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.

Oh Rosie, that sounds so stressful. What a horrible experience. I'm so glad your numbers were down in the end though. It really is so scary waiting to confirm they've gone down. The possibility of them going up is so frightening. 92 is good though- down to double digits and not t

oops. Not too much further to go. I had a look at my graph for you and drew your curve - it looks like you should be at 50 at 6 weeks, 30 at 7 weeks, 20 at 8 weeks, 15 at 9 weeks, 11 at 10 weeks, 9 at 11 weeks and 7 at 12 weeks. You'd then be at normal levels at 13/14 weeks. I predicted mine would be 11 at 8 weeks though and they were 9 so I wouldn't take it as accurate, just a rough estimate. I got my period at 6 weeks when I was around 30 and I think that makes the numbers drop a bit quicker. As I guide I've read they half every 7-10 days so you can work it out that way too. I also heard that once they get into double figures they drop much slower (which makes sense) and has certainly been the case for me. An added frustration. It's helpful to have an idea though - it helped me to manage my expectation about being at normal levels by 8 weeks. Your numbers aren't that different from mine so I'm sure you'll be lower soon. When I got a bit frustrated about the lack of control over this process I googled it & found some anecdotal evidence for exercising and drinking a lot of water to try to help you hcg drop. It's probably not true but good for you anyway so why not?! I am attending a patient forum at charing cross in a week or so, led by Prof Seckl who is a leader in this over here. If there's any new info from that I'll let you know - or if you have a question you'd like me to ask him on your behalf I'm more than happy to. If only we didn't have to know so much about this, hey?!

Totally understand the not being able to get your head around the wait to TTC. It's so horrible having the only bit of control taken away from you - it's not like you have much control over the whole ttc process anyway! That's always been the biggest struggle for me too - although the cancer risk is a big worry I've always thought if this happened after I'd finished having my family it wouldn't be such a big deal as it's so curable, it's the impact on getting pregnant and the further higher risk of it happening again. I read somewhere that as the risks are so low of recurrence after hitting zero, 75% of people don't wait for the end of their follow up period to ttc. Also read earlier in this thread that Prof Seckl at Charing Cross said most people go for it straight away (after zero) so I do think the wait is more precautionary. I think you can sometimes negotiate it too. I'm sort of thinking that the stress of not being able to ttc outweighs the very small risk of anything recurring once I'm at zero. And that I will probably take a few months to get pregnant anyway by which time I'll be out of the follow up period anyway. We'll see. It's definitely tempting as I'd have to wait till December/January otherwise.

I feel the same about sex and not really into it. I guess that's normal after all this. I'm sure that will change. I feel sick at the thought of good friends getting pregnant soon and I know it's something I have to manage but I wish I didn't. I'm sure it gets easier. I guess the main thing is avoiding chemo so if we escape that then it's just a matter of time till babies finally happen for us. I feel exactly the same about feeling calm and thinking I just have to wait one minute then feeling completely hard done by, angry and in limbo the next. It's really tough. I guess that's normal too. I have been trying to remind myself that it can take up to a year average to get pregnant so just thinking about it as it just didn't happen the month I got pregnant with the molar or any months after that and now we're taking a break for our own reasons and we'll try again soon. In the meantime I'm trying to get my body in the best possible shape for it- exercising, eating well, drinking less, taking vitamins, having acupuncture (I was having it anyway) - hopefully that means when we can try it will be more straightforward. It's very hard to tolerate the uncertainty of if all though - if only there were some guarantees. I agree about the Goldstein info too. 3 months us provably the way I'll go. Also - Charing Cross say that if you had a partial then you are free to ttc 4 weeks after first normal result (as long as that one is normal too). So they're obviously much less concerned than they used to be. Sadly I had a complete so doesn't apply but might be if interest when you're thinking about how long to wait. I do think the wait times they give are arbitrary really but it's a personal choice. It's nice to know we're in this together and at very similar stages.

Let me know how you're getting on. I've been thinking of you a lot...hope the last few days have been less stressful.

hels hope you're doing ok! Thinking of you too.

paintedveil thank you - that's really kind. It's so nice to know you went on to have three after this! Really helps. I may get in touch with a question or two sometime. I really appreciate the offer.

Sorry for the typos in that message-I'm on my phone!

Hi I messages a few weeks back when I first found out I had a partial molar pregnancy, I got my first results back at 633 last week, but on Tuesday of this week In the morning I had what felt like contractions, then in the afternoon I started bleeding really heavy in work, apologies for the tmi but it was running down my legs. I was really panicking I went straight to a&e but it had slowed by then. I am still really cramps now but not bleeding as heavily. Has anyone else had anything like this? The hospital couldn't tell me why it happened, they did my bloods and they are down to 261 and they did a scan and my womb looks empty which is reassuring but with this cramping I am worried it will happen again.

oakwoodmummy, that must be really scary. I'm surprised the hospital didn't say more. This hasn't happened to me do I'm afraid I don't have much advice but I read somewhere in a forum a few people discussing similar experiences and someone mentioned it could be leftover tissue so its good your body is getting rid of it. It may bring your numbers down more quickly too. I think hels also experienced some bleeding so she might know more? Are you in the UK and registered with one of the specialist centres? If you are maybe give them a call and ask their advice. How long has it been since your d&c? It could be bleeding from that still? So sorry that this happened to you, and at work as well when you've already had all the horror of a miscarriage then a molar. I hope the bleeding stops. Xx

kitty!
Thanks so much for your note! I'll write more later since we escaped to the beach and have little access to Internet but your chart was right! Just heard from the doctor and I'm down to 50! :)

oak I hope all is well with you. I know that must be very scary. Do you have a doctor who you can talk to about this? It's really good that you numbers have gone down so much, and maybe the bleeding us helping to clear everything out faster. Hang in there!

Hearing from you guys is really helping, thanks so much!

Thanks Kitty and rosie, to be honest the hospital seemed to not know too much about molar pregnancies. I am registered with charing cross, they were reassuring and also said it was probably molar tissue coming away and that i should probably experience a drop in my levels. They didn't explain why it happened though or if it will happen again. I am feeling so exhausted now, the GP is recommending some time off work, which I feel I do need at the moment. Are all of you still working at through all of this?

Hi oakwoodmummy I had the same happen to me several times! doctor really didn't seem that concerned but did check my iron levels. It did result in a massive drop in my levels. I really think you do need time off work as it is exhausting

Hi Rosie. Yay so pleased you're down to 50 and the graph was right. Hopefully it helps to know what to expect. I hope you're enjoying your time away at the beach. A nice break is a good idea.

Oak I'm so sorry. It all sounds so stressful. I'm glad you've been in touch with Charing Cross and they've given you some advice. Hopefully it'll bring your levels right down. I haven't stopped work but only because I would have to defer the end of my training course if I did & I qualify in September so I believe I can get there. I am
Lucky as I feel fine physically and had minimal blood loss after D&C and a normal period. I also only work in the office three days a week then 2 days at he. 5 days in the office might be different. If I had lots of blood loss and was so exhausted I think I'd take some time off. It might be helpful to have one less thing to worry about for a while. I really hope you're ok and things start to improve soon. I think when you get a diagnosis like this it seems like things will never be ok again but I know they will, for all of us, and this is a hiccup along the way but we'll be looking back on it like a distant memory in not too long. Thinking of you. X

Hi Oak
I think some time off to heal physically and rest emotionally nights be a good idea. I've been taking some time off of work here and there. Hence the beach weekend for metal reboot! I didn't have bleeding after the D&C so I can't advise you on my experience there. I know this whole experience is so awful and it's made harder by the lack of information out there for us. The one thing to keep in mind is that dropping numbers are a good sign even if its little consolation for all that you're going through. Fx for lower results after your next test. We're here for ya!

Kitty
You're totally right about women who take a year or longer to conceive. It's makes a lot of sense that even though we have this wait a lot of other ladies go through it in other ways too. I've been getting back to the gym too, I'd been taking it easy for a few weeks after the D&C. You're right about using this time to get as healthy as possible. I read a graduation speech given by a general over here and he said 'when you're in you're darkest moment, you need to be your best' I liked that, so maybe it will be helpful for you too.

You're not alone feeling sad when you hear about friend getting pregnant. It's natural to feel like that when you're own process has been put on hold. It's hard for me to hear the announcements too but I try to think that the more people that get pregnant the more chance I will have someday too! (After I have my little pity party wishing for my own little one) but its true, I truly believe that this is a huge bump in the road but its been worth it so far and it will lead us to the family we were ment to have. A friend of my sister in law suffered a miscarriage and she has a beautiful son now, she said as hard as it was to go through all of that if she hasn't her son wouldn't have been born. We have to hang in there and trust that we will have our families when they are ment to be, it's just someone else's time right now. This is super hard but, we can do hard things.

I also kind of think that after this we will be different as mothers. And that's the mom our babies are supposed to have...

Hang in the kitty, I'm thinking of you too. I hope you're doing ok and could relax this weekend. Reading your note was calming, just knowing there's someone out there who get it. Thanks again for the support.

oak hope you're doing ok and your numbers drop again. Like Rosie said, a drop is all we're aiming for so try to focus on that even though the bleeding must be very traumatic. Hope you're feeling better after the weekend.

Thanks for the support Rosie, I can't tell you how valuable it is to me. I feel like I'm not alone with my hopes & fears anymore. I love the quote from the graduation - really helps. And that's what we're doing - trying to stay positive, get in shape etc. it's tough but I feel so feel it'll all come right in the end. You're right- we can do hard things. A very good friend of mine had a miscarriage then an accident & wasn't allowed to try for 2.5 years due to the mess she was on. In that time most of her friends had their first and second and it was just awful for her but like your sister in laws friend she says she understands now she has her daughter and it was all worth it or she wouldn't have her. I'm sure we'll be feeling like that one day and I can't wait.

Managed to have an okay weekend but I'm still consumed by thoughts of being pregnant again. Hopefully that'll ease up soon. I got my testing kit from charing cross on the post and I'm to go have the blood tst on Friday so I should know about my levels by early next week. Fingers crossed. Hope your next ones have continued to drop too.

Thanks for the support, it helps so much ; )

Thanks everyone for the support. Rosie I am glad to hear your numbers are down to 50, hopefully they will continue to drop, I really liked that quote too, I will try and keep that in my mind. I rung charing x today as I am still cramping and bleeding. They said they weren't concerned about the bleeding provided it isn't flooding like last week but they are not sure about the cramps so I have to go to the early pregnancy unit tomorrow to get checked out. Also, the routine bloods I had done for charing x last Tuesday am were 224 but after the bleeding in the afternoon the ones in the hopsital were 261 so a bit concerned as to why there was a difference. Hopefully they will do them again tomorrow.
purple hope you don't mind me asking but was your bleeding like a period or heavier? Also, did you cramp with it too?
Thanks everyone it's good to know you aren't going through this alone, my family are supportive but it's hard when no one else really knows what's going through your mind. Xx

Kitty I'm glad to be there for you and anyone else who is reading this thread. We are definitely not alone. I didn't think getting pregnant would be easy but, I thought if I did all the right stuff like take my vitamins, clean eating, cutting out alcohol and caffeine then I would be awarded a healthy pregnancy. That's normally the deal right? I had no idea so many women have suffered miscarriages and disasters along the way. We are standing shoulder to shoulder with generations of women who put their hearts and lives out there to become moms. I think every mom would say its all worth it though.

How long have you been dealing with all of this? My miscarriage was detected on April 17 and then my doctor told me it was molar on May 2nd. I feel like its been a lifetime but it's only been a month today that I've been living with all the tests. So One month down! Yay...

This weekend was the first weekend I wasn't feeling consumed by all of this. The beach we went to is our favorite place, it is so relaxing. We just get away and forget about home for a while because tv and internet are very limited. It really helped to get my head out of all the stuff going on. Do you have anything on your calendar to look forward to? Have you been doing anything to treat yourself especially well? I think this is the time to take extra special care of ourselves.

I have my fingers crossed that your numbers drop!! You said before that you may have the all clear by October? If that's the case then maybe by this time next year you'll have a little baby bump! Maybe this year will fly by and all will be well before you know it. I'm hoping this summer will fly by like all the other ones seem to do and then maybe we'll be back in TTC mode again by fall.

Take care of yourself lady! Maybe NEXT year is our year! :)

Oak So sorry to hear you're going through this. Seeing different results is probably very nerve wrecking! I hope your tests tomorrow bring good news! We are all here for you and thinking of you. Big hug being sent your way!

oak it was really heavy and at times soaked my clothes and yes I had cramping, much worse than period cramping, it was awful but my levels dropped dramatically. Hope the epu can reassure you xx

Hoping everyone's doing ok xxx

Well, what a day, I went to EPU and they did a scan and there was a dark circle about 5mm which wasn't there last week. The nurse kept asking me could I be pregnant but we haven't had sex since before my erpc on 4th April so I said no. She thought it could be molar re growth and did my hcg levels. She said she would ring charing cross and ring me later in the day with the result. So spent the day thinking that I would need another erpc etc but thankfully when she rung she said hcg is down to 116! So they think it's a clot which has formed and that's causing the craps as my body is trying to expel it. She is going to keep an eye on me though and bring me in again later in the week/early next week to check everything again which is great to have peace of mind.
Thanks Purple it's just rubbish to be constantly bleeding and just when you think it's stopping it starts again.
Rosie the beach sounds lovely and relaxing. You asked about how long people have been dealing with this, I was diagnosed with a mmc on 25th March, had erpc on 4th April and was advised it was a partial molar on 7th May.
Kitty how are you getting on?
Are any of you close enough to drop into the sessions at charing cross?

oak! I am so happy to hear that your numbers dropped!! That is great news! I've been thinking of you a lot and was hoping that you would have some good news after your visit to the hospital. Is it possible that your cramps could be your body trying to ovulate? I was panicked earlier this month with some weird cramps and my doctor said that's what it could be. My numbers were still in the 500's when this cramping occurred so I didn't even think ovulation was possible. I didn't have the bleeding like you did but it sounds like from purple's experience that the bleeding is helping to clear things out?

Really, someone needs to write a book on this! No fair we need to search and guess about what's going on in our bodies.

Your dates sounds very close to mine as I was diagnosed with a pmp on the 2nd of May. Hopefully we will be finished with the monitoring soon.

Great news Lady, so happy for you!! Hang in there! I have been feeling very optimistic for our thread of ladies the past few days and feel as if we are all headed in the right direction.

Xoxo

oak - I'm so relieved your numbers are down! That's a big drop at this stage too. I was thinking about you & worrying about molar re growth. I'm glad they think it's just a clot. Still, the bleeding & cramping must be awful & it can't be nice to be asked if you could be pregnant when that's all you wanted in the first place & is how all this began. I still can't quite get my head around the injustice of it all - other people get to be pregnant and we get to miscarry and then have all these scary health complications and aren't allowed to get pregnant. We really do all deserve happy problem-free pregnancies in the future. Keep us informed how you're doing oak. I am ok, thanks for asking. Work has been quite busy & I'm writing a thesis at the moment so it's been nice to have a couple days off from thinking about all this. I live just outside london & commute in so I'm going to the charing cross drop in thing this Monday 9th. I hope its useful & doesn't scare me more! I should get my results that day too as next blood test is Friday morning. Are you going to any of the drop ins?

Rosie - I'm glad you're feeling positive about us all. That helps to know. So glad you were able to get away this weekend too and not be consumed by all this. Its unbelievable what a difference it makes to your mental well being if you can get a break from this. I still feel quite preoccupied with being pregnant again but hopefully that will calm down soon. You're so right about all the women who have gone through this to be a Mum/Mom- it really will make us even more grateful for those babies when they come. I know will wear mine with pride knowing I went through so much to have it.

To answer your question, I found out on March 8th at a 7 week scan (private one for reassurance) that I had miscarried (they thought blighted ovum) then had 3 weeks of trips to the EPU for more scans until they finally decided nothing was going to develop. Had ERPC/D&C end of March and didn't find out till 7 weeks later (13th May) that it was a complete molar. I had none of the symptoms of it (no sickness or bleeding etc). What's weird is the Dr at my local hospital who told me it was a molar said that he'd gotten a second opinion from charing cross-he confirmed this in a letter. But charing cross say they've never seen or analysed anything for me and they've requested it but not heard back. Apparently in 25% of cases the diagnosis changes once charing cross (the experts) see it so mine is still only a suspected complete molar but I'm not holding out any hope. Bad practice though. Something's obviously gone wrong. A friend of a friend of mine was misdiagnosed with a molar and received a letter two months later to say it wasn't a molar after all!

Really hope everyone's doing ok and thanks for all the support. purple - thanks for checking on us - hope you're alright too.

Thinking of you all. Hope everyone's numbers keep coming down xxxx

Hi All,

Rosie and Kitty I'd like to hear how you are getting on?

I've had the most manic week or so at work which is why I've not been back on here. I've been bleeding again for the past 4 days or so which is very tiring and probably quite worrying too. Last numbers two weeks ago were 81 according to charing x but 132 according to the Royal London (which is quite a massive difference though both results were from the same day). More results tomorrow, so hoping they'll have gone down further ...
It's hard not being able to explain to people that the reason you're tired/not going out is because you're bleeding from an operation months ago!

Sorry for the whinge. Hope you're all doing well.
devil any advice welcome! I had a complete molar erpc on the 1st april, bled for about three weeks, nothing for a month then more (lots) of blood the past three weeks.

Sorry, for some reason my computer didn't load the last few days, so now I know how you all are! x

Hels if it is any reassurance! last Tuesday I had bloods done for charing cross at 9am and then ones done in hospital after I started flooding. These ones were done about 4pm, the ones in the morning were 224 and the ones in the afternoon were 261. Charing cross said it was maybe because of things I had eaten, or because of the equipment used to analyse the blood being different. A GP friend also said that with blood tsts they have to allow for differences because our blood doesn't stay the same all the time there are subtle changes due to how we are feeling so hopefully that's all it is. Xxxx

Thank you everyone for your comments and positive thoughts, I am glad to know everyone is doing ok and we are all heading in the right direction. I am starting to feel abit more optimistic today which is good. I am also going to see the bereavement midwife at the hospital next week which I think will help.
I am in NI so not handy for popping to the sessions unfortunately.
Do any of you have children already?

Oak thanks - always helpful to know. Very glad to hear you are feeling more cheerful. When's your next test/result due? And no, no children yet. A year of being off then pill and then this ...

KittyDon't know anything about the drop-ins? What time are they?

Thinking of you all xx

Hi hels thanks for checking us - sorry to hear your bleeding had started again & you've been so busy. It must be so worrying but hopefully oaks reassurance about the difference in levels in blood fluctuating helps. I hope your results tomorrow are low. Fingers crossed for you. The charing cross drop in things are something they do once a month for newly diagnosed patients I think. I got a leaflet about it in my first testing kit. Perhaps phone them and ask if you can go if you could make it to one? There is the opportunity to speak one on one with professors about your case etc plus meet other patients and hear the latest research. happy to share all the info I get with everyone or ask questions on others' behalf....

oak glad to hear you're feeling a bit more optimistic. It's so hard and I've found it to be so up and down. I hope your numbers keep dropping and it all gets easier for you. I am very lucky, I have a 15 month old daughter and she's great. Found out I was pregnant just before her 1st birthday. We'd planned to have them close together as we'd always wanted that. I do think it makes all this much easier and I'm so so grateful for her. But it's been hard to give her the attention she deserves as I've been so consumed by this. I feel quite guilty about it - she doesn't even have a sibling yet but it's already taken away from her. I think the bigger age gap than there was meant to be will always remind me of the miscarriage/molar too but honestly if I only had her it would be just fine. I am extremely blessed. Do you have children oak?

I had some great news yesterday - charing cross finally analysed the sample& my local hospital had got it wrong. It was a partial not a complete so provided the bloods I do tmrw are zero (I hope so as they were 9 over 2 weeks ago) I only have to wait 4 weeks then do one zero urine sample and I'm clear to TTC! Also means the risk of molar re growth/chemo is much lower then I'd thought. Quite cross with my local Hospital for getting all the info so wrong but telling me as if it was certain but also obviously over the moon to be almost off the hook and much lower risk.

Rosie - how are you? Hope your numbers have dropped further when you get your result tmrw.

This support has helped me so much, girls. Thank you xx

Hello Ladies,

hels I am so glad to hear your numbers are down again! Such great news. I feel that with each drop in numbers I am getting more and more able to deal with this. I hope that is the same for you! I'm sorry that you're still experiencing some bleeding AND that work has been crazy. Are you able to sneak away for a long weekend to relax? Treat yourself to a pedicure or a long bath? I'm a firm believer that when life gives you lemons its time to go out and buy those expensive shoes as a reward for surviving the damn lemons. ;) lemonade is for the birds.

I know it's hard to talk to people about what you're going through. If you're comfortable though, it might make things a little easier to share your story about this with the people around you. I have talked to several of my friends, family and even close co-workers and they have all been really supportive which helps a lot. You don't have to suffer alone or silently, people who care will take good care of your feelings I've found. Before all of this happened I read a book called Carry On Warrior and it was all about letting yourself be honest and be yourself even if yourself is messy and hurt and raw from life. Life HURTS and is BEAUTIFUL at the same time, if you're tired and depressed from all of this it's ok to say so. People who love you will raise you up every time.

oak Glad to hear you're feeling more optimistic! For me that has been the hardest part. I felt like up until last weekend I was just in the darkest place. My mood was so up and down but usually was just down...This weekend was pretty peaceful and another call that my numbers were at 50 has finally helped me to kick the fear that they might start to go up. Hearing from you ladies and the support I've found here has had a huge impact on how I've been feeling lately too. I think having a little peace has helped to make me more optimistic too. We all seem to be headed in the right direction towards zero. Still sending happy thoughts and prayers your way for continued optimism!! :)

Also, no children here. This was my first pregnancy...we conceived a few months earlier than planned to really start and I was only off of birth control for about a month. I was cautiously excited until we saw a heartbeat and then was through the roof excited. I love kids, and was so so ready to be a mom...now I guess I'm ready to renovate the bathroom and paint the house haha. Or something else that I wouldn't be doing if I were 17wks pregnant right now.

kitty So happy to hear that your diagnosis has changed to pmp! That is some great news! I'm also glad to hear you are so so close to zero, you are almost there girl! Are you supposed to hit 0 or