Partial molar pregnancy

[NphysT]

Found out at my scan on Monday baby has no heartbeat and it is a partial molar pregnancy so they booked me for surgical management yesterday morning and now have to have my hcg monitored on a weekly/fortnight basis till it drops to below 5 (currently 160000 even though I'm meant to be 8 weeks and baby stopped growing at 6 weeks) as it can turn cancerous. Has anyone had this before and shed some light into what I'm in for.

100%! Hopefully we hear something soon. It must be a massive weight when you know you're out of touch for a while too - I hope you manage to have a lovely holiday!

Fingers crossed - in a way it’s been good to hear from you about your wait. I think I’d be stressing on holiday about it thinking I’ve missed a letter from them, but hopefully now I can put it to the back of my mind for 10 days to enjoy my holiday & deal with it all when I’m back.

Hope you aren’t waiting too much longer

That's definitely the way to look at it!

Maybe monitor through weekly pregnancy tests if you're able to? Hopefully Sheffield are in touch sooner rather than later. Could you try calling them to see if they've recieved your referral? I did that and when they told me they hadn't recieved it, they told me to go back and contact my hospital and a consultant did it the next day.

I don't think they will, a consultant called me and discussed it so I typed up some notes from it but tbh I wasn't expecting all of that information so all my questions have come after. Hoping once they send the letter through and I have the blood test I'll get a proper appointment to discuss it all

Yeah I think chasing it might be my best bet. I'm going to Google the number. There's a referral showing in my NHS app but it doesn't say Sheffield, just "gynecology" with a 5 month waiting list ... 😑I'm hoping that's just a system generated thing or for a separate follow up as the hospital seemed to think it would be quite quick. I've never had any contact with maternity or gynecology before this.

Definitely worth asking them when you get the extra info. Or maybe your GP could discuss with you in the meantime? I know appts are hard to get though.

@Noideawhatshappening ive just checked my online app & the only referral I have showing on there is for a recurrent miscarriage clinic appt I am waiting on

@Noideawhatshappening I’ve just searched on Sheffield’s website, and it says we should be sent an information pack within 3 days of the referral being received

Thanks for looking it up @Figtree11

Definitely sounds like it's worth a chase. I have the removal 2 weeks ago tomorrow.

Hopefully they get in touch with you once you're back from your hols

@Noideawhatshappening no problem. I have just had my urine sample pot through the post this morning

Hi Just a little update from me, I recieved my information pack and the little urine pot from Sheffield on Friday so a week after the referral was done. My blood test last Monday showed my hcg is now below 5 so back to normal and I also got my period last week toom so all in all, it took 6 weeks for my hcg to go from 160200 to 0 and me to get my period back after surgical management. I think I have to have 1 more blood test in 4 weeks and then I'm discharged.

Hope you are all doing ok, and reach zero as quickly as possible. Feel free to send me a message if you have any questions or just want to rant x

@NphysT that’s great to hear. I’m so pleased you are now at zero.

I also had my urine pot last Thursday, and had a call from Sheffield today saying my level was 0.28 which they class as negative and so I can now move onto the blood test. Have to do that within the next 4 weeks, so hoping I can be discharged after then. In the meantime still have to submit urine samples. I’m 6 weeks post surgery tomorrow and my pregnancy tests are negative as of today, but still waiting for my period to arrive

Great to hear everyone's progressing in the right direction.

I'm at 39 as of yesterday so definitely on my way!

Good luck with the next round of tests all.

That’s great @Noideawhatshappening not long to go now it seems!

How's everyone getting on? Has anyone had a period and is willing to share how it went for them?

I started bleeding yesterday which I'm assuming/hoping is my period but it's very heavy and painful. Hoping the first one is just a bit worse than usual? Not sure I could cope with this every month!

Hope everyone is doing okay.

@Noideawhatshappening No period for me yet, surgery was 7 weeks ago now. Slightly concerned, but it took me a while to get one after last MC.

Sorry that it’s painful. Hope you are doing ok apart from that. I’m doing ok though, had a bad week of feeling down with what’s happened, and worried about the future. But I know I’ll come out the other side

Hi @Figtree11 sorry it's been a rough week. On top of everything, having all the hormones settling down is bound to have an impact.

Do you have support from partner/family? It sounds very difficult to have experienced multiple miscarriages. Does your hospital offer any talking/grief services?

I hope this weekend is a better one for you. Do you have any plans?

Hi. I am two weeks post op for suspected molar pregnancy. Levels went from 111000 to 47000 in the first 24 hours. I have just tested this morning and it’s a blazing positive still. I am still nauseous. Should I just wait another week to contact epu? I am sorry you have all gone through this. X

Thanks @Noideawhatshappening yeah I have a very supportive partner & family. Last week I was feeling perfectly fine, but seem to have plummeted this week. Perhaps it is hormones as I’ve also got awful skin.
The EPU did give me a number to ring if I wanted to look into counselling. I don’t know why but I feel nervous to ring it. But maybe in the next few days if things don’t improve then I will.
I’ve a quiet one this weekend, hoping the sunshine will stick around to enjoy! Have you?

@McConkeysPlate so sorry for your loss. From experience the EPU won’t see you until 3 weeks after the op. They have then before asked me to wait another week after that. I’m 7 weeks post op & get the very faintest of positives on tests now

Hi there, sorry you're experiencing this. I'm still testing positive but all the advice was to call back only after 3 weeks if still testing positive.

I went back at 3 weeks, they did a scan and a blood test which is when they told me my HCG was dropping a lot which is positive.

Good luck, that drop in the first 24 hours is a great sign.

It's tough @Figtree11 I'm really struggling determining whats "me" vs what is "hormones". I guess it doesn't really matter ultimately? We feel how we feel and have to deal with where we are using whatever support we can get.

Maybe consider the call. It could be helpful and if not, you've only lost a few mins on a pointless call.

Thank you. Epu said to phone at 2 weeks, but I think another week at least will be fine. X

@Noideawhatshappening thank you, I appreciate your messages. Makes me feel less alone. I definitely will have a think about reaching out for some help xx Sent off another urine test to Sheffield this week, have you?

@McConkeysPlate have they said when you will get results back to confirm if molar? I had no idea with mine, it wasn’t mentioned at a scan. So came as a shock when I got a call from the hospital 4 weeks later

@Figtree11 i think the histology report should be back in a few more weeks. I just want this all over and done with now. Sorry you have gone through this c

@McConkeysPlate i know it’s so horrible waiting. At the time it feels like a lifetime. But looking back now, it’s been 7 weeks since I had surgery and it’s actually gone quite quickly x

@Figtree11 yes, they're doing both blood and urine at the min, I think because mine was a complete mole. Thankfully it seems to be heading in the right direction though - hoping this bleeding is a period and a really good sign!

@McConkeysPlate I'm sorry you're going through this, it's really difficult. I'm 4 weeks out since the surgical evacuation and I totally understand the feeling of being in limbo while you're waiting for your body to get on with it and for results to come back. If they said 2 weeks to you, it might be worth a call and even if they ask you to retest in another week, you've put your mind to rest a bit?