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 DuLcEz, Good luck with your d&c tmrw! I hope they get everything.

My DSs are 3 & 5 (and I'm so blessed to have them). I'd love to have more (if anyone up there is listening) and have been trying for 2.5yrs (with 2 other early losses during that time) but my age is against me (43 soon) and I needed ivf (icsi) for my first pg & a frozen embryo transfer for my recent twinnies pg. ...so the odds of succeeding a 3rd time (either naturally or with fertility tx) are v slim. I certainly don't want to be greedy but we have space in our heats & home if we can find a healthy sticky one.

I got my referral form today so blood/urine tubes should come soon. 😁

Thank you so much for replying - it's really made me feel less alone (despite my family & DH being supportive)!!!

Zeka x

Hi Zeka, DuLcEz and Lilac

Sorry that you're going through or have been through a molar pregnancy. This thread has been a great support to me in the last 5 months so I hope it is for you too. I'm hoping that I had what will be my last blood test on Tuesday (results tomorrow hopefully) after finding out my first pregnancy was molar in January. for all of you.

Suzy How are you getting on? I hope the second ERPC went well.

Hi Lou!

How did the erpcs & blood tests go today?
My hcg came back at 399 and the consultant could see some blood still so she performed a little procedure with a long sucky stick thing (obvs not the technical name or it 😝) which she hopes will speed up the healing process & help my hcg fall quicker. So fingers crossed.
Also got my 'box' today so plan to get bloods done next week to start the official Charing X monitoring.
Hope everyone is doing ok!
Zeka x

Fingers crossed for you Zeka. 399 is not a bad place to start, hopefully your levels will fall quickly.

Got my results this afternoon and both were "normal", finally! 6 months of urine monitoring now, even though they told me 'many' women get pregnant during this period. What am I meant to think about that?!

Hope everyone is okay.

Good news, Lou!
Sounds like it's a green-ish light to be a bit less 'careful' over the next 6 months!

Just want to wish everyone going through molar pregnancy luck, and perhaps give you some hope. I had a complete molar pregnancy in October 2014. I think I may have posted on this thread! My levels were quite stubborn and I was just about on the verge of having to start treatment, but Annie at Sheffield kept saying that we'd wait one more week. Over Christmas of that year I was finally able to relax, and by January my levels had plummeted.

In March of 2015 we decided that, although I was still being monitored, we would stop using any birth control. It had taken several months to get pregnant the first time, so we figured we could get started without there being too great a risk of actually conceiving. I had also done a lot of research that said it was almost unheard of for levels to increase once they had hit zero. Surprisingly, I fell pregnant on my first cycle and, when we had an early scan at six weeks to ensure I hadn't had a second molar, discovered we were having twins.

My fraternal twin boys are now six months old and asleep upstairs. I firmly believe that I had twins because I hadn't menstruated for several months, so had kind of a backlog of eggs! Just something to keep in mind if you're thinking about trying to conceive again.

I hope it helps to know that, even when you're trapped in the limbo of molar pregnancy - constant monitoring, having to explain your situation to people, unable to try to conceive, etc. - there absolutely can be a happy ending.

So glad you said that Zeka that's what DH and I are thinking. We're ready for a not so "oops" moment!

Titus Always lovely to hear positive ending stories, thank you! Congratulations on your twin boys. Nice to hear that being less careful from now on isn't totally reckless. Or maybe it is, but I'm glad that other people have done the same. Fed up of waiting.

So many posts since I last wrote!
Titus - always good to hear success stories. I had my second D&C on May 18 after a complete molar pregnancy back in January. I feel like this is going on forever and feel like I'm going to end up needing treatment, so it's good to hear your story - it gives me some hope! Zeka - sorry to hear that you've also had a molar pregnancy. That does sound strange that it would be complete if the egg had split into identical twins. 399 is really good for your first reading, so fingers crossed it goes down quickly! Lou - congratulations! You must be so relieved to be on the 6 month follow up - such a good place to get to. The D&C was okay, I was in a bit more pain the next day than I remember from the first time, but was fine a couple of days later. Got my next blood test on June 6 so fingers crossed it will show a drop in my levels. Although, as I said above I now feel like I'm going to need treatment...guess we'll just need to wait and see though. Feeling quite down about it all at the moment, but it's probably just nerves ahead of getting more results back.

Hi Suzy! I'm glad to hear your d&c went ok. Hopefully that will do the trick for you. Sounds like they may have been a bit more 'thorough' if you felt more sore this time around. Fingers crossed you don't need tx.

I'm going for my 1st bt that will be sent off to Charing X tmrw. Just need to remember to pee in the pot first thing and not go into auto pilot and forget!

I seem to be bleeding (v dark) more after last week's suction procedure than I did the d&c. I hope that's a good sign that the last of the pooled blood now is working its way out...??

FYI, my consultant said that once my levels get to 0, I could be less 'careful'. I struggle to get pg at the best of times so there's v little chance of an oops moment for us unfortunately. I can but hope though when the time comes. Just one little sticky one!!
Zeka x

Hey ladies, hcg down from 399 to 109 over 5 days - I'm happy with that :)
How's everyone doing?
Zeka X

That's a great drop Zeka! Hopefully it won't take you much longer to get down to normal! Xx

That's a great drop Zeka! Hopefully it won't take you much longer to get down to normal! Xx

That's a great drop Zeka! Hopefully it won't take you much longer to get down to normal! Xx

Hi all. Just read through this thread and it has really helped me and hope you don't mind if I post myself.

After 2 years of trying and a chemical pregnancy in January got my bfp in May. Was delighted but cautious after January. Had some spotting and bleeding so st 6 weeks 3 days had scan at Early pregnancy unit. Of course I was hoping they would find a heartbeat and the bleeding had been harmless but they said they couldn't see any evidence of a baby but my womb lining was thicker than usual. They said I had a pregnancy of unknown location. I had to go for blood tests to measure hcg and when they rang with first results they said levels were really high (can't remember number) and they suspected a molar pregnancy. Have to get another blood test today and they will see what those numbers are but probably will need to have an operation on Monday morning. I had vaguely heard of a molar pregnancy but I never considered this could happen to me (am sure is the same for everyone!). Just feel a bit lost but I suppose just have to take each day as it comes and try not to worry too much. Am usually a very well person so this has come as a shock and am just trying not to be too worried about the future and treatment etc.

Have found it so helpful to read this thread and am sorry we have all found ourselves here.

Sending best wishes to all and sorry for long post. Has helped to write it down!

Hi Cityzen and welcome! Good luck for today's test. Let's us know how you get on. There seems to be so little support for us ladies online. Even the specialist sites haven't had new posts for years! I usually post on fertilityfriends but given molars are quite rare, I've not even had a response there and the site is v active on a wide range of pg and infertility issues.
Best of luck!
Zeka X

Thanks Zeka. Yes I was surprised that I couldn't find much support online for molar pregnancies but was very pleased to find this thread!

Went to get another blood test yesterday and I asked the nurse what my hcg levels were before. Although the other nurse did tell me on the phone I couldn't take it in when she started talking about molar pregnancies. Anyway they said that on Thursday I was 22,000 and today I'll find out if that's gone up or not. I just keep asking everyone whether they are sure there can't be some mistake but I suppose with those levels they should have seen something on the scan. Will just have to try and accept it.

As everyone else says am gutted that we can't try again as soon as we feel ready. At one point I thought they might say it was ectopic and would have to have an injection which meant couldn't ttc for 3 months which I was really worried about. That seems short compared to 6 months or a year! Also am 41 so really want to get on with it.

There seems to be a lot of waiting doesn't there in all this too! So trying to distract myself while waiting for the hospital to ring. Hope everyone else is ok. It seems I have written a long post again - sorry about that!

Sorry for the non reply, Ive had an extremely busy few months.
Suzy - how are your levels going since the D&C?

I have had 2 normal results now, although I am still awaiting a period, it's been 12 weeks tomorrow.
I have also noticed that I have been sick quite a few times over the past week, I do however suffer with heartburn, but obviously it has had me panicked.
I have scans and blood work on tues morn - this was booked at my local EPU when I was diagnosed. Is this a standard procedure afterwards? If my levels are normal they won't see anything? I guess I'm just not looking forward to seeing pregnant people, I'd rather save myself the upset.
I hope everyone's levels are falling nicely, it's sad but nice to see some new posters with most places being so quiet
Xx

I get the time pressure, Cityzen!
I'm nearly 43 so time is of the essence. I'm hoping to do ivf in Sep if things settle quickly (too optimistic?) as I struggle to get pg naturally (on top of 4 miscarriages :/ ) Just wish I'd met my DH 10 years earlier!
Zeka X

Freckles I hope your scans and blood tests are OK on Tuesday. Just starting out on this road so I don't know much about it but maybe some of the others might be able to tell you if they had this. Know what you mean about seeing pregnant women. Is hard. It seems like everyone I see at the moment is pregnant. Glad you have had normal results though - you must be pleased with that.

Zeka - I know what you mean about time! I really wish we had started trying earlier. We've been ttc for over 2 years. I had one chemical pregnancy (and I think I might have had another one but didn't test but period was a week late. I had bad flu and thought that was delaying it but looking back think test would have been positive.) We were so delighted with positive test last month as well. We were waiting for a fertility appointment to come through as well but I suppose we won't be able to go to that for a few months at least. Not looking forward to having to cancel and rearrange that.

Just waiting in the hospital now to have my Erpc. My hcg levels had gone up but not by much. Think will be a really long wait and really hope it happens today as I really don't want to have to come back tomorrow. Just want to get this bit out of the way. Am really scared about how much am going to bleed. Tend to have heavy periods but don't know if they makes a difference one way or the other. The registrar said I could go back to work tomorrow but I don't think I could face that so have told work won't be in til at least Wed. What did others do?

Hope everyone else's levels are coming down.

Hi cityzen,
I would hang fire with going back to work if I was you, emotionally it's a lot to go through and you need time to grieve!
I began having really heavy bleeds about 4 days after my erpc, I left it for another 4 days until I collapsed, i had parts that they had missed, even though they scanned me throughout. My levels 8 days after we're still 63000, and it was heavy and painful as my body was trying to pass it. Once they had passed bleeding was minimal xx

Ps, I really hope everything goes well zz

Hi Freckles!
CityZen, I hardly bled at all. Just slight brown spotting for a few days. It wasn't till after a scan 2 wks later (where my consultant saw some pooled blood) and had a rummage around with a pipelle that I the spotting got heavier & darker for several days. That was 2 wks ago and all stopped now.
I had a follow up call with my fertility clinic this week (ARGC) and the dr I spoke to was v impressive. I do feel like I have a lot of professionals on my side going through this (even if those (us!) with personal experience are a little thinner on the ground).
Definitely take time off after the erpc to grieve. In terms of procedure, I had a little more cramping than and a hysteriscopy but still not much. But emotionally it's much bumpier trying to go back to work. Take time to grieve. Xxx

Oh, and there were 3 heavily pg ladies in my team, so I didn't fancy rushing back to face that. Think I had a few days off work before the erpc & a week afterwards. Although I was just about to leave that job so I could have taken longer & not returned but fancied a few days to say my goodbyes. It's a v personal choice of course and I could see how some ladies would need a few weeks off to get in the right place mentally & emotionally.

Hi ladies, hope everyone is doing okay. I got my first results back today since my second D&C - my blood is now sitting at 65 and my urine at 25 (although I forgot to pee in the jug when I went to the loo at 3 am - so hard to remember when you're half asleep! So urine might be reading a bit lower than it is). Anyway, I'm happy enough with the results - it's going in the right direction, although still don't feel out of the 'danger' zone with needing treatment. Don't think I'll feel out of that zone until I'm down to normal and my 6 month checks are finished!! Anyway, let me know how you're getting on xx

Hi all. Thanks so much for your replies. The Erpc was ok in the end. The doctor said it was fine and there wasn't as much blood as they thought there might be. The doctor who I initially saw I didn't feel comfortable with. He was quite abrupt so I was relieved when a different much more sympathetic doctor did the operation. Anyway as you have all said I haven't had much bleeding so far (not complaining of course!) but I am prepared for the fact I might start at any time.

Thank you for your advice about going back to work. The nurses gave me a sick note for a week and am grateful for that. Physically I suppose I could be in work but just feel so up and down that think need some time to grieve. Am seeing a friend today who had a miscarriage a couple of years ago and then my parents are coming. We've only told my parents and my friend so far. We might tell others as time goes on but just trying to get our own heads around it first.

Suzy your results sound good. Going in the right direction as you say. Really hope you don't need treatment. Fingers crossed.

Freckles sorry to hear that you collapsed. That must have been frightening. How did you get on with your scan? Was it on Tuesday? Hope it went well.

Zeka I know what you mean about having professionals on your side! I think I said that we had just been referred for fertility treatment before this happened but I suppose I need to wait until the results come back from the lab to see if this definitely is a molar pregnancy. How long did you have to wait for those results? The doctor told me it would be 6 weeks and they would only contact me if it was a molar but the nurses said they always chase the results if it is a suspected molar so more likely will be 2-3 weeks. I am going to chase them up about it as of course I want to know. Have to go back for more bloods on Monday so will see if hcg levels are falling. They started at 24000 so hopefully will have gone down a bit.

Thanks so much for all your support. It really means a lot.