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Partial molar pregnancy
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MilkyWay123 · 01/04/2021 09:32

Hello ladies - I posted this in the infertility thread last night but thinking now that this is probably more appropriate so apologies for double posting.

I had a missed miscarriage recently that was a suspected partial mole and this has now been confirmed by histology. I'm being referred to Charring Cross for monitoring and was wondering if others on here have had a similar experience? How long did it take for your HCG levels to drop and to get the all clear to try to get pregnant again? I'm a bit horrified at the prospect of having to maybe wait for up to a year.

This is also my third missed miscarriage although I have had a child before this one. From what I've read molar and partial molar pregnancies are completely random. Is this just bad luck? Or something I should be thinking about in the context of the other miscarriages?

Any insights gratefully received!

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MilkyWay123 · 06/04/2021 16:51

Just a bump in case anyone has any experience of this...

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Meg32 · 06/04/2021 20:44

Hi I’m just in the process of waiting for the results to come back testing for a possible molar pregnancy I had surgery last week the wait is awful. How r u?

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MilkyWay123 · 06/04/2021 21:08

Hi @Meg32, thanks for replying. We seem to be in quite an exclusive club - one I'd prefer not to be in! I hope your tests come back negative for a molar. It's just another level of worry on top of the miscarriage as well isn't it? I'm ok, I called Charing Cross today and spoke to a really nice and helpful lady who said that they had received my referral and that I would be hearing from them by post in the next few days. I hope you're doing ok and I'm sorry about your miscarriage. Was this your first pregnancy? Take care.

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Meg32 · 07/04/2021 07:45

It’s nice to have ppl to talk to, im just worried all the time, I hope so too when they were telling me what they saw I went into like panic mode but they were really good, hope I don’t have to wait to long. I had my son coming up two years ago, I had a miscarriage November last year and this would be my second miscarriage

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MilkyWay123 · 07/04/2021 19:19

I'm sorry to hear that @Meg32. I had two miscarriages before I had my son and this is my third. I had obviously hoped that I wouldn't have any more and that things would be easier trying this time around. The only comfort that I'm trying to take from the partial molar is that they are completely random and it doesn't necessarily mean that there is a problem combined with the two miscarriages I had before. If that makes sense. It's pretty cold comfort though and I really hope my HCG levels drop quickly. I hope your results come back soon, mine only took a week or so.

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Meg32 · 07/04/2021 21:55

I’m gunna have a break from trying for a little while give myself time try and take it as it comes. I hope I don’t have to wait long too. I wish they explained all this in school

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Pesimistic · 08/04/2021 08:45

Molar pregnancies are completely random they happen when there is no dna in the egg or in a partial mole its when the egg is fertilised by 2 sperm, so you have no extra risk of this happening again than anyone else, hope that helps.

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MilkyWay123 · 08/04/2021 20:46

Thanks for replying @Pesimistic. That's the only silver lining that I'm taking from this, that it doesn't suggest that there is some underlying reason that I've had my miscarriages.

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00solsen00 · 10/04/2021 08:48

Hi, I was diagnosed with a missed miscarriage on 23rd Feb and it was confirmed as a partial molar about 3 weeks ago. I'm under Charing cross now and have to send my second set of samples off on Monday.
They said that once my levels are normal they will follow it up with a urine sample after 4 weeks and hopefully discharge me.

I have had a miscarriage before but it ended on its own without any intervention so I am wondering whether it was a partial molar as well. From what I understand, it's 1 in 600 chance of getting one the first time but for a 2nd it's 1 in 100 - still quite low odds though. I don't understand why, if it is random, you are more likely to have it again, but maybe they haven't found the reason why yet?

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MilkyWay123 · 10/04/2021 10:15

Hi @00solsen00 thanks for replying and I'm really sorry to hear about your miscarriages. It's hard and the molar situation on top of it is just another thing to worry about. It's helpful to hear from other people who are at a similar stage with this. Do you have any idea what the "average" length of time is for hcg levels to reach normal with a partial molar? I received my first kit from Charing Cross last week so will send my first samples off on Monday.

I have seen those odds and I was planning to ask Charing Cross whether they were the same for complete and partial molars. I could almost see why your risk might increase for a second complete molar - maybe because for some reason you have more eggs that don't have any genetic material? But is it less likely that you will get two sperm fertilising an egg in such a way as to result in a partial molar twice? Obviously this is a completely unscientific reasoning and I really have no idea what I'm talking about but I've just been wondering if that might be the case to make myself feel better!

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00solsen00 · 10/04/2021 17:04

I have no idea what the average hcg levels are and there is nothing out there to say what it is! To be honest, when you look at the normal values for hcg in pregnancy the numbers really vary from smallest to largest so its probably the same for a partial molar as well.

My levels so far, I was 87 on 13th march (before PMP was diagnosed) - they told me on that day that they were low and therefore unlikely to be molar.
Levels were then checked on 23rd march after PMP diagnosis - they were 25 and was referred to charing cross.
charing cross wanted their own samples, so was checked again on the 28th March and they were 11 and urine was 26. The advised that they want the blood hug to be under 5 and the urine under 25 and said my levels were low and good for a first reading for them.

I joined a Facebook group for partial molar pregnancies which is really good, there was a girl on there who said that her levels went down to 15 and then start doing back up and she needed further treatment but I guess thats why they keep an eye on us until our levels are low for a while.

Some people on the group were only monitored for 6 weeks and some longer so I think it just varies from person to person.

With regards to it happening again, I did read somewhere (but then couldn't find any more info on it) that it might be down to sperm lacking the protein which seals the egg - this could be why it could re-occur if its a protein issue? I'm not sure if it is actually true and it seems that there is not much research out there on molar pregnancies.

The issue I have with this whole thing is the lack of information and also the fact that it varies so much from person to person so you can't even plan / get to terms with how long you will be needing monitoring for!

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MilkyWay123 · 10/04/2021 20:25

Thanks for sharing your info @00solsen00. Like you say there is such a lack of information and I've been desperate to get a sense of what other women's experience has been. Your levels do sound really low though which is great. I know there is always a risk of them going back up but hopefully that is quite unusual and you sound like you're in a really good position. My levels weren't checked by my hospital so I don't know where mine are at until I send off the first samples to Charing Cross. I did a pregnancy test on Thursday though which is two weeks since my ERPC and it was still a really strong positive so I imagine my levels are quite high. Can I ask if you were very sick during your pregnancy? I was, so again I think my levels must need to drop from a pretty high starting point.

Now that you say it I think I remember seeing something about sperm protein issues in relation to PMP. I think it was just one comment on an old thread on here where somebody mentioned that they were more susceptible to them because of that. I'm finding it quite difficult to deal with how little is known about it as well, which seems to be quite typical for so many women's health issues. I just feel in a complete state of limbo, wondering if there is anything I can do to make things happen faster and feeling stressed about all the time I feel like we're losing.

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MilkyWay123 · 10/04/2021 20:42

If I join the facebook group do you know if it will show up on my feed? I see that it's closed but not sure what that means...

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00solsen00 · 10/04/2021 20:45

@MilkyWay123 I felt so sick and my boobs we so sore I was certain that I was having twins at least! I thought it was a really good sign as some friends that I know had missed miscarriages lost all of their symptoms but I had a feeling something wasn't quite right towards the time I went for my scan.

There is literally nothing you can do at the moment to get the levels lower faster, they just come down at their own speed and it's so frustrating! I've decided to have a break for a few months, I work for the NHS so decided to get my covid vaccine so will have to wait at least 3 months because of that anyway. Problem is, the only thing that will make this all better is to get pregnant 😬.

There are so many women who have a baby after a partial molar though so there is lots of hope! Just with all the hormones and the stress it does feel a bit hopeless.

I got pregnant quite quickly after my last miscarriage and have a beautiful nearly 3 year old now and I always think that she wouldn't be here if I hadn't had the miscarriage before

Sending you a virtual hug!

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00solsen00 · 10/04/2021 20:46

@MilkyWay123 I'm just going to check with the Facebook group thing, I don't think it shows but not 100,% sure

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00solsen00 · 10/04/2021 20:56

I've check via my husband's Facebook and I can't see from that I'm part of that group so it should be fine. It's called partial molar pregnancy and has 1.4k members, definitely worth joining!

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MilkyWay123 · 10/04/2021 21:15

Thank you! My husband is a bit more social media savvy than me and he also thinks it won't show up.

You sound like you have a really good attitude about things. I had my son after my first two miscarriages and we always say the same thing - we wouldn't have had him if the miscarriages hadn't happened. Getting your vaccine while your levels are falling is also such a good use of the time. It would be great to hear how things progress for you and when you're released from monitoring. Take care.xx

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00solsen00 · 10/04/2021 21:29

@MilkyWay123 I have good days and bad days with it all, but I realised there was nothing I could do about it / nothing I did to cause it. I feel a lot better about it now than I did 3 weeks ago but still feel emotional about it now, especially as no one I know had ever heard of it before!

Just going back to what you said about the pregnancy test, mine was still showing quite a dark line 2 weeks after my surgery, they are so sensitive that they will show a line for anything over 5 hcg so that fact that yours was dark might not mean that your levels are very high?

I hope it all goes smoothly now for you, Charing cross seem really good (and they have lots of information on their website too - worth a look if you haven't already) xx

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MilkyWay123 · 11/04/2021 20:22

Thanks @00solsen00, that's reassuring to know about the test. I think it was marginally lighter (but still v.strong!) than the one I did after a week so fingers crossed it's falling.xx

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Gustavo21 · 13/04/2021 20:35

Hi @MilkyWay123. I’ve just stumbled on your thread. I was also diagnosed with a partial mole about 5 weeks ago and I’m currently under Charing Cross. I have been feeling anxious, lonely, frustrated and just baffled by it all. I have actually come on my period today (I hope it’s that!) which has brought everything back but hopefully it means my levels have dropped. I’m currently waiting for my first set of results. I guess I don’t have much to say to make your situation better other than it’s nice to speak to someone that actually understands how it feels and I know how lonely and frustrating it is. I really hope you get it all sorted as soon as possible and I do believe there will be hope for us :) x

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MilkyWay123 · 14/04/2021 10:02

Hi @Gustavo21, thanks so much for replying. It's nice to know that there are a few of us out there going through this. Not that I would wish it on more women but I do feel a bit less alone to hear from people at a similar stage to me. I feel much the same as you. A lot of the time I'm kind of at peace with the situation and say to myself that I just need to keep my head down and power through the next however many months until things (hopefully) sort themselves out. But then I find myself lying awake at night or staring off into space during the day brooding on things and being pissed off that I had a miscarriage AND now have all of this additional partial molar business to deal with.

I'm waiting for my first results too. I did my blood test at my local hospital early on Monday morning so might try and call Charing Cross for the results tomorrow. I'm not really sure how quickly my bloods will have been sent on by my hospital or what the turnaround times are. That's really good news about your period - I definitely think that must mean that your levels have dropped. From my endless scouring of every thread or article about this on the internet I think that a lot of women also find that after they get their period their levels drop again - it seems to help to get the hcg out of your body.

It would be great to keep in touch while you're being monitored and to hear how things go for you. It's nice to have some company in this rubbish situation!

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Gustavo21 · 14/04/2021 21:26

@MilkyWay123 I completely understand, it’s such a lonely feeling so it is comforting to speak to others that are going through it. I also think it’s completely normal to be feeling the way you do! The next few months will be very up and down for us and we just need to look after ourselves as much as we can. I’m not even sure I have properly processed the not having a baby part yet as I have been mainly occupied by the molar pregnancy part!

I’ve read (also from scouring the internet) that results take around a week so hopefully you will have your results soon! And I really hope they bring you some good news. How are you feeling physically? I’m praying for the same about my period but I’m just trying not to get my hopes up just yet!

Yes would love to stay in touch throughout this! I’m wishing you all the best for your results soon!! X

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00solsen00 · 14/04/2021 21:58

@MilkyWay123 - I email them for my results (email in the booklet they send out) my bloods were done this Monday and they had the results today so definitely call them tomorrow 🙂

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MilkyWay123 · 15/04/2021 11:52

Thanks @00solsen00! I emailed this morning and they came back to me to say that they would be available this afternoon which is great. I also did another pregnancy test this morning and I still have a positive result but it is much lighter than last week. So I'm taking that as meaning that my levels must be falling a bit which is a relief. I hope that your levels dropped again with this set of results.xx

I'm feel quite good physically @Gustavo21. I was really miserably sick while I was pregnant and could only eat rubbish which made me feel even worse. So I was quite exhausted by that. The past three weeks I've just been trying to eat really well and get back to doing some exercise which I think has made me feel ok. So definitely think you're right about trying to look after ourselves! I was still spotting following the ERPC until a couple of days ago which was really annoying. I just couldn't feel like I was back to myself while that was still going on, so I'm really pleased that has stopped. How are you feeling? Had you been sick during your pregnancy? If you don't mind me asking, was this your first pregnancy? I know what you mean about not having processed the not having a baby part - I definitely think that the PMP has masked or overshadowed how I would have felt about the miscarriage.

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Gustavo21 · 15/04/2021 12:52

@MilkyWay123 glad you are feeling better physically! Exercise definitely helps especially after slobbing about in the weeks after finding out and during the pregnancy, so you don’t really feel your best self at all. I have been doing the same! That’s great the spotting has stopped, I think mine went on for about a week and a half after and then I ended up in a&e one night as it was so heavy it (tmi) was falling out onto the floor when I went to the toilet! But they scanned me again and said it was just the final products coming out. So I think that’s a good sign that we have stopped bleeding now?! I hope your results today bring you some better news.

We don’t have any children yet. This is my second miscarriage, I had another one in November very early on (about 5/6 weeks) which happened at home. The PMP is definitely much worse! It’s just the unknowing and also not being able to try again, it’s really tough. I’m so sorry to hear about your MMs too, life is just so unfair and cruel! I’m hoping by the time they give us the all clear enough time will have passed that we will have processed the baby part and will be ready to try again but the thought of it at the moment makes me very anxious!

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