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.

Hi OP I hope hope you are coping ok I recently went though this. If you need any help or advice please message me.

I had this. Weekly blood tests until below a certain level - this can be quite quick or can take a bit longer. You'll be told your levels. It's hard emotionally and not very many people understand.
You can't try again for a baby until I think one cycle clear of the levels dropping off. I did have a successful pregnancy afterwards

@CuriousBogInTheNight Ive just been cleared thankfully but my periods have been very light/scant since my d&c in January. Did you notice anything different in your cycle?

Thank you all, how long did it take your hcg levels to go down and did you need any further treatment?
My 1st result 1 week after surgery way 3307 from 160200 the day before surgery. Next blood test is tomorrow

Hi @NphysT my HCG normalised 9 weeks after my surgery so not too long of a wait. Although some women’s levels fall faster. I didn’t require any treatment and my follow up was done via Charing Cross hospital. I know how devastating this is. Hope you’re coping ok, understandable if you’re feeling rubbish x

Thank you, hcg from this week is 378 so seems to be dropping quickly, hoping it carries on like this.

I feel like I can't deal with feelings until its all over and no one seems to understand. Friends seem to have moved on, making plans without me or talking so casually about wanting to get pregnant and ttc with no consideration. It feels very lonely being in this limbo phase

Hi, I had a molar pregnancy last year and a D&C. If you have any questions I'd be glad to answer! I'm so sorry you're going through this - it's quite rare and traumatic. I had a woman tell me that "it wasn't actually ever a baby so it's fine". My HCG returned back down to 0 about 2 weeks after surgery.

Hope you don't mind me also joining this one.

I've been diagnosed with a complete molar this week - first pregnancy. Had the surgery on Thursday and waiting for Sheffield to get in touch re: monitoring.

OP, I'm so sorry things are moving on so quickly around you, that sounds so tough. I haven't told anyone so not exactly the same but I understand the loneliness and the limbo feeling that we can't really start "moving on" with things.

I hope you're doing okay a few weeks later

I'm so sorry @blondebanana how insensitive can people be?! I hope you're doing okay

Hope you don’t mind me joining when the thread hasn’t been active in a couple of days.

Had a MMC end of April, with a EPRC 4 weeks ago. Had a call today saying it’s a partial molar. Now waiting for Sheffield to contact me. No idea how long that will take.

I had a MC in November which was at home so don’t know what caused that.

Feeling so down & worried. Had no bleeding in 2 weeks, and only a faint line on pregnancy test.

Also worried & feel stupid for having sex at the weekend without a negative test. I just got presumed I was following the same path as November, where I had a negative test after 5 weeks & everything being fine so was basing on that. And obviously they’ve warned me not to TTC now.

Feel like I either have really bad luck, or there is something wrong that I’ve had 2 MC now and no children

Hi @Figtree11 I've been there and now discharged from Charing Cross. If you need support feel free to message me. Don’t beat yourself up this is such a hard experience. The referral to Sheffield shouldn’t take too long but do follow up with both them and your local hospital to make such it gets pushed on. Faint line on pregnancy test is a really good sign your levels will be falling well. It was my first pregnancy and I’ve no children. Very upsetting.

Thanks @AnxiousPoster i appreciate the reply. How are you doing now? Were you being seen by Charing cross for long?

I’m on holiday for 10 days from next Wednesday so concerned I won’t be able to do anything about being in touch with them until after I’m back.
I took a photo of my pregnancy test on Friday & the one today and it has faded a lot so really hoping it’s a good sign, and that it doesn’t rise again. Feel like I’ve scared myself by googling too much

@Figtree11 no problem lots of people who had been through it before responded to me and helped a lot so I’m paying it forward.

it took 9 weeks post d&c for my HCG to normalise and then 4 weeks after that I was discharged from Charring Cross and told I could try again. Your pregnancy tests getting fainter is a great sign really. Also if you are anxious you can ask your local EPU to test your HCG while you’re awaiting the referral. This will give you a guide on where you’re at before the monitoring kicks in. You can also ring Sheffield before the referral is done and just ask for some support and talked through the next steps. Hope you have a lovely holiday. X

@AnxiousPoster thank you for sharing, I feel a bit less worried now. Everything I was reading online seemed as though this could be going on for months & months. So it’s good to know Charing Cross discharged you not too much longer after your hcg went down.
Im 4 weeks post Erpc now, and my last MC it took 5 weeks for a negative test so I’m hoping with this one it will continue to go down as well.
Did you have to do blood tests as well as urine tests?
Thank you for the advice 😊

@Figtree11 definitely it’s more common for levels to fall well especially for a partial mole. There’s a good Facebook group if you’re on that very supportive and lots of women to read stories and answer questions. It’s not for everyone and may be overwhelming but you should check it out.

Charing Cross took blood tests fortnightly and Sheffield do urine. X

@AnxiousPoster thank you so much, you’ve been a real help xx

Hi, just a little update from me:

My hcg has been going down quite quickly, last Mondays was 10.3 so hoping this Mondays will be below 5.

I also got genetic testing results back from the testing they did and it confirmed the partial molar and showed mosaic tetrasomy so they've recommended me and my husband get genetic testing done. Does anyone know whether the mosaic tetrasomy could be just because it's a molar pregnancy and not because of a genetic issue?

Sorry to hear that you are also going through this. This is also my 2nd mc now and no children, my 1st mc being I'm December and I completely understand how you're feeling. Feel free to message if you have any worries, just want to rant or anything x

Hi @NphysT im glad to hear your hcg is going down. Fingers crossed it won’t be long now.

I didn’t find out til 4 weeks after d&c that it was partial molar. Only found out through the testing. I haven’t heard of mosaic tetrasomy I’m afraid. Was this found in the same testing used to confirm the molar?

I’ve not yet heard from Sheffield so no idea what my hcg levels are. I keep doing pregnancy tests though and some days I think they look lighter than the day before but don’t know if my eyes are playing tricks on me

It was found with the genetic testing I had asked for on top of them testing for a molar pregnancy. Before my 1st mc we had known there was a 1 in 2 chance of baby having downs syndrome so they allowed for the genetic testing this time even though they normally wait till you've had 3 mc.

When was your referral done? I was told you hear back quite quick from then and they send through the post urine sample boxes for you to send back to them.

I would do pregnancy test once a week and compare from that, I know based on blood tests you need a minimum of a 10% decrease in hcg. Could you ask your epu for weekly hcg bloods till you hear from Sheffield to monitor your levels?

Sorry @Noideawhatshappening I seem to have missed your message. How are you feeling now? Are you having weekly hcg bloods while you wait to hear back from Sheffield?

I'm doing better than I was at the start although that was before finding the results of the genetic testing which is taking a little time to process.

Get professional genetic advice because my knowledge is anecdotal, however I know a brother and sister (not twins) with mosaic tetrasomy, they are older, in their 50's and live to together but independently with a support worker for an hour 3 x a week each. Lovely people, just got back from a cruise which they went on just the two of them. Mosaic means there's a lot of variation between individuals so this is purely anecdotal as they are the only people i know with this. One of my volunteers is a retired gp and he wasn't aware of inherited cases but with 2 siblings and an elder brother who died as a young child without diagnosis (they were diagnosed as adults) they are the subject of a medical paper, which I should add, they love the idea of (it's anonymous obviously)

Ahh I see, I wasn’t sure when they start looking at genetic testing. I hope your tests come back ok when you have them done.

I had the call from my local hospital on Wednesday, so I’m presuming they referred me to Sheffield then. I go on holiday on Thursday for 10 days so hoping I hear from them before I go. Think I will hold off contacting EPU about bloods just because of the holiday.

Yes you’re right I think doing a pregnancy test once a week sounds sensible. I’ve been doing one every day & it’s just stressing me out. It’s not helping me in any way by doing them so often

No problem.

I'm just 10 days out from the surgical evac so I haven't heard anything yet and my hospital were fairly hands off tbh - "you need to speak to the experts at Sheffield, they'll be in touch" approach.

I don't know anything about genetic testing but it must be very stressful for you. Can they offer you an appt to talk it through?

Hi @Noideawhatshappening im also waiting to hear from Sheffield. I got referred last Wednesday I think. I’m surprised they haven’t got in touch yet, I would have thought they’d be quite quick.
Its frustrating as just want to get the ball rolling