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.

I'm sorry to hear that hels it's exhausting isn't it? I found the more I rested the lighter the bleeding, fingers crossed for results xx

Hi, blood was 862 which the nurse seemed to think was not bad. Just need to find out which way it's headed in 10 days time ...

Any news from Sheffield Pinky?

Fx for a big drop hels hope you are feeling ok

pinky hope your doing ok

Thanks, yes felt okay for the past two days which is good. Still get very tired, but it's manageable. Bleeding lessened hugely today - hope it stays that way. Thanks so much for checking up xx

hi ladies, sorry I've not updated sooner, it's been a busy week! :-) i got my first lot of urine tubes two days after i last posted and sent them off on Tuesday. i got another letter from Sheffield saying they'd recieved my referral and a leaflet on mp and that's about it really. my hpt's are getting feint now, really feint which is good. it's five weeks and a day since mc so it seems to have taken longer than i thought it would but it's not known what my levels were to start with as nobody checked so maybe they were high? that's why it's talking a while for them to drop.xx
does anybody know if you get your results in numbers with a urine sample (as in do thry tell u what number your levels are at from the urine sample) or is it only when you have a blood test they can tell u the exact levels? I'm going to ring monday for the results.
how is everybody else? hope you're all well xxx

Hi pinky I got my my level results in the exact number, fx for a big drop! hope you are keeping well

hels how are you feeling?

Hi all last year back in June me and my partner suffered from what we suspected as a miscarriage but the news turned out to be something a lot worse this was a partial molar pregnancy now we had never heard of this complication in pregnancy before and are still confused as to when things will get better (confused)

Hijodie have you been registered for follow up? I hadn't heard of mp before I joined mumsnet and even then I thought it wouldn't happen to me, it's such a shock isn't it?

Hi all
I had a mc in November last year and it drained me emotionally. I was 12 weeks and due to tell our daughter she had a little brother or sister on the way. Went back to work too soon but tried to get on with life. This proved difficult as I found out 2 women at work we're pregnant and due the same time I was. They're both finishing work now to go on mat leave.
Last week I found out I was pg and today I went for an early scan. I wanted some reassurance that everything is ok with our baby but it's too early. The scan showed a sac and yolk but no heart beat but they also noticed done blobs and they mentioned the term molar pregnancy. I've got to go back for another scan in a weeks time. I'm so so scared.

himrselizabethtaylor the wait is awful, did they give you any information on mp?

Hi everyone, I have found this thread really comforting over the last while, I have been reading others stories but I wasn't quite ready to say hi until now. I found out at my 12wk scan I had had a missed miscarriage, I found it really hard to deal with and had to wait 11 days for the erpc. It took me almost a month but I was finally starting to feel a bit more like 'me' and then last Saturday I got a letter out of the blue asking me to go for an appointment with the consultant at the hospital. I was told not to expect a follow up appointment so I did some searching on mn and learnt about molar pregnancies, I also did a pregnancy test on Sunday and it was still showing as pregnant, it's been 5wks today sice the procedure. So when I went on Wednesday I was already a bit prepared that was what they would tell me. I was right. A partial molar, I am ok and my rational brain is staying it will be ok. But... There is still part of me which is worried I have cancer. I have a little girl and when I was pregnant with her I had really severe eczema and fainting. For the last 10days or so I have developed a rash and felt really faint. I know this is probably stress related but there is this little voice saying it's something more suspicious. How long did it take for all of your levels to back to normal? Also will charing cross write to me and the GP? Are you doing your own pregnancy tests at home too?

Hi oakwoodmummy I'm so sorry, I felt exactly the same way! lurching between it will all be fine to omg I'm going to get cancer! I tested a few times but it really didn't help and also when follow up hospital started testing me and I could see the levels going down I felt much better. I was followed up at nine wells in Dundee and they wrote to me and my gp. My levels took a while to go down but they stayed down

purple I am sorry you have had to go through this too but glad you are down to zero now. I agree I did another test myself this week but I don't think I will do any more I think it could become a but of an obsession and probably not doing me any good. Does anyone know once the levels go to zero is there a chance they could go up again? Also is it ok for me to go back on the pill while I have to wait till I get the all clear?

I was told it's very unusual for levels to rise after they had dropped to zero, I was told definitely no hormonal contraception! After my levels had dropped to zero my consultant then said I could go on the pill but it wasn't for a while

Hello, long time no post ... I think the current thinking is that hormone pills are okay but best check ...

Rather strange couple of days. I've had a month with no bleeding and hormones dropped from 862 a month ago to 185 two weeks ago then out of the blue, really heavy bleeding these past two days. Hormone test today at the hospital says 132 which looks although less is a much slower drop than before. What does it all mean? Anyone had anything similar ??

Thanks!

Hi everyone. This is my first time posting on one if these sites although I've read the entire thread through. I am so grateful to have found this forum as I don't have anywhere else to turn and I'm feeling very shocked and upset by all of this. Hearing other people's stories, advice and information is really helping. So thank you. I was told I'd had a mmc (blighted ovum) at the beginning of March. They wanted to be sure there was no further development so I had to wait until the end of March for my ERPC. 7 weeks later I received a call out of the blue to say I'd had a complete molar and I couldn't ttc for 12 months (I later found this not to be true after speaking with Charing Cross). The way the news was delivered by a Dr at my local hospital was insensitive and incorrect to say the least but that's another story. I was registered with Charing Cross and am currently waiting for my first blood test this morning, 8 weeks after ERPC. Terrified I won't be negative in time for the short follow up. I actually had private bloods done at 5 weeks and 5 weeks 3 days post ERPC (before I found out about the molar) and they were 46.2 then dropped to 39.3. A week after that I had a very normal period. So I'm hopeful my numbers are low. Only now in paranoid I'm having preg symptoms and my numbers will have gone up meaning I'll need chemo. Does anyone else worry they're having symptoms of an hcg rise? I can't even believe I'm typing this. I can just about handle everything else but chemo and an even longer wait to TTC? I think that would finally be what breaks me. This whole thing is sending me under a bit. It's only been a little over a week and I'm sure once I get to negative (hopefully without intervention) and stay there I'll feel better. Feel a bit disheartened as I did a preg test on Sunday and it was still positive although really faint and took ages to show - wasn't till I'd discarded it then went back to look (crazy I know) that I saw the v v faint second line. Trying to convince myself it doesn't mean hcg is high as it was a first response which are super sensitive and detects 8ml/u (or whatever the measure is) in 97% of people. Argh. This is so scary. My info from charing cross says negative is 0-4 in blood and 0-24 in urine - does anyone know what that means? Does a higher urine reading translate to a lower blood one? Confused. I know I should feel positive as we even saw a private specialist who said as I've had no bleeding in between and numbers are low that he's very optimistic but it's just such a worrying time. I'm in awe of all you ladies who are coping with this, especially the ones going through chemo. I hope we all get the babies we deserve soon. I'm finding this all even harder as five close friends are due when I would have been and the pain of that is almost too much to bear. Every few days seems to bring a new pregnancy announcement. Even harder knowing we can't even ttc. I keep wondering why did it work out for them and not me? Anyone else struggle with this? I don't want to be jealous and bitter but its so hard. How do others manage this? I was reassured to read Prof Seckl at CHX said the 6 month wait is a standard thing but that most people ignore him and try earlier anyway! Thanks for that info. I have had some perhaps foolish thoughts about ttc before completing follow up if I have a few negatives in a row. I know that might sound crazy to some (??) but I honestly think the stress of putting it off is worse than the very small risk of anything recurring after reaching zero. I've found lots of v good journal articles on risk of recurrence if anyone wants to read them, I'll post the links.

Sorry for the moan. Really struggling. Thanks for listening. I hope one day I can support someone else through this.

Hels29- I've heard once your numbers reach double digits they can really slow and I guess you're not far off that so perhaps that's what's happening. If the number drops every 7-10 days I guess the last bit would be quite a slow drop. That's why I don't think I'll hit negative in 8 weeks even being 39 at less than 5.5 weeks.

Good luck to everyone. Thinking of you all xx

Hi Kitty, sorry to hear about everything you're going through, it's tough when it feels like everyone else is cheerfully having healthy babies with no effort. I've been totally put off things like facebook as a result.
My urine figures have always been higher than my blood. Charing x say that urine is far more variable (depending on what you've eaten etc) and the blood is the thing to focus on.
It sounds as though you're actually doing really well and everything is moving in the right direction, however frustratingly slow it all is. Will you get your results on Monday? Fingers crossed xx

Hi Hels,

Thanks so much for replying. It really helps to know in not the only one going through this. I've been off Facebook for a while too now for that reason. Thanks for the info about blood/urine levels. It makes sense that blood would be more reliable. I think I might have to wait till Tuesday or Wednesdsy for results because of the bank holiday. Fingers crossed they've dropped or better yet - negative! (Doubt it). What's the next step for you? Are you due another blood test soon? Hope the bleeding has settled down.

Hope everyone else is doing ok xx

Hi Kitty,
Thanks for asking, no still bleeding though it's less if I don't move (!). I'm not due another text for 10 days or so but have to call Charing x tomorrow to let them know if I'm any better.

Hope you're feeling all right so you can enjoy the bank holiday. I know what you mean about feeling bitter, I think you just have to accept you're going to feel like that for a bit and minimise contact with babies/pregnant people if it upsets you (I've just kept it to the minimum I can get away with). Bit of self-preservation is okay in the circumstances. xx

Thanks Hels. That's really good advice. You're right - avoidance is what helps at the moment and not seeing pregnant people definitely makes a difference.

Sorry to hear you're still bleeding. Hope charing x give some good advice. I know there's no way my results will be in yet but going to phone for them anyway just to check. Feeling a bit better about the whole not being at to ttc thing but just terrified of the possibility of needing chemo. What will be will be I guess.

Hope the bleeding eases up and you can enjoy the bank holiday too. Thinking of you xxx

Hi Kitty,

I am so sorry for your loss and the added stress of being diagnosed with a molar pregnancy. I was diagnosed on 5/1/14 at my 2 week post op from my D&C for a missed miscarriage at 10wks. I pretty much fell apart when the doctor told me the news. I was having a really hard time dealing with the unfair physical and emotional roller coaster of having a miscarriage to begin with and then receiving that news was just too much. She talked a lot about percentages and how rare it is for any cells left behind to actually develop into cancer but...just hearing that word 2 weeks after losing a baby AND still having crazy hormones from pregnancy was really scary. I was told there was only 5% chance of losing your baby once a heartbeat can be detected (which we saw at 7wks 4ish days). So hearing that cancer develops in only 1-2% or women who have had a partial molar pregnancy wasn't so much of a comfort...soo I asked for some Xanax to help with the 'the sky is falling in on me' feeling which tends to pop up here and there. Like when we went to visit my 3wk old nephew last week and my husband held him and...well you know. I've had 4 weekly blood tests since 5/1, I'm am currently waiting to hear the results of this weeks test. Thankfully my numbers are going down but, that's small comfort since they still seem high. I was at 200 4wks post op. Anyway hopefully they still keep going down. The research I've read said there is almost zero chance of you having any problems once you hit zero.

I feel like I'm dealing with this all by myself and hearing stories of other women who have been through the same and have gone on to have healthy babies has been helpful. I think one of the hardest things about having a miscarriage is that it's so taboo to talk about. Everyone feels that they must wait until they are 'in the safe zone' of 12wks to share their pregnancy news. But when a baby is lost there is grief and mourning and how are you supposed to go on with business as usual just because it was and early loss and you're not supposed to talk about it yet. I had to share my story, after I was diagnosed as partial molar I told close friends and some co-workers what was going on. I could not keep pretending that I was ok (not that I had done a great job it). More people that I have talked to know someone who has lost a baby than not. And yet, we are supposed to carry on, muscle through, it's just nature...get over it...I don't think that its fair to ask us to do that. Just because the baby 'wasn't viable' doesn't mean I wasn't pregnant for 2 months. That's a long time to have a little one growing and lots of hope and excitement. Loss is loss.

I've been doing as much reading as possible to figure out what the heck is going on inside my body right now. I had never heard of this type of miscarriage before and it's pretty lonely to think you're experiencing something not many people have had to deal with. I found some very helpful and comforting websites that help explain whats going on. One of the sites is www.mymolarpregnancy.com which has posted a lot of information from Dr. Goldstein who is a guru in the field. There are stories of women who have been through and made it to the other side of this (we will too!!). There are links to private support groups, but mostly there is information about this issue which seems hard to come by.

Thanks for reading my babble, this is the first time I've ever posted to anything like this...

if you can try going to this link for a wordpress document from Dr. Goldstein, this is the first bit of info that helped me sort out this mess: www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CDsQFjAC&url=http%3A%2F%2Fmymolarpregnancy.files.wordpress.com%2F2013%2F06%2Fthe-management-of-molar-pregnancy-for-patients.pdf&ei=2l1_U432KK7hsATd0ILoBg&usg=AFQjCNFRsZ-fTeh-EN_HCMjOLdv9OSK3LQ&sig2=px2WimHh675K4kyEeJmmSA&bvm=bv.67720277,d.cWc

hels my bleeding and drop in hcg was similar to yours! hope you are doing ok

kitty I'm so sorry, it's such a shock isn't it? I really struggled when first diagnosed but it does get easier, my levels came down and stayed down and I have finished my follow up now

rosie I'm very sorry! it's really difficult at first! I found posting on mumsnet really helped as nobody in rl understood and they all expected me to be over it in a few weeks

Rosie I'm so sorry for you. It's such an awful, awful thing to happen. I know it's only a small consolation but remember that you're not alone. We'll go through it together with hels and anyone else on here who's experiencing this. We will come out of the other side like you say and we will have happy healthy babies to show for all of this one day. It's just tough not knowing when. It must have been a horrible shock for you after hearing the heartbeat and thinking you could pretty much relax that nothing's going to go wrong. It's not nice being the small statistic who it goes wrong for, and like you say it doesn't give you much hope for not needing chemo does it. I keep feeling like every time I managed to pick myself up and start to feel positive again, we got more bad news. Now I'm wondering if the next lot of bad news will be that my levels have gone up and I need chemo, which is the bit I really don't think I can handle. I keep thinking I could handle that (especially as the outcomes for cure are so promising) if it didn't impact on when we can try to conceive but its being told we have to wait that is really killing me.

I guess all we can do is hope that our numbers keep going down. I found a graph online that roughly plots the curve for the decline in HCG levels after a molar. I was able to predict from that that my level will be around 11 at 8 weeks post op so at least now I don't have any hope that I'll get into the short follow up category (yet more bad news). I can take a look what yours is likely to be if you want, based on being at 200 4 weeks post op..? When do you get your results back? Mine are tomorrow. I think I should be at zero in a couple more weeks if mine are going down but that's a big if. I am beginning to freak out that I'm having pregnancy symptoms again, although it could easily be in my head and I think I just ovulated so that could explain some of it.

You're right about it being so lonely experiencing something so rare. I am struggling with that as no one's ever heard of it, and I am desperate to know someone in real life who this has happened to. I am going to a patient forum/support group on 9th June at Charing Cross so I'm sure I'll meet some others there. Is anyone else going to that? I am really struggling with why my friends get to be pregnant with healthy babies and I get to be pregnant with a mass of cells that have a 1/5 chance of turning into cancer. Honestly! I didn't even know this was even a possibility and it sucks that sex to try and make a baby could do this to us. It sort of puts me off sex again to think that this is what my husband and I created. Sad.

Thanks for the links to Dr Goldstein's information, really helpful. It's good to know he recommends 3 weekly negatives then 3 monthly negatives as that would put me at ttc again in September rather than December which is a lot easier to take.

I really hope you're doing okay and you get some good low results soon. I'll keep my fingers crossed that your numbers come down. Thanks for replying to me. I'm so grateful to have people here for the support. xxxx

purplefrogshoes thanks for your message - it really helps to hear from people whove been through this and made it through the follow up. I really appreciate you coming on here to post that. I hope I can support others when I'm feeling a bit stronger soon. I'm actually a psychologist in a cancer centre but it's done me no good with this at all!

hels hope you're doing okay and the bleeding has stopped and you've been able to enjoy the bank holiday.

Thinking of you all xxxxx

I have posted on this thread before under another name-I had a molar pregnancy 14 years ago which became invasive and I had 6 months of high dose chemo. Happily I now have 3 dcs.

I would be happy to answer any questions from people going through this.

Kitty, I definitely understand the feeling of waiting for the news that the numbers are going up instead of down. My testing schedule is a blood draw on thusday mornings (my dr is right across the street) and then she calls me friday afternoon. This friday we were headed to Ohio for a wedding and the dr still had not called by 4PM and I started to panic! My husband doesn't seem to understand that like you, I am now paranoid that my numbers could start going up. I called the office and they were able to give me my numbers (down to 92 at 5 wks) and I was so emotionally drained that I just cried. I feel like I am hanging in there during saturday-wednesday then I get to go to the OB for a blood draw surrounded by happy prego ladies and then am totally in anxiety mode by friday waiting to see what the numbers are. This whole process is a special kind of hell...

On a positive note, it sounds like your numbers seem to be dropping pretty quickly (at least compared to mine) and I am hopeful for you that it means chemo is not in your future. It's still hard that this diagnosis has robbed us of time though. For some reason I can't wrap my head around not being able to control how long the wait is to TTC again. I am praying that you and hels and I all have nothing but good news in our future even if we seem to be stuck on the sidelines right now. Like you said, we will definitely have happy healthy babies of our own someday.

I also understand the loneliness of watching everyone else have babies when it has been so hard for me. I have been off facebook mostly but I still pop on from time to time and I can't help but feel anxious when people who are younger are announcing due dates, I feel like I'm running out of time...And I'm also not too excited about sex at the moment. How annoying is it that after making the momentous decision to go off of birth control and to start TTC I now have to go back to prevention! The romance is certainly not there for me at the moment.

In general, my feelings are all over the place. On one hand I feel like I should just be able to calm down and just wait for the numbers to get to zero, wait a few months and try again (yikes!). On the other hand I feel unable to concentrate on much, sort of like I'm in limbo and time has stopped. Do you feel that way too? I would love for you to check your graph to predict how long it might take for my numbers to drop.

I'm glad the Goldstein info was comforting. It seems like this is so uncommon that the dr.s may not be up to date on the newest research. Since he is a 'guru' I think waiting 3 months after a zero like he says might be the way I go.

purple thank you so much for your kind note. Thanks for visiting this thread and keeping us positive that a zero result is in our futures too. That is so so helpful for me.

hels hope you're doing alright too!