Molar and Partial Molar Pregnancy Support Group

[B&LsMom]

When my mom called to check on me yesterday---Yes I've gotten to the point where people call asking for updates--as if we would forget to tell them if something was happening LOL--I told her it was my first day of Maternity leave and she asked why---Seriously mom because I'm 39 weeks pregnant was my response--she apparently thought I would be working longer?!? I just wanted to have as much time with babe after he is here rather than before--8 weeks is going to go by sooooo fast!!

Bevb those numbers are VERY low--good for you!! I think my first hcg results came in at around 350ish 3 weeks post D&C, my draw the next week was around 160 I believe?? I also had a partial molar, and we found out at the 12 week scan babe didn't have a heartbeat and had passed away at 10weeks 6 days.

 

[jacky b]

Tina, thr fact that you have work up until that point is amazing! Enjoy you time off xx I finish in a week, only 5 days left at work and I'm only 33ish. It's getting too hot now...

Bevb, they are excellent numbers. I was 1200 the week after my d and c, the levels dropped to 200 odd and then 60 over the next 2 weeks. I think I was negative in 7ish weeks of testing. Your levels are excellent to start. I didn't get any pain or bleeding so was very shocked when at 15 weeks had a scan and had no growth since 7.5 weeks. I had thought because I had bad sickness everything was going to be ok. Looking back now I should have known something was wrong. Everyone here is wonderful xx

I think next time we do this I am going to try and plan for the heavy pregnant bit not in summer. Really not coping with the heat at the moment. Come on bub, hurry up....

 

[Mummy2Corban]

Bevb your levels sound great. I think it varies from lady to lady. I had a cmp so its a bit different. How are you?

Tina you have done super. Do you go back part term when bubba is 8 weeks?

Becky I can only imagine how hot you are! With Corban I wasn't to big during summer and this time I'm mainly pregnant winter and spring!

Vicki we only had sex on the day I got my positive opk and here we are.

How is everyone else? Do any of you have much planned for the weekend?

Xxx

 

[ihave5boys]

Mummy2-we did it 3 days before it was barely visiable and my dh accidently cam just outside of me. Sorry tmi. And then we have not done it since. I am hoping some made it back in but not counting on it. My lines were darker again. Not as dark but a lot darker tgen they were yesterday. Which has me so confused.

Vicki

 

[Bevb]

I'm starting to doubt the diagnosis really. My levels really are low compared to everything I have read and all of yours. I saw a consultant on Wednesday about the on going pain and he commented that they refer everyone they think likely early rather than waiting the 8 weeks it takes to get a definite diagnosis. All seems very odd. But I did have all the symptoms off it, terrible pains and nausea early on and I had the feeling something wasn't right, so much that I bought my 12 week scan forward by a week.
I contacted Charing Cross this week to see if I really have to wait the 6 months and they agreed if my next level is 5 or under and stays that way for 3 months I can start again. I might ask them if a misdiagnosis is possible. Maybe its just wishful thinking on my part.
Its great reading other peoples stories. I know people that have miscarried and they give me advice but they really don't understand the difference.
And it gives me hope that further pregnancies are possible
x

 

[Kabeth29]

Bevb, I am new to this group (about 4 weeks post D&C now) but my levels were much higher and I had a PMP. About 1700 two weeks after D&C and 1200 at three weeks out. Waiting for fourth week's results now. I hope yours is a misdiagnosis but those numbers sound really great even if you did have a PMP. Hope you are holding up okay.

 

[amurray]

bevb i am jealous!! it took me 10 weeks post d&c to get to 4. started at 188. just had blood work this morning so ill get those results on monday. did they test the tissue after your d&c to confirm pmp?

 

[Angelcutie]

Hi girls! How is everyone? I think my last few posts were quite depressing as I have the same feelings as many of you who just found out =( It's such a horrible thing to go through and I'm so happy I have found all of you.

Just got my pathology reports back and the dr told me it was a complete molar (even though they saw a heartbeat, guess it was mine?) but they found no fetal tissue. He also said it was benign so I am very grateful for that! He said worst case scenario would be he would need to go in and do another d and c to remove any extra cells if my levels were to rise. Here are my hcg levels, if you guys can tell me what you think.

D and C: 137,000
1 week after: 3,160
2 weeks: 255 (just got them today!)

My doctor seems pretty pleased so I feel more relaxed but still need to get to 0!

However, when asking when I can try again he said he is supposed to tell me a year but it is definitely negotiable, that I would need to talk to other people who are higher than him, (specialist and what not). My doctor said he likes to go by the individual person's case and how their levels drop seeing as everyone is different. I just fear that the specialists hear the words "COMPLETE molar" and right away they say 1 year, but one size shouldn't fit all! (must be the teacher part coming out of me)... i guess i dont understand because someone with a partial may take longer to go down than someone with a CM but yet they only have to wait 6 months and CM have to wait a year? =(

I think I may email Dr Goldstein, has anyone else done this? My doctor also said that he knows him and that there is someone here at Yale who is just as good as him but who knows. When something like this happens to you it just makes you want one more than ever but I dont want to go against the dr's orders for fear of what could happen, but i think a year is a little too long..guess i need to wait and see when 0 comes..

I see so many people on this thread with their rainbows almost here to arrive! Good luck to all of you I am so happy for you all! Can't wait to be there

 

[Angelcutie]

bevb- was the 22 your first week after d and c? or a few weeks after since they didn't know it was PMP right away...if that's your first week after d and c that is GREAT!

 

[Bevb]

amurray - They tested the pregnancy tissue and told me it was a pmp, but then the consultant said that they refer people early but that it can take 8weeks to know for sure. I think it's probably wishful thinking on my part that it's wrong!
Fingers crossed your levels have dropped again x

kbeth29 - Hooe your levels have dropped again to and you're doing ok.

I have good days and bad days like I'm sure you all do. Unfortunately I work with a few pregnant ladies and have friends due at the time I would have been. I'm happy for them but it's so hard putting a brave face on all the time.

I'm getting married on new years eve, so trying to concentrate on that. Will be slightly tainted as we'd bought the date forward because I was pregnant. But we'll have a toast to her on the day.

Trying again is a scary thought, we were told it wouldn't happen naturally due to polycystic ovaries, it did but took 18 months.

Xx

 

[Bevb]

Angelcutie - 22 was 4 weeks after d&c, didn't know until 3 weeks after when I got a all out of the blue. I was told you had to have 3 miscarriages before they investigate x

 

[Kabeth29]

Angelcutie, great news about your numbers! are you feeling any better now that you have some answers? where did you hear that pmp numbers come down slower? hearing that makes me feel a little better than mine are so flipping high. Hope you are hanging in there and had a great thanksgiving.

 

[Mummy2Corban]

Angelcutie your levels are great. Before my d&c my levels were 255,000 and 10days after they were 92,000 so your levels are looking great. I had chemo so charring cross told me I had to wait a year. Usually with no treatment its a 6 month wait. I have also heard if levels drop to negative within 56 days then its a 3 month wait from negative. There is no harm in emailing another dr. I used to email my consultant at charring cross with questions. After long talks and tonnes of research we decided to wait 6 months after chemo end. I fell pregnant with my rainbow 8 months after treatment finish

Xxx

 

[Angelcutie]

bevb- that is great, so close to 0!! But i can't believe they told you you need 3 miscarriages before they investigate! Are you in the U.S.?

kabeth- yes i feel better! i guess it was the not knowing that made me more nervous! Sorry if i confused you! I didn't hear that it takes longer, just was wondering if someone with a partial happened to take longer for numbers to come down than someone with a complete, why do PM get 6 months and CM get 1 year, ya know? I wanted so badly for it to be PM so i would get cleared sooner and now that I have a CM i feel like it will be longer =/

M2C- thank you! Since I'm in the U.S. no one has really talked about that rule of thumb to me! I dont know where the dr's here get their info but i feel like its PM 6 months, CM 1 year type of thing, which is why i like my dr so much because he goes by the person..but yes i think i will email others to see! and i have been reading your story from the beginning and i am so happy you are having your rainbow baby! You went through a lot, as did everyone, and I am so happy for each and every one of you!!

 

[Bevb]

angelcutie - I'm in the uk. I know, it was when we were leaving the hospital after the d&c. I didn't really know what to say. But it appears that information is incorrect! Next bloods are on Monday, so fingers crossed I'm below 5 and stay there.

 

[jacky b]

Bevb, I was also told 3 mc but it is dependent on the situation - it took a long time to get pregnant with my pmp so the consultant who did my d and c referred me to a specialist pregnancy investigator. I used my wait time to find out what else was wrong. They put me on meds to sort out levels and next cycle got my rainbow. 32 weeks now. I think I has 3 months of negatives. My understanding from my research is that the reason that they suggest shorter waits for pmp is that with the foetal tissue present it means that the mole us within the placenta but with a cm, the placenta is mainly molar tissue so there is a higher chance of cells being left behind during the d and c and the wait time and monitoring is used to make sure there are no cells left. These cells make the hcg. Once it gets to zero though its rare to rise again.

Angel2cutie, my mum had a cm before she had me 32 years ago and the wait time was the same then. Seems that this is one area in medicine that hasn't advanced. It's definitely worth talking to other doctors. Many doctors have only read about these types of pregnancies and never had one like all of the ones where I live. My specialist was a 5 hour drive away in the city (i live in a country town) and she had seen a few more so was much more up on the risks and treatment.

Laura, I think you are right spring timing is good, the uncomfortable bits are done in winter. Next time I am aiming for that. Summer birth is not the best bug one plus, my hubby's birthday is around our due date so I can't right the wrong of last year and give him a rainbow for his birthday. We found out about the pmp on his birthday. This year is will be supporting me for a better positive reason.
How are you going?

Lotte, think of you everyday xx

Tina, Eleanor, can't wait to hear your news.

Megan, hope you are enjoying your maternity leave

Dano and Raff, how are you going. Has thr bleeding absorbed itself yet?

Sorry if I have forgotten anyone. I hope everyone has a great weekend full of good days. Good luck to all those ladies waiting on results. Praying for negatives and drops all round.

Xx

 

[jacky b]

I just looked back at my post, sorry for all the wrong spelling, my phone is useless for typing or maybe I just have fat fingers and thats why j keep hitting the wrong letters

 

[Bevb]

jacky b- wonderful news, congratulations x

 

[Rafferty]

Wow it seems like in the past few weeks we've had a lot more ladies with cm and pmps! But glad you are all here for support and supporting eachother.

M2C- I was wondering if you've been telling friends yet? Have you made a FB announcement?

Afm-I'm spending the long holiday weekend at my parents in Port Angeles (Twilight fans may recognize my hometown).
Just feel like I'm waiting to hit 12 weeks. My next ultrasound is in a week....still no bleeding! I'm feeling pretty hopeful we get to keep this baby.

 

[B&LsMom]

Hi girls! How is everyone? I think my last few posts were quite depressing as I have the same feelings as many of you who just found out =( It's such a horrible thing to go through and I'm so happy I have found all of you.

Just got my pathology reports back and the dr told me it was a complete molar (even though they saw a heartbeat, guess it was mine?) but they found no fetal tissue. He also said it was benign so I am very grateful for that! He said worst case scenario would be he would need to go in and do another d and c to remove any extra cells if my levels were to rise. Here are my hcg levels, if you guys can tell me what you think.

D and C: 137,000
1 week after: 3,160
2 weeks: 255 (just got them today!)

My doctor seems pretty pleased so I feel more relaxed but still need to get to 0!

However, when asking when I can try again he said he is supposed to tell me a year but it is definitely negotiable, that I would need to talk to other people who are higher than him, (specialist and what not). My doctor said he likes to go by the individual person's case and how their levels drop seeing as everyone is different. I just fear that the specialists hear the words "COMPLETE molar" and right away they say 1 year, but one size shouldn't fit all! (must be the teacher part coming out of me)... i guess i dont understand because someone with a partial may take longer to go down than someone with a CM but yet they only have to wait 6 months and CM have to wait a year? =(

I think I may email Dr Goldstein, has anyone else done this? My doctor also said that he knows him and that there is someone here at Yale who is just as good as him but who knows. When something like this happens to you it just makes you want one more than ever but I dont want to go against the dr's orders for fear of what could happen, but i think a year is a little too long..guess i need to wait and see when 0 comes..

I see so many people on this thread with their rainbows almost here to arrive! Good luck to all of you I am so happy for you all! Can't wait to be there

Do you have Dr. Goldsteins e-mail address?? I have a few questions in regards to follow up post delivery of my rainbow baby--my midwives feel that no follow up is necessary such as testing of the placenta or a simple hcg blood test and I want to get another opinion about that...