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.

Freckles,
My only advice would be to ring Sheffield and ask them. Charing Cross have always been helpful when I've rung/emailed with questions and it seems the quickest way to find information! I've never been given urine results so I can't help I'm afraid!

Hi Freckles, sorry to hear you've had a molar pregnancy, but glad you've found this feed. I've found it really useful over the past few months. I agree with Lou definitely call Sheffield. I get my urine results back every fortnight, but like you said, it's usually in whole numbers so not sure what that means. Mine get tested at Ninewells Hospital in Dundee, the people there are super helpful so I'd imagine Sheffield will be too. Was it a complete or partial that you had? Let us know how you get on xx

I rang them back today, as it was late on when I got home and opened my letter. They said not to be to concerned yet and that I'll be having weekly testing for the time being. They said that's the way they process it so normal is 0.34 and under.

Sorry you find yourself here aswel, it's such a difficult thing to explain to people. Are your levels back at normal or are you still under testing? Hope everything is going well for you both xx

I know Freckles, it is a really weird thing to have to explain to people. And so rare! I've hardly met anyone who's heard of it before. I'm still being monitored. Missed the 8 week mark for my levels to be back down to zero by, so in the longer follow up period. Got my next test on Monday - mine is fortnightly - so should have results by next Wed/Thurs. it's always such a waiting game!

Hey! How are you getting on with your results Freckles and Lou? I got mine today - unfortunately my blood is only down 2 on last time, so sitting at 286. Urine is at 93 although can't compare that to last time as I messed it up. Feeling pretty disheartened... hate this waiting game...

Suzy, sorry you're having a worrying time of it . It's horrible. Hopefully next one will be a clear drop.
Please feel free to ignore what I say next... But I had to try a few things in order to get my levels down. There is NO evidence that any of them have an impact but I felt better to be trying something/anything. I researched anything that would regulate periods/bring on late period etc and tried the things that seemed safest! So, after I found out the complete molar was confirmed I started taking:
Raspberry leaf tablets
Evening primrose oil
Vitamin C (quite high amounts)
Agnus castus
I also felt better to be making sure I drank lots of water and tried to eat healthily.
Like I say, I have no idea if any made an difference but I didn't think it could do much harm and I felt better to be being proactive I'm a control freak clearly

Last week my results were 10. And my cycle started again!

Freckles, I hope you're doing okay.

Thanks Lou!! I'm going to buy ALL those tablets!! I have been eating super healthy over the last month as felt I needed to make a positive change in my life. I drink a lot of water at work but I'm terrible at remembering to do it when I'm away from work so probably need to change that. Just hate the waiting game! That's fantastic that you're back to normal!! You must feel so relieved! Xx

A while back I asked about travel insurance on this thread but no one was able to give me advice. In case at any point anyone else needs to know about this, I thought I'd do an update. So it turns out it's very easy and cheap to get travel insurance if you're just being monitored following a molar pregnancy. You have to list it as choriocarcinoma then state if your hcg levels have been normal for 12 months or not. I put in that they weren't normal, answered a few more questions, and got offered insurance at just a couple of pounds more than it would have been had I had no medical conditions. The only issue is if you're undergoing treatment then all the sites I looked at wouldn't cover you. Going to Lisbon on Sunday so just glad to have the insurance sorted! Have been putting it off in case it was a problem so it's a relief that it's not been hope everyone has a good weekend!!! Ready for a few of these after this week!! Xx

Hello :-)

I've just had an early scan at 6 weeks and have a possible partial molar pregnancy (or possibly all ok with a previous bleed causing the irregular gestational sac). I've been told to come back in 2 weeks for another scan to see how things are progressing, but also warned that I may miscarry in the intervening time.

I've obviously spent most of this afternoon reading up on the subject and I'm finding it really tricky to know what to feel now... Might all be ok. But might also not be (and all that this brings).

Any advise on how the hell I am going to get through the next 2 weeks would be very welcome!!

Thank you

Hi Enigma, really sorry to hear that. Fingers crossed all will be okay. Waiting for a second scan is an absolute nightmare. I had my first scan on Christmas Eve then had to wait until Jan 7th for a second one. I don't think there's much you can do except try and keep busy with other things...easier said than done! If it is a partial mole then it's good they've picked it up so early. I didn't end up having a D&C until about 11 weeks which I think is one reason why my hormones are taking a while to drop (I also had a complete mole which takes longer to get back to normal). I'll keep everything crossed that it's okay though! Xxx Lou - I've just gone and spent a fortune in Holland & Barrett - fingers crossed it works! Thanks for the advice! Xx

Hi suzyhart - thanks for your reply, you're right, it's just the waiting that's so hard! Poor you having to wait over Christmas, that must have been hell.

Saw my GP today who managed to balance out the possibilities a bit more, so I feel a bit more optimistic than I did yesterday. And yes, keeping busy is definitely the answer. Fingers crossed....

Enigma, I have my fingers crossed for you. I hope that all turns out well; the waiting is horrible. Such a worrying and confusing time.
I can't offer much advice apart from keep mind busy and rest in the hope that everything is okay.

Suzy, it is expensive but worth a try!
How is everything with you? Have you had any more results?

After the 10 and my period coming back I was certain this week would be the last blood test. I even stopped taking the tablets as I felt they were making my skin worse (always been quite bad for spots) and I was hoping I was back to normal.
Anyway, Sod's law, yesterday I found out my hcg has gone up again to 17! I'm so disappointed. Felt like we could finally start moving forwards and now it's another step back and more waiting. Hospital are okay to wait for next test because levels are low but I am worried what this might mean.
Anyone else experienced a rise towards the end? Should I be worried?

Aww sorry to hear that Lou!! This whole thing is such a nightmare. Because you're so low I'm sure it will all be okay - although it's easy for me to say that. Fingers crossed for your next test results - when will you get those? Will you go onto monthly urine tests after that? Xx

Hi Suzy,
Had test this morning so will get results on Thurs/Fri...
If it's normal (less than 5) then will be monthly urine. Fingers crossed.
Where are you up to? Hope it's all ok.

How did you get on Lou? I got my results on Wednesday and it's not great, bloods are down to 245 from 286, however they've pretty much plateaued over the past 6 weeks. So, because of this Ninewells organised for me to get a scan at my local hospital yesterday and they can see a little bit of retained tissue. I'm going in for another D&C on Wednesday so fingers crossed this helps bring my levels down. Really hope it works!!

Mine dropped back to 10, so still not there yet!
I've got my fingers crossed for you.

Just wanted to pop in to sincerely wish everyone on this thread well. I had a partial molar about 8yrs ago and now have a 6yr old (&10 yr old as already had a DD). At the time things seemed v bleak. There have been some real ups and downs since my molar preg, but I will never forget that time of vulnerability and wishing I'd have a crystal ball to know what would happen next. I have a friend who had a molar and a 'regular' miscarriage. She now has two DCs. Neither of us experienced long term health problems so it can be ok once testing phase is all done. Best wishes for low HCG levels

Just wanted to share with some folks who would understand...I found out I was pregnant last year on Christmas eve. But then at my 8 week scan, my doc couldn't see anything. So she sent me to have another scan with a stronger machine. They found a fetal pole, but there was no heartbeat. I knew my dates were spot on, so I knew this wasn't good. I was sent back a week later for another scan. The results were the same. I was diagnosed with a missed miscarriage. I had a little spotting, but nothing major. My doc said I could wait for nature to take its course, take the misoprostol pills, or have a D&C. She didn't recommend the D&C because she didn't think it was necessary. I opted for the pills because my family was moving in six weeks, and I wanted this awfulness over and done with. The pills didn't work. The doc had prescribed more than she thought I would ever need, and I took all of them. There was no effect. She prescribed more, and had me insert them vaginally. This caused a little bleeding. But not enough. The doc mentioned that the only other patient she ever had who took the pills and had them not work had a molar pregnancy, but that's not what she saw on the scan. Howecer, we still decided to go ahead with the D&C. She sent the tissue for analysis and it showed that the baby had triploidy, and was a partial mole. That was in February. I had been getting blood drawn once every couple weeks since then to make sure my hcg levels were going down. And they were. Until we moved. Now they're going back up. I had blood drawn here in my new town on the opposite side of the country, and my new doc wanted to see me right away. She did another scan and immediately saw a mole. So now I have to have another D&C, and I don't know when I will be allowed to try and conceive again. I am an emotional wreck. And I have a two-year-old son. So I'm not sure how this whole mess is going to work out logistically either. I've been in my new home less than three weeks. I know no one very well. I'm going to have to have someone pick me up from the hospital and someone to watch my kiddo. And my husband travels frequently for work so I'm a mess. I'm just a mess. I'm very grateful that I found this board. If for no other reason, it was therapeutic to write all this out. If you're still reading, I thank you.

Hi DuLc, that sounds like an awful experience. Poor you. When you had your scan after you hormone levels went up, did the doctor think it was some of the original molar pregnancy tissue left behind or a new mole? I'm guessing retained tissue as a repeat mole is super super rare. I hope your second D&C is all that's needed to get your levels down. I had a complete molar pregnancy confirmed in January and am still on the rocky road to recovery - both physically and mentally! I had a second D&C on Wednesday as my hormone levels had plateaued. Really hoping it does the trick. Keep posting and let me know how your getting on. It must be pretty tough moving across the country in the middle of dealing with something like this. Hope you're doing okay xx

Hi LilacPink, it's always so good to hear stories from people who have made it out the other side - I'm about 5 1/2 months into my 'molar experience' and feel like I can't imagine being back to normal and able to TTC again. As I've mentioned in my post below my hormone levels are still acting up, so I'm keeping everything crossed that I don't need treatment, but to be honest I I have it in my head that I'm going to be one of the unlucky ones who does. For me a big part of not wanting treatment is that I'll be 33 next week (by no means old, but still not that young!) and don't have any kids yet so worried about how long it will take before we can try again if I do need treatment. What was your journey like? I just keep thinking If only we hadn't tried that month we wouldn't be in this situation! But that's not really that helpful!! Xx

Hi Suzy I thought it was my fault as I'd been so desperate for a baby, but what was my DH (now STBXH) wasn't sure. I think you can always doubt yourself when things go wrong. My molar was fairly straightforward, ERPC at around 12 weeks after I'd had weird bleeding and glue like discharge (sorry if TMI) month of blood tests, 5 of urine. First three months I would have ripped world apart and jumped through into another parallel universe to have my baby back. Final three months I was desperate, but a bit more logical and sometimes still felt rage. We went ahead and tried again and I have two lovely DCs. Shame about the STBXH but that's another story.

PS I have several friends who had DCs in 40s. I know it doesn't help right now, but you have a decade to keep trying in so not really old

Hi Suzy, Thanks for the sympathy. I'm sorry to hear that you're still going through the same thing! I'm not sure if the doc thought it was a recurrence or a new mole. I'm not sure what the difference would be. But I'll ask next time I see her. If you're about 5 months in, then we prob would've been about the same due date if things had turned out differently. Odd thought. On another random note: I have had to answer over and over to random medical personnel who don't know me: "Are you pregnant?" I think there needs to be a check box for "other." So hard to explain. On April Fool's Day it also occurred to me that if someone wanted to pull the awful joke of pretending to be pregnant that I could pee on a stick and make it pretty convincing for them. Haha. Sorry. Morbid humor. Please let me know how you're doing. This board is very helpful.

Hi ladies, glad I found this thread. I've been hunting around to find some support but all the chat/support threads I could find on molar pgs were so old. How are you all doing?
I'm just looking to find some people going through the same thing.
I lost identicsl twins at 7&9 weeks And had an erpc on 13 May. Since found out it was also a molar pg. The histology report says complete molar but not sure how that can be if there were two babies too. Another weird one is that this was our only frozen embryo from 2010, so massively upsetting to think it was sitting there for such a long time but didn't really have a chance. I do have 2 DSs, so am very fortunate but this is all still quite tough to deal with. Ive got bloods today to give me an hcg benchmark & scan tmrw to see if all's empty. Then just waiting for my Charing X referral to come through.
It's nice (unfortunately) to find some people in similar situations as I've posted elsewhere and had no response.
Zeka x

Hi Zeka, I am so sorry to hear about all that you're going through. That must be heartwrenching. I hope and pray for you... low numbers and a clear scan. I am also confused about the difference between partial/complete. Same as you, I didn't know my miscarriage was molar until after the erpc. Nothing showed up on the scan. So very confusing. Please know though that you're not alone. How old are yours DSs? I have one as well. He is two. Please let me know how things go. I have my 2nd D&C (I mean erpc...sorry yankee terms) tomorrow. I'll be thinking of y'all as well.