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 Donna, I'm sorry that all sounds very confusing and upsetting for you. I'm glad they've now figured out what it might be but it sounds like they aren't being very informative . I don't quite understand why they wouldn't put you on a proper course of methotrexate? Which specialist centre have you been referred to? I think any drop in hcg levels is good and as I understand it, the levels can go up before they start to come down. You'd be best to talk to one of the doctors or specialist nurses treating you though. They can be very reassuring and should explain the situation fully to you.
Let us know how you go, I hope the treatment has been okay so far.

Hi ladies, I'm after a bit of advice. I discovered to my delight that I was pregnant about two weeks ago. I had an early scan, when by dates I should have been 6+4 weeks which showed 5+6 twins (single gestational sac, single yolk sac, two foetal poles). The sonographer showed me the first twin's HB, then put the colour doppler on which clearly showed two separate areas of colour. She has recorded that she has seen both HBs.

Fast forward three days and I had some (awful) pain and a bit of bleeding. Returned to EPAU and scanned again. This time there was an irregular gestational sac with "some material" inside, but no HBs seen. The rest of my uterus showed up as one massive echogenic area. The sonographer and gynae SHO explained this could just be blood, but that they were concerned about a molar pregnancy. This is partly due to scan appearances and partly because I have a bicornuate uterus and the echogenic areas are throughout, rather than in just the area the pregnancy was. I'm booked for ERCP tomorrow.

Not sure what to think to be honest, I was under the impression that if you had a molar pregnancy you didn't grow a baby as such. But they showed me a heartbeat. Could one twin have been normal and the other a mole? And how long is the physical recovery from the procedure? I presume I need the ok from histology and/or normal HCG before trying again, how long does this typically take?

Thanks in advance

Hello ChatEn Oeuf, that sounds like a horrid shock for you, I'm very sorry. They really should have explained more about molar pregnancies rather than just throwing it out there for you to worry about. Molar pregnancies can be partial or complete. Partial molar pregnancies have foetal tissue and it is possible for there to be foetus plus a mole (mass) though the foetuses tend not to survive. Complete molar pregnancies have no foetal tissue and are made up solely of placental tissue and so consequently there is never a foetus. They will know what yours is once they have results back from pathology after the erpc - hopefully not molar.
Most women, after either sorts of molar pregnancies just have to wait for the hcg hormone levels to go back to normal after an erpc before trying again (there is no set time for this - it can happen within a few weeks or take months) and a few (15-20%) have to have some sort of treatment if the molar tissue grows back. I fall into the latter category and can explain about all that too.
Probably best for you to talk to your doctor who should give you advice on all this. There is useful advice here in the meantime www.hmole-chorio.org.uk
Personally I found it helpful to know the whole deal from the start (hence my short essay) even if it is a lot to take in.
Feel free to PM me. Best of luck with the erpc. xx

Hi Ladies,

I'm just popping on to check how everyone is doing. Its been a while since the last few posts so I know you are all well into your struggles with your loss and the aftermath. I'm sending thoughts and prayers out to all of you!!

Bump

I'm sorry for the very late reply @hels29! I somehow lost track of this site (I think I accidentally registered with my husband's email that was logged in. oops.

Anyways, about the bleeding while on methotrexate, I actually had normal periods right after my D&C, despite elevated hcg levels for months. They continued throughout the chemo treatments on a very normal schedule.

I have some updates now too! It has been nearly a year since the end of my treatment and we were given the go ahead to TTC. I got pregnant in December and it ended in an uncomplicated miscarriage at 5.5 wks. I got pregnant again, two weeks later! I am now in my fifth week and hoping for the best. Best of luck to all you ladies!

Hello everyone, I wonder how you are all doing? The thread has been going for a few years so hopefully people are well on road to recovery now.

we have just had the crazy 48 hours since 12 week scan, discovering no baby, suspected complete molar pregancy and ERPC yesterday. And all that goes with it of being plunged into knowledge of a rare condition and emotional fallout.

It's early days for me but I just wanted to say hi- I've read the full thread and everyone seems so amazingly strong and resilient in the face of what this condition can involve. Hats off to you all.

I'll get my histology results to confirm in 3 weeks at the follow up appointment and take it step by step from there.
Bye for now x

Take care of yourself Choy. I found it quite tough for a few weeks trying to get my head around it all. Hope you get happy news xx

Thank you Tiddles. I hope you are well now x

Hi choy I had a complete molar pregnancy, it was a real shock and I really struggled for a while. I only needed 6 months of follow up, no treatment.

Hi Purple,
Thanks for replying. It's good to hear a positive story of a complete molar. They seem to be so rare. I'm feeling pretty isolated. Friends who I have told have had miscarriages and try to reassure me that we can try again and it won't mean anything for the future, but at this point we just don't know that and it's so hard to keep positive. That's why it means so much to hear a good outcome like yours. I really hope you are well now and the future is bright. Thanks againX

It's very difficult in the beginning, people just don't understand. I found it a bit easier when the follow up had started and I could see my hcg levels falling. I really struggled when first diagnosed, I couldn't eat sleep or go to work and thought I was never going to have a baby but I'm now nearly 37 weeks pregnant. Xx

Congratulations purple that's absolutely wonderful news! Good for you I'm so pleased. Fantastic fantastic. So good to hear your story. I'm going to try try try to concentrate on getting over the ERPC and not obsess over the probabilities and possibilities while I'm waiting for results. Wishing you so very well for the rest of your pregnancy and of course the birth and everything that follows xx

Bump

Hi Choy, mine was complete too. I had to have methotrexate in the end but it really could have been a lot worse. Peoples' reactions are one of the hardest things to deal with: "But you LOOK really well?!"
Purple -such lovely news, congratulations!

Hi Hels, thanks for posting. How are you feeling now some months on from the methotrexate treatment? I hope that your recovery is going well. Such a hard thing to go through. I'm pretty frightened of the prospect.

I'm feeling a bit more positive the past few days after lovely GP gave me all clear to resume some normal routine. It feels good to be outdoors and a bit more active.

Counting down the days til my follow up and results of histology as I want to get monitoring started and not just waiting around in limbo.
X

Hi Everyone,

I have been a lurker on this thread for a while ... Really hope everyone who has been a part of this thread is doing well now and on their road to recovery! Quick question please. My sonographer thought he saw what could be a partial molar on the scan when they diagnosed my mmc. I am awaiting histology results but my hCG levels have dropped to 66 ... 9 days after having an ERPC ... Are these levels okay? I was 11 weeks when I had the ERPC but baby had died at 6 weeks. Not sure if 66 hCG is something to be optimistic about.

Sorry for the vague question ... clutching at straws here while I (im)patiently wait for histology results to come back.

Thanks for your help :)

Hi nehagarg. How are you feeling? Did you get your histology results? I haven't had mine yet will do on Friday. Hoping for good levels, and hope you get encouraging feedback from your numbers. X

Hey choystory ... The very best of luck. I really hope yours come back negative fir the molar pregnancy. I an still waiting for mine. Crossing everything that the sonographer messed up when he thought he saw a partial molar pregnancy.

My hCG levels should be low enough now. Did 2 pregnancy tests on sunday and both were negative. So hoping for super low numbers when docs check my hCG again on wednesday. :) That way even if histology says i had a partial molar, i wont have insanely long to wait before i can try again.

How about you? Had any hCGs done yet. I am so sorry that any of us have to be on this thread at all. :(

Hi Nehagarg how did your results come back? Sounds like with 2 neg preg tests it all should be fine nice and low.

I had myfollow up today and the histology confirmed complete molar. I will be referred to Charing x. But the consultant, who said she'd seen many many molars in her time, was very reassuring and confident that I was on a good road to recovery. So that's given me a boost as first bit of non-awful news in a month. I'll start the testing within the fortnight and just keep crossing everything that the levels come down.

Sending you all best wishes.

X

Oh no choystory. I wish you all the strength and love while you are testing the next few months. I am sure all will be well very soon!

My results came back negative for a molar pregnancy so I am just waiting for AF so we can begin trying again.

All my thoughts are with you.

Thank you nehagarg - I feel stronger now than I have done so far, so that's something! That's such good news for you though, I really am so pleased for you it wasn't a molar. Now you can focus on a bright future. All the very best of luck x

Hi choy sorry histology confirmed cmp, hoping your levels come down quickly

Thanks Purple, me too. Hope you are ok, and good luck! X

Hi Choy and Purple, sorry for delayed reply, been a bit distracted …
Charing X are so great, you are in very capable hands but do get in touch if anything is worrying you. I bled on and off after the erpc which really made me worried and it was great to have people here to support me.

Purple, how is it going? Have you had your baby?