Partial molar and molar pregnancy support thread - all welcome!

(506 Posts)
MrsJohnDeere Wed 28-Nov-12 11:06:13

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.

nerual Mon 04-Feb-13 19:24:47

Sorry you have had a tough day MrsD sad
It's so hard not to get freaked out with all the stuff about MP that is online. The one good thing is that it all the documentation says that it is very easily cured with the chemo, if it comes to that. I can't imagine what it's like to have chemo though, it can be anything other than horrible surely. A lot of people seem to have quite positive stuff to say about charingX hospital though, I think you are well taken care of there if you are admitted as an inpatient.
Have you looked at http://www.molarpregnancy.co.uk/forum2/ ? You have to register to see the forums but there seems to be a lot of virtual support going on there too...
Thinking of you...

nerual Mon 04-Feb-13 20:01:23

Forgot to mention, I went and had a private scan today, which was reassuring and worrying in equal measures...although I have heartbeat, I also have an 'area of bleeding' which may or may not become something more serious...will just have to wait and see.

nattnothing Tue 05-Feb-13 11:19:25

Nerual - I'm so glad that you seen a heartbeat on the scan that's so encouraging, I really hope and pray that the area of bleeding is just something trivial and will pass in time. It means you now have a scan that you can compare with your next scan on Friday and hopefully that will show an improvement in the bleeding area - Ill be thinking about you and keeping everything crossed that the next scan is even more positive.

MrsJD - I fully understand how anxious you must be about treatment - I would be the same but as my husband often says sometimes the stuff on line is not always the most positive and many people tend not to go onto forums unless things have not been great, so there will be lots and lots of really positive things not even online. I agree with the others, anything about CharingX is always a really positive experience and at least this will speed up you route to Zero and you can be finally re-assured that you will have the best treatment until you get there! I hope you will have little side effects and breeze through the treatment quickly, I think you will as you numbers are still quite low when compared to other who need treatment - when do you go to charingX - thinking about you ...... stay strong smile

I went to GP who was very good and she is going to chase up urgent gynae appointment with local hospital and hopefully get back to me today - I have had to take some time off work due to pain etc but hoping to get soon asap as I need some answers to how my body is reacting 3 months post D+C. I also spoke to CharingX and they were helpful in directing me what to tell GP and what to request from local hospital. Hoping that things look up for us all soon and keep in touch ......

MrsJohnDeere Tue 05-Feb-13 15:51:06

Nerual - great news about the heartbeat. I know you're not out of the woods yet, but it gives some hope, doesn't it. I'll be keeping everything crossed for you between now and Friday.

Nattnothing - yay for your GP. Makes a huge difference if you have a good one on your side. Hope the appointment comes through soon.

Thank you both for your words of encouragement and positive thinking. It really helps. I've got blood tests tomorrow. Desperate to know the results, but scared at the same time. I feel really awful today - fever, nausea. Probably something totally unrelated but it's hard not to think the worst. I feel very pregnant today - got the yucky metallic taste in my mouth, can't drink coffee, and boobs hurt - but I absolutely cannot be pg, so am panicking a bit. Could be a surge of hcg?????

nerual Tue 05-Feb-13 16:38:45

Will you have to wait long after the test to get your result MrsD?

MrsJohnDeere Tue 05-Feb-13 16:46:32

Normally it's a week. As this one is so crucial I'm hoping they might do it quicker?

nerual Tue 05-Feb-13 17:50:22

I hope so too. A week is a loooong time... sad

nattnothing Tue 05-Feb-13 21:59:13

MrsJD - a week is a long time to wait. I go to the local hospital (Gynae outpatients) get the blood draw done first thing in morn, then I walk it and the kit to the hospital lab and drop it in for centrifuging - it means the lab posts it in the first post and charing cross get it the next day - generally I get blood draw on Monday and get results Tues/Wed. If I went to GP, then it would prob take a week like yours and this would wreck my nerves.

If you feel really unwell - go to A&E and ask them to do an HcG and they could have the results for you in a few hours - that's what I have done the last two sunday's and it means I know the result before Charing Cross - just a passing thought if you're really stressed out.... However, I have found that other than the blood tests the local hospital have no clue about molar pregnancy which is disappointing as that's why it good to be able to chat to others going through the same thing.

Try not to panic about the symptoms as I have a chest infection and of course, was thinking I had metastases in my lungs before I got the HcG result!! I think it is only natural to think the worst at times so try not to torture yourself too much but I know its so tempting deliberate over and over in your head!

I'm still waiting on urgent gynae appoint - well probably a week or two off I imagine. I wrote a letter of complaint today to local hospital re: lack of follow up care for molar pregnancy complications etc etc made me feel a bit better, even though I work for the health service! This will be the first time I've been off sick in 3-4 years and it annoys me that I still have no answers and medics here know so little - at least Charing Cross will have all the answers for you so try and rest assured on that front..... I feel a bit better today less pain and bleeding but still there and I'm afraid to go to work in case I have a big bleed or have to leave a meeting etc due to pain...

Hang in there MrsJD, I will be thinking about you over the next few days

How are you feeling nerual?

MrsJohnDeere Wed 06-Feb-13 09:16:43

Got a GP appointment this morning. Had a temp of 39.9 last night, although it has come down a little now. Probably unrelated but it's hard not to think the worst!

nerual Wed 06-Feb-13 10:22:25

Sorry to hear about fever MrsD, let us know how the doc appt goes. Could just be flu at this time of year I guess.

i am feeling less crampy today, hopefully that is a good sign. Just a couple more days until scan now, really glad I had one on Monday as I think the waiting would have made me so anxious.

MrsJohnDeere Wed 06-Feb-13 14:02:29

Got anti-biotics. Doc thinks its an infection rather than flu.

Good that you've had no more cramping or bleeding.

Ashoething Wed 06-Feb-13 18:25:30

Hi ladies.i am still here and happy to chat about my experiences of chemo and cx.i hope your results are good mrsjohn but please try and remember that if the worst comes to the worst you will get better.you will come through this like i have.all the best to all on this thread.

nattnothing Wed 06-Feb-13 19:28:59

Ashoething so glad you have come through the treatment and are so positive, that's great to hear for us ladies not quite there and gives us all hope.

Nerual so glad you are feeling a bit better and I really hope that means that your scan will go well on Friday.

Mrs JD hopefully you will feel better soon when the antibiotics get to work! Hope you are feeling a bit more upbeat about things?

Much the same here with me, just been passing more clots and have more heavy bleeding and severe abdo pain this evening- now considering getting a private consultation, think I will follow this up tomorrow as I just know that all this isnt right 3 months post D&C - I just need to know the reason for all these large clots and bleeding. Mrs JD are you still having these symptoms?

MrsJohnDeere Wed 06-Feb-13 20:10:16

Still bleeding but not large clots. Sort of strings of blood inside jelly (lovely!). Abdo pain flares up once in a while but mostly I don't have it.

Temp still sky high. Hope ABs take effect soon. On the plus side it's a great way to lose some weight; barely eaten in 3 days.

nerual Thu 07-Feb-13 16:12:13

how's your fever today mrsd, feeling any better?

nattnothing Thu 07-Feb-13 16:15:04

Mrs JD we will both be skinny minnies in no time as it takes a lot to put me off food but this whole saga has managed it. How are you feeling today - any news from Charing Cross or result on your latest bloods?

I phoned hospital today and they told me 6 weeks to be seen! To cut it all short Charing Cross phoned them and funny enough I have an appoint tomorrow morning with consultant who has also received my complaint! They are now freaking out I guess and telling me I was never discharged and that consultant new nothing about my A&E attendances etc etc. Thank goodness for Charing Cross and my GP but it's awful how quickly they try to lie and cover themselves! Anyways there may be a change that I have aterial malformation or AVM which can be common after molar pregnancy (main symptom is ongoing bleeding, however condition is again very rare) and can actually be life threatening, hope not! My consultant has to phone Charing Cross after he has seen and examined me and I also have to phone them. If I have AVM I will make sure that it is logged as a Serious Adverse Incident within the Trust as this has been appauling! Anyways I will keep you posted and let you know if Iam the person who always develops the rarely rare complications! Mrs JD there is a chance I might see you at Charing Cross!

Nerual - really hoping your scan tomorrow goes well, please let us know how you get on - will be thinking about you.....

MrsJohnDeere Thu 07-Feb-13 17:32:45

Still got a fever and still feel horrible. Another exciting new development today - I passed a lump of tissue (or something) . About the size of a blueberry and shrivelled. Dh tells me I should have kept it to show someone, but I didn't think to. No new from anyone but it is too soon.

Nattnothing - great news that you have an appointment so quickly, but ridiculous that you had to go through all that to get it. Good luck with it. I hadn't heard of AVM. Will google now!

Nerual - good luck for tomorrow. Will be thinking of you too. Hope it is good news.

Ashoething Thu 07-Feb-13 19:40:39

mrsjohndeere-molar tissue is often described as being a bit like grapes-does that sound like what you passed? I think it is probably a good sign though that your body is trying to get rid of it.

neural-the thing is so many doctors-even experienced ones have never dealt with a molar pregnancy. I was told very matter of factly by one junior gyne doctor that if I had any questions she would have to go and fetch a text book!

When I fell pregnant 6 months after finishing chemo-very much against the advice cx give!-I had to explain over and over again about the mole even though I was at the same hospital that had originally diagnosed it and had also liased with cx over my treatment! I also had to fight to have extra scans as they were quite blase over my fear of having another mole!

Keep pushing for the treatment you deserve-put stuff in writing. All the best.

MrsJohnDeere Sat 09-Feb-13 08:41:38

Nerual, nattnothing - hope you are both ok??

nerual Sat 09-Feb-13 17:15:37

Yes ok thanks... had scan on Friday was pretty much the same as monday. Managed to panic myself as I expected it to have grown more than it did in 4 days, but I'm just telling myself measurements can't be that exact at 6/7 weeks. Still area of bleed, and gestation sac is an irregular shape, which can be a bad sign, but still a heartbeat so we are still in business...

How are you today?

MrsJohnDeere Sat 09-Feb-13 18:46:59

Good news that there is a heartbeat. smile

What happens next? When will you have another scan?

I feel a little bit better, thank you. Fever has gone but I can't do anything. No energy at all. Bleeding has got much heavier.

nerual Sat 09-Feb-13 19:26:31

The EPU said that they will now send my notes over to my GP, who should get them in about a week, then the GP need to register me as preg and refer me to my hospital of choice as per a normal pregnancy. Once my GP has the notes, I will go in and see them and try and get them to get me another early scan (probably around 8/9 week mark). If I can't get it easily then I'll just get another private scan in a couple of weeks.

Glad to hear you are feeling better although really not good that bleeding heavier. Do you get the results of your blood test soon, Monday or so?

nattnothing Sat 09-Feb-13 20:50:46

Hi folks, I havent written anything but have been continuously checking re: news of nerual and glad that this scan also shows a heartbeart, which is great for such an early scan. It can be so hard to get the measurements right so early on, so dont worry to much as even a tiny tiny movement from the scanner can change things dramatically on the early scans - good news so far though which is great! Did they say what could be causing the area of bleeding? Are feeling a bit more positive nerual?

Mrs JD, sorry to hear that your bleeding has got heavier, you may need to get you bloods done as if you are anaemic, this will leave you feeling totally drained! Hopefully it will settle soon and you should hear about your levels early next week, just rest and look after yourself for the next wee while... Is the bleeding really heavy?

Had my appointment with the gyane consultant at local hospital yesterday, it was a bit uncomfortable as he was obviously being overly nice due to the complaint and the fact Charing Cross had been chasing him - had scan, inflamatory makers, hcg and swaps done. He will discuss the results with Charing Cross on Monday/Tues and let me know the outcome and the way forward - feeling a little bit nervous as scan showed thickening of uterus linning so not sure what is causing this..... Anyways at least I'm being more appropriately monitored which is re-assuring - so will have to wait and see! Hopefully levels will still be falling.

Will keep you posted as soon as I hear more and hoping that Mrs JD some positive news next week re: levels etc.

MrsJohnDeere Sat 09-Feb-13 22:38:50

Glad it went ok yesterday and you don't have to wait long for the results.
What might thickening of the uterus lining mean, in practice? Is that a mole thing or something else?

Yes, bleeding now heavy. Bit of a worry. You know when you phone CHX and they say not to worry abkut bleeding so long as you aren't having to change a towel every hour, well it's heading that way. confused I don't think there's much I can do before Monday, so I just have to watch and worry!

nattnothing Sun 10-Feb-13 11:26:47

Hi mrs JD - they didnt commit to saying what the scan meant, think they need the results of hcg and swap etc as it could mean a number of things and they want to discuss with Chx.

Mrs JD if you are going thru more than x1 pad an hour or having gush like bleeding call out of hours GP or go to A&E - they may be able to give you tablets to stop the bleeding and/or scan you to see what is going on and they can do a HcG level and you would find out the result of that today (if a&E) - please consider these options - if you want leave you email and I will email you my phone number if you want to chat, feel free. I hope you are bit better this morning, let us know if you are ok? smile

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