Partial molar and molar pregnancy support thread - all welcome!

(681 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.

Stealthtoast Sat 24-Sep-16 12:34:23

Thank you! Just bought poas weeks test so I'll try it in the morning. The price of those things is crazy! I know is not very accurate but on the off chance it's low it would be good news

MonkeyPoozzled76 Fri 23-Sep-16 21:44:01

Hi stealth, I'm really sorry to hear of your loss and the mole diagnosis today too. It just seems like one thing after another doesn't it.

Everyone else seems to be a bit quiet on this thread currently and although I'm sorry any of us have found ourselves here I'm glad to here from you.

I'm about a week ahead of you, five weeks since my MMC and first ERPC. I had my second ERPC as they just thought I'd got retained products, it was only because I went to see my GP with bleeding (I was told I'd have none both times, so don't worry) after this I got pushed for follow up back at the hospital. I asked her about the posibilty of a partial molar because of the bleeding and the fact that I was still getting postive pregnancy tests. The normal pee on a stick test will tell you there is hcg present, but won't give you a 'number' and you'd not be able to compare accurately enough to tell if your levels are reducing. Charring Cross will look at bloods and urine to monitor you. I had a blood test on Friday at the GP's and it was 64, I had another yesterday and my levels had dropped to 30 so going down but the hystology results combined with something concerning/increasing on my scans has made the consultant refer me. I don't understand my low levels as thought if the mole was growing they'd shoot back up.

I called Charring Cross today as just wanted to know what to expect, the lady I spoke with was fab, she'd already got my contact info but no notes or anything else from the hospital confused, she explained they'd request my slides and review to confirm the diagnosis but had my testing pack ready to send to me. Here is a link to their contact info, the rest of the site is good too:

www.molarpregnancy.co.uk/contacts.html let me know how you get on, I'll keep you posted but I think I've had enough google time for today, my head is going to explode. flowers

Stealthtoast Fri 23-Sep-16 20:07:37

Hello Monkey and all
I'm new - partial mole diagnosis today after mmc and erpc a month ago. Very sorry to hear of all your losses and of Monkey's lack of support. I hope we can all help a bit.
I'll get the referral to Charing Cross next week. Is it worth taking a pregnancy test in the meantime, and if so is there a kind that tells you more than others about levels? I've had pretty much no bleeding since erpc which I'm not sure whether is a good thing or not...

MonkeyPoozzled76 Fri 23-Sep-16 07:56:08

Hi Hjp and anyone else still here, I've used this board lots since my MMC but now things have stepped up somewhat and I don't know where to turn.

A quick (not) introduction.....

I had a MMC five weeks ago today. I was 10+3 baby measured 10+. I had an ERPC the next day. I continued to bleed for three weeks and continued to get postive HPT's, I also needed a week of antibiotics for a suspected infection. After a few calls to the EPU I was asked to come back in for a scan. I was found to have retained products and told only option was to have another ERPC with a camera, to be carried out by a Consultant. This was done two weeks ago and was physically much harder than the first one.

I was discharged on the same day bleeding heavily and passing grey/white bits (awful). I've bleeding heavily since this, had cramps and passed more tissue. I spoke to my GP who got hold of the Consultant and called me back in last week. I had another scan, inconclusive, womb full of blood and another course of antibiotics. I've also been told I've got fiberiods (small internal and external) plus a cyst on my left ovary. I had my follow scan and appointment yesterday. There is a now a mass in my womb although my Hcg has fallen from 64 to 30 in a week. The Consultant has told me the pregnancy has now been confirmed as a Partial Mole and I've been transfered to Charring Cross for follow up and treatment. I have another appointment next week locally to assess my need for a third ERPC with ultrasound to clear my womb if it doenst happen naturally this week.

I'm just so worried, this was my first and much longed for pregnancy, I'm 40 next month. When I thought I just needed to recover from the first surgery then I could try again I was coping although still heartbroken for the baby I'd lost.

Now I'm just terrified. I'm confused as to why it's taken so long to work out what was going on, I've had nothing but apologies from all the doctors about the delays and I've been offered details for PALS to raise a complaint (not some thing I want to do). I'm frightened about future treatment and so worried that at my age any delay in being able to try again is massively reducing my chances of becoming a mum.

My husband has come to my appointments but is adamant I should not be upset about any of this as the Consultant said I'd be fine after treatment. He's not offered much support after our miscarrige past the first week. He's been very angry with me being so upset firstly about the loss of the baby and latterly about all the ongoing physical problems I've had. He's not very forthcoming with shows of emotions usually but this has really broken me. Whilst waiting for my diagnosis yesterday he booked an overtime trip with work and left for a four day trip to LA at 05.30 this morning.

I don't know what I'm really asking, but if anyone in a similar position or anyone who has been through this wants to compare notes that'd be great, I don't have any girl friends who've had a MMC let alone anyone who even seems to know what a PMP is. I just feel very, very alone.

HjpMP Thu 15-Sep-16 12:04:56

Hi
Is anyone still on this forum? I've just been diagnosed as having a CMP and had a SMM op yesterday. My levels started at nearly a million so am expecting it to take a long time for them to drop 😞
Been reading some of the stories on here and am so sorry for everyone going through this. Xx

Molarpregnancy1 Tue 02-Aug-16 20:53:40

Hi cityzen74,

Sorry for the late reply. I've been away. I have good news. The day I went to have my 1st urine and blood hcg test with the GP, my period came within 2hours of it being done. I took this as good news while I waited for Charing Cross to ring me. They phoned the following week to say my hcg levels were undetectable, so that means they were less than 2. I was delighted and said I thought they had dropped because I had had a period, and the lady confirmed that you will not have a period unless your hcg levels become less than 100. Something I didn't know. So anyway, my results were worth waiting for. Undetectable is great news, although she did warn me that this does not mean "out of the woods" and that monitoring will have to continue because if the mole is going to grow back, it's usually within the 1st 6months. So, the monitoring will carry on as planned but I am relieved that the 1st result was a good one.

How are you? Did your histology report confirm it was not a molar pregnancy? You must be so confused, and I feel for you. Having a missed miscarriage myself I understand your grief of the loss you have suffered. But for me, and others on here, knowing the reason for the loss (although not comforting) can sometimes help in the grieving process. But it is a loss no matter what, and devastating no matter the reason. I'm sure for you this must be a very confusing and sad time, but very important that you've been informed correctly as to whether or not this was a molar pregnancy as I'm sure you know the dangers of another pregnancy if it had been molar. Are they absolutely sure it wasn't molar? Have you seen your histology report?

On another note...have you had any luck conceiving yet? And have you been seen yet by the IVF consultant? Keep us updated on your progress. I'm keeping my fingers crossed for you.

As for me I have to send another sample to Charing Cross in 2 weeks to continue the monitoring process, and fingers crossed all will continue to be good news. For all of us on this forum.

Xx

Cityzen74 Thu 21-Jul-16 20:33:01

Hi Molar. Sorry to take so long to answer. Congrats on getting your period (feels weird saying that doesn't it?!). I too got mine 4 weeks and 2 days after the Erpc and was really pleased. My gp told me that to have a period my hcg would have to be 0 and then would have to wait 1 month after that. it must have not taken long for my levels to go back to 0. It was also quite light so maybe that is normal after an Erpc?

It turns out that my pregnancy was not molar in the end. I am of course pleased but still don't understand why I had hcg levels of 24,000. I suppose it is a mystery and I just have to accept that I will never know. We've been ttc again but not confident. We've been referred for ivf and after my gp saying all my tests came back fine that wasn't quite true. I have quite high fsh levels but hopefully we can go ahead with ivf soon.

Have you had anymore results? Hope you are as well as you can be.

Molarpregnancy1 Sun 17-Jul-16 23:05:15

Hi lou1791,

Yes that's how I feel. The more periods the better (surely???!!) I also feel that it must be a good sign, and although the hcg level may not yet be "normal" hopefully the fact I have a period must mean that I should be close to normal. I will hopefully find out in the next few days from Charing Cross.

This period was a bit strange though, not like my usual ones. Mine are usually very heavy and last 7days. This one is very light and has only been 5days...but still a period :-)

I am sorry for your loss. Are you still being monitored or have you completed it now?

Xx

Lou1791 Sun 17-Jul-16 17:21:09

Molar to answer your question, I too felt relieved when I got my period back after more than 6 months. I can't remember the exact figures but I think my HCG levels were still around 50 when it returned. So lower than it had been but not yet 'normal'. I think it then took another 2/3 months to get to normal. I felt though that each period was helping 'clear things out' as it were.

Molarpregnancy1 Fri 15-Jul-16 22:39:20

Just thought I would update in the hope that you ladies could maybe advise me.

I went yesterday to my GP to have my 1st urine and boos test done for Charing Cross. I had my D&C nearly 6 weeks ago and have been waiting for my period since then. I arrived home from the GP- ...and I have a period!! I might be jumping to conclusions but a massive weight has been lifted from my shoulders...because I have read in this thread that other ladies who had their period was a sign of good news, because that means that the Hcg is very low/ normal.

Am I right in thinking this? I imagine Charing Cross will give me my exact results early next week, but I already feel lighter. So here's hoping it's good news from here on in.

Have any of you been told that having a period means that everything has gone back to normal, and then had it confirmed by your bloods/ urine? I know the follow up is a long process, but just wondering really if having your period for you meant the beginning of good news. Would love to hear your experiences, and I'm looking forward to hopefully being told what I think I already feel....that my hcg is of no real concern being that I now have a period. I am happy to go through the follow up care, but just feeling relieved because a period surely can only be a good thing now 😊

Thanks ladies, and I hope you are all doing well?

Xx

Molarpregnancy1 Wed 13-Jul-16 12:41:59

Hi citysen74

How are you? Did you ever get your histology report? Have you found out yet whether or not it was molar? I'm sure this has been a terrible time for you, especially that your fertility appointment came through. I really hope you hear some good news and can start ttc ASAP.

All is the same with me. Still no period and still feeling like I should be expecting 1 any minute, but nothing so far.
Have my 1st blood and urine test tomorrow since the confirmation of molar pregnancy and then the results will be sent to Charing Cross. I hope to get some good news early next week. Though I'm not too sure what "good news" is because I have no idea what the hcg level was at the time of D&C. But it is a relief to finally get this testing process started!

I feel for you, and I'm am terribly sorry for your loss. Keep me posted on your news. Keeping you in my thoughts

Xx

Cityzen74 Wed 13-Jul-16 08:35:47

Molar - I am really sorry to hear about your loss and it must have been such a shock to find out it was a molar pregnancy. I really hope that your levels go down quickly and your period comes soon too.

Molarpregnancy1 Thu 07-Jul-16 12:24:41

Hi Suzyhart7,

Wow you did have a rough time! I am sure you are relieved to be coming out the other end?!
I have been a bit sick this morning, though I imagine that as I'm feeling a bit "periody" that maybe that is why. I haven't felt like this since I had the op, so I am waiting (impatiently) on a period now :-). I have gathered from most of you, that when a period comes it's a good sign as it helps to remove any cells that may have been left. So...I'm just waiting!

You must be very frustrated? How have you been feeling? Did you have the 2nd D&C alone, or was it along with chemo?

Fingers crossed for you that you and your period will meet again soon! 😉

Xx

suzyhart7 Thu 07-Jul-16 10:51:43

Hi Molar, sorry to hear that you're also in this boat! I've found this thread really useful over the past 7 months. Sorry to hear about your molar pregnancy, it is a lot to get your head round. Especially as you weren't aware for so long. You need to give yourself time to come to terms with it, and accept there will be a few bumpy moments along the way! It's good you've got a supportive family - that will really help.

The good thing (if that's possible) about a partial mole is that the follow up time is usually shorter and your hormone levels should go down quicker. Which might well be why you're feeling 'periody'. I still haven't had a period since October last year! I must have conceived in November, had my D&C in Jan, hormones initially dropped but then plateaued so had second D&C in May, then received good news at the end of June that levels are back down within the 'normal' range, so now on the 6 month follow up. I had a full molar pregnancy though which is why mine took so long. Like you though I'm now freaking out about when I'll actually get my period!!

Anyway, let us know how you get on with your results from Charing Cross, fingers crossed your levels will drop quickly!

Xx

Molarpregnancy1 Thu 07-Jul-16 02:22:18

Hi all,

I've been reading all of your stories now for a few weeks, and as I can't sleep (again) thought maybe I needed to talk.

I haven't discussed this much other than with my partner and family, who are very supportive, but I was thinking that maybe a bit of reassurance from other ladies who have been through/ are going through the same would possibly help.

I am a 32 year old mother of a 2 year old little girl. My partner and I were delighted to find out I was pregnant after being on a mission to make another baby! We succeeded, and I had my 1st scan at 13weeks 4days (may 31st) I was informed there was no heartbeat and given my options of how to proceed from there. I chose to have a D&C for the sheer fact that I could bare the thought of a dead baby inside me, and also they said the baby stopped growing at 7.5 weeks (my body was showing no signs of removing the products itself) so I couldn't bare the agony of not knowing how long it could possibly take, whilst trying to deal with the grief and also be a good mum to my nearly 2year old.

I bled very lightly adter the D&C for 10 days which was done on June 6th. Physically I felt well until 3weeks post op I've started to get the most awful tummy cramps and lower back pain. I didn't tell anyone because I thought it's probably my period coming. Still no sign of period, just constant pain.

I then got a call from the hospital last Wednesday which I wasn't expecting. I had to attend that day and they informed me I had a partial molar pregnancy. Devastated. I had heard of it, but didn't know too much detail. But the main problem was that at the time I had the missed miscarriage- I didn't grieve properly as I had a lot of other stuff going on, and then just as I was starting to find time to grieve for the loss of our baby, I was given this news. I feel very numb again. And although I have a very supportive family and partner, we don't seem to talk much about the what ifs? And they remain in my head...all day.

I spoke with Charing Cross yesterday and my sample kit has been sent out. So I will hopefully have it returned next week (I live in Ireland) so hopefully not too long til the 1st of results. I have no idea what my hcg was (as I never considered a molar pregnancy, and to my knowledge it wasn't suspected by the local hospital) so this will be the 1st time I will hear anything.

I just wanted to ask all you ladies...I have not yet had a period (now 4 weeks post D&C) but am still gettin these terrible "period like cramps" and backache. Did anyone else get it and then have a long wait for a period?

I have read all of your stories...some very strong & brave ladies out there 😄

Cityzen74 Tue 05-Jul-16 08:34:06

Yes here's to zero hcg levels Zeka I agree! The EPU told me to do a pregnancy test 4 weeks after the erpc. This was yesterday and I took the test and it was negative. I was really pleased and that's something I never thought I would be pleased about if you know what I mean! I used one of those Superdrug Tests which detects hcg at 20 so that must mean my hcg is under 20. I felt a lot lighter yesterday after that and hadn't realised really how much I was worried about doing that test. At least now I won't have to go back for more scans or anything at the EPU.

I know it doesn't necessarily mean that the pregnancy wasn't molar but at least my levels are going down quickly and the quicker they go down the quicker I can start ttc again! I still haven't got the histology results back so I'm going to ring the EPU and see it they will chase it for me. They told me they would chase it after 2 weeks but I suppose they are very busy so I'm going to ring them about it.

Zeka your dh does sound like a star! I also feel very lucky as my dh is supportive and is keen to ttc again as soon as we can. I am just going to my local hospital to see about getting IVF. The appointment is in 2 weeks and I'm really hoping I get my histology results very soon so I can know if I can go to the appointment or not.

My period hasn't arrived yet either but I am sure I ovulated about 9 days ago (I'm possibly imagining that!) so I am hoping it might turn up early next week. I never thought I would be glad to see my period. My Mum once told me I would be glad of them when I was trying to have children but I didn't believe her. Turns out she was right after all.

Hope everyone else is well.

Zeka Sat 25-Jun-16 07:50:27

Thank you for your thoughtful words, CityZen - no one else (around me) gets it. And although I've had a couple of sympathetic friends, the topic is more or less done and dusted for them despite losing my 2 babies.

My levels got to 10 in just under 5 weeks, so pretty quickish but they were only 399 2 weeks after the erpc (don't know before).

I've not had a period yet. If I remember correctly it took 6 week when I miscarried at this stage before, so I'm hoping at the end of this month.

Yep, I've got a couple of the digital monitors too. One which needs the dates & tells you when you should test (fine if you remember to input the dates!!) & one I can use anytime.

I hope your results come back as no molar too & you can crack on with your fertility journey. Which clinic are you meeting with?

My husband has been a star and although he thinks I'm nuts wanting to try ivf (and all that comes with it) again, particularly as we have 2 DCs already, he knows how determined I am and will support me wholeheartedly. Who could ask for more 😊

Love to you all and here's to zero hcg levels & misdiagnoses!!!

Zeka x

Cityzen74 Wed 22-Jun-16 19:25:06

Hi Zeka. That is good news that it is not molar. It is a bit perplexing about the reports disagreeing with each other. I don't understand that either.

I do understand your mixed feelings about it as it did provide a reason for your miscarriage as you say. But of course is very sad that you lost your twins whatever the reason. If you do want to ttc again you can do that sooner than you thought originally.

I am still waiting for my histology results and of course I want it not to be molar so can start ttc again. However I think I might have similar feelings to you if this happens because then I won't understand exactly what happened and why they couldn't see anything on the scan with my levels as high as they were. Anyway I am trying to be patient! I have delayed my fertility appointment for a few weeks when I should have the results back and if it is molar will have to cancel it.

Have you had your period yet? Do you have to wait til hcg is at 0 before it arrives? How long has it taken for your hcg to go to 10?

Good luck with your ovulation sticks. I have one of those digital monitors and am hoping it will still work when I can try again!

Hope everyone is well.

Zeka Tue 21-Jun-16 18:16:52

Struggling to understand how one histology report say 'complete molar' and the next one say 'no molar detected' (not even query!)???

Zeka Tue 21-Jun-16 18:11:03

Hi everyone, it's lovely so read so many updates on here.

Well, a bit if news from me today. I've spoken to Charing Cross Hospital today and they have told me that their pathology testing is showing there wasn't a molar pregnancy and are therefore saying it was a normal miscarriage (with no ongoing risk). Good news in many ways, however, it has thrown me as I'd thought at least there was a reason for losing my twins.

My hcg levels are down to 10 (whoop whoop!!) so they are hopeful I should be back to 0 by my test at the end of the month - with no reason not to try to conceive again. (*dusts off ovulation sticks*) smile

This really is good news but I'm feeling quite mixed up about it.

Big hugs to you all
Zeka xoxoxo

Cityzen74 Sat 18-Jun-16 09:33:37

Thanks Lou. That is really helpful. I am pleased with how my hcg has dropped and trying to be more positive.

Hope everyone is ok and can have a good weekend .

Lou1791 Thu 16-Jun-16 19:29:44

Cityzen also think those numbers sound good early on. Mine was still 1500, two weeks after procedure. It had dropped a lot though.

Don't worry about work, take your time. flowers

Cityzen74 Wed 15-Jun-16 16:02:55

Thanks for your quick and lovely reply Freckles. It's really helpful. i think you're right that everyone is different and so everyone's levels go down at different rates. I suppose I'm feeling impatient today but I should find out more soon!

Hope you are well. A holiday sounds lovely and I think booking one for some time away is nice because you can look forward to it. We're hoping to book ours for the beginning of September so will try and do that soon.

Frecklesfrodo123 Wed 15-Jun-16 13:02:18

Hi cityzen,
Please don't feel be guilty about being off - it's such a massive thing to go through. I'm now 14 weeks since erpc and I'm still having bad days!

I think your HCG levels sound well for a week later, mine were 63000 but we're over a million before the removal so had dropped significantly. I think that can make it hard to compare as everyone's start points are so different.

Even if it is molar, you can try again without such a huge wait providing your levels return to normal without treatment, once they are back in the normal range I think the risk of regrowth is around 0.1-2%

I have a holiday booked for Feb, as at diagnosis I was told I would have to wait a year so booked something to look forward too, else I would be trying now as I figure the risks are so small.

Hope you are recovering well and have your histology results soon
Take care

Cityzen74 Wed 15-Jun-16 12:18:00

Hi all. Hope everyone is ok. Am still off work. Was intending to go back on Monday but just didn't feel at all ready. Went to the doctor and he signed me off for another 2 weeks. Initially felt guilty about it but now just trying to focus on feeling a bit better and not worrying about work.

Went back to EPU to get hcg measured again and they came out as 267. The nurse said this was good and I should do a pregnancy test in 3 weeks and ring them if it's positive. Can I ask what others' hcg levels were a week after erpc?

Also on top of everything else I got a letter through for a fertility appointment. I expect I will have to cancel it but am clinging on to the fact that if this isn't molar then I can go. However I expect it will be as the nurses said they could see cysts in my womb lining on the scan which looked like a molar. Am going to see my GP next week and the EPU said she would have access to the histology results so I might be able to find out then if they are ready. The nurse said I could wait and if no-one contacted me just to assume it's not molar but as I am desperate to ttc again I need to know as soon as possible.

Sorry for the long post again. If anyone is around who remembers what their first result was would be grateful to know it.

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