Partial molar and molar pregnancy support thread - all welcome!

[MrsJohnDeere]

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.

Hi op

I had a molar pregnancy 13 years ago. I was one of the patients who developed choriocarcinoma and had 6 months of chemo. However the GOOD news is I have since gone on to have 3 dcs-yes there were some bumps along the road but its all good.

Please feel free to pm me if you have any questions or just want a natter.

All the best.

Thank you. I will PM you later if that's ok.

I'm really impatient to start testing. I have a feeling that something isn't right, but it may well all be in the mind. I had my ERPC about 6 weeks ago. For the last 3 days I've had horrible cramps and back pain, like bad period pain, and my stomach is swelling up and going hard in the evening, as it did when I was pg. It sounds stupid but it feels like my body is trying to expel something. I'm wondering if this means HCG levels are going up .

Feel free to pm me anytime-I am on mn far too much so you will usually catch me! Levels can take a long time to go down and symtoms are very common for a long period after too so dont panic just yet.

Sorry for your loss. I had a complete molar pregnancy in January 2011 and it was a sad and scarey time. I have since gone on to have DS2 but I will never forget how dark the first half of last year was at times.

I posted on MN at the time as I felt that no-one in RL had a clue what I was going through. My old thread is here old thread - some very kind people (including pink ) posted about their experiences/suggestions etc. on there so there might be something useful.

Try not to worry about the cancer - especially for a partial molar, the risk of needing chemo is very low (1.5% I seem to remember) so I doubt you'll need it. You will need support, however, especially in a few week's time when everyone else has 'forgotten' that you had a miscarriage.

Have you started testing yet? Take care - and feel free to PM me too if you ever need a shoulder to cry on.

Thank you both.

Had my first blood test today. I was told to call for the results in about a week. I hate not knowing what is going on with my own body because I'm a bit of a control freak.

I've just had my first period since my ERPC (6weeks ago, I think). It wa horrific. Went in a week and I had lots of pain. I am slightly worried that this is because something sinister is going on inside, but only time will tell. I'm almost certainly worrying about nothing.

I actually told some good friends about it this week, which has helped a lot. They keep looking at me with worried faces like I might keel over and die at any moment, but hopefully that will pass!

It's a good sign that you have had your period as the hormone levels have to drop to a low level to trigger it. My first period after ERPC was tmi like a tsunami but my next results were normal. Fingers crossed for you. x

I hope so. I'm in two minds as to whether or not it actually was a period or just some bleeding and a helluva lot of pain. It felt like my body was trying to expel something, and it didn't look like my periods normally look (probably way, say TMI but it was lots of jelly stuff with blood in rather than just blood). My periods had been pretty erratic/non-existant before I got pg, so I no longer know what to expect!

Things that concern me are my belly still swelling up and going hard in the evenings and my boobs haven't reverted to their normal size.

Another one that ended up with chemo and went on to have a child afterwards here... Mine wasn't picked up at the first ERPC stage which didn't help. Again, don't mind pms.

Can I ask those who had to have chemo, did you have symptoms (other than high hcg etc) so that you knew something was wrong?

After 24 hours all clear the bleeding (that may or may not be a period) has come back today. That would make for a 9 day period . I'm wondering whether to go and see the GP, but then they probably know even less than me about partial moles.

I had a complete molar pregnancy about 15 months ago, it was such a shock to find out about it & I literally had nightmares. The chances of chemo after a complete mole are higher - about 20%. I started urine monitoring 5 weeks after ERCP & my results were negligible right from the beginning 7 stayed that way all through 6 months of monitoring.

I was too scared to TTC during the follow-up, but got pregnant again within a few months after, only to have a MMC at 11.5 weeks. I was gutted.

Decided to have "one last try" and am currently 17 weeks pregnant. I got a scan at 8 weeks to ensure it wasn't a recurrent of molar pregnancy (about 1%) chance.

MrsD would you consider a pregnancy test to put your mind at rest? Although if you've had a period, that's a good sign as your HCG level needs to be low enough for that too happen. Plus it gets rid of more molar tissue so your level comes down too.

It really is a horrible thing to deal with; for me it was a double whammy - a miscarriage is bad enough on it's own, without that on top. However, there are so many ladies who go on to have successful pregnancies after. Hang in there x

MrsJD - I was flooding at completely unpredictable times... I kept on going back to the Drs and was fobbed off with 'it will settle down, give it time' but the last time I went - 3 months after ERPC - somewhat fortuitously I started bleeding just before going in to see the Dr - who happened to be a Locum. Possibly because she was a locum she was doing everything by the book so examined me, saw the scale of the issue and agreed that things weren't right and got a scan set up for first thing the following morning. I could go through a nighttime pad in under 40 mins when I say flooding...

I ended up with a 2nd ERPC the next day - and then, following another bleed on the following Friday, got taken in and not let out and carted off down to a different hospital by ambulance just in case I haemoraged - all rather OTT in my opinion given I had been out walking the dog when I got called in following a telephone discussion with my consultant's Senior Registrar....

Period/bleeding finally stopped after 11 days

Just had my first results back. Hcg is 84, which they said was low and a good sign?

Yes, lets hope it carries on dropping.

Feeling a bit worried today. The last three days I've had what seems like morning sickness but obviously can't be because i'm not pg. Been sick 3 times this morning. I'm wondering if this is a rise in hcg levels?

Has anyone else had similar?

I had a Partial Molar three years ago. From the first urine tests my levels were satisfactory so no follow up treatment was required. By the time I had been told it was a PM my periods had already returned.

I gave birth to our beautiful daughter four weeks ago and it was our first pregnancy since the PM. I'll have to send urine samples away again once I get the follow up sorted with Dundee.

So sorry you had to go through this. Could the sickness be caused by anxiety? It happened to me for quite a few weeks after the loss.

Congratulations on your dd. Glad it all worked out in the end.

Don't think it is anxiety. The only thing I am worried about is feeling sick, which is a bit circular. The only time I have felt like this is in the first 12/14 weeks of pregnancy. I guess I'll just have to be patient and see what the next set of blood/urine tests show. I'm having those on Weds but won't get the results until well into Jan because of Christmas and then us going away on holiday. I'm not good at waiting patiently!

Bleeding has started up again today and I'm still being sick each morning. Desperate to know the results of this week's blood tests but may not get them until after Christmas.

Hi,
I had a molar pregnancy in April 2008, I had to have two ERCP's and then extended follow up with urine testing with Sheffield from then until the following February. We did have a long wait before TTC again but we now have a healthy 3 year old DS! I sure you will be fine, it seems much worse at first and then settles down. The best thing is that it was picked up! I am a nurse and had only ever heard of it once before and she was a young patient of ours, so as you can imagine i was quite surprised to find out thats what I had too!

Did you feel sick with it (like morning sickness) after the ERPCs?

MrsJohnDeere - I didn't have sickness, but I did have bleeding at around the 6-week mark after the ERPC. Period like to start but got heavier until I was flooding and passing clots, so I took myself to hospital, where I lost another litre or so of blood before they managed to stop the bleeding. Turns out the mole had started growing back, which was causing the bleeding. I was expecting to start chemo, but they did one more D&C which finally got rid of it, so in the end no chemo. I was in hospital for a week and came out exhausted and anaemic, though.

Have you tried calling the molar pregnancy unit at Charing Cross or wherever you are sending your samples to? They might advise you to go to hospital to get yourself checked out, because nausea and bleeding doesn't sound right.

(oh, and on a more encouraging note, I had follow up for a full year then got pregnant immediately, and DD is now 10)

Hello MrsJD sorry to hear you're still having bleeding & nausea. To be honest, it doesn't sound right. I think your healthcare team would want to know about these symptoms.

I would definitely phone them. I would also POAS to see if it's still positive.

I hope your results come through soon & you're feeling we'll enough to enjoy Christmas.

I'm going to have to call them on Monday, aren't I. I know you're both right.

I'm worried that they will ask me to go into Charing X. I'm supposed to be going on holiday next week (long haul) so this couldn't come at a worst time!

Hi, no I didn't still have the sickness after the ERPC's, they were a relief as I felt hideous before them!
You should ring charing cross, always better to be on the safe side. Sheffield were always lovely if I needed to contact them. Could try over the weekend. Must be someone there as they have in patients having treatment. Worth a try?

You really need to call the hospital, if you're planning to fly, or even go to A&E if the bleeding continues over the weekend. You do not want the kind of haemorrhaging I had to get going on a plane, or indeed while in a foreign country.

Have you told your travel insurers about the molar pregnancy? Because if you suddenly develop complications while overseas they could easily say it is a pre-existing condition you should have told them about (or should have got medical clearance to travel) and refuse to pay, which could leave you with thousands of pounds of medical bills. But if you have to cancel or postpone now for medical reasons, you should be covered.

Sorry to sound alarmist. We were due to fly long-haul a couple of weeks after my molar pregnancy was diagnosed, but the doctor advised us to cancel. In fact my complications & heavy bleeding did not crop up until after we would have been home anyway, but I really would not have wanted to deal with all that while on holiday. We postponed the holiday until about four months later when I was definitely on the road to recovery and feeling much better.

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.