. If your levels have gone down since your last blood tests, you should be getting close to the 'not pregnant' level, though still may register a faint positive, but if you get a strong positive I would guess it is an indication that your levels may be rising again.

MrsJohnDeere Fri 21-Dec-12 22:59:10

It's so hard to know what to do for the best. Dh and the Dcs are really looking forward to it. I want to help make it a great holiday for them after several horrible months where they've not had the time and attention they deserve.

Going to sleep on it and hope it all makes more sense tomorrow.

exexpat Fri 21-Dec-12 23:37:46

I can understand your reluctance to disrupt things for the rest of the family, but it's not going to be a very relaxing holiday if you are bleeding and vomiting, and anxious about the whole thing, let alone if things take a turn for the worse and you end up in hospital (and have to pay for the privilege). Has your DH read this thread, or have you spoken to him about the insurance issue?

lotsofcheese Sat 22-Dec-12 20:12:09

Hi MrsJD how are you today?

I agree with the advice exexpat has given you. As someone who has had 2 trips abroad ruined by miscarriages, I know how tough it is. I had to cancel my 40th birthday trip to NYC earlier this year, as I had a mmc & required surgery. It was awful.

But I'd also say it's far worse to be caught out abroad, in hospital, not covered by insurance.

I really hope it works out & you're able to get away xxxx

MrsJohnDeere Sat 22-Dec-12 21:45:15

Bleeding has stopped again confused. Had the nausea again today but, as on the other days, it is only in the mornings that it is a problem.

Going to phone Charing X on Monday. There's an outside chance that they might have my results ready then which will he,l inform my decision about what to do.

MrsJohnDeere Mon 24-Dec-12 11:38:20

Got my results back. HCg unchanged, which surprised me. Don't understand why I feel more nauseous now than 2 weeks ago. confused

They seem ok about me travelling. There aren't enough results yet to go on to say any further or immediate action/medical attention is needed.

exexpat Mon 24-Dec-12 13:13:35

Well, that sounds like good news. Odd about the nausea, though. And I think it's still a good idea to inform your travel insurer, just so they can't say you should have told them about it if things do go wrong. Hope you have a good Christmas!

lotsofcheese Mon 24-Dec-12 15:39:40

Glad to hear that MrsJD - enjoy your holiday - but do as expat advises & inform your insurance company - just in case!! Xxx

MrsJohnDeere Wed 16-Jan-13 16:34:18

Just thought I would post an update if only to help clarify my thoughts. If anyone has any words of wisdom they would be much appreciated though. smile

Three months on from my ERPC my HCG levels have come down to 35. BUT I still have 'morning sickness' - was properly sick this morning - which apparently shouldn't happen once levels go below 50.

I had spotting on and off all through December but have been bleeding a lot for the last couple of weeks. It is not a period just random bleeding. CHX seem to think that it is a good thing - my body expelling molar tissue. But it shouldn't be going on this long confused. Also it has started to get really smelly blush and I have abdo pain on and off, sometimes quite severe.

CHX reckon it is an infection. Need to have swabs done and get anti-biotics if only the dragon receptionist at the GPs would let me actually have an appointment.

MrsJohnDeere Wed 16-Jan-13 16:36:46

On the plus side CHX said that I should rest as much as possible as exercise, lifting, running around makes the bleeding worse. Going to milk that for all it's worth with dh!

jenjens2626 Sat 26-Jan-13 02:21:47

Hello all. I am new to this and wanting to ask a few questions on my sisters behalf. She had a complete molar approx 6 weeks ago.She had a d and c and although tired, seemed to be doing well. However, over the last four weeks she has been intermittently bleeding (fairly heavily), is totally exhausted and has been experiencing excruciating pain in her lower abdomen. She has now sent off two lots of blood and urine to Charing cross and good news is that her levels seem to be going down slightly although I'm not sure of exact figures. She was in that much pain today that she could barely move so after visiting the gp, she was sent to our local a and e where she wasn't seen by a doctor for nearly 8 hours, she eventually had to leave due to snow and although pain subsided a little it was still present. she was taken to hospital two weeks ago for same pains. That time she was scanned and told there was a mass in her uterus, likely to be a blood clot and was sent home. Our local hospital has been so unhelpful and it is so frustrating. I'm sorry for long message but would like to know your thoughts as we are all obviously worried about her. I'm thinking of rining Charing cross tomorrow but worried I am expecting things to be done too soon. Thank you for reading and any advice given in advance.

MrsJohnDeere Sat 26-Jan-13 09:55:18

Posting quickly on phone but didnt want to leave you unanswered.

Definitely ring Charing Cross, they are great at giving advice over the phone ime. I haven't tried at weekends, but I assume they must have someone there to look after inpatients? I've found them to be really helpful unlike my GP.

I too had episodes of excruciating pain (was on the verge of going to A&E). CHX told me that - in my case - they thought the pain was a good thing, the body's way of expelling residual molar tissue. Obviously this could be very different in your sister's case. My pain came later though - think it was 10 weeks after the op (had mine mid Oct).

jenjens2626 Sat 26-Jan-13 12:31:48

Mrs J Deere, thank you for the reply. I am going to ring char x today and see what they day. Will let you know outcome.

MrsJohnDeere Sat 26-Jan-13 18:46:56

How did you get on? Is your sister any better?

jenjens2626 Sun 27-Jan-13 02:32:03

I called the hospital and spoke to the on call oncologist. He said to ring back Monday, which I will do. He seems to think that its nothing to worry about as she is not bleeding at this time. Still not happy though so will definitely call back monday. Will keep you updated. Just feel very frustrated at the moment.

MrsJohnDeere Sun 27-Jan-13 07:10:12

Yes, that is frustrating. Fwiw, I've phoned a few times now and always seems to speak to the same lady. She seems very clued up about the things and takes a lot of time to answer questions and asks quite a few herself. Hopefully you can talk to her on Monday.

Could she call the hospital/doctor who did the ERPC - and presumably diagnosed the molar pregnancy - for advice. Technically she would still be under their care until she gets the all clear from CHX, I think.

Is she still in a lot of pain, or does it come and go? Maybe she will pass the clots at some point and then the pain will die down.

Ashoething Wed 30-Jan-13 13:15:27

Hi
I was on this thread earlier under a different name. I think any unexplained bleeding following a molar pregnancy MUST be followed up. You really need to push though as a lot of doctors have simply never dealt with a case. I was passed from pillar to post a lot in the first couple of months after I had mine many moons ago and was pretty much kept in the dark until I was told I was being carted off for chemo!
All the best and feel feel to pm me if you need any help.

nerual Wed 30-Jan-13 13:17:20

Hi everyone,
I had a mmc and erpc on the 13 Dec. Our doctor told us there was no minimum time to wait until we could start ttc again (just when emotionally ready), so once my pg tests went negative (around 10 days after erpc) we started trying again, and got BFP a couple of weeks later, in early Jan. About a week after I got BFP, the hospital rings me to let me know I had a partial molar pg!! I had never heard of it before, and we definitely wouldn't have ttc had I known that my mmc might have been this.
They did a scan to confirm that I was pregnant, which I am, but now I am SO worried that something is going to go wrong because I conceived so soon after the molar.
My doctor did call CX hospital, and they said that if my pg tests were negative then it's pretty certain that there was nothing left after erpc, and that this pg will be fine, but still, it's all very worrying.
Does anyone else have any experiences with conceiving so soon after partial mole/erpc??

MrsJohnDeere Wed 30-Jan-13 13:39:06

Nerual - what a worry for you. I would phone CHX yourself and see what they say. Have you started testing (bloods/urine etc) yet?

jenjens - how are things with your sister.

An update on me: saw my consultant a few days ago. I've been bleeding non stop now for about 8 weeks (not a period though). He confirmed what CHX had said, that the bleeding is probably a good thing. The body's way of expelling all residual molar tissue, kind of rebooting itself! I have to go back in 6 weeks. If I'm still bleeding then he'll do an ultrasound and then, if necessary, another ERPC. Typically, the bleeding eased off on the day I saw him, but is now back with avengeance!

nerual Wed 30-Jan-13 13:50:57

Hey MrsJohn, it is worrying. Re testing, CHX just want me to start testing after this pg is over, one way or another. They can't test me now while I am pg, as HCG from the pregnancy masks any HCG being generated by moles.

I can't believe you've been bleeding for 8 weeks, that is awful. I guess one of the reasons why we started ttc again was that I had almost no bleeding after erpc and no pain, didn't even need the lovely painkillers they discharged me with (saving them for some later occasion!). I felt completely fine. I realise that in this respect I am very lucky.

MrsJohnDeere Wed 30-Jan-13 13:59:54

I was told no sex until after a 6 week follow up, and at that appointment I was told about the molar thing, so it was a bit of a non-issue for me. But it is true, nausea, pain, bleeding aren't really conducive to sex.

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