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Partial Molar Pregnancy - advice/positive stories please!

(16 Posts)
monkeybumsmum Sat 18-Oct-08 09:50:22

We went for our 12 week scan at the end of August, and were told that the baby's heart had stopped beating a few days earlier... Had an EPRC, and the placenta/baby were tested. Got the results yesterday, and were told that it was a partial molar pregnancy.

I was told by my gynae that we could try again straight away, however after having googled it am reading that you should wait at least six months? I'm not in the UK, so maybe that's why it's different. There also doesn't seem to be any monitoring available here - should I be monitored? Am a bit worried that it's not being dealt with correctly...

Am also scared that next time round we'll have a problem. I know people do go on to have successful pregnancies after a molar pregnancy, but I also had a mc in May this year at 8 weeks, so it's difficult to feel positive about the future...

I'd really appreciate any advice! Thanks x

RupertTheBear Sat 18-Oct-08 09:55:02

My friend has just gone through this at about the same time as you. She has been told to wait until her hormone levels are back down to normal, and then she could have even more time to wait after that.
There are some people on here who know lots more than me - hope someone will be along soon.

NorthernLurker Sat 18-Oct-08 09:58:51

In the uk you would definately be monitored and advised to avoid pregnancy for six months. This happened to a friend of mine and she is now pregnant - with a normally progressing pregnancy so theres some good news for you! Has your gynae tested your HCG level? If HCG is still detectable then you are either pregnant or the mole has started to regrow - which is why uk patients are told to avoid pregnancy for a while. The uk centres for monitoring are Ninewells in Scotland, Charing Cross in London and somewhere else that I've forgotten! I wonder if you could ring their gynae department for advice?

TheMadHouse Sat 18-Oct-08 10:01:19

A partial mole is different from a complete molar pregnancy, which may be why you do not have to wait.

I have had a molar pregnancy and also 2 m/c and went on two have two beautify baby boys, so try and stay positive

TheMadHouse Sat 18-Oct-08 10:01:48

Other centre is in Sheffield

NorthernLurker Sat 18-Oct-08 10:05:58

Thanks madhouse - knew it was somewhere in the middle grin Congratulations on your family - I know how hard the partial mole was on my friend and her dp - for you to have three losses must have been dreadful.

monkeybumsmum Sat 18-Oct-08 10:16:15

Oooh gosh that was quick! Was worried I'd have to bump!

Thanks Rupert! Hope your friend is okay...

NorthernLurker Thanks for the advice - gynae hasn't tested my hcg levels. Have got an appt booked with my GP in a month, so I think I'll ask her to test it then. Does it need to be re-tested, or once it goes down completely does it stay down? Think will try and get the number for Charing Cross...

TheMadHouse So sorry about your mc's, I know how difficult it is sad. It's lovely to read that you now have two gorgeous boys, well done you, and congratulations! I already have a ds (almost 20 months) so am already very lucky. Another baby would be wonderful though...

NorthernLurker Sat 18-Oct-08 10:21:40

As I understand it the idea is to monitor till it goes down to 0 then keep monitoring at say monthly intervals to make sure it stays down. My friend will be monitored after birth as well just to make sure the mole hasn't started to regrow then.

monkeybumsmum Sat 18-Oct-08 10:22:40

So once you have one it's with you for life is it?

NorthernLurker Sat 18-Oct-08 10:28:14

this looks like a good website

this is from Charing Cross

Ok now when looking at these website you need to remember that you have had a partial molar pregnancy not a full molar pregnancy and that any recurrance is very, very rare. I do think you ask why your gynae doesn't recommend follow up though.

NorthernLurker Sat 18-Oct-08 10:30:01

x posted - no I don't think its exactly with you for life - but rather that having had one you are at greater risk of having one again (although as I said below it's still a small risk) The issue is that pregnancy masks any recurrance and any symptoms so they test just to be sure.

monkeybumsmum Sat 18-Oct-08 11:00:41

Thank you!! smile Will have a look at those sites now...

Italophil Tue 28-Oct-08 13:06:55

monkeybumsmum, if you haven't done yet, please make sure you check your hcg. the monitoring is extremely important to check that the mole is not coming back.

i had a partial molar pregnancy in feb this year; it regrew after the first d+c, and it was removed with a second d+c (which is NOT the recommended treatment). in fact it regrew again, i had bad haemmoraging and was admitted to a+e. then i was admitted to charing cross to start chemotherapy.

your consultant should check your hcg following the d+c on a weekly (!) basis, and also refer your case directly to one of the centres (eg Charing Cross) for the database. therefore, in case your hcg does not go down quickly enough, pls watch very carefully for it to regrow.

i am fine now, after 6 months of stress and 4 1/2 months of chemotherapy everything is ok. charing cross has an excellent team in case you need chemotherapy.

hope this helps and good luck!

hazeyjane Tue 28-Oct-08 19:32:53

monkeybumsmum, sorry that you are going through this.

I would definately get in touch with Charing Cross, or one of the other centres, and ask their advice about monitoring.

The difference between a partial mole and complete mole is to do with the presence of an embryo (partial) or not (complete), rather than severity.

I had a partial mole in 2003 and after 2 d&c's had to have chemotherapy until my hcg levels went down to 0. Because my mole was persistant I will always be monitored (I think this is as much to do with research, as with the chance of recurrence). As Northernlurker pointed out it is very rare to have a persistant mole, but important that you have hcg levels checked, as they can rise very quickly.

Dh and I had been trying for 7 years to conceive and had a miscarriage and molar pregnancy, we had a little girl in 2006, when I was 37, and then 14 months later dd2!

I hope you are ok, and some of this helps.

monkeybumsmum Wed 29-Oct-08 22:52:27

Thanks so much Italophil and hazeyjane. How awful for you both to have to have been through chemotherapy. I am so glad to read that you're both okay now though.

I rang the centre at Charing Cross yesterday, and the lady I spoke to said it was very important that I have my levels checked straight away. She couldn't believe that I hadn't had it done before now, and I think even more surprised that my gynae told me we could try again straight away. Am now in the UK until Sunday, but as soon as I get home I'll go to the doctors and have some tests done. My GP has said that she will monitor me, so I'll go straight to her.

Am so angry that I've had to find out all this by myself, and that my gynae gave me such awful advice.

Thanks so much to everyone who's posted here.

Italophil Thu 30-Oct-08 10:24:16

monkeybumsmum, just in case, without wanting to repeat myself:

it is very important that your GP checks the levels of hcg weekly and checks how quickly they are coming down. if you send the samples to e.g. Charing Cross, they should be able to do this.

i am saying this because in my case the hcg levels WERE in fact coming down, but still the mole was coming back. i was only at 800 when admitted to charing cross, but the mole triggered bad blood loss, which is how we discovered it.

also get a scan done asap, that way you can see if the mole is still there.

i don't mean to scare you, but it is important and -- while easy to cure -- not always well understood by gynaecologists / GPs.

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