Gestational Trophoblastic Disease

LyndseyTS · June 2014

Hi ladies, I know I haven't been on here as frequently lately (and I can't promise that I will, but I'm going to try). Some of you may have seen my retained placenta post. It turns out there are not retained products (as far as testing goes), but I'm still bleeding more than three months out. The specialist (who I have finally been referred to) mentioned Gestational Trophoblastic Disease and I was wondering if anyone had any experience with it. I'm just feeling so worn from everything. Worn emotionally and physically from continuous blood loss. I'm so grateful that there is a safe place to post here. I think of you ladies often (even when I'm not posting). Thanks ladies and sending positive thoughts your way.

kflynn81 · June 2014

I unfortunately do have experience somewhat... I had quiescent trophoblastic disease which is the quiet or inactive form of GTD. I lost Jack in December just before Christmas and bled on and off until just shortly after Valentines day so mid/end of February. My OB wasn't concerned since I didn't have cramping or pain or a fever so when it stopped I just let it go. I went in March for a hysteroscopy and my urine tested positive for hcg , when they ran the bloodwork it came back at a 7 which was still considered positive. From March 14th-May 23rd I went in repeatedly for bloodwork because it kept jumping around. It went from 7 to 19 to 16 to 11 to 6 to 10 then finally down to a 2.7 .... I got the QTD diagnosis after they sent my bloodwork to New Mexico and tested it for hyperglycosolated hcg and since it came back negative they said it was the quiet version and just continued following my bloodwork. I finally had the hysteroscopy and although I did have polyp like tissue in there , it wasn't any retained placenta so I'm told there must have been microscopic cells unseen with an ultrasound that remained and eventually worked their way out.

That's a lot of info....any questions let me know I'm happy to talk about it

LyndseyTS · June 2014

@kflynn81‌ Thank you for being willing to share. Honestly, it helps just to know that someone has been there (though I wish you didn't have to be!). I'm really glad that the cells worked their way out. The doctors aren't certain in my case (to quote the specialist "there is one area, likely where the placenta was attached, that looks "weird" for a lack of better words), but this has been thrown around and I think the possibility of cancer is throwing me. I know the odds aren't high, but I'm not a big fan of odds these days (I'm sure you can understand...). I may PM you as things move along if you really don't mind. I am feeling like no one knows what's going on.

kflynn81 · June 2014

@lyndseyTS absolutely please PM me anytime!! After Jack was born, the placenta was "stuck" for lack of better words and I ended up having a D&C after his birth to remove it and I have a sneaky suspicion that's why I had the issues. It was the day before xmas eve and everyone wanted to go home they didn't want to be dealing with little old me so I have a feeling the D&C was a quick one and not 100% ....just a hunch. Have they been testing your hcg? Is it high?

LyndseyTS · June 2014

That would make me super frustrated! I'm sorry that's how it went down. I feel like if there are serious consequences to your job, you need to do it well. Maybe that's the teacher in me. When I gave birth to Serenity, they said that it looked like the complete placenta was delivered so they didn't send me in for a D&C and I haven't had one done yet (though there is talk of it on the table). They have been testing my hcg (twice so far) and they've said it's come back "clear" but no indication of actual levels. Honestly, I've been frustrated with being tossed back and forth between doctors, but finally feel like I'm in good hands with the specialist. We met with him this morning and he sent me for another (third) ultrasound to somewhere that specializes in ob/gyn and another blood test to check my hcg levels and do a complete blood count (pretty sure there was another one, but I can't remember). Here's hoping that it's "nothing". It just feels like so much to deal with after everything else! I'm sure you can relate. I will definitely keep you posted. I'm feeling pretty zapped (it's been a long day) so I'm going to head off to bed. Thank you again for being willing to share.

shandorfml2 · June 2014

I don't have any experience...that must be so frustrating. (((hugs)) hope they can figure out something soon.

Maybe Joleisa · June 2014

So sorry to hear you are still bleeding. I hope they get things figured out soon.

LyndseyTS · June 2014

Thanks again, ladies. I haven't been on here for the last week because things took a turn for the worst ending in a D&C (finally....after a failed attempt at inducing a second time with misoprostol) and a blood transfusion. At least it's progress. They still don't know what's up. I'm not sure what I'd do without this board!

Maybe Joleisa · June 2014

Oh my goodness, Lyndsey, you sure have been through the ringer these past 4 months. Hopefully the D & C will get you back on your way to wellness.

LyndseyTS · June 2014

Thanks @Maybe Joleisa‌. To be honest, I'm just exhausted. I'm tired of the physical and emotional. Trying to stay positive, but it's tough. I really do appreciate your support. Hopefully they will have more answers come next week. The good news is my hemoglobin is back up near 100 (which isn't ideal, but much better than 70!). Progress is good.

stefuge · July 2014

I don't have any experience but I'm so sorry for all you are having to go through. You've been in my thoughts. ((Hugs))

LyndseyTS · July 2014

Thanks @stefuge‌. For the first time, today when I showered I only felt moderately dizzy (instead of having to sit down so I don't pass out) so that is progress and I am grateful! They are still doing the pathology on my D&C and probably won't hear back for awhile (apparently it can take up to 6 weeks??) but I'm so so grateful for the improvement today. I haven't felt this good in awhile. The bleeding has also stopped for the last 24 hours, which is the longest it's stopped for in over a month. So...progress!! Thank you ladies for thinking of me.

kflynn81 · July 2014

Oh my goodness that sounds super scary what you've been going through. Sounds more like the D&C was needed than being GTD, did they say anything about that? I hope this is the end of this nightmare for you....no more bleeding and negative betas for you my dear!!!! Thinking of you!!

stefuge · July 2014

Wow! Hopefully this is the start of things getting better!

LyndseyTS · July 2014

An update for anyone interested in reading about my silly little life. Things were going really well. Then I started bleeding again. Went into the ER, they kept me for five hours, took my blood, and sent me home (my hemoglobin was near 110, apparently). Bleeding stopped for 35 hours (which was exciting...I thought maybe we were out of the woods!) and then picked up heavily again. Went in early Monday morning and my hemoglobin was down to 57. They kept me this time, did a second D&C and a second blood transfusion. I'm pretty sure they still don't know what's wrong. Feeling really frustrated and now I'm being bounced between two OB/GYNs and neither wants to deal with things. Bah! Thanks for listening, ladies.

AshersMom11 · July 2014

I'm so sorry you are still going through this. Fingers crossed they figure things out soon!

stefuge · July 2014

@LyndseyTS‌ - oh my goodness! I am so sorry to see this update! Of course you are frustrated - how upsetting. ((Hugs))

jonahsma · July 2014

@LyndseyTS so sorry you are going through this... will be praying for you!!

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