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Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

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Original poster

Partial Molar Pregnancy

37 replies

sadtoday21 · 16/03/2019 09:10

Hi everyone - some of you may know me from the other thread, first pregnancy missed miscarriage. Lots of supportive ladies on there - it's the best! My only reason for posting a separate query here is that I have a very specific, rare issue now and I need someone who has been through it to help me cope.

I received a letter yesterday saying I have a follow-up appointment on Wednesday to discuss pathology results following a D&C for my mmc in February (12 weeks, NHB at 9 weeks, 31 yrs old, first pregnancy ever). After reading everything online, it seems NHS only does this if the tissue tests positive for a complete or partial molar pregnancy. I saw the baby on the screen, so I think it will be a partial molar and I am absolutely, completely devastated because I know this means I will have to wait another six months to a year before ttc again. Never mind possible chemo if the hcg levels do not cooperate. I feel like I've lost everything in life recently and the "c" word scares me because I lost the baby on the one year anniversary of mum's death from breast cancer last year. So I am barely hanging on here.

If you have had a partial molar or know someone who has, can you please help save my sanity by telling me how it went? I had a BFN three weeks after the D&C (two weeks ago now), so surely my hcg levels cannot be that high right now?? No AF but body was trying to gear up for O when I got this gutting news, so suspect she is on her way too. How high can my levels be and do you think they will just monitor for a few months (maybe 3 instead of 6) and let me start ttc again early? I need some hope to make it through the day right now.

OP posts:

MrsSquiggler · 16/03/2019 09:27

Hi op, I'm so sorry to hear about your loss.

I had a partial molar last year which was picked up when I kept getting positive tests after a mmc. I just had to send samples off to Charing Cross in the post and they monitored me until my levels returned to normal. I was allowed to TTC again as soon as they had confirmed my HCG levels had returned to normal (ie equivalent levels to a negative pregnancy test, I think). I think the fact you've already had a bfn means you should be out of the danger zone already.

I worried about the risk of cancer as well - it is a scary word - but it's so rare, particularly with partial molar I think. And even in the worst case it's very treatable with nearly a 100% cure rate as I recall. But in any case, as I say if you're getting negative pregnancy tests I think you're out of the woods already.

I hope the appointment goes well

Original poster

sadtoday21 · 16/03/2019 09:31

Thank you @MrsSquiggler for your reply, it is the only thing getting me through today and I say that in all honesty. I'm so sorry for your loss and that you had to go through this too. I really do hope the BFN is a good sign - do you remember how many months they told you to wait before ttc again? I read that even if you have low hcg levels they wait a few months to confirm it is not going back up again. Thank you again for your kind words.

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MrsSquiggler · 16/03/2019 09:57

As far as I remember I was able to try again as soon as my results had returned to normal. Looking at the Charing Cross website I may have had to wait a month - it says "For partial hydatidiform mole patients ... follow up begins with serum and urine every two weeks until hCG levels are normal. This is followed by one confirmatory normal urine sample after 4 weeks ... it is advised that a further pregnancy is deferred until the end of the follow-up period"

It took around four months for my hcg levels to go down. I had the medical management for my miscarriage mid-June and then the all clear from Charing Cross to start trying again mid-October. I do wonder if my levels would have gone quicker if I'd had a D&C like you did rather than medical management.

I'd definitely recommend you have a look at the Charing Cross website if you have any questions - www.hmole-chorio.org.uk/patients_info.html

I'm now 11 weeks pregnant and all looking good this time fingers crossed. Don't give up - it will happen!

Original poster

sadtoday21 · 16/03/2019 10:14

@MrsSquiggler All I can say is thank you for this, thank you so much. You've given me a small shred of hope to hold on to and maybe that's enough to get through the weekend.

Wishing you the best of luck with your pregnancy.

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Original poster

sadtoday21 · 16/03/2019 10:16

Did you still have high hcg levels with a BFN? I thought hcg had to be below 25 or something to get a BFN.

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tuttifruitti · 16/03/2019 10:28

Hi sorry to hear this. I went through a molar pregnancy in 1993 and needed chemo and in patient treatment from Charing Cross Hospital. It was a difficult time but just wanted to reassure you that I now have two happy healthy sons in their twenties. Wishing you all the best.

MrsSquiggler · 16/03/2019 10:37

If you're getting negative pregnancy tests then your hcg levels are already low. I see the first response tests detect levels from 6 mIU/mL. I don't think Charing Cross needed to see it get to zero - just under 5(?) I think.

Only 0.5% of those with a partial mole need chemo and I really do think that if you are getting negative tests, you don't need to worry x

Talkwhilstyouwalk · 16/03/2019 15:07

So sorry for what you've been through.

Done some research on this as to cut a long story short my DH has a condition that makes us prone to them (his sperm is low on the protein required to activate the egg so they sometimes team up resulting in more than one sperm getting in). Whilst partial molars can in occasion be serious, the vast majority do not cause problems and they are a lot less likely to cause issues than complete molars. Agree that the fact you are getting negatives already is a very good sign.

Pretty sure I had one, though it was never confirmed by pathology (but they couldn't rule it out). My cycle returned to normal quickly and we started ttc again straight away. Good luck!!

Original poster

sadtoday21 · 16/03/2019 16:13

@Talkwhilstyouwalk thanks for your insight and I am sorry for your loss. When they thought you might have one, did you also get a letter from NHS just saying to come in for a follow-up appointment six weeks after the D&C? Just wondering if the pathology reports are ever inconclusive or say something else besides molar.

@MrsSquiggler thank you I think you are right and also if you have AF the levels should be low, although maybe it will still take a few weeks to drop completely.

@tuttifruiti thanks for sharing your story and for giving me some hope for the future, I really appreciate it!

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NewYoiker · 16/03/2019 17:28

Hello @sadtoday21 I had a complete molar pregnancy and a partial molar pregnancy in 2017 and 2018. I had to go to Sheffield for 2 d&cs and then I had methotrexate for 5 months but my hcg levels for the complete were over a million.

For both I had to give urine samples in the post (lovely) and then I was advised after the complete not to get pregnant for a while after I got a negative but I couldn't wait and then I got pregnant with a partial molar pregnancy but said it wasn't connected. Feel free to pm me if you want

Original poster

sadtoday21 · 17/03/2019 10:41

Thanks @NewYoiker for sharing your experience. I hope you have a happy ending now. Is there a risk of having another partial molar if you get pregnant too soon after? I only ask because they didn't tell me until six weeks after my d&c, so we had already started ttc again. I am probably not pregnant and all is fine, but worried nonetheless as it is a slight possibility.

For the partial molar, how long did you have to wait until ttc again? Did you have a BFN and AF and still have high hcg levels?

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NewYoiker · 17/03/2019 13:00

No I think I was just very unlucky!

No I didn't have a negative test for about 4 months with the partial and my hcg levels were around 100,000 at diagnosis and for the complete it took 10 months to get a negative test with 0 hcg and that was with chemotherapy so I think you're in a good position

Original poster

sadtoday21 · 17/03/2019 16:50

Really sorry to hear that and thanks for your support.

I have two questions, for anyone who has gone through mmc and/or partial molar and had their hcg levels monitored:
(1) what hcg level did you have after a BFN (is it under 25 definitely?)
(2) what hcg level did you have after AF (did it drop further, it it definitely zero at that time, or just low?)
(3) how long between the BFN and AF or conversely how many AFs did you have before you were all clear for the molar with 0 hcg?

Sorry for all the questions, just can't bear the waiting with all of this...

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NewYoiker · 17/03/2019 17:03

For me personally it was

0 for my period
4 for bfn but then I was sending off urine samples to Sheffield so I didn't do any at home and they wrote to me with the result

And then it was about a month after I had a 'you've had a what we would class as negative result' for my period to turn up.

ruddynorah · 17/03/2019 17:09

I had a partial 10 yes ago. Same as you I was asked to go in after a MMC. Mine went down without intervention within 6 months. They advised not to TTC for year but we did anyway. Then had extra early scans for that pregnancy. Everything was fine. DC is now 9.

Original poster

sadtoday21 · 17/03/2019 17:47

Thanks @NewYoiker so it sounds like after your first period, it took another month before they cleared you to ttc again? Just wondering as I believe my period will be due in two weeks, judging from O this weekend. I've never had hcg levels tested so I am dying to know how high they are and how long this whole partial molar process might take.

@ruddynorah thank you for your reply and sorry for your loss. Did NHS send you a letter a few weeks after the MMC just saying "come in for follow-up"? I'm guessing that is what the follow-up means - partial molar. Did you have really high hcg levels and how long after the MMC did it take for you to get a BFN? Thank you so much for your help, I really appreciate it!

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NewYoiker · 17/03/2019 17:49

No I was told after my period to wait a year to ttc both times the first time
I didn't, the second one I am.

Original poster

sadtoday21 · 17/03/2019 18:20

Thank you, I'm surprised you had to wait a year about the negative result. I thought now it was 3 months or something like that.

I'm really trying to stay positive about all of this but it's so hard...I'm so scared. I never thought this could happen to me and the mmc was already hard enough to go through.

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NewYoiker · 17/03/2019 19:10

My hcg levels were over 1 million for the complete and they suggested I wait a year because they were so high to begin with but I didn't and the next pregnancy I had was a partial so I do want to wait this time in case. Plus I've had chemo.

I'm sorry you've had a rough time. There are a couple of groups on Facebook o could give you details of that are really helpful? Plus if it is a molar you'll be referred to one of 3 hospitals that specialise in it in the uk, so you will be supported.

ruddynorah · 17/03/2019 20:33

Yes I got a letter from the miscarriage clinic asking me to go in for follow up after my ERPC. I googled a bit and I asked in MN and quickly figured out what was what before the appointment. I really can't remember what the level was, just that it came down itself, as tracked by my urine samples.

Original poster

sadtoday21 · 17/03/2019 22:40

Thanks very much, that is what I was afraid of. I nearly passed out when I got the letter - I was shaking so hard like a leaf all day and burst a blood vessel in my eye from the stress of it. At least now I will be prepared for Wednesday and know what to expect, hopefully shock will wear off in due course....

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Original poster

sadtoday21 · 18/03/2019 11:15

Does anyone know the answer to this: if your hcg levels drop to zero naturally by seven weeks, you only need one month of follow-up after that?

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Original poster

sadtoday21 · 20/03/2019 14:06

Confirmed partial molar today at the GP and first hcg results are 7.5. What do you ladies think about that? Is it ok? Will it be negative soon? How long do you think I will have to wait before ttc again? Would really welcome any thoughts or insight from those that have been down this road before. Thanks xxx!

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NewYoiker · 20/03/2019 14:33

stdc.group.shef.ac.uk/resources/patinf2017.pdf

This may be of some help- it's what I got from Sheffield. However your dr should have told you the plan of action?

It took me 6 months the first time to get to 7.5

And 2 the second time so I'd say you're in a great position.

The partial molar pregnancy follow up is a lot shorter- google seems to suggest charring cross do it for about 3 weeks and then request a blood test 4 weeks after 0.

I would imagine you'd be told not to ttc until that point as it can confuse the tests

Original poster

sadtoday21 · 20/03/2019 16:32

Thanks @NewYoiker I appreciate it. The doctor didn't know the plan exactly and I haven't spoken to the specialist at Charring X yet. She thought it could be 1-2 months follow-up, but couldn't say for sure. I guess that would end up being about 3 months since the D&C. Fingers crossed my next bloods are negative and not going up. Thanks again for your support and for the information!

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