Molar and Partial Molar Pregnancy Support Group

[rachieroo]

Thanks ladies, i am a bit gutted but i am kind of relieved to be honest. I know i shouldnt ttc until at least jan so i want to stick to it!

I went for my 12 week scan and was normal, no bleeding etc and they said it was a mmc and that there was a sac measuring 7 weeks... so to make sure the dates werent wrong i went in a week later for an internal scan and that was when they queried a pmp. My levels were around the 56,000 mark and i had a d and c the next day and the tissue sent to charing cross for testing. They rang me to confirm it was pmp and that i had to send blood and urine off for testing and luckily my levels were normal straight away and they have been for a second time round, i am going to be tested every 4 weeks until Jan and then if they are still normal we can start ttc if we want. I think i have been very lucky compared to some of these brilliant ladies but it has still been emotionally difficult.
And mummy2corban is right, there is a light at the end of the tunnel and this group will certainly help you see it and even get there! Any thing you need to chat about just ask xx

 

[Alwilan]

Mummy2Corban will be keeping my fingers crossed for you, please let us know your blood results when you get them, I can only imagine how nervous you are feeling right now

 

[Mummy2Corban]

ARRRGGHH! They didnt have my results in!! I have to call back tommorrow xx

 

[Alwilan]

How unfair!!!! Thinking of you x

 

[AmandaLucsMom]

Mummy2Corbin, so sorry! I hope you get good news tomorrow!

Tina, I found out my pregnancy was not viable at my 8 week ultrasound appt (I was closer to 9 weeks). At first we saw nothing, but personally I think the Dr I saw at the time did look very well. The second I began to fall apart she bolted from the room. She didnt order blood work as she should have and just told me to come back in a week. She suggested my dates could be off, but I used an OPK and my cycles are a very regular 28 days. I knew exactly when I ovulated. I went back to a different Dr a week later and we saw an irregularly shaped sac and a very small (too small 9-10 weeks) something inside. He wanted to wait another week and we did blood work. A week later I found out my hcg levels were in the normal range and the sac and small something inside had grown, but still no HB. At this point I begged my Dr to schedule the D&C. I found it a huge internal struggle to simply wait for my body to catch on that there was no baby growing inside, just a placenta feeding hormones to maintain the pregnancy. I had a very small amount of streaky mucous that only started after my first ultrasound, but never any real spotting or bleeding. Who knows how long it would have taken for me to mc and if I had mc'ed naturally I would have never known it was a pmp.

My dr never told me to wait any period of time longer than the 2 cycles he tells every woman who mc's regardless of reason. In fact, since I am 36 he encouraged me to try sooner rather than later. It ended up taking me 6 mo to conceive anyway though. My levels only got up to in the mid 20,000 ranges, so never out of the ordinary and they returned to normal very quickly, in less than a month (more like 2-3 weeks), so we believe my baby stopped developing very, very early. I am curious to hear what your treatment will entail, it seems to vary greatly here in the US. I believe we are very much behind the UK in our knowledge and understanding of mp/pmps. Good luck to you!

 

[B&LsMom]

OH MY GOODNESS I'm so sorry for you all reading these stories--thank you all for sharing with me. We are all very connected by this but different!!

My story this far goes like this: 9weeks 6days pregnant I have my first midwife appointment for this pregnancy (that was my 2nd pregnancy, my little boy Blake will be 3years old in December)--Bloods drawn and heartbeat hurt--all was well. I was given the option of a 12 week scan--since we didn't have any complications early in my first pregnancy or history of genetic abnormalities--this wasn't needed as my dates were spot on from using OPK's to conceive--scheduled anyways since ultrasounds are FUN and Exciting and make all the nausea I was experiencing worth it!!

Fast forward 2 weeks to ultrasound appointment @ 11weeks 6days--They were running behind so we were seated about 35 minutes past my appointment time with a squirmy little Blake! The ultrasound tech started looking around and when the image came up on the screen Blake said look at the fishy (apparently my uterus is fishbowl like in the eyes on a 2 1/2 year old) and I started to laugh. Someone then knocked on the door and the ultrasound tech got up. When she came back she was asking about any cramping or spotting, etc which I hadn't had any. She was busy taking measurements and wasn't talking but made mention of cysts and ask about my history with those, so I assumed she was taking measurements and then we would get to baby, Blake was still restless so I was more focused on him then what she was doing as she wasn't talking at all--then she said she was sending the images to the Dr. and when she was just about to get up and go talk to him my DH asked if the image on the screen was of one of the cysts--she said no "Its a part of the pregnancy" ENTER PANIC MODE--the word "pregnancy" rather than fetus or baby was a major red flag but my DH was trying to tell me everything was fine and not to worry. About 5 minutes later the ultrasound tech comes back in with a Dr. whom I have never met (being in the care of the midwives the ultrasounds are overseeing by whatever Dr might be on call for the hospital that day). The Dr. shook my hand--told me my baby wasn't alive and it was OK to let it out----UMMMMM 2 seconds doesn't give enough time for that to set it so if he was expecting something more than a deer in the headlight look, he wasn't going to get it, I asked what could have happened since we heard a heartbeat just 2 weeks before and it was a good strong heartbeat--then the ultrasound tech said they had already talked to my midwife and she wanted to talk to me--exit Dr. and enter phone call with one of the midwives I hadn't meet who had me all prepared to miscarry that weekend and scheduled me for an appointment the following Monday.

Nothing happened over the weekend--I kept expecting something every time I went to the bathroom--but nothing happened. Monday appointment with midwife--No cardiac activity and diagnosis of fetal demise were there results from the ultrasound. Baby measured a week behind @ only 10 weeks and 6 days (I still never felt like I saw a "BABY" from my ultrasound appointment--it was such a weird experience since the ultrasound tech wasn't telling us ANYTHING)--recommendation of D&C since obviously I wasn't miscarrying naturally--still no spotting or cramping--still experiencing morning/evening sickness. She scheduled me to an OBGYN for the next day for consult and D&C was scheduled for the next day when I would have been 12 weeks 4days.

Fast forward to Midwife follow up appointment last Friday (1 week 2 days post D&C) I'm certain they hadn't received notification that D&C was preformed as the nurse who took me back asked how many weeks I thought I was while she was weighing me--turns out she was the same person I talked to on the phone earlier when I called to ask what would be done that morning and told her over the phone I miscarried and was post D&C-grrrrr. Anyways--I asked what kind of miscarriage I had since I had done some research and new about Blighted ovums, molar pregnancies, and missed miscarriages--she thought a molar pregnancy would have been discussed at the ultrasound appointment and since we did hear a heartbeat at 9weeks 6days--not blighted ovum--so missed miscarriage was what I had experienced. Recommendation of waiting 3 months to TTC again to give my body time to regulate, and bloodwork wasn't done as they didn't want to interfere with the post-op plan for the Dr. that did the D&C--they would let her do blood work at her office.

Then Monday was the call to tell me the pathology results of the partial molar pregnancy and that we would have to wait 1 year before trying as to make sure all the beta hCG returned to normal, etc etc etc

So here I am now just waiting to see what Friday and the first set of blood work shows...

 

[Alwilan]

So sorry Tina, it sounds like you have had a horrible few weeks. Hopefully you will learn more at your appointment tomorrow. I would defo discuss the possibilty of waiting only 6 months TTC if your bloods return to normal quickly, like Amanda says the practice varies widely of how long they suggest, but the only cases of a year I have heard of are for women who have needed chemo. Please let us know how Friday goes.

 

[Mummy2Corban]

Thanks for sharing and im sorry you are going through this too. Please keep us updated with your hcg levels. I too would ask if you can try sooner even though im having chemo its a question ill still be asking! xxx

How is everyone? xxx

 

[rachieroo]

Tina, what an awful experience you have had!! I agree that you should ask about ttc sooner than 1 year as chemo is usually the only reason they normally expect you to wait longer.

Mummy2corban you must be so frustrated... any news yet??

xx

 

[Mummy2Corban]

Gone down to ....28!!! Im sooo relieved!!! Thanks for your support ladies! PHEW.................. XXXX

 

[Alwilan]

That is brilliant news, I'm so so happy for you x

 

[Mummy2Corban]

Thank you xxx

 

[AmandaLucsMom]

Mummy2Corbin, that is awesome! Such great news, I know you are so relieved!

Tina, what a horrible experience. I too researched after that US appt and assumed it was perhaps a blighted ovum since we saw nothing. Wait one year seems excessive in your situation, especial to say that without knowing what your levels are or how quickly they will drop. I believe you mentioned the midwife said that? Your Dr may say differently. You may want to research wait times and arm yourself with knowledge and examples in case you need to advocate for yourself. Are you living in a highly populated area and have your choice of Drs? You may be able to find one with more experience if you find your OB doesn't have much and doesn't refer you to a specialist. If you are over 35 I would also really push for a shorter wait time as well.

Good luck tomorrow! Hugs to you!

 

[rachieroo]

Mummy2corban that's great news Xx

 

[B&LsMom]

Mummy2Corban--Yay great news!!---how soon after your blood draws do you normally get results--and how frequent are your draws now??

I'm nervous for tomorrow to see what they say--but ready to get the ball rolling--I was suppose to go in on Wednesday (2 weeks from the D&C) but I have Fridays off work so scheduled then so I didn't have to miss work--so these last 2 days have taken forever to pass by lol

One of my friends from the TTC thread I've still been following gave me a great link she found, so I think I will print off the info--its more of 1 person's research put together on her blog--what do you all think--should I try to find something more official or does this seem to get the point across??: https://chantelle-blog.blogspot.com/2006/09/how-long-to-wait-before-trying-3.html

AmandaLucsMom--I'm fairly young, I turned 26 in June--still I hear that clock ticking just because I really want to have a sibling for Blake so they can be close in age...I live in Spokane, Washington. We're the 2nd largest City in WA--but not huge. I feel it will be appropriate to ask the OBGYN what her personal experience is with partial molar pregnancy patients has been--and consider changing care based on how much she knows (or I guess doesn't know lol). Her practice really isn't one I would choose on my own--just who my midwifes refer to when something is outside of their scope of practice--so I'm not heart set on staying with her.

I will be sure to keep you all updated--my appointment is tomorrow afternoon so I will update when I get home : )

 

[Mummy2Corban]

I have my bloods taken twice a week because im having chemo but once my levels go below 5 then that will eventually stop and ill end up sending in urine samples. xxx

 

[Jamaris Mummy]

Hi all~~can I join your group?? I had a D&C done on Sept 21st and my midwife called with my Pathology report today which showed I had a partial molar pregnancy. I have an appointment on Friday to see the Dr. that did my D&C and will probably know more after that appointment (Will start blood draws to check for lowering hCG levels)--are any of you ladies newly diagnosed with a partial molar pregnancy?? How far along were you when baby died?? My baby grew wings at 10 weeks 6 days. I haven't ever heard of this before and don't know of anyone that has experienced this. Thank you all in advance!!! *TINA

hi Tina!
so sorry to hear ur story hun I am 24, and at 23 had a partial molar pregnancy. I had to deliver my baby at 16 weeks, his heart was still beating strongly the day I was diagnosed. he also had triploidy. you might like to take a look at the very beginnning of this thread, where we all share our stories maybe some of your questions can be answered there or may prompt more questions for you. I hope we can help you as much as possible. I agree with the other ladies, I'd be pushing for a 6 month wait to ttc if all else is well. I only waited six months, and I am now 32 weeks pregnant with my little rainbow baby Know there is light at the end of the tunnel. Huge hugs to you

 

[B&LsMom]

Mummy2Corban--I bet you will be ecstatic to be done with biweekly blood draws--your getting close to being under 5---woohoo!!

Jamaris Mummy--thanks so much, I will have to look back towards the begging of the thread Congrats that you are towards then end of your tunnel--the home stretch!!

Its so inspiring to see those of you know expecting after this--gives me hopes that it will happen someday for me!! I was able to twist the Drs. arm a little and she said if levels drop and a year is just too long she is OK with 6 month, but we will see what the levels do--do we know of anything that will help them drop sooner lol?? Had blood draw today and will go weekly for 4 weeks and then after that just month to the year mark of the D&C. They also scheduled me for an internal ultrasound appointment in 4 weeks to check the cyst on my right ovary they were concerned about--not really looking forward to that!

 

[Alwilan]

I'm glad you managed to twist arm, sadly i don't think anything helps them lower quick, but positive energy can only be good, so sending you loads. Try not to worry too much about the cyst they discovered one after my d&c but it turned out to be nothing, and i know they are quite common, but we all still worry x I'm sure if she is overly concerned she would have got you in sooner. When are you expecting your hcg results back? X

 

[Mummy2Corban]

I cant wait until no more blood tests!! I prefer the chemo injection to the blood tests. Bring on urine tests i say. Hehe! Cannot wait to hit below 5. It feels good getting your results and seein them go down. Really glad they said 6 months for you is a possibility. Im still gonna ask the question even with having the chemo. I find not trying for a whole year after treatment stopping incredibly difficult. I want another baby so bad! I have my next appointment at charring cross on the 18th so i guess ill find out how they think im doing.

What has everyone got planned for the weekend? Anything exciting? xxx