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Trophoblastic Disease

doodlescaboodlesdoodlescaboodles
in Late Term and Child Loss

I had my follow up ultrasound yesterday and they are now thinking I have what is called "Trophoblastic Disease". Anyone even heard of this??? I have a MRI scheduled this week. After searching our all-knowing friend Google...Im a little skeptical I have this...it seems this is most commonly found in eptopic pregnancies and not a late loss such as mine. However, after 2 failed D & C's I have a legetimate amount of retained tissue left....and it appears to be...."increasing",

I think it's time for a uterus transplant ladies. Long story short...Im getting a 2nd opinion at one of the larger hospitals in the state. Let's hope this "House" episode comes to a end soon.

Me:28 DH:30 TTC since 8/2011 BFP 12/5/11 Spontaneous fraternal twins EDD 8/16/12 Loss at 19 weeks 5 days due to I.C. and preterm labor. 1st D & C 3/23/12, 2nd D & C (due to retained tissue) 5/18/12 which resulted in a perforated uterus and hematoma). TTCAL since 9/2012. Mackenzie Grace & Sydney Adelle our sweet angels. May you always fly together. 3-22-12.
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Re: Trophoblastic Disease

  • weddedwifeweddedwife member
    I had never heard of that either, but I hope this whole thing is over for you soon! Glad you are getting a second opinion.
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  • whiteroses05whiteroses05 member

    I have never heard of this before! I am sorry it has to happen to you!! Really hope you find answers soon. No one on this board should have to have more add to the loss of such beautiful angels. Let us know how the doctors appt goes. T&P are with you!!

    BFP#1 9/7/11 EDD 7/23/11 mc @21 weeks caused severe bladder obstruction on 3/14/12
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    BFP #2 9/9/12 EDD 7/19/13 started to mc @ 8w1d on 12/7/12 ended up with d&c 12/18/12, stopped developing @5w5ds

    Unexplained IF
    BFP#3 3/3/14 After 1st iui and clomid cycle
    beta 1: 137 beta 2: 268
    Beta 3:1248
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  • tubbsy32tubbsy32
    i  hope you have answers soon. i'll be thinking of you. ((hugs))
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  • MrsRichMTMrsRichMT member
    Unfortunately I've heard of it. That was my diagnosis in the form of a partial mole. The placenta formed into a benign tumor. I've been having weekly hcg levels drawn to make sure it doesn't recur. So sorry you're dealing with this. I hope you get some answers soon...
    Missing our sweet baby, with us 20 weeks 4 days, born into Heaven 4/21/2012
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  • jbranden12jbranden12 member
    I'm so sorry doodles. I hope you can get some solid answers soon. It must be really tough to continue fighting when you've been through so much, but we all know you have to advocate for yourself and keep pushing. Wishing you strength.


      Our Angel Patricia born sleeping 3/30/12 at 31 weeks
    Our Fighter Anna born early 1/8/13 at 26 weeks
    Hoping to bring home #3 due 9/9/15
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  • nuttycoconutnuttycoconut member
    (( hugs)) I hope you get more answers soon. 
    Lilypie Angel and Memorial tickers
    IVF #1 BFP b/g twins!; loss at 23 weeks due to I.C. and PTL. IVF #2 BFP 5/26/12; due date 2/6/13; TAC surgery 7/20/12, blessed with another girl & boy! 

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  • brwneldrbrwneldr

    im so very sorry you're going through this.  i've had it.  twice.  more commonly called a molar pregnancy, or gestational trophoblastic disease.  its not fun.....not only are you going through the loss of your baby, but you will have to waitto try again anywhere from 3-12 months depending on the type. 

     

    there are several facebook groups dedicated to molar pregnancies, and a baby centre group that is great- sadly more women have had this then you think.  the best site i can personally reccomend is google gestational trophoblastic disease and one will come up as gyne cancer in the link.  it describes it from conception onwards.  there are two types, and ive had one of each, a complete mole(technically no baby), which is an unviable egg and the sperm replicates itself to replace the missing dna from the egg.  it turns cluster like and usually self aborts,  but requires a d and c to get rid of the tissue.  a key tip off for this is your rising beta hcg's.  they usually get astronomically high very quickly.  then there is a partial(pmp) molar pg.  it is a viable egg, and two sperm enter it giving the baby 69 sets of chromosones.  technically this baby will never ever be compatible with life.  the same thing happens and the mole takes over the baby pretty quickly.  a d and c is a must again, as is the routine follow up of blood work(same with both pg's).   

    im not sure of your history, but noticed it was a late loss.  most times this is caught very early, but i have hrd of women being dx'd at 20 weeks with it, or godforbid, later.  the good news is that if this is what you had, the odds are amazingly great that you will never ever have one again- i was one of the few that was unlucky enough to have two, back to back.  the risk of recurrance is 1 in 100 or 1-2%.  follow up wait time seems to depend on your team that watches you and what they follow.  we only waited 3 months after our partial, some say 6 months- this is after your betas hit "0".  as for a complete 6months to a yr is reccomended.  the longer the better of course in the eyes of the doc. we waited well after the yr the first time and only the 3 months the second time.  i hope some of this info helps, and more so they're wrong and its not a mole.  hugs.

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