Molar and Partial Molar Pregnancy Support Group

[Sarahwoo]

Hi Ladies,

I know there are not many ladies who have experienced a molar or partial molar pregnancy, but there are a few of us here on Baby and Bump so I thought I would set up this group where we can go to get - or offer - support to others going through a similar experience.

Here's my story in brief . . . . or not so brief I have been through the whole long experience and I hope my story helps those not so far along the line to see that there can be a happy ending, and that there is light at the end of the tunnel.

In August 2008 I got my first BFP . We had been TTC for a while and we were over the moon! Everything appeared to be going fine, and we reached the 12 week milestone with no obvious problems . . I remember feeling such relief that we had reached the 'safe' stage. However at my 12 week scan we were given the devestating news that there was no heartbeat - our baby had passed away at around 8 weeks. We were told that it was a missed misscarriage, that no one could tell me why it happened, but that it was just 'one of those things'. I chose to have an ERPC, and started the very difficult process of trying to get over what had happened. I pinned all my hopes on TTC and falling pregnant again.

Then in December 2008, two days before Christmas, I received a letter from the hospital asking me to call them urgently regarding test results following my ERPC. Over the telephone the nurse explained that the results had shown that my pregnancy had been a partial molar, and they wanted me to go in immediately for blood tests. We went in and everything was explained, blood tests were taken, and obviously we then found out that TTC would have to wait - I felt like just as I was getting back on track the rug had been pulled from beneath my feet again.

My blood test results came back in January and showed that my levels were still slightly raised - another blow for me since I had thought that because my AF had returned my levels would be okay. We had been told that if my first bloods were okay, my six month followup would start from the date of my ERPC. Because my results were still out the follow up wouldn't start until I had a satisfactory result - yet another blow as this added just over two months onto my follow up time.

My first normal result came quickly after that thank goodness and my follow up with Sheffield began . . . . . and from there on things went as well as they could. I focused on doing things that would help when we could TTC (my hubby and I both started going to the gym, he stopped smoking etc). I tried to keep busy doing positive things - like selling things on ebay and putting the money in a savings account which I knew we would appreciate if we ever got another BFP. We also did lots of things as a couple - we had more citybreaks than I thought possible!

My follow up officially ended in July 2009, and we started TTC right away. . . . though the first month we didn't hold out much hope as I was convinced we had missed the crutial days lol! We went on holiday and planned to start TTC properly in September 09.

On the drive home from our holiday I realised that my AF was a day late. I was quite annoyed as I had been charting to get a better understanding of my cycle and thought I had it cracked - so I was annoyed that my AF was late and that my cycle was not been as predictable as I had hoped. By the time we got home I was desperate for a wee and ran into the house as soon as the car pulled up. As I was running up the stairs I thought sod it, I know it's a BFN but at least it will stop me wondering, and grabbed a test without really thinking things through. I can't tell you how shocked I was when the BFP appeared - as quick as you like and so bright there was no mistaking it for anything but a BFP. Hubby came in and asked if I was going to help with the luggage and I said well, actually, no

So the first few weeks were very, very hard. I had a scan at 6 weeks and we saw a little blob with a tiny flicker of a heartbeat. Everything looked fine and we were told that there was no sign of another partial molar. Everything looked perfect. At nine weeks we paid for a private scan, after knowing when our first baby had passed away I was so, so scared that it would happen again. I sat in the clinic waiting room and cried my eyes out, I was so convinced that something would be wrong. But again everything was perfect - and now we had a little bean with a flutter of a heartbeat, and every now and then it wriggled At twelve weeks we had the normal NHS dating scan and now out little baby looked like a baby - and still no problems. It was only when I started feeling my baby move that I really calmed down and started to enjoy my pregnancy, but I really did enjoy it.

On May 8th 2010 - five days off a year after my first pregnancy due date - Oliver arrived. Wow! Boy was he worth the wait!

I didn't know about Baby and Bump when I had my PM. I didn't have anyone who had been through the same thing who I could talk to about what I was going through. Since joining BnB I have talked to girls going through the same thing and made a very good friend (hey Lou!!! ) and I hope I have offered that support that I would have so loved to have received.

Hopefully through this thread we can all help each other to get over what is a truely horrible and difficult experience, and come out the other side.

Please feel free to post about your experiences, your thoughts and feelings, and questions you may have, anything you like, and hopefully we can help each other through

 

[Jamaris Mummy]

Thankyou so much Sarah for sharing your amazing story and starting this group...Here I will share with you my story and our experience so far.

My partner and I found out we were expecting when I was 8 weeks along, and we were sooo excited...our first 12 week scan showed the baby was only 10 wks 4 days, so we thought maybe I had my dates mixed up and didnt think too much of it. This was my first pregnancy, but I must say from the beginning I was worried about my baby being healthy..2 weeks later we went again for the same scan, our baby was only measuring 11 weeks, and the sonographer asked me if I had my bloods done yet..I knew then and there something was very wrong..my nuchal translucency results showed our baby had a 1 in 168 chance of having downs syndrome, so we were referred to have an amniocentesis done to be sure. Thursday, August 26, 2010, the amnio showed our baby had fluid on its lungs, heart, and all around its head..I was told this was not normal and the drs were gravely concerned for my babys health. The next day we received the FISH results, our baby boy was triploidy ( 3 chromosomes instead of 2) and I was having a partial molar pregnancy. I was 4 months along. There was no way I could continue with the pregnancy, my drs told us our baby would not survive outside my womb, and his heart was expected to stop beating in the next few weeks, they also said my baby boy had to be delivered, otherwise my organs could start shutting down in the next few weeks. I had been very sick from 9-15 weeks, but put it down to morning sickness & i didnt know any different as this was my first pregnancy. I later found out I had ten times the normal amount of HCG in my blood, meaning I had morning sickness x 10.
Saturday morning I was induced and delivered our beautiful baby boy Jamari, Sunday morning at 4:40am. This was August 29. We were completely broken hearted. I now have bloods tested every monday, the day I delivered they were 430,000, im now down to 216 and cant ttc for another 5 months. We are going to see a geneticist October 14th to find out more. Partial molars are so rare and so scary, but Sarah your story has given me some hope that there is a light at the end of the tunnel, Im just so scared it will happen to me again..I could never say goodbye to another baby its the saddest thing in the whole world..big to you, your angel baby and beautiful boy Oliver xoxo

 

[Sarahwoo]

I'm so sorry to read your story It is such a difficult time isn't it? Molar and Partial Molar pregnancy is so cruel. You chose a beautiful name for your angel

Its really good that your HCG levels have dropped so quickly! For me getting my first 'normal' result was the first time I felt 'lucky' - I know for some girls the nightmare does not end there but continues on with chemo etc. I felt so grateful that I didn't need further treatment and could just go on with the testing.

Where abouts are you? How do you find your care? In the UK we have two speciality centres and depending on where you live you are refered to one of the two centres - Sheffield in the North or Charing Cross in the South. For me everything was done with Sheffield over the phone, e-mail or through the post but you can also go for appointments and I think if you need followup treatment you have to go to them. I also saw a consultant at my local hospital quite often but I think she saw me more to ask how I was than anything, as her understanding of PM was quite limited. If I had questions I just contacted Sheffield, who really were fantastc.

I hope we can find this thread useful, it was so hard for me when I had my PM not knowing anyone I could 'talk' to. I didn't tell many of my friends etc becuase I just found it so hard to talk about, but when I saw friends who knew about my MC and they said 'but you'll be able to try again now and you'll be pregnant again before you know it' I would just smile and try not to cry, because I knew I had to wait.

Though going through TTC and getting pregnant again was super stressfull, having Oliver made it all worth while. I am still sad that I lost my baby. But I have Oliver, and I feel like I take nothing at all for granted. I was always afraid that I wouldn't be able to enjoy another pregnancy and I felt so sad that that innocence had been taken away - but I really did enjoy been pregnant with Oliver, I felt so blessed and after a while I relaxed and felt great - which I was so glad about.

How are you feeling at the moment?

Lots of love and hugs xxxx

 

[want2beamum]

Hi Girls
Firstly i want to say thanks to Sarah for setting up this group!
She has been amazing though everything ive been through,giving advice and always being there.She has also become a fab friend that im lucky to have.
Jamaris Mummy,im so sorry for what you have been through,its such a hard thing to deal with and like Sarah said so cruel.

Heres my story:
I got my bfp in Oct 09, DH and i were over the moon,it was our first,but it was very short lived.
At 7 weeks i had some bleeding,was sent to the epu for a scan.
All the scan showed was tissue,they told me i had had a mmc,i waited it out for 2weeks went back for another scan still the same lots of tissue,i went for a DnC that week.
After everything i just felt numb i went back to work and tried to just carry on,it was so hard.But something was wrong id been bleeding on and off for 6 weeks post DnC and still had a positive test.The doc sent me back to the hosp and thats when my molar preg nightmare started.
They told me i had had a Complete molar pregnancy,they didnt know much about it so said they needed to wait and speak to sheffield.
They sent for for another scan anyway,and this time they were saying they could see something near my tubes,they said they had to take me in incase it was an ectopic preg.
I knew it wasnt i hadnt even had sex since everything so there was no way i could be preg but they would not listen,they took me into hosp and have me a meth injection which would break down whatever it was.This was over xmas and new year,Great!
Went back to the hosp a few weeks later with my hubby and we questioned the ectopic because we knew they were wrong.
They admitted i hadnt had one,and it must of been some tissue from the mp!
They put me through all that added worry for nothing and it was just because they didnt know enough about mp to know hcg stays high for a while.
Anyway the injection got my hcg down,because it was just like a chemo shot, and then i was put under sheffield for cmp!
My levels came down slowly and i didnt need chemo.
I finished my follow up and got the all clear in April this year.
We have been ttc for 2 months.
This experience really has scared the crap out of me and im terrified,but i have to have hope! And i really hope next time is different and i get the baby i have wanted for so long.
Love to all
Lou xxx

 

[dan-o]

Hi sarah, thanks for setting this up

Hi Jamaris & Want2!

Sorry to read your horror stories, I feel awful for anyone who has to go through this

For those who don't know me, my name is Dan, I'm 33 (34 after xmas.. eeek!) OH is the same age.

We started properly TTC-ing baby number 1 in 2008.

Got a BFP after about 6 months of charting & OPK-ing. No unusual symptoms, no bleeding, no morning sickness.
A private scan a 7w flagged up the sac was a little behind on the dates, but a week later we had the HB & a small baby. Several scans later the baby eventually died.

I had a D&C at 12w + 4 (March 2009 by now) pathology diagnosed PMP, HCG fell then rose again, so I had 2 months of chemo at CXH. All good & I got the all clear in September 2009.

Started TTC as soon as I'd been through the chemo washout period of 3-4 months (october 2009 I think).

Fast forward to July 2010, I got another BFP, but MC a week later. HCG right back down to 1 within 2 days, so not another molar thank goodness!

We are now under a FS as we have found out we have a low sperm count.
I'm starting clomid on my next cycle, to hopefully boost things!

Hoping I will finally get to be a mum one day!

 

[Sarahwoo]

Hi Ladies! :wave:

So sorry to read your stories . . . I hope we can all help each other

Lou you have helped me too, helping you has helped me come to terms with what happened

dan-o fingers crossed for the clomid!

Jamari's Mummy how are you doing honey?

xx

 

[Jamaris Mummy]

Hi everyone
Its bittersweet meeting you Im sorry to hear about ur sad experiences
Want2be, all the best with ttc, any luck yet? I cant wait to be in ur shoes
Dan-O, as Sarah said good luck with the clomid, a little prayer will be said for you tonight
Sarah..Im doing okay.. 1 month today since Jamari left my tummy and went with the angels...today was pretty bad I had all those millions of questions rolling around my head again...Just wanting him back, and forever wondering why it had to happen to usI miss my little guy!!
Im also having trouble with my sister in law..she came to visit when I came out of hospital but hardly came near me and didnt even ask about our baby! that was 3 weeks ago havent seen her since N now she msging me panicking that I dont like her etc, her fiance, (my brother) well I havent seen or heard from him in 4 weeks, and im just so sad for the way they are acting, not even asked about their nephew! I told her I was sad that hadnt wanted to know about Jamari or even sent a txt once in while etc..Is this normal for me to feel like this? Am I overeacting or are they being unfair? I feel so angry the last few days too...my moods are jumping up and down! Its such a hopeless feeling..my hcg levels are droppping quite quickly..they are now 86.. and I have two lots of testing next week and a specialist appointment next friday morning..It all feels like one big nightmare..And amongst all that Im so scared for how often I cry and get moody Im scared I will make my OH leave me Ive talked to him about this and he said he loves me and wants to be with me forever but I feel he deserves better..Everywhere I turn in my life this pregnancy has changed everything..its hard to be happy and its hard to think positive..anyways..these are my thoughts for today..

 

[Sarahwoo]

I'm so sorry hun, what an awful month you have had

I'm sorry your sister in law has upset you, I think quite often people just don't know what to say, and rather than risk saying the wrong thing, they don't say anything. Its silly because all they need to say is 'Im so sorry', and let you know that they are there if you want to talk. Hopefully she will realise that she needs to be there for you now.

I think its very, very normal to be angry, confused, sad etc - it all happened so recently for you. Your OH sounds lovely, I'm glad he is supporting you. I'm sure the last thing on his mind is leaving you!

i found that keeping a journal really, really helped me - I wrote in it most days and it really did help me to deal with my feelings. It was also good to look back and see that I was dealing with things better, even if I didnt think I was.

xx

 

[want2beamum]

Hi Girls
Dan-o- Im so sorry to hear about your mc,but glad it wasnt a mp!
Hope your ok and ive got my fingers crossed for the clomid! You will be a mummy one day!

Jamaris mummy- Everything your feeling at the moment is totally normal and is part of the grief. I think take it day by day and go with each emotion dont ever feel like something your feeling is wrong,its not hun.
Its such a rollercoaster, some days can be really low and others a little bit better its all normal.
I remember crying so much sometimes and then other times i felt so angry i just could not cry,i was just so mad and kept thinking why me!
When my best friend had her baby i put on a brave face,came come to dh and just broke down,he ran me a bath and i just sat in it crying until it went cold,i just felt so low.
I still have days like this now,just not as many.
I think friends and family just dont know what to say so they tend to avoid us,my sister was the same she would avoid me and not bring my baby niece round incase it upset me.
Other people can be quite harsh and say things like lots of people have miscarriages,just move on and try again! That always hit me hard.
I didnt tell many people that it was a molar apart from family.
I think i felt abit ashamed in a way,i didnt want people trying to understand.
Please dont feel like your not good enough for your OH,remember that hes grieving too,hes prob just showing it in a different way.
I know my dh just seemed to move on in a way and didnt really talk about it,i felt such a mess and at times didnt feel i had his support.
It was only about 6months later he broke down,when i asked him why he didnt talk about it,he said it wasnt just you that lost a baby,i think you forgot about my pain,he was right i did abit.
My life has definately changed since the mp,i feel ive lost abit of myself,i feel abit empty.But we are bound to feel this after suffering a loss.

Sarah- Ahh im glad i helped you too! I dont think id of been brave enough to do the Vegas wedding if it wasnt for you and your advice!
If we lived nearer id be round for a brew and a chat,lol.

I hope we can all support and validate each other through this!

Lots of love to all

p.s. I cant use the lil smiley icons on my laptop thats why there are none,lol!
xxx Oh yey i got a lil smiley face to work

 

[Sarahwoo]

Lou

I sooooo wish you lived closer because it would be soooo nice to have a brew and a chat Why don't you move? Yorkshire is very nice you know

And thats a warning girls - if you are not married already beware that I might talk you into getting married in Vegas

I think its so hard to tell people about a molar / partial molar because people just have no idea what it is, its so rare. So you have to then start explaining what it is and tbh thats the last thing we need to be doing - but it does come with soooo much more than a non complicated m/c because you have to deal with the followup, waiting to ttc again etc. MC is always going to be utterly awful, molar and partial molar just seem to rub your face in it, if you know what I mean.

Lou when you say that you feel like you've lost a bit of yourself, and like you are a bit empty . . . . I know what you mean and I did feel like that. But don't think you will feel like that for ever - Oliver has made me whole again and I feel like I have made peace with my body. I felt so let down, so dissapointed with myself, so disconnected with my body for letting me down so badly. But now its shown me what it can do, and we've made friends again and I love what my body has done to make Oliver and provide everything he needs to make him into the lovely little guy he is. Could do with there been a bit less of it to love now though

xx

 

[Jamaris Mummy]

thanks so much Lou and Sarah...you both have helped me thru these days hugely..it seems no matter how you try to not think about whats happened to you and get on with your day u always seem to run into something (or lots of things in my case) to remind you. Like today I went to get a piercing in my ear and was sitting in the salon and a lady (her name was also kate!!) bought her newborn in to show off to everyone..it took all my strength to sit there and try and ignore them all gooing over the baby..and then the guy at the bank asked me how far along I was!! I had to tell him we lost our baby and he was so embarrased and it made me sad then I found myself trying to make him feel better coz he felt so bad for asking..gah! its everywhere I go..guess it is only early days..starting to freak a bit about the geneticist appointment in case there were any more complications..but trying to settle myself down..
I sooo know what you mean about ur relationship with ur body! I hated my body the first few weeks and tryed to starve it coz I thought my baby wasnt even alive how dare my body want to eat! Its so crazy what you think about..Im still mad at my body as I feel like it has betrayed me and my baby and feel like it wont ever be able to produce a healthy bub! Well..i must be off but thanks once again SO much!! U r angels on earth! P.s Sarah my oh would love to get married in Vegas I think!! lol

 

[Sarahwoo]

Kate

It does seem like babies are everywhere doesn't it? When I was going through it all I booked myself a hair appointment, i thought I'd get my hair done and feel a bit better about myself. I booked at a different salon as my normal salon had known I was pregnant and I didn't think I could cope with telling them what had happened. So I went for my appointment and the girl doing my hair was pregnant and due about a week after I would have been She was so lovely but I cried so much when I got home!!

Try not to worry about the genetisist . . . its best to know about these things and I'm sure it will be okay. And make sure you look after yourself - Jamari wouldn't want his mummy to be ill and you have to be on top form for growing his little brother or sister in a few months time!

xx

 

[Jamaris Mummy]

oh lovely Sarah!
Thats so sad about what happened at ur hair appointment..I too just got my hair done this week for the first time since it all happened..thankfully nothing happened there as I too went to a salon where no-one knew me so no-one knew to ask..the things we angel mummies do hey..
yes it does seem like babies are everywhere..and at first I told myself I was just noticing them all becoz of what Ive been thru but now its just plain scary coz they literally are EVERYWHERE!! Its so strange...

What u said about Jamari not wanting me to be ill my mum says that to me all the time and its such a nice thought Tonight I have been thinking alot..im not sure if I mentioned it in my story or to you before but my drs believe my pregnancy started as twins..so its possible I lost two babies..and tonight I have been thinking about that..and Ive been thinking oh my gosh what if there was another little baby and I havent even thought about that like how to grieve/deal with that thought..and I truly believe..or know..deep down..I was pregnant with twins. Trumaine my oh always said from the beginning I was having twins..his dad is a twin and they are all thru both of our families. the midwives told me the other little one didnt survive to form an actual baby and absorbed into my placenta to create the molars in my tissue...so technically I guess there wasnt another baby..but at the same time there could have been..if that makes sense.

There is soo much to think about..as im sure you'd know! and yes thanku I am trying to keep positive about the geneticist appointment..counting down the days actually.
Going to see my sis in law tomoro she wants to talk to me over coffee about it all..not sure if I actually will I might be "too tired" after work...

How are you doing hun? And yes trying to take care of myself for the next one..I cant believe its been a month already!! only 5 months to go before ttc again..Im so grateful to have you to talk to Maybe our babies met in heaven and bought us together..I like to think so.

 

[Sarahwoo]

Just popping in quickly before bed! It's my birthday tomorrow . . . I'm going to be 30 . . . . argh!!!!!!!!!!!!!

Kate how are you? Did you see your sister in law? I hope it went well if you dod meet her

I'll reply properly tomorrow xx

 

[dan-o]

Happy Birthday Sarahwoo!!!

 

[Jamaris Mummy]

Ohhh hope you had a very happy birthday Sarah!! Did you do something special for your 3oth? Im doing okay...you know how it is sometimes your alrite then other times your drowning in it all...but overall Im starting to feel ok. I did see my sis in law..she was very defensive about why she hadnt been in contact with me she just thought i wouldnt want to talk about it..it made me mad that she would assume that but basically I just sat there and nodded and didnt say too much because shes so stubborn she wouldnt understand anyway...but anyway things are somewhat normal with her again..Im her matron of honour in her wedding next october so I guess I cant stay mad forever!

 

[Sarahwoo]

Thankyou ladies, I did have a lovely birthday thankyou We went out for lunch with my mum and dad, and my sister who came up from London which was really nice. We had a lovely meal although Oliver was tired and cried the whole time! Bless him, he was so tired but it SO nosey he wouldn't go to sleep! So we all took it in turns holding him and walking about to stop him crying Never mind, the food was still good and its just one of those things! Other than that we had a nice quiet day, which was lovely

Kate I'm sorry your SIL wasn't more understanding. I think I would do the same thing, its not worth wasting your energy been mad . . . . I guess there will always be that knowledge now that she wasn't understanding but thats her loss and not yours. She isn't worth getting mad over, you have plenty of other things to use that energy on

xx

 

[want2beamum]

Hi Ladies
Hope everybodys ok!
I havent been on for a week or so i swear work is taking over my life,and ive got a poorly husband-man flu thinks hes dying of it!

Sarah... Happy birthday to you,happy birthday too you,happy birthday to Sarah,happy birthday too you! Hip hip hooray! I hope somebody pulled your hair 30 times for good luck,lol! Really glad you had a lovely day!

Dan-o... Really got my fingers crossed for this cycle for you!
I got my AF today,abit gutted as def dtd spot on this month... Had really bad ovulation pains too.
Oh well onwards and upwards to the next cycle!

Jamaris... Hope your doing ok hun? Its so normal to have good and bad days,and to think things over and over.
Sarah suggested to me to write a diary of how i was feeling it really helps,i look back now and i can see how angry or upset i was,it really does help to get your feelings out! When i was really mad i would write in capital letters,lol.
Its such a rollercoaster of emotions and its so bloody hard!
But we are here to hold your hand every step of the way and
I hope you find the support you need here and know you aren't alone.

Lots of Love
Lou
xxx

 

[Jamaris Mummy]

Hi girls! Thanks so much u both r beautiful! I can't get on here much for the nx few days only on my phone as our laptop is playing up and won't connect to the Internet! Great timing. Oh I'm doing ok! And yes I am looking for a diary at the moment I think I need to write it all down to get it out I have my pregnancy journal I wrote in every week when I was pregnant and now it's jus full of I miss yous and I want u backs alongside pages that tell u what ur babys up to that week and how he's growing etc:'( so I'm going to get a diary thanku for suggesting that to me I'm sure I will be using plenty of capital letters too! Well I have news on my hcg levels they r down to 42 as of yesterday and I have them done again tomorrow before seeing the obstetrician on Friday.. I'm just itching to ttc again! Argh! It's frustrating having to wait isn't it girls. Was there/is there anything u did/do to prepare itself or occupy itself for ttc? I'm so happy u had a nice birthday Sarah, bless little Oliver lol. Can I ask ladies how soon after ur losses did u get ur first period? It's been nearly 6 wks since my loss and I stopped bleeding about a wk n a half ago and not sure when I can expect my first period? I hope it comes soon! Well I hope u r All doing well girls thanku for holding my hand! Luv to u all xo

 

[Sarahwoo]

Hi Kate!

Its good to hear that you are doing okay Really good news about your HCG levels! Def buy yourself a lovely journal, I called mine my ttc diary as I wanted it to be about looking forward and not back. It really did help.

Im not sure how long it was before I got my period - sorry! About a month maybe? I know my levels were still raised.

To help 'pass the time' when I was waiting to be able to ttc again this is what I did:
* Tracked my cycle so that when we started ttc I could spot my fertile time without getting obsessed with opks etc.
* Sold stuff on ebay - this did two things, firstly it made some room for all the baby stuff, and secondly I put the money into a savings account which has been sooooo useful
* We both joined the gym
* Steve stopped smoking
* We did some things that its hard / impossible to do with a baby - ie we went to London a few times and looked around the art gallarys etc. We also went on holiday

Lou got married

Lou Sorry to hear that this wasn't your month Fingers crossed for next month!!

Dan-o hows the clomid going?

x