Partial molar and molar pregnancy support thread - all welcome!

[MrsJohnDeere]

I thought I would start this thread as a place where anyone who is going this or has gone through this in the past could share experiences, vent about life, etc.

After a MMC at 12 weeks and an ERPC a few weeks ago I've just found out the cause was a partial mole. I've been referred to Charing Cross and am waiting to hear back from them to start the monitoring etc.

I know the chances of cancer developing are about 1/100 but I'm still struggling with the 'OMG I'm going to die' feeling at the moment, plus the grief and stress of the miscarriage itself.

I haven't told anyone in RL, other than dh, even friends who know about the miscarriage. I'm worried abut how they'll react and that I'll end up blubbing.

honeybunny I'm so very sorry, what an awful time you have had. Do try and rest as I found that really helped with the bleeding. Of course it's normal to be upset, I think I cried for months, for the first few weeks I was completely unable to function, just wanted to hide from the world. Hoping your hcg has dropped. Look after yourself xx

Hey sunshine glad you were able to come back and share your experience. It must be all-consuming. You're very brave. And sharing here is so helpful to others. Thank you for that. I hope you're doing ok. I'm glad speaking to others was so helpful. I find this thread an incredible source of support. We're such a small minority of women coping with this, we've got to stick together.

Amy I'm so sorry this happened to you too. What an awful shock. I had the same - was told I could try again and started to (in fact I think I may even have had a chemical pregnancy 4 weeks after my d&c) and then found out 7 weeks later I'd had a molar pregnancy. I was initially told mine was a complete too and my levels dropped much slower than yours. I only just got to negative recently and my d&c was the end of march. However if I did have a chemical pregnancy that could explain it. I think levels drop at very different rates in different people a it's great yours were so quick to get to negative. I'm assuming then that you got there within 8 weeks of your d&c date which means you only have to wait 6 months from the date of the d&c with a complete I think (that's charing cross's advice). So does that jean you only have 4 months or so to wait now? I know when I thought I'd have a 6 month wait there was no way I could wait 6 months so I never really intended to. A few of us did some research and it seems once you're at negative it's safe to wait only 3 months as chance of recurrence then is very low. It's a personal choice but I did feel the wait time was arbitrary. Also when I went into charing cross they said that they have so much research now that they're confident they can soon cut the wait time for a complete and they cut the wait time for a partial recently because of research. It's all just based on risk so if you feel confident and you've got negative naturally then it's probably ok. I also figured that by the time I actually got pregnant id be out of the follow up period anyway. I hope this helps a bit. I know how hard it is to be told you have to wait when all that could make you feel better after a miscarriage is being pregnant again. Do come back and update us on how you're getting on.

Hels thinking of you & hoping you're ok.

oak and pompey same to you both!

Rosie a drop is a drop in the right direction, however disappointing. I'm sorry. But hang in there. A small drop at this stage isn't unusual. You'll get there.

Hugs to all. We will get through this and we'll all have our good news soon (I'm particularly struggling at the moment for some reason and feeling very desperate to be pregnant again.)

Lots of love to you all xxx

honeybunny so sorry I didn't see your message when I posted my last one. What an awful traumatic experience for you. I'm so so sorry. I totally get how you feel you'd lost a baby even though you hadn't known for long & I'm so sorry you had the added stress of complete moms, bleeding & problems with your hcg levels. I know you'll be in safe hands with charing cross and there are lots of ladies on here who have bravely shared their experiences of treatment if it does go that way for you. It's certainly okay to cry DVD even now im mostly out of the woods and feel I got off quite lightly in the end I still have very down days where I really struggle with it all. I hope you've got some good support around you. We're always here. All the best xxx

*supposed to say and not DVD! Sorry

Thank you for your support.
I'm in CHX now, got admitted yesterday as had 2 massive bleeds during night and again at Margate hospital as I went in there first yesterday. I got transferred t o CHX by ambulance with siren and flashing blue lights... woke me up to the fact I was ill!!!
started chemo last night. Ultrasound showed a big mass again in my womb had grown back in only 4 weeks. No wonder I was bleeding so much,
In here for a week, all the staff are friendly and really nice, I'm in a private room so that's loads better than being on a main ward. On 48 hours bed rest but hopefully if bleeding ok can move about more then. Nice to have own shower room and privacy.
So far no side effects except feel shattered. Been given mouthwash. eye drops and anti sickness tablets. hopefully i'll be lucky and escape anything too bad.
Anyway, I'd better go, feel another nap coming on! xxx

Honeybunny so sorry to read your story what an awful few weeks you have been through, the staff are great at charing cross though aren't they? Personally I found it a slight relief when I ended up there as I knew something wasn't right & local hospital/gp were fairly useless due to it being such a rare occurrence, I had started to wonder if I was going crazy so to be around people who knew exactly what I was talking about understood my fears & concerns was a comfort, I hope you respond well to the treatment & experience minimal side effects xx

Amy sorry to hear that you are also experiencing this but it's good that you have had a negative result and that your hcg appears to be down, it is so frustrating not being able to TTC, the only advice I can offer is to fill that time with positive things, this is certainly what I am trying to do xx

That's kitty & Rosie for your replies I am due to go for my 6 week check up next week so been feeling a little anxious about that but I am sure all will be fine & hopefully after it I will feel able to close this chapter and enjoy the next year before TTC again.

Have a good weekend all x

honeybunny I was in Charing Cross a couple of weeks ago with a lovely girl who had a very similar experience to yours. What a terrible time you've been having! I definitely felt relieved when Charing X admitted me after two months of on/off bleeding and cramps. I hope you're feeling okay now and don't feel sick. Much better to be in your own room. Although I liked meeting the other women being on the oncology ward is not that lovely. Thinking of you and do let us know how it goes if you feel up to it.

sunshine - so nice to hear your story and particularly to hear that the first few cycles were the worst - I don't feel great at the moment but they've doubled by dose of follinic acid as I had some impressive mouth ulcers so hoping that'll make me less inclined to sleep 23 out of 24 hours.

kitty and Rosie thanks for your support! - how are your hcgs?

btw anyone had any advice about ibuprofen and methotrexate - i notice various websites say they can interfere with one another?

Hi guys, well I waited and waited for a phone call - and today I found out I must have had a molar pregnancy as I received a letter requesting a urine sample 'following your molar pregnancy' from Western Park Hospital. I feel so sad about the news and devastated that nobody called to discuss anything with me.

I was told in my second scan that they 'thought it was molar' but it would be clearer in the surgery as they can usually tell if the tissue is molar by the formation. But nobody told me anything after, then I was told somebody would call me... and just to be left with this letter, which by the tone seems like I should know it was molar.. well it sucks.
\

Hi Jenni, somebody really should have discussed and explained all this with you. You should call Western Park and say that this is the first you've heard of it and that you need a face to face consultation. You will need to know if it is complete or partial too.

I'm very sorry, it's a difficult thing to take in and deal with and can be a horrible shock. You will be fine, and although little comfort at the moment, at least they've diagnosed it now. Any questions, do ask.

Sending lots of love.

I everyone I've read a few messages and hoping someone can help / advise . We went for our scan this Friday I should have been 11 weeks pregnanct with our 6th child but was told it was a molar , I've never experienced this before and have no idea what type ( partial or complete ) , thing is I've had none of the symptoms that they said I should have had , I've not swelled up or got a big bump , no extreme nausea / sickness , no heavy bleeding or abdomen pain .. It's been just like my other normal pregnancies . She didn't show us the screen at the scan but they're booking me in this week for an urgent ERPC ... But I'm still not convinced , how can this be when it's presenting as a very normal pregnancy , I had my bloods done at 8 weeks and whilst I don't know the result of my hcg from that I know it can't have been extremely high or low as I've not heard from anyone . What do we do ? I'm so confused and heartbroken x

Thanks Hels, I will do that tomorrow.
The letter also said that my chances of a second molar pregnancy are now 1 in 75 and DH doesn't want to try again as those odds are too short for him, so feeling a bit like something has been stolen from me.

Hi ladies,
I've found out today that my recent miscarriage was due to a partial molar pregnancy, discovered when they tested the tissue removed during my ERPC. This was upsetting & unexpected news but the bit that has upset me most is that we would have to wait 6 months before trying again. I already feel so behind where I want to be & can't bear the thought of waiting so long. I don't have details of my HCG levels yet as I need to wait to hear from Weston Park. Is there any chance I might not have to wait 6 months? I know it could be so much worse but I feel such a hole in my life with the loss of this baby & I was hoping that focusing on TTC would distract me. Now I'm going to seriously need a new hobby! I've read a few posts on this thread but not quite ready to take it all in yet. I'm sure I'll be back to read in more detail once things feel more real.

Hi Ladies,

I'm so sorry to see so many new names here as it means you are all going through a very sad and scary time. I have to say that this forum has helped immensely and so I hope our notes can all help you just as much.

Honey I am so so sorry to hear your story! I hope that you are getting the care you need at charing x. From what I've heard it is the best place to be if you have a molar pregnancy. I know that you must be scared and very alone going through these crazy emotions of losing a baby (even a surprise baby!) and finding out you have a molar pregnancy too. What I do know is that all of your ups and downs are normal. It is definitely ok to mourn your loss and please reach out for all of the support you need. Miscarriage has to be one of the most lonely things a woman can experience and a molar pregnancy is even lonelier. We are all here for you.

Amy I'm so sorry for your loss. I am so glad to hear that you reached negative HCG levels quickly though! That is a great sign and Kitty is right, I think you should talk to your doctor about your wait time since you hit negative so quickly. Sending you lots of hugs and hopes that you will soon be on the road to TTC again!!

Sunshine I hope that your 6 week check up went well!! I know the anxiety of waiting and the unknown can be really debilitating. Each week I think it will maybe be easier until I get some worry in my head that maybe I won't be ok at the next test. I'm sending a big hug your way and hope that all is well with you.

Jenni I'm concerned about how your doctor is handling this! It seems pretty insensitive that they didn't call you to follow up at all. Can you talk to your gynecologist about this and have a personal blood draw done? I hope you can get some information soon! And the chances or another molar pregnancy are only 1%. I'm not sure if this was your first but, I hope that given time and additional information your DH will reconsider TTC. I am so so sorry you are going through this, you have every right to feel like something has been stolen from you. I hope you get some clarification soon and are able to head in the right direction going down this bumpy road.

Mrs12345 I am so sorry for your loss. I understand the shock and confusion because I didn't have any symptoms either. I had a partial molar pregnancy so, we were able to see a heartbeat at 7w4d. I thought we were just fine! And then no heartbeat. I hope that you are getting the support you need and that you can find some comfort here. These ladies have seen it all it seems and we can definitely be here to hold your hand. Big hugs going your way!!

Rascal I'm so sorry for your loss. I know how shocking it is to receive the news that you have to wait to TTC after a miscarriage when all that you want to do is move on and be pregnant again! It is tough, I'm not going to lie. I count days and weeks and try to figure out when I'll be 'back on track' but, you will definitely get though this! Keep visiting us here and we will be here to listen to all the worries and fears and drag you from step to step with our hope and good thoughts for you. Hang in there lady, you are going to be just fine.

Hels How have you been? I hope your treatment is going well and your HCG levels are down. My levels are still going down and I got to skip a week because I was on vacation so fx that my next result is negative!

Kitty big hugs, I know you'll have some great news to share soon!!

oak pompey purple sending good thoughts your way and hoping you are doing well!

Here is a link that might help you ladies find some more in depth information:

www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CDsQFjAC&url=http%3A%2F%2Fmymolarpregnancy.files.wordpress.com%2F2013%2F06%2Fthe-management-of-molar-pregnancy-for-patients.pdf&ei=2l1_U432KK7hsATd0ILoBg&usg=AFQjCNFRsZ-fTeh-EN_HCMjOLdv9OSK3LQ&sig2=px2WimHh675K4kyEeJmmSA&bvm=bv.67720277,d.cWc

Jenni my understanding is that it's more like 1 in 100 chance of another, but again, better to get clarification. Likely your DH is just upset and that's his knee-jerk reaction? Hopefully he'll come round but also he should understand how much this means to you and that you don't get everything first time round. What are the statistics - 1 in 4 pregnancies end is some kind of miscarriage? - You can't just give up! ... I say half way through a course of chemotherapy ...

Mrs P - so sorry for you both. I'd simply ask to see the images of the ultrasound, it's totally fair you should have some sort of confirmation before you have the operation. I saw mine on the screen and although upsetting, at least you then know.

rascal yes, it's tough being told to wait but I suppose the way to look at it is that it's for your own health, so they can be certain you stand the best chance of a healthy pregnancy next time round. I'll have to wait a long time which is very irritating since neither of us are getting younger but I'm trying to focus on the fact that it'll give me plenty of time to get over the sadness of all this.

I'm so sorry to hear everyone's news. I hope you all have good support around you.

Mrsp12345 - I would definitely ask for a scan if you haven't - you deserve complete reassurance beyond all doubt. I'm so sorry you got so far along without any warning anything was wrong. I also had no symptoms and everything was exactly as it was with my pregnancy with my daughter. I only found at at 7 weeks as we had an early scan for peace of mind, no other reason. It's awful. I hope you're okay. You're not alone!

Jenni - I have only ever heard 1/100 for a risk of another molar and when I was at Charing Cross I spoke to the geneticist for a long time who said that when it comes to a partial (which yours was suspected to be right?) the risk is actually lower than that. The risk of recurrence is more like 1/100 with a complete molar but for some reason they combine it into one. But she actually said the risk of another molar if you had a partial was actually more like the risk of the general population's anyway (which I think is anywhere from 1/600 to 1/800. I asked a few questions and pushed the Drs quite hard about what they know about the cause of the increased risk when youve had one molar and they said they dont know - all they have is the figures showing it happens more often. The reason I was asking a lot is because I had a partial and was thinking that if that was a case of two sperm and one egg (or perhaps even a double headed sperm, I think those can exist??) then surely the likelihood of it happening again is pretty rare and a freak thing rather than any predisposition to it happening? (unless the woman's body has a tendency not to recognise it's not viable and run with the pregnancy anyway). Whereas a complete might have more to do with the egg which could be what makes it more likely to happen again? Either way I still think 1/100 is fairly low, that's only 1% chance. I hope your husband comes round to trying again. It's really harsh how you were told as well. I hope you are treated better from now on.

Rascalrae - the wait time was the thing that got me the most too. But as Hels says it'll probably feel important to have waited a bit to process all the sadness and I'm sure it'll go quicker than you think. That said, if it was a partial the guidance from charing cross (one of the leading centres in the UK) is that you only have to wait 4 weeks after your first negative result. I originally thought I was going to have to wait much longer till it was confirmed mine was a partial. Are you in the UK and registered with one of the specialist centres? I hope your wait time can be reduced. I did a lot of research into this when I thought I had to wait longer and kind of decided I would only wait three months after negative as the risks of recurrence are so low then. It seems a lot of people dont wait and by the time you get pregnant if it doesnt happen straight away you could be through the follow up period anyway. I hope you get some better answers soon.

hels thinking of you - it must be so tough. I think you are so brave. I hope you are managing okay. I'm sure it won't be long until you can put your treatment behind you and move forward in a more positive direction. Always here if you need to vent.

xxxx

Hi Ladies,

I'm just dropping in to see how everyone is. Sending love and support to everyone!

Big Hugs!

Thanks for the messages Rosie, Hels and Kitty. I'm feeling calmer and more ok with things this week. I've been reading the book The Happiness Project and focusing on positive things. Got a challenging weekend coming up though when I'll see a number of school friends who have children or are pregnant. Hope I can be brave.

Sounds like the advice at Charing Cross is quite different to Sheffield so really helpful to hear what you've all been told so I can ask more questions. For example, my letter from the unit said the probability of a further molar was 1/75 but I'm sure 1/100 is more accurate.

My first test result was quite low so providing it goes down, maybe it won't be as bad as I imagined.

How's everyone else doing?

Sending lots of good wishes x

Just stumbled across this thread today while doing some googling, and thought I would add my story.

I had a complete molar pregnancy in November of last year, and it was discovered in an ultrasound at 12 weeks.
My HCG had skyrocketed to an astounding 1,800,000 (OBGYN said he had never seen one so high...) and I had been so incredibly sick with morning sickness that I lost 9kg (56kg to 47kg) in a month from not being able to keep anything down.
I had a D&C (what we call a ERPC here in Canada) that same day in the hospital because I was basically an emergency case. The numbers were so high and the mass of cysts so large I was considered a high risk case. Two months of weekly bloodwork followed and at first the HCG dropped really well, which was really encouraging. it dropped all the way to 2,000. Then it plateaued, and finally it started to climb.
I started chemo in January of this year, a combination therapy of methotrexate and dactinomycin simultaneously. It was admitted in two week cycles (in the hospital for three days every time), and thankfully I responded well. I had five treatments (methotrexate drip for four hours, plus a shot of dactinomycin on one day, and another shot of dactinomycin the second day).

A CT scan at the end of it all revealed that lesions in my lungs that were visible in the first CT scan before chemo had disappeared, and were likely an indicator that it had already spread to my lungs. I am very thankful for my medical team to responded quickly and aggressively in my treatment and I am now consistently at 0 for my HCG counts!

I finished my last treatment at the end of March and spent about two months recovering before going back to work.

Now hubby and I just have to wait a year until we can try again. It seems like forever but I know the time will go quickly and now I'm just focusing on building my health and energy again.

If anyone has any questions about my experience, please ask! I feel like I have experienced the whole journey of treatment and emotions and if I can help support anyone else I would love to.

Gosh pipt00k your experience sounds really scary. Great that you're now back to normal & you and your hubby are keeping positive and focused.

I have a question for all you ladies about bleeding. I bled for nearly 3 weeks after my ERPC, some very heavy, some more like spotting. It stopped for 2 weeks and I thought that was the end, but it started again today with some clots. My first urine sample showed a hCG of 1.45 which I was pleased about as its very low but I have to wait to see if it will go down. Is it 'normal' to have bleeding & clots start up again? I imagine it is but I wanted to check with others. I'm still testing + on hpt so I know it's not a period. Should I just get used to these random bleeds & stockpile some pads?!

I just had a miscarriage 3 weeks ago. Found out yesterday at my d&c follow up that it was actually a pmp from the pathology reports. I'm waiting now anxiously to see what my hcg levels are. I didn't get much bleeding after the d&c but now I have cramping and sore breasts. Not sure if its my period coming or just having a lot of hormones in my body from the pregnancy still. I'm really nervous and hope my levels will drop on their own. As I do not want to have chemo. My ob said they will check them once a month, but most people here seem to be getting them checked every 1 or 2 weeks. Is it odd for them to check every month? It's been so hard going through this. At first my ob told me we should wait 3 months to ttc but now since it shows it was a pmp she wants me to wait 6 months. I'm so depressed and can't seem to be positive at this moment. I have a 3 year old daughter and hate having her see me sad. But I need to stay positive for her and my hubby.

rascalrae I'm so glad that you're feeling more positive this week! I think that is the biggest battle. If you're looking for inspiration pick up a copy of Carry on Warrior too. That one helped me remember that I can be strong even through the hard things. I hope that you were ok this weekend, it is not easy being surrounded by women who are where you want to be when your own future is so uncertain. FX for low results at your next test!!

pip Wow! Thank you for coming here to share your brave story with the women on this forum. Hearing stories like yours and knowing that you made it through and are even willing to help us out is so amazing. Thanks so much for joining this support thread. I hope that you and your husband are doing well and that this year flies by for you. I know when you're staring down a set amount of time to wait that it seems like it will be forever.

Sophia First, I'm sending you a big hug. I have been where you are and it was devastating. I am so so sorry for your loss. One of the crap-tastic things about having a molar pregnancy is that you still have the hormone in you body and it takes a while for everything to balance back out. I know that you are anxious right now about all of the possible outcomes, I was certainly feeling quite scared. But, whatever happens, you will be just fine. And it's good that you had a partial because all of the statistics are much lower with that diagnosis. Have you been able to find any information about all of this? As for the blood tests, I went every week but it sounds like a lot of the ladies go every two weeks. it might be worth asking why yours are monthly. Maybe your numbers are already so low that they don't think you need them more often? I hope thats the case. Please know that this is a great place to find support. I don't think I would be able to get through this without all of the kind ladies here sharing their stories and making me feel less scared and alone. 'nother big hug :)

Hi Pip, you poor thing! What a journey to go through but so glad you're in the clear now. Thanks for sharing your story, it's always helpful to hear other people's experience's. I have a question: I have been on methotrexate for a couple of months as my hcg started to go up after an ERPC for a complete molar pregnancy. My hog has been at less than 2 now for 3 weeks which is good but I started bleeding a few days ago. Could this be a period? The doctor I spoke to at Charing x thought so but then the specialist team said they just didn't know ... I thought you didn't get periods on methotrexate ??

rascal yes, I bled for about three weeks after an ERPC (D and C), it stopped for a month then came back for a week, stopped and came back two weeks later. My numbers went down beautifully for two months then started to slowly go up. Having said that (and I realise that's no comfort) other people have had heavy on off bleeding for months and it's just been their body getting rid of the molar tissue and they haven't needed treatment. I think random bleeds seem to be fairly par for the course for lots and lots of people with this though. I don't really understand urine sample numbers but that sounds very low, so surely a very good sign.

Sophia as Rosie says, so sorry and don't worry as you whatever happens you will be okay. Although the wait is painful it is definitely to give you the best chance of a healthy pregnancy next time round and should allow you some space to move on from this. I think regimes vary as to hcg monitoring. I think the UK is always every two weeks post ERPC/D and C, depends where you are? Maybe your GP would let you have slightly more frequent blood tests if you wanted?

'hcg' rather than 'hog', three lines down! Mind you, I'd probably rather be fretting about hogs rather than hormones.

I'm so sorry to see so many new people here but welcome. I hope you are all finding this and other support useful. It's such a hard thing to go through and carries so many complicated and conflicting emotions.

Hels - so pleased to hear you're at negative now! That's such great news. I hope it stays there and you can slowly start to recover and improve.

Pip - thanks for sharing you're experience. Sounds like you've coped so well and I'm in awe of your positive attitude. I hope this year passes quickly for you and that you can try again really soon.

Sophia - I hope your levels were low and you can relax a bit. I have a one year old daughter and it has been very hard to julggle all this and minimise the effect on her. She wasn't even 1 yet when I conceived the pmp and I felt so guilty for neglecting her and letting another pregnancy and loss take away from her. It's very hard but the great thing about daughters is you can explain it when she's older and I'm sure she'll be very udnerstanding. I'm sure you're still doing a wonderful job of being a mum and this does get easier with time and each progression through the journey.

I feel very lucky to have progressed quite a way since my initial diagnosis but I fully remember the raw and unreality of the pain when you first find out and I really sympathise. I think it's a long and slow journey to really properly recovering mentally and physically and the best thing you can do is take each day at a time so you don't fill yourself with anxiety about what lies ahead, hard to do though. Please anyone feel free to pm me if it will help. Thinking of you all.

Hi im donna, 30, 3 cgikdren from PM. This was my firstvoregnancy with my new partner of almost 2 years.

I was 6+4 weeks and went to a and e with pain on one side, they did a scan and said they couldn't see a pregnancy at all in my womb or tubes, i was devastayed. They said it could be a molar pregnancy as the lining of my womb was quite thick or it could be an ectopic that was too small to see or a normal pregnancy that was too small to see. They did a blood test to check hcg and it was 1400 ish. they tested my blood every 48 hours for about 4 days and decided my hormones weren't going up quick enough which normally points to ectopic. They kept me in on the Saturday night with a "pregnancy of unknown location" but sent me home the next day as pain was ok. Anyway that night I bled a tiny bit, went back the next day for more blood and scans still no baby visible and still hcg rising slowly, anyway after more bleeding on the tues and weds I ended up having a laparoscopy and a d and c. They didnt find an ectopic during the laparoscopy so i still have my tubes etc thank god, but now because my hcg wasnt dropping as quick as they expect after a d and c and then went up so they suspected a molar pregnancy again, I went in Monday for more blood and the hcg has gone up and I have since been told the cells removed were positive for partial molar. The day I had my methotrexate injecrion my hcg was 2900 and on day 4 it was 2636, I don't think that's very good? Should I be worried? I go in tomorrow for day 7 bloods to determine if the hcg has dropped enough or if more methotrexate is needed.
Does anyone have a similar experience? I feel there is no one to talk to :-(