Complete molar pregnancy

[Hope133]

Hi all, I was recently diagnosed with molar pregnancy and had D&C done. Blood test for hcg is a week later.

Have anyone heard or been through a Complete molar pregnancy? If yes, could you share what was the treatment provided to you and your recovery experience? Ant details are much appreciated. I read that there are higher chances of it turning into cancer if hcg doesnt go down after D&C especially if it's a 'Complete' type of molar pregnancy. Very worried and anxious till the day of my blood test now. I'm also hoping to conceive again after recovering but have no idea how long it would take to recover and my age is catching up (turning 40 this year) :(

I'm so sorry you're going through this. Not quite the same but I had a partial molar pregnancy 2 years ago. I think once you've had a D&C there's a good change they've gotten all of the tissue. I believe in cases where you have a spontaneous miscarriage and pass the pregnancy yourself, that's when risk of complications are much higher. In that case you maybe never would have known it was molar and not all of the tissue is passed so has a chance to keep growing. Having had the D&C is a good thing.

For me it was just bloods every week and they continuously trended down so I was very lucky. It took about 3 months of bloods before HCH was zero. And then I conceived 3 months after that. It had taken 18 months to conceive the partial molar pregnancy so I considered myself very lucky to be pregnant again so soon.

I recognise a complete molar is very different but didn't want to not reply either.
I hope your recovery is as straight forward as possible. And I really hope you're doing OK. It's a terrible place to be, grieving your baby and also terrified by the diagnosis. Sending you my best wishes.

Hi @Hope133 I'm so sorry to hear about this. I had a molar pregnancy almost exactly two years ago. It was tough, but I got through it and I was pregnant again by the end of the year. I didn't have to have any more surgeries to remove tissue and my hormone levels came down without treatment, although a bit more slowly than I would have liked. I had to have blood tests every two weeks for about 3 months.

Here is a link to my full story, and lots of responses from others who have also had partial/complete molars.

https://www.mumsnet.com/talk/miscarriage/4651461-molar-pregnancy-story-for-others

I know it's scary but you'll likely be okay. Try not to predict the future (as much as you can!)

Thanks so much@remaininghopeful23and @AnotherStory23for the info. It's good to know how long it took for both of you until hcg goes down to zero and glad it all went well for you without chemo. My OB informed over the phone that she will determine whether chemo is needed depending on whether hcg goes down to zero during my next visit for blood test and follow up. I don't think my hcg would go down so fast in 1.5 wks (10 days after D&C).. at least I haven't come across any stories of it coming down so fast.. and what worries me is if my hcg lvl is trending down but because it's not zero, OB suggested chemo, should I do it or should I not.... there are many things running in my head these few days, hence the late response..
Sinking in the fact there was no fetus when I have been trying to pull thru severe nausea with hope of a positive sign that baby inside is still well despite daily bleeding until the discovery of having a complete molar pregnancy, also been coping with taking care of my elderly mom who is ill at home while trying to get some rest. My only happy pill right now is my 6 yr old. I really wish to give him a sibling but everything is so uncertain right now and the wait is agonizing.

By any chance do you still have records of your first few hcg lvls post D&C which you could share so I can try to benchmark (when I go for the blood test tomorrow) whether my hcg lvl is considered trending down well? Eg. What was your first drawn blood hcg lvl after D&C, how many days was that post D&C when you took the blood test, and how many weeks pregnant from LMP when you had your D&C? I was 8w+5d since LMP when I had D&C. It's ok if you no longer have these records. I'm just trying my luck asking and no intention to bring back painful memories to anyone.

@AnotherStory23i read through all posts from the link you shared. It was very informative and helpful hearing from people that has been through similar journey. I did try to search for such posting on molar pregnancy by scrolling to old threads before posting mine above but just couldnt find one until you shared yours! One thing I am also curious and worried was did anyone managed to have a successful pregnancy subsequently after a molar at age 41/42. Can I use your link to ask that? In case I have to go for chemo, I'm afraid that I will get a clear pass from OB to conceive only at the age of 42.. :(

Sorry for the long message. Thanks again @remaininghopeful23, @AnotherStory23.

@Hope133 That's a lot to deal with at the same time, I hope you are finding some moments for yourself to grieve and process.

I'm glad the thread has proved useful. I was told that they don't consider chemo until your bloods have been stagnant for a little while. Are you based in the UK? I think that approach is the standard across the different treatment centres here. I don't have my records anymore, but I know my levels went from 108,500 to 65 after the operation to remove the pregnancy. I was 11 weeks by the time I had it. Then came down very slowly for the next few weeks, perhaps by 5 a time every two weeks. But my period came back very quickly, I think 5 or 6 weeks after. I got back to normal three months after, which is a bit longer than is ideal but I don't think a cause for concern. That was in August - I was pregnant again in December. I did A LOT of research and basically once your bloods hit 0 it's extremely unlikely for the molar tissue to grow back

Please use the link to ask whatever questions you'd like! I can't help with your query about mums in their 40s but I'm sure someone else can

Thanks so much @AnotherStory23. I am not based in the UK. It's good to know how other treatment ctrs handle the recovery process and monitoring though. Thanks for sharing. Very helpful. I read alot from Google and got to know there is a higher chance of MP again especially for those diagnosed with 'Complete'. So your success pregnancy story really helps in giving me some confidence that there are ppl who went on to have a normal pregnancy after CMP. Did you have any nausea when you were first diagnosed with CMP and did you had the same nausea and bleeding symptoms during second pregnancy?

I will post my questions on the hcg and age to your link. Thank you for making me feel that I am not alone and taking time in responding, @AnotherStory23❤️

Hi OP, I had a cmp between dc1 and 2. I was monitored until hcg dropped down, which for me was around 8 months. Tried again and had dc2 a year and a half later. Sorry you're going through this, it's so rare most people have never even heard of it. I think this makes it more difficult to go through. You've got some great links above which will hopefully help you. There's a molar support group on Facebook too. All the best.

Thank you @nottheplanfor taking time to share your experience. Though not a good experience for anyone with MP, I'm glad to hear about your successful pregnancy for dc2. It's good info for me to know how long it took on the recovery process

Hi, I had a CMP in October 2023, I am so sorry you’re going through this
My levels didn’t drop quick after initial so I had urine then bloods weekly. I had a rise and they booked me in for MTX chemo but (thankfully actually) I had a bleed and it removed the regrowth that was happening . This was 6 weeks post D&E. Then had blood tests until under 30 then urine until under 2 (measures are different). I was under Sheffield and had to send the samples to them they were lovely, and my local EPAU did my bloods every week too.
Negative 2nd Jan and period returned that month
Was cleared to try again ‘unofficially’ March 2024 but was still having urine tests, Cleared fully and discharged in June.
Now 14 weeks pregnant, and have had reassurance scans from the same lovely EPAU at 7 weeks then 2x following light bleeding as that is how my molar presented. Will need to have HCG measured 6 weeks after baby born and potential placental testing. I am high risk but that is mainly due to BMI and they are very careful about making. sure placenta is working effectively, prescribing aspirin from 12 weeks for this reason
I hope this helps, please message if anything else it is an awful thing to go through and take your time recovering, I didn’t and it was worse mentally and physically

Thanks for sharing the information about your recovery journey, @Lemoncake199111. So eventually you did not have any chemo as the regrowth was removed after sudden bleeding right? Do u rmmb if u had any bad cramps before the bleeding and was the bleeding heavy?

It's also helpful knowing about your new pregnancy journey. 14 weeks would have completed the first trimester journey which is a big milestone for any pregnancy and a step closer to the big day. Will take note on the light bleeding so I don't panic if I see that, well..if I manage to conceive after this CMP nightmare. My hcg result came back. It was ~1400 mIU/mL, taken 1.5 wks after D&C. Not sure if this is a good level. OB said it was OK and need to keep monitoring. So I'm really anxious waiting for my next blood test appointment (nxt wk). I'm really hoping that it would go down to 2 digits next week and not rising so no chemo is needed.

Thank you for your kind and encouring words. It really helps. I felt bad for knowing the problem is me as complete molar are caused by the missing nucleus.. And I know my husband is also thinking that and worse, he thinks this abnormality of the cell in me was caused by not exercising enough..I'm trying not to think about it but sometimes just can't help it when other people start talking about things that reminds me I'm the root cause of my missing baby after all the pain.. :(

@Hope133 Can I please say (no offence) that your husband is being an idiot. There is no blame here; it was a genetic mistake, things like this happen in our bodies all the time, it's just that has the misfortune to be a pregnancy. Please don't let anyone make it feel like your fault. I felt like this and I had done everything 'right', eaten super healthy, exercised loads, no caffeine, no alcohol. It's not down to any of this.

I’m sorry you’re blaming yourself (and husband is not correct at all!) but it really is one of those random things that can happen, it’s rare and I remember having those thoughts too but it really is no one’s fault

With my bleed I had period like cramps after my op then I was at work and it got heavier and I went to the hospital. I was admitted to gynae overnight and they wanted to do another D&E but I asked them to ring Sheffield who said no because of the risk of scarring. The bleeding cleared the remaining regrowth and I didn’t need it removing. Numbers dropped dramatically that night (3000ish to 75). Before the D&E I was on 82000 and 5000 after so you’ve had a good drop.
Take care of yourself, and speak to your specialist hospital about the worries too, they are generally lovely and reassuring too x

Thanks @AnotherStory23❤️ I was quite down for the past few days. Told my husband today to not mention about abnormal cells and it has nothing to do with exercising more or less. He did apologize and said just wanted me to be healthy, though i don't know if that's genuine..but hope he will keep his words and not pointing me as the fault again. You are right it's really a misfortune and I'm glad to found a good support group here knowing that I'm not alone.

Hi @Lemoncake199111, I didn't know that a second D&E would have higher risk of scarring. Thanks for sharing the info and your kind words ❤️ I have no idea what was my initial hcg right before D&C because my OB mentioned it is likely very high as she can see the weird looking large sac in my uterus which she suspected to be a MP and true enough it was a CMP as confirmed by the pathology test.
Please take good care of yourself too. Wishing you a safe pregnancy and smooth delivery when the big day comes!

Hi everyone, may I know when did you have your first menstruation after molar pregnancy? My hcg levels are not zero yet but down to 45mIU/L as of last week and I started to have bleeding that looks like menstruation today. Is it normal?

@Hope133 Oh congrats! So close to normal. Yes I got my period back within 6 weeks, my levels were at 30 I think. It's a very good sign! It was quite an intense period though is what I would say

I got mine 5 weeks after my D&C. My HCG was at 15 at that point, so quite low.
Yours have trended down so much, that is great news! Thinking of you and hoping you're doing ok❤️

Thank you @AnotherStory23, @remaininghopeful23. Glad to know that it's normal. I've always thought that period will come few wks after hcg is zero!@AnotherStory23, mine was heavier than usual too but luckily there are no bad cramps like the one i had post D&C.

I'm sorry this happened to you.
I had a molar pregnancy between DC when I was 31 years old. I was fit and healthy and pregnancy 1 was fine. I had 6 months of tests but levels dropped quickly and pregnancy 2 was fine and he's now 15 years old. No health issues since.
I blamed myself: had I been too stressed, been too active etc.
The self-blame is another thing to get through but 100% you did not do anything to cause this.
I was upset and angry too. More angry then I've ever felt before or since (even with exDH walking out after 18 yr together), it was a very emotionally overwhelming time.

Mine was HCG negative on urine got my period the day before getting the call. 10 weeks after D&E
So glad your levels are going in the right direction

Sorry to hear about what you have gone through @Enough4me. Agree with you that the self-blame was the hard part. Glad to hear that your pregnancy 2 was fine and he is 15 now. Wow! Do you remember how long you have to wait before TTC again after Hcg drop close to zero?

Thanks @Lemoncake199111! Mine was very close to yours. 8 wks after D&C, hcg is 2.1 now. I guess that's consider negative? My OB said further blood test is no longer necessary. Just 1 final scan 2 weeks later 😊

@Hope133 I was just thinking of you! I'm thrilled to read this! How are you feeling?

At that time I had to send a wee sample off every month for 6 months, hcg dropped. Periods resumed fairly soon after erpc. I was pregnant in disbelief a month after the six months.
I was only early 30s and otherwise healthy. The pregnancy went well but I didn't believe it until he was out and 2 weeks old. Before I kept thinking something will go wrong. It's still odd and sad to think about it but it also feels very distant.

I think i will have the same thoughts as you if I were to pregnant again. Not easy to erase what has happened before 🙂 once in a while I will still ask myself - could it be some type of process food I ate causing my egg to have a missing nucleus, could it be a specific type of chemical from my skincare, could it be this and that, just too many "could it be"s ! If you have any tips on what i should watch out for or extra care for my next pregnancy 'if' i am pregnant again, do share with me 😊

I'm feeling great @AnotherStory23! Thank you for thinking of me 😊❤️ i got my clearance from OB to TTC again last week. Life goes on as normal now but I'm super glad that the whole blood test thing and worries are off my shoulders now. Now hoping that if I conceive again, my pregnancy will be a normal one - but won't know that until the first heart beat right 🙂