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Miscarriage/pregnancy loss

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Original poster

Partial molar and molar pregnancy support thread - all welcome!

699 replies

MrsJohnDeere · 28/11/2012 11:06

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.

OP posts:
Purplefrogshoes · 06/01/2016 22:07

Hi gwen that's fabulous news! I also had a CMP. I was terrified to try again when I had been given the all clear but I did and I now have a gorgeous nearly 8 month old ds. I only needed to send one sample after birth and I was signed off again. Wishing you the best of luck Flowers

GwendolynMoon · 07/01/2016 10:18

Thank you so much Purple it really helps to hear positive stories from people who have been through it as well. Congrats on your ds Smile

Lou1791 · 12/02/2016 19:30

Hi all,

I'm so glad I've found this thread, would appreciate being able to get a few things off my chest.

I'm still waiting to find out if I have had a complete molar pregnancy as initial pathology after my erpc was inconclusive (although it's likely I have and have started testing with Charing Cross already).

I had, in my view, a miscarriage on 5th Jan when I was about 9 weeks (unsure of dates) pregnant. I'd had a scan that day, which had been referred to as a pregnancy of unknown location, but the dr explained then that it might be molar. Had never heard of it before then.
After a week of hCG testing, I had the erpc (reluctantly.)

Since, I have sent my first sample to Charing Cross and my levels were 888. Hence my losing all hope that it might not be molar after all.

I'm really struggling with the fact that most people have never heard of molar pregnancies or GTD, and having to explain it to people (I told a lot of work colleagues about the miscarriage.) Also finding it difficult to know that there may never have been a baby, can't get my head round this. Not sure I've 'come to terms' with that.

I've had days where I've felt better but feel like it's one step forwards two steps back in terms of emotional healing. It's so surreal - I've never been more unwell than a cold my entire life.

Went to an open session at Charing Cross this week. It was useful, but it some ways made me feel worse because it brought home how rare it is and I already feel so alone.

I sort of feel like I want/need to talk about it a lot but not sure people (dh, close friends) want to listen.

Thanks for reading; I've found MN so helpful in the last few weeks.

Lou1791 · 19/02/2016 17:48

Me again. I've now read the whole of this thread and have been truly humbled and amazed by the strength and resilience shown by everyone who has posted. It has made me feel stronger at times when I've wondered how I'll cope with months of monitoring ahead. Flowers
If anyone is currently going through this, would appreciate sharing experiences.

Spoke to CXH again today. Have confirmed complete molar pregnancy. Sad On the other hand, this week the results were 122, a big (I think?) drop from 888 two weeks ago.
I'm 5 weeks post ERPC now so I'm still hoping to make the 8 week point... Possibly overly optimistic but only thing I can hold on to at the moment. Did anyone here try anything to help hCG drop more quickly? Anecdotal evidence?

Purplefrogshoes · 19/02/2016 23:18

Hi lou I'm so sorry, I also had cmp. I felt awful at the start, felt like I was going through something that no one understood. Hopefully your level will drop quickly, I felt so much better when I seen the numbers going down

Lou1791 · 20/02/2016 17:04

Thanks for replying Purple. It's so hard explaining the situation to people. Also feeling like people think I should be getting over it now, but it my mind I can't completely until I know my levels are back to normal. Does that make sense? I'm pleased my levels seem to be dropping but it's still such a worry.
How long in total were you monitored for?

Purplefrogshoes · 20/02/2016 20:39

That's exactly how I felt, everyone expected me to be fine but I could barely function for weeks. I was monitored for 9 months in total as my levels didn't fall quickly at first. I felt a lot better after every test when I could see my levels falling. I know it's really difficult but it does get easier I promise you
When is your next test? BrewCakeFlowers

Lou1791 · 20/02/2016 21:09

I'm glad it's not just me! Thank you, really appreciate it.
Next one is 1st March. The following week will be 8 weeks post erpc so I'm really hoping for another big drop. I don't think it's likely I'll make the shorter follow-up time but I'm clinging on to that hope!
Any tips for getting through the months without driving myself mad? (Think I need to book a holiday or something!) Smile

Purplefrogshoes · 20/02/2016 23:55

I just tried to keep as busy as possible and really tried to put it to the back of my mind but tbh it was a few months before I managed it. I was also on the rmc thread, the ladies on there helped me a lot so keep posting. Fingers crossed for a big drop.

Lou1791 · 21/02/2016 19:29

Smile You're right being able to post on here is such a help.

GwendolynMoon · 23/02/2016 11:32

Hi Lou71

Just caught up with your posts, I posted on your other thread previously.

It sounds like your levels are dropping really 'well'. Mine took a lot longer to get down to anywhere near 122 and as mention up thread, it took a full six months until I was down to zero so had to be monitored for another 6 months after that.

Easier said than done I know but try and keep yourself busy and your mind off the fact that you are still being 'monitored'. It sounds like things are improving and at this point it would be unlikely for your levels not to get back to normal. It's a strange kind of twilight though, I understand. And I kept thinking well I should be grateful that it's not 'worse' and I don't need further treatment but at the same time I felt like I had been dealt such a horrid hand as it is such a rare thing. Keep posting on here if it helps Smile

Lou1791 · 23/02/2016 20:34

Hi again,

Trying to keep busy (not difficult) and positive (trickier!) I have moments when I feel very positive that all will be fine and others when I am worried sick and feel everything is so unfair (silly!) so the way you describe your thoughts makes complete sense to me.
Appreciate the support on here. Smile

Lou1791 · 27/02/2016 23:10

Can anyone answer this - when should I expect my periods to return?
I've had no bleeding at all since a few days after ERPC but am now getting symptoms which are like PMS (bloating, headache, cramps etc). I've had an odd stomach pain on and off the last few days too, quite mild but in a very specific area. Anyone else experience anything like this?!

Purplefrogshoes · 28/02/2016 21:38

Hi lou I had bleeding for weeks after my erpc but I didn't have a period for months but I felt like I had pms for a long time. How are you doing?

Lou1791 · 01/03/2016 07:15

Thanks Purple - that's interesting, I was wondering if it was all in my head! Did you ever ask the doctors about it?
I'm not bad, the next bloods are due today. At least it feels like time is passing quickly...

suzyhart7 · 03/03/2016 08:33

Hi, thought I would post on this thread as it is good to find others going through the same thing as me. I found out I'd had a complete molar pregnancy at the start of the year and had a D&C on Jan 12. My hcg levels have come down a lot since before the op but there still too high for me to reach 'normal' by the 8 week mark (last test was at 1,835). Lou like you I've started to feel 'periody' this week - even though I know I can't possibly be getting my period. Bit worried that it means my levels are going up...it's such a waiting game! Hope your levels have continued to drop! I won't get next test results until March 10. Xx

Lou1791 · 03/03/2016 20:08

Hi Suzy,
I'm so sorry you're going through this too; I've found it such a difficult thing to get my head around. It's great to talk to people who've been through it and people at a similar stage in the journey (your operation was the day before mine). I've been a bit worried that the symtoms I'm experiencing are due to levels going up too, but trying to be positive and think it's my body getting back to normal. Will get next set of results tomorrow... You are right about it being a waiting game. Feel like I'm living my life in 2 week blocks.

suzyhart7 · 04/03/2016 08:41

Thanks Lou hope your results are lower today! I'm the same - wishing time away until I know my next results. Didn't realise how long 2 weeks could feel! I'll get tested again on Monday then results on Thursday. Anyway, let me know how you get on xx

Lou1791 · 04/03/2016 17:19

Only down to 113 (from 122). Really disappointed and very worried. She said I'm okay to wait for next one... But does this constitute a plateau if the next drop isn't bigger? What will happen if it hovers around the same number? Now terrified all over again 😥

Purplefrogshoes · 04/03/2016 18:18

Hi lou my levels didn't drop quickly at first either. When is your next test? The Dr put the pms symptoms down to hcg levels, hormones etc.

Hi suzy the worry is awful Sad I hope your next test shows a big drop

Lou1791 · 04/03/2016 18:38

Next test on 15th March. CXH advisor said that my cramps/stomach pain could be down to my body trying to get rid of tissue and that I may have bleeding.
I'm wondering whether any drop is okay?

Purplefrogshoes · 04/03/2016 23:06

Hi lou I think any drop has got to be good. My levels did drop quicker when I had bleeding. I understand how scared you must feel as I felt the same but if cxh aren't unduly concerned I don't think you should be. I would try and keep busy and try not to think about it although I know that's easier said than done Flowers

suzyhart7 · 05/03/2016 15:56

Awe sorry to hear you didn't get more of a drop Lou, but as Purple says, any drop is good! Your numbers are pretty low which is good, but know that doesn't make it any less of a worry. It's just so annoying having to wait 2 weeks for your next results. I'll keep my fingers crossed for you! Smilexx

GwendolynMoon · 07/03/2016 11:14

Sorry that your drop wasn't as significant as you would have liked Lou but try not to worry. My levels took ages to drop and between some of my tests they only dropped a small amount. Particularly once they were down to around 250 (I think at one point they dropped from 230 to 197 for example).

The lower down you get the smaller the drops start to become seems to be quite standard from what I have read, and experienced.

suzyhart7 · 08/03/2016 19:10

Thought I would post as feeling a bit mixed today. Just found out that one of my good friends is expecting. She's really early on - only about 6 weeks - and has said to me before any of our other friends. Kind of glad she was honest with me and told me first - will make it easier when she does announce it. I'm so pleased for her, but also a bit sad for myself as it makes me realise how far away I am from that point. It's also sad to think that if we'd had a 'normal' pregnancy then our kids would have been pretty much the same age which would have been nice. I did also think as she was telling me that I couldn't believe she was saying something when she's only 6 weeks as loads of stuff could go wrong - I guess that's the thing with having a miscarriage or a molar pregnancy - it takes away the innocence of pregnancy.

Guess I need to just focus on getting my next results back on Thursday - fx for a drop!!! Xxx