Molar and Partial Molar Pregnancy Support Group

[Jamaris Mummy]

Hi all - I've just come across this thread after posting elsewhere but this is obviously the more relavant one. On 20th June I had my 1st scan (by my dates 1 day off 13 weeks) - I had a big bump, had put on over a stone and was feeling sick 24/7. I'd also got a rash on my chest that i've had with my 3 previous pregnancies so I was very excited to finally be seeing my baby. So I was incredibly shocked to be told there was just an empty sac. Anyway to get to the point, I had an ERPC on the 23rd. I'm desperate to be pregnant again so was doing a HPT each week so I could get some idea of when my cycle would start again. This morning (3weeks after op) it was a very quick, strong positive still so just for piece of mind I phoned the hoppital. They seemed a bit concerned and phoned me back once they'd located my notes and said that from the tissue analysis we requested, I'd had a partial molar and they gave me a number of a lady to phone. By this time I was really worried thinking cancer etc etc and not only am I dealing with a miscarriage but now this so i was in a bit of a state. anyway, thankfully it's not cancerous and I've got to go and get my bloods taken tomorrow and then weekly tests.
I'm 37 and this baby was going to complete my family so now I'm worried that having to wait at least 6 months might be too late and I really wanted to be pregnant by the time this one was due (Boxing Day, also my son's 2nd birthday which will be quite emotional I think now - well mixed emotions).
Just wonderred other people's experiences and how quickly your levels went down etc. Any sort of feedback would be appreciated. Thanks

Im so sorry to hear of your loss I hope we can be of some help to you here, the worst stage is the first stage, where you are now, it can be so hard and I feel for you Definately try to make some time to read through some of our stories, i think this would help. A pmp is absolutely devastating and altho we have a difference in age I was eager to be pregnant again and the thought of waiting six months at first, seemed overwhelming. But now that I did wait Im so glad I did, emotionally I needed that even tho I didnt know it at the time and the time passed quickly, and when I did fall pregnant again (first try too) I was so appreciative and it has made this pregnancy so much more beautiful and special (even with all the morning sickness etc!) My levels dropped within in the first 3 months back to 0 and I was monitored well, blood tests every week.
It feels like a long road right now, and you feel so alone in the process, but know you have women here who are always available to talk to and we sincerely know the emotions you are feeling, no question is silly and every woman here is a woman of strength, and will help to guide you through. All the very best

 

[avgabcon5]

Many, many thanks for all your messages of support. I've just got my first blood result back and my level is 231 which I'm told is good for only 3 weeks after my op so I'm feeling like there is some sort of clear patch in this fog I seem to be in at the moment. Does anybody know that if they go to normal very quickly whether they say you can try again sooner than 6 months? I know that i probably should be allowing myself to physically and emotionally recover before I start thinking about pregnancy again but the urge to be holding a newborn baby in my arms again and the thought of it happening is the only thing keeping me sane at the moment!

 

[Sarahwoo]

Many, many thanks for all your messages of support. I've just got my first blood result back and my level is 231 which I'm told is good for only 3 weeks after my op so I'm feeling like there is some sort of clear patch in this fog I seem to be in at the moment. Does anybody know that if they go to normal very quickly whether they say you can try again sooner than 6 months? I know that i probably should be allowing myself to physically and emotionally recover before I start thinking about pregnancy again but the urge to be holding a newborn baby in my arms again and the thought of it happening is the only thing keeping me sane at the moment!

231 is fantastic! Really that's a great result, very, very promising for three weeks post op

The general advice is six months. Which centre are you doing your follow up with? If I were you I would contact someone there and ask their advice. Because of your age (I hope you don't mind me saying that! ) I would be asking what the risks are of not waiting and weighing up the options. I hope that helps a bit. I was 12 weeks when I found out that there was no heart beat and it was honesty so, so hard - I know just how you feel

 

[Sarahwoo]

Kate GORGEOUS pic!!!!!!!!!!! I loved the other one you put up too - you are so pretty!!

 

[Alwilan]

Many, many thanks for all your messages of support. I've just got my first blood result back and my level is 231 which I'm told is good for only 3 weeks after my op so I'm feeling like there is some sort of clear patch in this fog I seem to be in at the moment. Does anybody know that if they go to normal very quickly whether they say you can try again sooner than 6 months? I know that i probably should be allowing myself to physically and emotionally recover before I start thinking about pregnancy again but the urge to be holding a newborn baby in my arms again and the thought of it happening is the only thing keeping me sane at the moment!

I'm with Sarah. The HCG results sound fantastic, and I would just try and build up a relationship with the centre dealing with you. Once they've returned to normal which is considered under 25 I would try and arrange an appointment to go through how you are feeling.

Please, please wait till you have got normal levels as this will make your next pregnancy easier, because the first few weeks you become paranoid the elevated HCG is nothing to do with a baby but a mole returning. I only calmed down this pregnancy when I saw heartbeats, and I'm still nervous about my 12 week scan in 10 days. I really think you could beg and hope they say yes to Oct/Nov, but it will ultimately be your decision, but as I said earlier wait till they are below 25 and stay that way for at least a month.

Keep posting

 

[Alwilan]

Kate I just sound like I'm copying Sarah today but your picture is so so so lovely, although I always love my bump I wouldn't be able to post a pic as it would look more like a frame from a horror movie, but yours looks perfect

 

[AmandaLucsMom]

Many, many thanks for all your messages of support. I've just got my first blood result back and my level is 231 which I'm told is good for only 3 weeks after my op so I'm feeling like there is some sort of clear patch in this fog I seem to be in at the moment. Does anybody know that if they go to normal very quickly whether they say you can try again sooner than 6 months? I know that i probably should be allowing myself to physically and emotionally recover before I start thinking about pregnancy again but the urge to be holding a newborn baby in my arms again and the thought of it happening is the only thing keeping me sane at the moment!

Well, that is great that your levels are so low! Personally, I would try to speak to someone and explain that you would like to try again and, considering your age, find out exactly what your risks are if you wait 3, 4 or 6 months. And find out if they want you to wait from your procedure or when you reach zero. Ultimately, it is up to you as to how long you wait.

In the US, not all Dr's believe you must wait if your levels return to zero within a certain length of time. In my case, my Dr is one of that belief and actually told me that, due to my age, if we intended on trying again to do it sooner rather than later. I'm not trying to encourage you to go against what your Dr's advise, just letting you know there is some difference of opinion. Like I mentioned before, it took 6 months for us to conceive anyway and that was after waiting 2 cycles, so we ended up 8 months post-op. I was still paranoid of a reoccurrence for the first 12 weeks and worried about a loss up to pretty much viability stage.

I know its difficult to wait.

 

[AmandaLucsMom]

Kate, your profile picture is adorable! Dont you just love your belly? I know I do!

 

[Jamaris Mummy]

Many, many thanks for all your messages of support. I've just got my first blood result back and my level is 231 which I'm told is good for only 3 weeks after my op so I'm feeling like there is some sort of clear patch in this fog I seem to be in at the moment. Does anybody know that if they go to normal very quickly whether they say you can try again sooner than 6 months? I know that i probably should be allowing myself to physically and emotionally recover before I start thinking about pregnancy again but the urge to be holding a newborn baby in my arms again and the thought of it happening is the only thing keeping me sane at the moment!

oh wow 231 after only 3 weeks thats an amazing results!mine were still well into the thousands at that stage and look where I am now! how encouraging! I agree with the other ladies about seriously discussing it with your dr etc about when to try again! And I would advise a few different opinions as well. Its hard because from my own experience I still believe the drs are still learning about these types of pregnancies and dont FULLY understand them themselves yet, as I was told so many different things from different drs! For example, with this pregnancy at 6 wks I was soooo sick I was worried it was another pmp, I went into the er and the midwife was just horrible!! she said to me "well if you already know theres a heartbeat in there its definately not a pmp because with a pmp you DONT get a heartbeat!!" I snapped back at her in tears saying "well thats funny, because my baby from my pmp was 16 weeks along when I delievered him and he had a PERFECT heartbeat!" (which he did!! everytime it was checked) and her, being a midwife herself didnt even understand this. Orginally, after I had Jamari, the dr at the delivery suite told me I had to wait 12 months to ttc again, and in the meantime I was to go on the pill! I freaked! But turns out she was a new young dr and not my appointed ob who went on to say there was no way in hell I should go on the pill, because that itself is dangerous to do after a pmp, and that I would only have to wait 6 mnths to ttc again. I was reading somewhere a few years back the guidelines were 12 months, but as the dr's learn more they've dropped it back to 6, so who knows it could drop again in the future? I know how you feel I was so impatient to ttc again, check out some of my earlier posts! but i think thats a mother thing, and definately ok! I hope you are able to get some answers from some great dr's where you are!

THANKYOU to Sarah, Aliwan and Amanda for your lovely comments! trumaine and I got a bit creative and made a heart with our hands around baby and took a photo! It stemmed from my friends on facebook demanding photos, but Im not sure yet if I want to put belly pics on fb...what do u all think? So i just put that one and an ultrasound pic of babys nose and lips lol..still thinking about whether i should put others up or not!
Oh an yes Amanda Im loving my bump! its getting so much higher which im SO excited about coz it was so low, and was a bit of a B bump, but now its turning D!!

 

[AmandaLucsMom]

Kate, I think you know what my answer will be, but do what you're comfortable with. I waited unitl 20 weeks to post one, I think, but I didnt feel like I had a proper bump until then and you are already there!

I havent seen the US pic yet, I'll have to go check his little face out! And I do believe you will not have an innie belly button for much longer! I cant wait to see you further along!

 

[Jamaris Mummy]

Lol Amanda I wOndered abOut my belly utton actually! It seems to be having trouble deciding what it wants to do lol it's so stretched poor thing and I have a big freckle in it! Hehe !!

 

[AmandaLucsMom]

Lol Amanda I wOndered abOut my belly utton actually! It seems to be having trouble deciding what it wants to do lol it's so stretched poor thing and I have a big freckle in it! Hehe !!

Haha, mine is super shallow, but never popped with Luc. It is very off center as well. JP keeps asking me whats going on with my belly button and I tell him to leave my BB alone!

 

[avgabcon5]

I'm just feeling really sad and tearful today. I think the last few days (since I found out it was a partial molar pregnancy) have been so busy with phone calls/blood test etc that's it's only now really beginning to sink in. I'd only just got my head around having a missed miscarriage and everything that that entails and I feel like my grieving has begun all again. I'm waiting for my 'sample kit' to arrive from Sheffield - I think I just want a second set of results on my HCG level so I know they are definitely falling. I know I'm waffling but places like these forums are a godsend - just writing my thoughts down helps. It's the thought of having to wait so long to TTC agian that's hard too. I think I've decided I'm going to go back to work (a primary school teacher) just one day a week in September - my eldest starts school then so it will be my other two that will go to nursery but I think it will be good to have a distraction and different focus and will probably make the time go quicker -'Oh, it's Friday again - time to go to work -another week gone by.' that sort of thing! I think it's hard aswell because generally people haven't heard of a molar pregnancy before so it's difficult for them to understand. Anyway, thanks for reading.

 

[AmandaLucsMom]

Aww, I am so sorry you are having a rough day. I think its actually a good thing for you to feel it and get it out. I agree, writing down your feelings and kind of just putting it out into the universe is very helpful. Big hugs to you!

When I got my results, my immediate reaction was very similar to yours. I had such a great first pregnancy with pretty much no negative symptoms and was so blissfully ignorant. I totally took for granted that the second pregnancy would be the same. It hit me like a ton of bricks when we realized it was not a viable pregnancy. Then I got the diagnosis and had no clue what that meant. Interestingly enough, my mom had a complete molar pregnancy (my Dr says there is no way any connection exists, just a coincidence) between my sister and I (no ultrasounds back then, they only knew when they weren't able to pick up a HB with a stethoscope late in the second tri) and she had to wait an entire year to try again. That was all I knew about it. So, I went home and did what a lot of people do...Google! I searched and searched and read and read every night for quite a while. Some info scared me to death, but then my period returned and I knew that was a good sign. I had no idea back then that people in countries other than the US are told to wait 6 mos to try again, so this was never a concern for me. In those early days, my son was truly what got me through it. He was only 2 and needed his mommy to be happy and healthy enough to care for him, play with him and just be mommy to him.

By about a month to 6 weeks post D&C I was actually feeling thankful to have a reason for my mc. Most people dont ever figure out why they lost a pregnancy. I also found comfort in knowing this was a fluke thing and most likely, it wouldnt happen to me again. I convinced myself that my husband just had over eager sperm and that would be a good thing when we tried again. : )

I still have sad days (Mother's Day was especially difficult for me, I should have been a Mother of two and holding my 3 month old baby. The anniversary of my loss, thankfully fell on the day I threw a 3rd birthday for my son, so it went by easily. The days leading up to what would have been my due date was horrible, but the actual day wasnt too bad.) and you know what? Its ok to be sad. I'm not going to lie, being pregnant again makes it much, much easier, but I feel robbed of the innocent bliss I had with my first pregnancy. I spent all of the first tri and half of the second too afraid to really bond with my baby. Thankfully, thins are better now.

The last thing I want to say is, it will get better and these feelings will pass. You will make it through the wait and you will have another baby. You just have to believe it. You are the only one who can make you feel better. I think going back to teaching is a great idea. It will be good for you not only to get out of the house and pass the time, but like you said, it will give you something else to focus on.

I hope you find peace in all this craziness. Big hugs to you!

 

[avgabcon5]

Thanks AmandaLucsMum - I had a good weep earlier and feel better for it. I really appreciate everybody taking time to read and reply to my posts - they do help - isn't technology wonderful! x

 

[Jamaris Mummy]

I'm just feeling really sad and tearful today. I think the last few days (since I found out it was a partial molar pregnancy) have been so busy with phone calls/blood test etc that's it's only now really beginning to sink in. I'd only just got my head around having a missed miscarriage and everything that that entails and I feel like my grieving has begun all again. I'm waiting for my 'sample kit' to arrive from Sheffield - I think I just want a second set of results on my HCG level so I know they are definitely falling. I know I'm waffling but places like these forums are a godsend - just writing my thoughts down helps. It's the thought of having to wait so long to TTC agian that's hard too. I think I've decided I'm going to go back to work (a primary school teacher) just one day a week in September - my eldest starts school then so it will be my other two that will go to nursery but I think it will be good to have a distraction and different focus and will probably make the time go quicker -'Oh, it's Friday again - time to go to work -another week gone by.' that sort of thing! I think it's hard aswell because generally people haven't heard of a molar pregnancy before so it's difficult for them to understand. Anyway, thanks for reading.

Aw hun sorry to hear your having a rough time atm its really rough in the beginning, so overwhelming and it feels like there is absolutely nothing good about the situation , well there isnt, but it doesnt even feel like theres a light at the end of the tunnel...try to think of little positive things to get you through each day, i think ur idea of going back teaching would be a fantastic help and make time feel as tho it is passing faster..and yes its a pretty isolating experience because you know the majority of ppl dont understand the condition, some have never heard of it. Things do get easier, but there will always be days when it hits you like a ton of bricks..as amanda said another pregnancy does make things easier, but at the same time it also reminds you now and again of the past pregnancy, i was only saying to my oh today im always confused as to what to say when ppl ask if this is my first pregnancy, sometimes i say yes just so i dont have to explain anything but then i feel guilty as though Jamari didnt exist, but the majority of the time i say that its my 2nd, and end up explaining, altho keeping things short and sweet coz sometimes ppl go quiet or dont knowwhat to say to what u tell them. Its a great thing you have your little ones there to put your energy into as well i bet they keep you a busy mummy! Im glad you find some peace from writing on here, u r so right when u say its a godsend, its truly got me through this whole experience, and such an amazing thing that these women who support each other are on other sides of the world, but you feel like you know them be easy on yourself and try to take it one day at a time, we are here to listen

 

[avgabcon5]

Sorry to keep asking for your support ladies on here but I am so so angry with my mother and husband at the moment. My mum has always been quite 'hard' and abrasive - she isn't the motherly sort, definitely not soft and cuddly. My husband too finds it hard to show and talk about emotions. But through this whole experience I have been so upset and disappointed with them. My OH has just carried on completely as normal and despite asking him how he feels about it all hasn't really given me anything back. I feel when I'm talking about it (I need to talk about things to help me get things staright in my head, to understand and to grieve) that he's just 'listening' (passively) to keep the peace. My mum, since I told her, hasn't really asked about it or asked how I'm feeling/coping. When we initially thought I'd had a missed miscarriage she said, chuckling 'It's almost funny isn't how you've spent 3 months feeling so sick and so tired for nothing'. My dad said, on the day, I found out there wasn't a baby @Well, at least you don't need your loft extension now'... I know they didn't mean it nastily, were just thoughtless but even so...
Anyway, today, I showed my mum the leaflet Sheffield have sent me, explaining all ablou molar pregnancies and she said after reading 'Oh, so there's a chance it could grow back.' and I said 'Yes, I'm a bit worried until I get my second set of test results back. I just want to know they're going down.' She basically said I was being really stupid worrying and then my OH said 'You are being stupid. There's a chance I could get testicular cancer or get ran over by a bus but I'm not worrying. Just get on with things.' Prat.
Am I being oversenstive? I walked out the house and went for a long drive to cool off. I mean I have lost my baby, I've found out it's more complicated then I thought, there are implications for in the future and I can't try again until Xmas at the earliest. The last two years have been really difficult for various reasons, one being my son who's 19 months was born at 27 weeks and I was in hospital wih severe bleeding from 20 weeks. He then spent 12 weeks in hospital.
I was so looking forward to this baby and people seem to think I can just 'lock it away' and act like it never happened.
Anyway, rant over. I got my testing kit in the post today so will send it off tomorrow and hopefully get the reults end of next week. THEN I might stop worrying!!
Thanks for reading xx

 

[AmandaLucsMom]

Firstly, I am so sorry you arent surrounded with more support and understanding. I think its easy for people to act like "well, everything happens for a reason" and such rather than possibly face the fact that a life was lost. Some people don't understand that. And to top it off with the reason for our loses. Even most Drs dont understand the implications.

My husband isnt one to get emotional either. He really didnt know how to deal with my after out loss. He also "listens" with a blank stare on his face and doesnt know what to say. And I cant tell him what to say. My Mother is a nurse, so she is somewhat emotionally cold to medical issues. Her father passed away when I was a little girl and she got a ton of judgement from family and friends when she didnt cry in public at the funeral. I got the "its better that it happened early and that it happened like this is there would have been something wrong with the baby" from her when I told her. Not what I wanted to hear while grieving and not what I needed to hear from my mother. My mother would act much in the same yours did after I showed her the leaflet. She would act like I was bring silly worrying about it.

I dont think you're being overly sensitive. I think support groups (of any kind) exist because a lot of people dont know how to deal with grief. We cant make people be the way we want them to be, say the things we need them to say. I pretty much stopped talking to my family about it. I wish I had found this board then. Even after getting pregnant again, I got lots of "you're being silly"? and eye rolls from loved ones when I expressed worry in the early stages. I found a rainbow baby board and they have been of tremendous support.

Lastly, I am so happy to hear your son did so well begin born at 27 weeks. That is so, so early. Congratulations for your miracle! I know that must have also been a very scary time for you!

Please come and rant to us anytime you need to, We are here to listen and support with open ears and arms!

 

[Alwilan]

Your post made me cry. I wish I could come and give you a big hug now . I must admin my OH and Mum weren't too bad, although my OH wasn't as upset as me, or didn't show it. I think the truth is that because it's a subject so little is known about people tend not to discuss it at much detail because they don't know about it. Your OH comment about being hit by a bus or getting cancer, is probably more him re-assuring himself. I found out much later after my samples started coming back less and less that Nick, my OH, had been petrified I would need chemo etc...., he never let on at the time...........BUT this is exactly the reason these message boards are so great because you can speak to others who do know the worry you have about yourself, how and when to start grieving, the complete mix of emotions that a molar pregnancy creates. I did get some insensitive comments by close family after the pathology reports were done and I was found out to have suffered a complete mole, I got several "at least it wasn't a real baby", that didn't help at all - I thought I'd been carrying a baby, and I'd grieved a baby and then people were saying there never was one. I do believe it is lack of knowledge about the subject that creates such insensitivity. I have still to meet another person in the flesh who has had a molar pregnancy. Good Luck and rant whenever you want x

 

[Sarahwoo]

avgabcon5 I'm so sorry that you aren't receiving much support in real life, I hope we can go some way to making up for that on here I consider myself very lucky, my OH was wonderful and my parents (well my mum really) was too. After a while we didn't really talk about it but I kind of knew that I could talk if I needed to. Having said that I've never met anyone in RL that had even a tiny bit of the understanding that you ladies have - I think its one of those things where unless you've been through it you don't have a clue

I only told a few people about my m/c been a partial molar, just because I hated having to explain things. We told our close family, and I told my boss at work. When I was waiting for my second set of results I started feeling really sick, like morning sickness, and I freaked out at work thinking it was my hormones going back up. I explained the whole thing to him and he was wonderful, so supportive, so I was very lucky

Oh, and just to let you know that we have another rainbow baby on the thread! 'Wanttobeamum' (Lou) hasn't been on here for a while but she was the very first person I ever 'spoke' to who had been through the same thing. We got chatting on here just after she received her diagnosis (I was pregnant with Oliver at the time) and we have supported each other through many ups and downs. Well I am so thrilled for her, she gave birth to a perfect, absolutely stunning little baby boy last Sunday