Complete molar pregnancy

[lisalou29]

Hi all,
I found out 5 weeks ago that my 14 week prgnancy was infact a molar pregnancy. At first I had no idea of what the doctors were saying to me and what had happened to my baby??!! I had to have a D&C two days later and when I came home I was still in a daze of what had happened. I didn't sleep very well that night so decided to get up and do some reading up on the net about molar pregnancy's, I was really shocked to what I found. It's the hardest thing to lose a baby and i felt cheated by mother nature as my body was telling me that I was pregnant but there was no baby! but I grow a placenta which fed a tumour. I still find it hard to come to turms with as I bounded with something that was never there but my body told me I was pregnant. Im still having blood tests done every two weeks to make sure my levels are coming down which they are thank god, I dont know how the women that have to have chemo after having a molar pegnancy do it. I know things will get better but its going to take time.
Lisa

I'm so sorry for your loss Lisa. I cannot comment on a molar pregnancy, as it's something I've never experienced, although I know there will be people out there who will have some good advice for you and I didn't want your post to go unanswered.

I completely understand your feelings of bonding with a baby and your body tricking you into thinking you were pregnant even though it had gone wrong, as I had a blighted ovum. Obviously this is not the same, but the feelings of loss and being cheated out of something by mother nature are all too familiar.

Give yourself time to grieve and look after yourself. Hopefully there will be someone on MN who has been there and who can offer you the support you need soon.

Brkenbits
Thank you for answering me, im really sorry for what you have had to go through yourself life can be very unfair!! It is really hard because molar pregnancy's are so rare thats its hard to find someone that has gone through the same thing, I know all the info that I need to know about MP but sometimes its just nice to talk to someone that has gone through the same thing. xxxxx

I don't personally have experience of this, but my MIL had a Molar pregnancy nearly 40 years ago before going on to have DH and his sister without any trouble.

Hi Lisalou9

Just wanted to see if you knew about this website.
www.molarpregnancy.co.uk/

I received the most amazing help from here after I miscarried and it was suspected partial molar.

I also received free support via email from the specialist molar unit in Charing Cross London even though I am an expat living abroad (I never moan about the NHS, I think it is amazing!). If you have any doubts or questions they have a 24 hour help line service. Don't hesitate to contact them.

In my case, I had placental cells regrowing for a month after a medically managed mc but lab tests after a ERPC thankfully showed that the cells weren't molar . I still don't have an explanation for how this actually happened, but I know about the fear of chemotherapy, the shock of learning about such a strange condition and on going worry about your health and fertility. All at a time when you are grieving!

I can also recommend this book
My Molar Pregnancy
www.amazon.co.uk/My-Molar-Pregnancy-Collection-Diagnosis/dp/0615212255/ref=sr_1_1?ie=UTF8&s=books&qid=1281559219&sr=8-1 which contains stories of other women who have suffered this condition. Its quite nice not to feel like you are the only one.

I wish you a speedy recovery, if your levels are dropping fast that is great news.

hugs xxxx

Mummy abroad,
I did join the MP wed sight and found them not much help!! I think it was because i had children and alot of the women on there have been try for babies. I just needed someone other than the doctors and my husband to talk to. I had a MC last oct at 5 weeks and it was easier to move on from that, but this is horrible the constant tests and the worry on weather I will have to have chemo is sometimes to much to bear!
I am lucky that I do have three beautiful little girls which they keep me busy but there is always times in the day that I just sit and cry. We were so happy when we found out that I was pregnant again, to then have it taken away with this horrible trick of mother nature is very unfair. The doctors have told us that once my levels are at 0 we have to wait for at least 6 months to try again I know its not long to have to wait and that some ladys dont even have that, but its killing me and I just want my baby. Thank for the wedsight for the book I have ordered one.
xxxxxxx

Hi Liaslou,

Sorry you didnt find them much help. I am a mum though and happy to chat! I have a two year old boy, born after a perfectly healthy pregnancy with zero problems I would love to have a second child, I still havent been given the all clear by my doctor to start ttc, but now that I know I dont have molar, I feel like ignoring him!

What are your levels now? Sounds like you are in a very good position if they are saying 6 months wait (some will say a year) they obviously think you are responding really well. Have you been referred to one of the molar units like Charing Cross or are you being looked after by your GP?

My pregnancy had also gone to 14 weeks when I found out (although the embryo was only 8) I think there is a big difference in the emotional and physical investment when its gone that far. Of course you are going to be grieving much harder than the first time. I know its very hard to deal with the emotional side when you are so worried that the physical side is not over. You need to be extra specially nice to yourself, lots of treats and extra cuddles with the girls.

Sitting and having a cry is definetely allowed too! What would happen to you if you bottled it all up and DIDNT let it all out?

take care xxx

Hi mummy abroad,
Im under the care of Charing cross but I live in somerset so im seen in Yeovil and they send all my bloods to london. At my last bloods they came back at 21 which is fab, I have to go to Yeovil tomorrow to do another test so should get them back next week! I really really hope they are 0, then my levels have to stay at 0 for six months before they give you the all clear, thats the hardest thing!! I just want to start trying again but then I have this horrible thought that I could have another molar and that could start the cancer off. I had never even heard of a molar pregnancy before and i spos you wouldn't have unless someone tells you. I just worry that if we did get pg again that I would worry myself so much, because the doctors said that they cant really see a molar until 10 weeks plus which is crap. Im hoping that once my levels are 0 I can start to get back to some sort for normal thinking. I think I need a holiday!!

Thank you so much for taking the time to answer me as I didn't have much luck with the other sight.
xxx

Hi lisalou,

If you want I have a really good article all about molar treatment that I can send you. Tried just now by MN says you are "uncontactable" settings? Its got much more in it than you will find on the internet. I was sent it by a doctor at Charing Cross.

I think it will reassure you a bit because your numbers sound really good. Lots of women start out at 10 or 20,000! I think when your numbers are low and dropping fast you are very likely to get the all clear to ttc quicker. (dont want to get your hopes up but some women only have to wait 3 months in the end.)

I think it helps to get as much info as possible, I went beserk on the internet looking at everything, like you I had never heard of it and I was so scared because I was abroad. I think it helps a lot to make all your family read stuff too. They must be scared for you as well.

My numbers went 292, 50, 9, then 0 (or rather not dectable, as less than 5 is not detectable) The scary bit for me was that I was sent for xrays on the day I was told, and they found a lump on my lung. Everybody thought it had spread in a cancerous way already (it had been two months since my miscarriage) I had an ERPC at that point and when they examined the tissues they told me it WASNT molar. (but placental cells had regrown after the miscarriage) I still have to get the lump on my lung checked out - looks like it was a red herring, hopefully its nothing serious. Its hard not knowing what really happened. At least when it was partial molar diagnosis I knew I could get it treated.

As far as ttc again, I am waiting for my first AF and then I can start, but to be honest, now that the physical stuff is calming down I am only just beginning to deal with the loss emotionally. I am not sure if I am really ready yet. My first reaction, like yours was just to replace the baby I'd lost as quickly as possible. (and to you it was a baby, you had no idea this wasnt a normal pregnancy) But I think you really do need some time to accept the loss first, and any pregnancy you start will be a new thing entirely. Take the time to grieve and say goodbye

If you did get pregnant again and worried about another molar you could always ask for your HCG to be monitered in the early weeks. If it doubles every two days its normal pregnancy, if it goes higher it is a sign of a mole. These tests arent done rountinely though, so most women wouldnt know unless it shows up on a 10+ scan.

Anyway, better stop, I have written a book! (and very therapeutic it has been too!)

Hopefully you only have one or two tests to go until 0. Fingers crossed for you.

keep me posted

xxxx

I just did a search and found the article online

onlinetog.org/cgi/reprint/10/1/3

if you look at all the graphs and charts, your numbers seem to be in the lowest range (i.e. best case scenario)

hope this helps

xxxx

Hi
I had a molar pregnancy in 1999(aged 23). Has a msc at 8 wks but they confirmed molar a few weeks later. I had a meeting with pre-pregnancy advisor who explained this strange condition(badly! lol).
However was quite poorly mangaged after that.I was sending samples away for testing but still having staining and severe nausea(classic symptoms). Eventually told me were going to do another erpc only to cancel it an hour before due to have it done. Since found out this was because they knew my levels were sky high(150,000) and needed urgent chemo.
In the end was all quite dramatic as got a phone call while at uni telling me was goin to london for chemo nect dsy. Got taken down there in air ambulance(they let my mum come with me). Had just over 6 months chemo in the end with lots of complications but got thru it.
I think prob the most helpful thing I can tell you is that I have since gone on to have 3 lovely children.
Gd luck but with the numbers you quoted of your hcg level then you sound like are well on way to being able to try again soon.

Sorry had a few bad days, didn't want to get up or do anything!! :(

I just rang Charing cross hoping to get my latest test results and they are not in yet Grrrrrrrrrrrrrrrrr!! I so want them to tell me that they are 0, I am the most inpatient person ever. Thank you so much for sharing your stories with me, it's nice to know im not alone, sometimes you just need someone to talk to. xxx

The waiting is horrible, I used to phone the hospital two or three times a day when mine were due (this doesnt help! I don't recommend it at all!)

Will keep my fingers crossed for you, if its not zero this time, I am sure it will be on the next one, you are very close .

xxxxxxxxxxxxx

hello, i had a mp in 2003, (when i was living just down the road from yeovil!).

Dh and I had been trying ttc for about 5 years, and were on fertility treatment, so were devestated when it became apparent that I had had a molar pregnancy.

I had 2 erpcs and then collapsed at work one day because of an enormous blood loss. I was transferred to charing x, because my hcg levels had risen again, (they were over 250,000). I had to have a lung xray and brain scan, and was started on chemo. I was in London for 3 weeks, and then my chemo was done at home by district nurses.I had chemo for 6 months, then when levels were down to about 50, they started to rise again, and I had to go back to London, where I was put onto stronger chemo. After 2 weeks i was sent home, and chemo was done at taunton hospital, 5 days on 5 days off. I had 4 months of this, and then finally my levels were down to zero. I wasn't able to ttc for a year after chemo, and was terrified of trying again, but my amazing consultant at Taunton, just filled me with confidence, and the first time we tried again I became pregnant with dd1, a year later I had dd2, and 6 weeks ago I had ds. I will be in follow up for the rest of my life (3 urine tests a year), which I find comforting, the year following chemo, I had to have 3 blood tests a week!

Charing Cross were amazing when I was being treated, my stay there was horrible, but the follow up team were really supportive, and helpful.

It is a scary thing, because it is so rare, and obviously can be very serious, but the system they have in place to deal with it is amazing.

If you need to ask any questions or just have a panicky moan about it, please ask away.

Take care of yourself.

Hazeyjane,
OMG, you really had a bad time with your molar, I must admit that I feel very lucky in one way that my levels have come down really quickly and that Iv not needed any other treatment. The thought of chemo scares the hell out of me and having to be away from my family. I am so happy that you now have a lovely family which gives me lots of hope for when I get the all clear (which im hoping for march 11). I know I have three beautiful girls but as I have now lost two babies I am aching to be pregnant and hold my baby. I just want next year to hurry the hell up, but at the same time Im soooooooo worried that I could lose another baby or even have another molar or have a normally pregnancy but be told that I have molar cells growing and will need chemo after prgnancy! Life is never straight forward is it!!!!

Thank for answering me it means alot. xxx

Hi lisalou29

just checked back in to see if you got your 0 yet. Fingers crossed for you. xx

Hazeyjane, you are very brave!

Hi mummyabroad,
My result was 6, charring cross said that I would prob need one more set of bloods and then be six months follow up and then the all clear. So with any luck its gunna be march next year to start trying again. Hope you are well hun. xxxxx :)

6 is great news I am glad they are not making you wait the whole year either.

I am like you itching to be "normal" again, for me it means waiting for AF, still not come 6 weeks after the ERPC.

waiting is not my strong point.

xxxxxx

lisalou, 6 is good news.

at being brave, I didn't feel brave at the time! with stuff like that, everything feels out of your control, so you just do what your told. i think my dh was brave though, he as amazing.

hope you and mummyabroad are doing well.

Just had another blood test done hoping this is the last!! Just had enough of it all now, I hope you are all ok. Im always here if you need a chat.
xxxxx

Hang on in there lisa! You are so very close now

I am still waiting on AF (or maybe BFP, I have been ttc!)

Hope they dont make you wait too long for the results.

everythings crossed for you!

xxxx

Phoned up for my results today and they have only bloody lost them!!!! AARRHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!
Take's the bloody piss, I just want to get on with my life. I wish I could skip the next for months so we can ttc again its gunna take forever. Im so fed up with people saying to me that I have three children and it wasn't meant to be, I know I have 3 girls and love them all so much but Iv lost two babies and thats killing me. We always said that we would have four so to plan for a baby and then lose it is just crap. Sorry to have a moan but just needed to vent out.
xx

Oh no! How rubbish!! Just what you dont need

People do say rubbish stuff dont they? I found a nice link a while ago with some good retorts, will dig it out for you.

I know you are going through hell at the moment, vent as much as you can, that way by the time you get your physical all clear, you will also be ready emotionally.

I wont have been held back as much as you, but I have still been stuck with the physical complications longer than most (if I get AF soon, it will be over 4 months from start to finish) If there is a bright side its that we do get extra time to process the grief. Lots of women jump out of one miscarriage straight into ttc and find that the grief comes back to bite them later.

big hugs to you my dear xxxx

Here is the link:
scroll down to where it says "People say awful things"

www.pregnancyloss.info/dealing_with_others.htm#noone

Finally got my results today from Charring cross, my levels were 6 and now they have gone up to 8!!!!!!!!! They said that I shouldn't worry about my hcg level going up by this much as sometimes it happens to some women and then all of a sudden it will drop down. So Im not sure how im feeling at the moment, I just want this to be over but it feels like its never gunna end. sad

Hi lisalou,

You must be disapointed because its not

Chocolate defo helps, thank you for always chatting to me, you really have helped me get through this horrible time even tho its not yet over! I find it hard to talk to my friends as they dont really understand what it is im going through and my hubby has been fantastic but its not the same as talking to someone that knows what im feeling. Thank you so much. xxxx