Partial Molar Pregnancy

[izzy4real]

I feel I need o write my story down, just to get it out and stop being superwoman and start grieving, I just don't know ehat to do. My story..
My scan at 13 weeks showed no heartbeat and the baby had died at 8 weeks, a missed miscarriage.
The day before the ulrasound, I got a call from my doctor saying I had a werid antibody result in my bloodtests & I needed to be re-tested as it was an anti E which meant the baby possibly had a different blood type and I was tryig to fight it. After the ultrasound, result, all I could think was it was my fault, my body had done this.

My curette was a difficult day, 4 days later. Got to hospital at 10am, sat there till 4pm. Checked every hour what was going on, and all we heard was "delays"or "emerganicies". Got to the ward at 4pm to hear, where have you been? We've been waiting since 10am for you. Anyway, theatre was at that stage at 6.30 with all the delays. They had to insert to tablets so you dilate for the surgery. Surgery got delayed till 9pm. At 8pm I started craping and bleeding, heavily. Theatre got delayed till 11pm. Bleeding and cramping got worse. Theatre got delaed till 1am. Now full on contractions. Nurses got fed up and took me down an 12.45pm. Next day was so dizzy and weak from blood loss, blood tests taken to check for blood transfusion, came back "borderline" went home at 2pm. Day surgery was supposed to be 10am, home by 5pm!
The pathology results were so not what we expected. We expected the antibody to be the cause, but no. It was a very rare partial molar pregnancy. (My dr has only ever seen 3). A molar pregnancy is where the diving cells misshap, and the placenta forms like a tumor and grows like a cancer. But it doesn't end there. The curette I had needs to be followed up with blood tests to enure all was removed (see if I have any HGC hormone levels ). If I do have any levels, it means the placenta is growing back and another curette is required. It can also spread to other bodyparts like cancer, but is 100% treatable. and is treated with chemo. Even though it is very rare, there is a 1 in 100 chance of it happening to future pregnancies. Cause is two sperm fertalizing one egg.
The anti E found in my blood was originally thought to be the cause to to baby having different blood type, was only a small amount, so it still can affect future pregnancies, but worst case should be a jaundice baby with the levels I have.
I just had my blood test to check the hormone levels are hopefully zero. If they are low, it can men they are still dropping from the pregnancy an need to be repeated to ensure they are coming doen and not going up, as going up would mean the placenta is regrowing. Ibawled my eyes out the whole time.
I came home to my 2 boys who are the light of my life, and people say I am lucky to have them, which yes I am so lucky, but it's also sad, because I know what I am missing out on.

[belle75]

Oh Izzy! I don't know what to say but lots and lots of , hun.
I can only imagine what you must be going through right now. you've done the best thing by sharing it on BB. There are so many lovely women here who can offer their kind advise and a shoulder to cry on. I am so sorry this has happened to you Take care of yourself and if you need to chat, just yell.

[Snacks]

I'm so sorry for your loss, and sorry that the medical side of things isn't over yet. It must be so difficult that things are so up in the air.
I really hope you find the support you need here. My thoughts are with you.

[diannescruffy]

Hi,
I am so sorry for your loss and the ordeal you have been through.
Take care of yourself. Big hugs.

Regards,
Dianne

[Lani81]

hey hun,
i am another rare one who has had a molar preg. My story is very similar. Missed miscarriage at 12 weeks. I had my d&c last november (tho my experience was alot better than yours - mine all went very smoothly apart from the infection i got after, but that was easily cured with some antibiotics.) Pathology results came back partial molar.

Hun, dont expect your hcg level to be zero. It wont be. Mine took 8 weeks to get to zero, and that is reasonably quick for a molar. You'll probably have weekly tests until it gets down. Dont be concerned. as long as every test shows a drop in numbers thats all they look for.

I dont know how much your doc has told you and i dont want to scare you, but they do suggest (very strongly) a waiting period before ttc again. Its normally 6 months for a partial mole. I waited 10 months since my levels got to zero and i have just found out i am 4 weeks pregnant. I am very scared about it being another molar, but trying to be positive.

You will get thru this hun. And u already have two healthy boys so u will go on to have another baby. Izzy- please pm me if you want to talk more. I know some good online support groups that really do help.

Stay strong

[kristi14]

That sounds very full on and like it was an enormous amount for you to absorb.

Sending you all the strength you need right now

Thinking of you.

[izzy4real]

Thank for you support ladies, it's good to kow you are out there.

Lani. Thankyou. My dr did say wait about ttc, but this baby was unplanned (but much wanted), so we plan to wait a year or so anyway. So it took 8 weeks to get to zero? hat were you results at the first test?
Congrats on your pregnancy, I can understand you being scared, but my dr did say next time they can do constant early scans and determine very early if it's a partial molar or not. I hope this is an option for you and your mind can be put at ease early on, as I believe it's rare to happen again - even though it's rare in the first instance! I hav't seen any online support groups??

[dd0207]

Welcome to BB hun. This is an amazing place and you will find lots of love, support and advice here. I am so very sorry for your loss. What a horrible ordeal you have endured and can't believe the mix up at the hospital... how infuriating! I hope your body treats you well and you hit zero very quickly.
Sending you lots of strength during this time of healing and I pray you will have a successful pregnancy next time around with a beautiful little bub to take home.

Big hugs

[Lani81]

izzy - i had my first blood draw about um 3 weeks after my d&c and it was 230. The next week it was 12. I was stoked it was coming down so quick, but then it took like 5 weeks to get from 12 to under 5. From what the girls in the support group have said, its pretty common for the hcg level to slow right down once it gets low. But, also from what ive gathered from the support group, everyones levels varied greatly! As long as they steadily come down, thats all that matters.

Im going to pm you a link to a website and the support group. I think you'll find them helpful. I, for one, didnt get much information out of the hospital so ive done alot of research.

Im always around if you ever want to talk or vent.

[izzy4real]

Lani81 ; Thankyou so much. I actually found that site last night! There really is not much info around. My levels were 760 on Wed & 590 yesterday. Very slowly the doctor said, that's 2 weeks since d&c. Next test tuesday. were you sent for ultrasounds to confirm? Thankyou for your support, really appreciate it. Hope everything is going positivley for you. PS i had no idea how to send a private meaage, so thanks again for the info.

[Lani81]

no worries Izzy. Its actually good to be able to offer someone else some support. i know how lonely i felt when i had noone to talk to about it.

Your hcg levels sound good hun. Their really promising.If they keep coming down like that you'll be right as rain. Alot of girls are still up in the 100,000's 2 weeks after d&c. Let me know how you go on tuesday. No i didnt have any ultrasounds. My doctor at the hospital was very casual about it all (very annoying when your totally freaking out), but he basically said i didnt need further tests as long as my hcg levels came down steadily. He was only going to do more tests if they started going up again.

I did take myself back to my gp when my waiting period was up and ask for an ultrasound just to make sure everything was normal. which it was.

you can pm people by clicking on their name on one of their posts. it brings up a drop down menu where u can click to pm.

[izzy4real]

Thanks Lani.
I think the dr's are so casual about it because they know so little about it! My dr has only ever seen 3 others. Being in the 500's makes me feel positive then, if that's the case with others, thanks forthe info. 'll have to do a bit more reading, I was startin to go into bain overload...
I have now worked out that I was about 16 weeks, as my dating scan showed 6 weeks, when I knew I was 9. I was worried from then as it meant I'd taken the pregnancy test(s) before I was pg. Trust your intincts hey! What I don't understand is how the baby can stay in there so long without misscarrying naturally.
The utrasound after the wating perod sounds like a good idea! I'l keep that in mind.
I hope everything with you is going good, have they offered you an early ultrasound?

[izzy4real]

H Lani, levels 590 Friday, Only 581 today......Very Dissapointing.

[Lani81]

Hey Izzy, im sorry you didnt get the results you were hoping for...When is your next blood test? Maybe it was just a bit soon after the first one. What did the doctor say about it? try not to get discouraged.

You know, i knew from 6 weeks that something wasnt right,when i had mine. I kept telling people that i didnt think the baby had a heartbeat. i dont really know why i thought that, but i did. everyone kept telling me that i was being silly, first time mum fears and all that. But even at the ultrasound, before she even told me, i kept saying, it doesnt have a heartbeat does it? That whole situation really opened my eyes. I reallly realised that i need to listen to myself, and not let other people tell me tho know better..even if they are a doctor or have had 5 kids themselves.

Im 5 wks 3days today and im having my first ultrasound at 7 weeks1day. My gp is being really good to me. I think he feels bad he didnt pick up on it last time(tho how could he- hes just a gp, and has only ever seen one case 15 years before- i totally never blamed him). I feel better about it this time. im still not confident im going to end up with a baby at the end of it all, but at this stage, i dont feel the same as i did with the molar. Early days tho.

[izzy4real]

Hi Lani.
I spoke with a family friend who is a gyno. He said my dr is doing everything right at this stage. He also said because they are dropping slowly, they may do another curette or a small dose of the methotrexate, which is that chemo drug. My next test is Monday.
You know, it's strange you say that you knew, because I felt the same, although I never said it to anyone. I just didn't feel pregnant, even though my belly was growing. My dating scan at 9 weeks showed I was 5w5d, so I knew something wasn't right, as I was definately 9 weeks. This is why I know I was 16w at my 13w scan. I am now trying to think of something nice to do in the baby's memory, not sure of the sex, so don't know what to name it, might just be a nickname. Hopefully this will take my mind of all the testing.

I am glad you feel better with this pg, and I'm glad you are getting an early scan. You are right about listening to your body! I hope the scan gives you the all clear to start enjoying your pregnancy, because I can imagine how you must be feeling right now, but the next few weeks will hopefully go by quickly for you, so you can stop stressing. It must be very difficult. I know all the think positive stuff sounds cleche and you are sick of hearing it, but I think that's all you can do for the time being.

I'm looking into totally changing our lifestyles, we try to eat organic anyway, but now I'm really pushing it with chemical free laundry powder and everying, I've found some great websites with supplies! I know this isn't the cause, but at least I feel like I'm doing something.

You take care, and I'll let you know how Monday's results go. it was only a day gap lat time, so this will be a 6 day gap. Thankyou so much for taking the time to talk to me, I hope it's not too hard for you.

[Emjee]

Hi I'm new to this site (any site for that matter!). I've just recently (May 08) been diagonsed with a complete molar pregnancey, & have been finding it hard to find others who have gone through this experience to try & nut some thoughts out. Unfortunatley for me I seem to have gone through the worst case scenario, after having a D&C I wasn't followed up correctly by my doctors & ended up having an emergancey hysterectomy in July. Also unfortunately this was to be my first pregnancy so I had no other experiences to compare to. I'm soo scared that there are other women out there like me that have no idea how disasterous things can turn out I would just like them to know that if you feel like you are being over looked or pushed aside because the professionals knows best, then make sure you make one hell of a racket. I had 3 seperate enities apparently following up on me & not only did they not seem to care (until it was nearly to late) they just fobed me off to the next person. I'm now under going chemo & it just seems to be a never ending story!

[izzy4real]

Hi Emjee. Welcome to BB, it's a great place for support or just to get your thoughts out!
I'm so sorry to hear what you've been through. Lani has offered me great information and a link to a website which I can send you. There is not much information out there.
Wishing you all the best with your chemo. And I'll send you the link, it's been helpful to me, hope it is to you also!

[Lani81]

emjee, im so sorry to hear all youve gone through. Please check out the link that izzy is sending you. i know theres a girl from qld in the support group who also had to have a hysterectomy. And alot of the girls in that group are going through chemo. I hope they can offer you some support.

Izzy and i have been chatting in this thread about her follow up and my experience last year so if you'd like to join us, please do. My case was much less severe than yours, but i can, at least, begin to understand where you are coming from.

izzy- good luck for your test tommorrow! let me know how you go. I never had to have any chemo, but if you do end up going that way, yours would be a very low dose cos your numbers are already quite low. Ive been told, most people dont even get any side effects with it. Lets hope your numbers are nice and low tomorrow so you dont have to go there tho hey?