Partial molar and molar pregnancy support thread - all welcome!

(506 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.

MrsH85 Sun 13-Oct-13 19:15:17

Hi, I was diagnosed on Friday with a partial Pre-molar preg - had a SMM at 13+2 weeks after the miscarriage was spotted at my 1st scan. At first I was quite relaxed about everything as my consultant sounded quite calm and as I only bled a little (well less than a normal period) for 2 weeks after surgery with almost no pains so I told myself it would all be fine but now having read a lot more of ppls actual experiences I am starting to worry. I have done a home test today which is negative (its been 5 weeks since my SMM). My bloods were taken on Saturday and I have been transferred to Charing Cross. I know there is nothing I can do until I have any tests results back but it doesn't stop the worst case scenarios playing on my mind!

Purplefrogshoe Sun 13-Oct-13 22:56:59

Hi mrs h, i had complete mp, only found out a few weeks ago, it was 10 weeks after erpc after what i thought and was told was a mmc. It is very good that you have had a neg preg test already, very few people actually need treatment, with any luck you and i will just need 6 months follow up. When do you expect results? My most recent test came back hcg21 so its heading in the right direction

CallingAllEngels Tue 05-Nov-13 08:37:09

Have just read the whole thread after someone on another thread suggested that I might be having a mp.

Had what I thought was a mc at 6w. Was advised by mw to wait a week before taking a pg test. Strong positive (stronger than I'd had at 5w) so had a scan from mw who confirmed no baby, but sent me onto hospital for a 2nd opinion re: tibes and checking there was nothing left behind. Hospital couldn't see anything and took my HCG as 340 (not super high).

I went back a week later and HCG had risen by 100 so had to have another scan. Possible cyst, but no sign of anything else.

I'm going back today for another check of HCG and then possibly a scan and will definitely mention mp.

I have all the shit symptoms of early pregnancy - extreme tiredness, emotional, mild nausea and a rapidly exapnding baby bump (without the baby sad ). If I was pg would be 9w (so 3w since mc).

I hate this uncertainty and limbo and actually feel more scared after researching mp. I had a mc before I got pg with DC1 and it was quick and uncomplicated (2w later had BFN). I hate this feeling of not being able to move on.

squizita Tue 05-Nov-13 20:52:40

Hi Engels sorry to hear you're having such an awful and worrying time. Do mention it to your hospital - if you're not bleeding they may have to offer medical management or an erpc to be able to test for a molar (also, sometimes retained material is very hard to see so this might get rid of your symptoms in itself - I had a 69 triplody and suspected partial mole, hcg spiked but I bled heavily during the time and passed tissue missed by scans so by the date of my Charing Cross appts and that reduced it all to hcg normal over a few weeks).

It is such a worrying time. sad Really hoping it suddenly resolves, as did mine. Maybe ask the epu to check progesterone too - it can hint whether it is retained materials and you'll bleed.

The phoneline at the miscarriage association andf charing x are both really, really helpful too - do use them, they give excellent advice.

Purplefrogshoe Wed 06-Nov-13 00:02:16

Hi Engels, I'm so sorry to hear you are having such an awful time, i had erpc 4 July for what was thought to be mmc but found out 9 weeks later it was complete molar pregnancy, my pregnancy test was still showing strong positive after 10 weeks and I had awful bleeding almost constantly, it a worrying time, my hcg is now zero and I feel so much better, how did you get on today?

CallingAllEngels Wed 06-Nov-13 08:26:10

Thanks for your replies purple and squizita.

Doctor was adamant that it was not a mpg. She said my Hcg is and has been far too low. It had gone up slightly to 450. I have to keep going back every week to check levels and she said it should go down by itself within a month. Didn't give me another scan but in the last 3 there was n8thing to be seen so they won't give me an ERPC. If it doesn't drop then they'll give me an injection.

Reading all your posts thrre is still the possibility that it is mpg though?

Now 3+weeks since mc and still feel so pg. No bleeding - only the odd spot/discharge.

Have decided not to go back into work this week. Physically and mentally exhausted from the last month anx would probably fail to hold it together in class (teacher).

Heading to the UK this weekend to see my family (I live in the Netherlands) and looking forward to a hug from my DM, DSis and best friend.

I guess I just have to wait and be patient, but makes mc so much harder to deal with (last mc was very quick, no ERPC needed, hcg at 0 after two weeks and got pg with ds - now 2 - during next cycle!).

Thank you for sharing your experiences ladies. I've had a look at the mc association website as well which was really helpful.

MN is lovely thanks

CallingAllEngels Wed 06-Nov-13 08:27:06

That should say no bleeding since the mc at 6w (bled then for 3-4days).

Purplefrogshoe Wed 06-Nov-13 10:53:16

It does seem to be taking a long time to drop but at least they are checking your levels, its so difficult though as you just want the mc to be over and to still feel pregnant is awful, i felt awful for weeks and weeks and i couldn't see how i would ever feel better but i do now

squizita Wed 06-Nov-13 19:56:29

My levels were slightly like yours (partial molars can be) but far more likely to be a small amount of retained tissue. Ask for a progesterone check, I also take it they've scanned your tubes (in case of ectopic - very, very rare but they should check!).

If it goes up any more, ask for a second opinion. Moles and partial moles are rare so even gynie docs should seek a 2nd opinion.

NellyOC Thu 07-Nov-13 14:20:17

hi ladies, just found this support thread, thankfully. I'm just sat in my gown waiting to be called down for an erpc with a suspected molar pregnancy. I also had a normal mc in Sept.

Didn't really know about molar pregnancy until Monday when that's what they said they suspected. confused, emotional, lots of questions. Yesterday my hcg levels were 19000, still have sickness, sore boobs etc.

Haven't read this thread yet but will have time after surgery!
all advice welcome xx

Purplefrogshoe Thu 07-Nov-13 14:47:05

hi nelly, its a bit of a shock isnt it, hope things go as well as they can and you get home quickly

mistlethrush Thu 07-Nov-13 16:12:43

My levels took AGES to drop after the 2 mc post DS - 3 months ish - not good when you're worrying about potentially having another mp. They did go down eventually though and I didn't need extra treatment.

CallingAllEngels Tue 12-Nov-13 18:14:17

Reassuring to hear mistle . Have just had another check today and they've gone down slightly to 425 (from 450) so now the same as they were 2 weeks ago.

Back in 2 weeks to check again.

Nelly hope erpc went well (or as well as can be expected iyswim).

Symptoms have almost disappeared - hard to tell if tiredness is caused by HCG or 2yo DS waking up every blinking night and making a pilgrimage to our bed.

mistlethrush Wed 13-Nov-13 08:46:44

Calling - that's good that they are going down, even if it is slowly. I hope that they continue in the same direction - hopefully a bit quicker.

Purplefrogshoe Wed 13-Nov-13 10:17:54

engels thats good your levels are heading in the right direction. I felt very tired for a while but i think it was due to the GA. nelly hope your doing ok

NellyOC Mon 25-Nov-13 13:09:01

Hello, just an update had erpc 7 November. hcg levels dropped from 19000 to 1000 in a week. Thought all ok. Then week later hcg is over 5000. Had a scan showing a mass. Hystology came back as complete molar. Saturday I was admitted to Charing Cross, and I've started Chemotherapy, in here for at least 7 days. The staff here are amazing. Just can't really believe all of this is happening. second dose of chemo tonight.

CallingAllEngels Mon 25-Nov-13 14:40:55

Oh Nelly I'm sorry to hear that. You're in the right place by the sounds of it. Good luck. thanks

mistlethrush Mon 25-Nov-13 14:57:12

Nelly - same thing happened with me too - DS arrived two years and a few weeks after my EDD of the first mp.

Later courses of the chemo I had to up the sickness meds - not really needed on the first round - but one of them that they tried for me really didn't agree with me and they tried a different one for the next course which was much more successful. Also found the mouthwash very helpful.

... don't know if there's anything else that might help but you can pm me if you want to ask anything specific.

tracyto55 Wed 27-Nov-13 09:23:00

I found results from a study, that are encouraging:

This study compared subsequent pregnancy outcome in patients with complete and partial hydatidiform moles. Among 1052 patients with molar pregnancy (complete mole, 801; partial mole, 251) monitored at Chiba University Hospital between 1981 and 1999, 891 patients (84.7%) had spontaneous resolution of human chorionic gonadotrophin (HCG) after mole evacuation, and 161 patients (15.3%) required chemotherapy. Of the 891 patients, 438 (49.2%) had 650 subsequent pregnancies. The pregnancy outcome was not significantly different in patients with complete and partial moles, and was comparable with that in the general Japanese population. The incidence of repeat molar pregnancy in patients with complete and partial mole (1.3 and 1.5% respectively) was 5-fold higher than that of the general population, while no increased risk of persistent gestational trophoblastic tumour (GTT) associated with later molar pregnancy was observed. During HCG follow-up, 10 patients (1.1%) developed secondary high-risk GTT between 14 and 54 months after mole evacuation. The incidence of high-risk GTT in patients with and without subsequent pregnancies was 0.46% (2/438) and 1.8% (8/453) respectively (P = 0.1243). In conclusion, patients with complete and partial mole can anticipate a normal future reproductive outcome, and pregnancies after experiencing hydatidiform mole may not affect the development of high-risk GTT.

Here is the whole info
http://humrep.oxfordjournals.org/content/16/6/1274.full

Purplefrogshoe Wed 27-Nov-13 19:38:26

nelly im sorry to hear that, you are in the best place. how are you feeling?

NellyOC Thu 28-Nov-13 07:46:40

Thanks ladies. The staff at Charing Cross really are amazing. I've had 3 injections now, one more on Friday and then fingers crossed I'm going home! haven't yet heard if my gp practice will give me the subsequent cycles.

Feeling tired and a little sick. Mainly just want to be at home x

NellyOC Thu 28-Nov-13 07:49:35

mistletrush - thanks for your offer of advice very kind.
just one question, 14th Dec my husband had booked a hotel for our wedding anniversary. it's not far from where we live. Do you think I'd be ok to go? I will have just started 3rd cycle. x

mistlethrush Thu 28-Nov-13 09:11:58

I never felt too bad at the start of my cycle - I was probably at the lowest about 3 days after and then started creeping back up. However, I never got back to where I was at the start of the previous one - so each one hit me harder. My cycles all started on a Monday or Tuesday - and I would reckon on having the the Friday and the weekend OK before starting the downwards spiral again. I went into work every other Friday and managed about an hour. Mostly I slept. A lot.

I started off having to go to the hospital for every injection - the first day would be a fullish day as they have to do a blood test first to check you're OK, and then that needs processing before they make up the chemo and can do the injection - I was normally there for between 9 and 10 and not leaving until 4. I was able to drive myself to those (but it wasn't Charing Cross!). For the last 3 or 4 cycles I managed to persuade them to let me take 3 lots of chemo home and get the Drs to do it for me - the Drs receptionists could not get their heads around me wanting 3 sets of appointments over 6 days - and the weekend one was always 'interesting' to book. DH didn't like opening the fridge and seeing the chemo there first thing grin

It wasn't a nice 5 months. But it did the trick, and I'm still here, and I have a lovely DS who is 8.5 ! smile

mistlethrush Thu 28-Nov-13 09:20:32

that didn't really answer did it... I can't say for you though - because I met someone on exactly the same treatment as I was on who was popping out from her work to have her injection and then going back to work, working full-time. She was managing 35 hrs a week... I was managing 1 hr a fourtnight...

lgwilk Thu 28-Nov-13 17:14:39

Hi ladies. Just had my removal op this morning for suspected molar. Fingers and toes crossed. This thread had really helped me get my head around it all over the last couple of days. Thanks xxx

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