anyone else currently going through molar pregnancy follow up?

[ruddynorah]

anyone else been diagnosed with a molar pregnancy and currently going through follow up?

i had a missed miscarriage end of september, have just been referred to sheffield with a partial molar.

i'm now awaiting first blood results. basic urine test showed faint positive, and i seem to have got my period today..although i know this may be a false bleed or the mole shedding. i had a very light bleed after my ERPC at the time i'd have expected a period, but this one is heavier and redder (tmi!) i'm hoping this is all a good sign.

[Aitch]

oh ruddynorah, i'm so sorry, your poor wee prenancy.
habbibu's been going through this, i'll tell her if i see her.

[lil]

ooh no, but many sympathies, I have a friend in RL who had to have her womb removed along with the growth as she let it get too big. Very sad as she wanted another.

But sounds like you are over the worst of yours, so good luck for next time.

[JingleBennysAndJooniper]

I have a rl friend who had a molar

She had to go for chemo type treatment for a while, but is fine now.

Will try to drag her on here

hang tough girl

[NorthernLurkerwithastarontop]

Not me but somebody I know had a partial molar pregnancy last year. She did the 6 months follow up and got pregnant again just before the end of that time with a normally progressing pregnancy. It's a terrible shock isn't it and I know they found the waiting to ttc hard going but it is the safest route and I'm sure you will get great support from Sheffield.

[Habbibu]

How heavy, ruddy? I did, I have to tell you, get quite heavy gushing bleeds after some post-molar regrowth. Levels were 6000ish iirc - but some people on my thread reported similar heavy bleeds with no increase in hcg, so it's all a bit confusing.

I read my whole thread from beginning to end today - feels like it was quite a journey, and at the beginning it felt as if it would go on forever, but it sped up so fast at the end... Keep posting at let us know how you get on, missus.

[ruddynorah]

it's not like heavy heavy, just like a normal period. i just mean heavier than the first one, before i knew it was molar. that one was like brown..old blood i suppose. this is red like a proper one. and it times right with my 35 day cycle.

i've read tons about it. just hoped to find others on here on the same journey as me.

been on the molar pregnancy forum but it's pretty slow going. well, i guess it would be, not many of us out there in the grand scheme of things.

anyway, hopefully results will be available soon then it's piss pots a go go.

[ruddynorah]

lil- what do you mean your friend 'let it get too big'? was she not being monitored?

[Habbibu]

Oh, well, then it may well be your period - mine were very odd and potentially very embarrassing (standing in park trying to get dd to sleep in buggy while frantically phoning dh to come and help. Had to use dd's spare nappy...). Hope your results are good, and you're straight on to plain ol' follow up.

Will keep you company from just a bit further down the line, if that's ok.

[lil]

She was monitored, but she had a viable pregnancy alongside which she wanted to keep, so they both grew together. They wanted to remove it as a caeserian with the baby, but it was too well connected to her womb. I can't remember if they tried chemo, but they did try some sort of drugs to reduce it, but it was too late to do anything with the growth. Truly Horrible, but the baby was OK at least.

[ruddynorah]

i did think this morning when it started oh hell this could be gushing and passing clots and dare i say a 'jellyfish' as i'd read somewhere. but it's been just fine.

plus it's 35 days on from the last one. but i do know this can happen without it meaning your cycles really back.

just being hopeful i guess.

hope i'll be where you're at soon enough habbibu.

[ruddynorah]

oh i see lil. it was a twin?

[lil]

I don't know, do they always start out as a foetus? or can you just get an abnormal cell growth triggered by hormones?(feel embarassed how little I realised now!)

[Habbibu]

Partial mole has a foetus, lil - complete mole is abnormal growth with no foetus. I've read about twin pregnancies where one is a mole, and I'm not sure I've heard of one where the viable twin survived before. Your poor friend - how awful - so glad the baby was ok, but what an ordeal.

[ruddynorah]

it's very complicated. sometimes there is no foetus at all. mine is a partial mole, the placenta is the mole basically, a tumour, which means the foetus can't live of it so it doesn't develop. if there's any remaining mole cells left then these can continue to grow, maybe spread to other organs and become cancerous.

your friend's sounds like a twin pregnancy where one twin has been a mole and the other has been deemed viable.

[hazeyjane]

ruddynorah, hello, from the other molar pregnancy thread, I had a molar pregnancy in 2003, and have since had 2 dds. If the bleeding gets very heavy I would contact your local hospital. You could always phone Sheffield to ask them if it is ok, I know that Charing Cross were always fantastic whenever I rang in a panic about something (frequently!)

BTW I knew a woman who had a mp and had a healthy baby alongside (the mp was only discovered when she had a caesarian), she had to have some pretty intensive chemo but had a successful recovery.

[NewNameOtherOneWasObvious]

Ruddynorah - I started writing this but then lost the whole bloody lot before I could post. I'm in work and have to go to a meeting in 5 minutes (how rude!) so will pop back later.

[NewNameOtherOneWasObvious]

Oops - meant to say I had an MP at the back end of 2000 so just wanted to tell you about it, hopefully it will help

[Aniyan]

Hi Ruddynorah - I've just been referred to Sheffield following diagnosis of a partial mole in October.

Had erpc early november. My hcg on the day of erpc was very high. The level 3 weeks later was over a thousand times lower, and about 10 days after that I did a home test that looked to be negative - though it was a cheapie test.

I sent my first urine sample off to Sheffield last week and have just been told that it's 'not quite normal' and they'll need a couple more tests before they know if it's going down or stuck. Apparently they're not allowed to tell me the actual level - sounds a bit odd to me as they are my hormones after all!

I've also just had what I think was a period - not sure if it really was one as it was a bit lighter than normal and very dark brown (sorry, tmi!), but I'm trying to be positive as my levels have dropped pretty quickly.

We seem to be at a similar stage in the process - hopefully we'll both come out of it okay in 6 months or so

Hope you are feeling okay - it's a lot to get your head around, isn't it?

[mistlethrush]

Hi - I had mp prior to ds (and was ref. to Sheffield). MP didn't get picked up after mc (on holiday so not local hospital, although in England) so when I kept on going back to the Dr with heavy bleeding on and off they said it was normal and would all get back to normal - until I was actually examined which eventually led to a 2nd erpc which they hoped was final - but then trip down to Sheffield, lots of scans, and chemo starting (it was all a bit dramatic) - 4 months of chemo followed by a year not being allowed to ttc. However, ds (post mp) is now 3.5 and full of beans! (Still get monitored though). Hope you can get by without the chemo.

[ruddynorah]

thanks for your replies everyone. i'll bump this thread every now and again just to see how people are getting on and if anyone else gets diagnosed.

aniyan- great to hear from you. yes we do seem to be at about the same stage. nice to find someone else with sheffield.

[ruddynorah]

first piss pot has arrived. says i've to send it tomorrow. this is the start of it then.

[NewNameOtherOneWasObvious]

Evening ruddynorah (my meetings are finally done!)

I had a mole in 2000. It's quite a way back now (and pushed into the dark recesses of my memory if I'm honest) so this may take a while. Hope this is not TMI

I had been bleeding on and off for about 3 months (VERY unusual) before I went to the doctors in June of that year. The doc examined me and noted my uterus was swollen on one side then sent me off to the local BEP clinic.I had a pregnancy test there which proved positive (they thought about 3-4 months gone) and then had an internal scan. There was nothing in the uterus except a black shadowy area. I was booked in for a D&C and then went on holiday . If nothing was in the post on my return, then the tests would be normal and I?d have nothing to worry about.
However, greeting me on my return home was a letter saying there was signs of a hydatidiform mole (another name for this problem). Another hospital visit and a second D&C ? hurrah I thought, everything?s ok now. BUT ? not to be. A further pregnancy test was still positive. So I was referred to Sheffield (I think one of three specialist hospitals in the UK along with Charing Cross and one up in Scotland).

A molar pregnancy (or trophoblastic disease) is caused at the point of conception ? the male chromosomes either kick out the female chromosomes (no foetus) or render them inactive (partial foetus). The body thinks it?s pregnant and the respective hormone levels increase; the normal reading (i.e. when you?re not pregnant) should be zero. When I had various tests done in Sheffield, my reading was around 11,000. (I did hear of cases where the readings were hitting 500,000!!!).

Most cases (around 96%) can be resolved by D&C however, as in my case, the tumour had grown into the uterus wall so even a second D&C didn?t shift it. I went to Sheffield as an in-patient at the end of August / beginning of September 2000 and had a number of tests done including full abdomen scan, x-ray and head-scan (just to make sure it was only in my uterus ? thankfully it was). I had 3 months of chemo (intramuscular so I had less severe side effects and I didn?t lose my hair) followed by 6 months of blood-test follow-ups at Sheffield, then 5 years of 3-monthly urine tests and got the all-clear Feb 2006. They advised I didn?t TTC for about 12 months.

It?s great that you?ve caught this early as it is VERY treatable this way. I won?t go into the details, but there was a woman in the hospital while I was there who hadn?t known she'd had the tumour for over 25 years. It wasn?t pretty.

Don?t worry yourself too much ? although that?s very easy for me to say now ? your bleeding could be caused by all manner of scenarios? I bled almost constantly from the three months prior to diagnosis (most of it was like yours, the old brown stuff) up to about 2 months after the chemo finished ? the chemo was still working fabulously as my hormone readings were coming down a treat. I was told this was ok and nothing to worry about. If you?re at all concerned though, call Sheffield ? the staff are fabulous (including Professor Hancock? very busy man but truly cares about this field of medicine).

[ruddynorah]

thanks new name.

i have found the contact i've had so far with sheffield to be pretty good. i've been emailing the nurse there, jan, who always mails back within about an hour. i've just been really chasing everything up, making sure i'm on the system, that my blood's arrived etc. the epu where i am have been very slow to get things moving. Jan has been fab.

anyway, off to bed now. first sample goes tomorrow.

[Joolyjoolyjoo]

My mum had a molar pregnancy (in the late 70s, admittedly. I remember us being on holiday in the US for a month, and her having to send uriine samples back by post, but she was fine in the end, but it IS a worrying time. Hope it all goes well with you

[hazeyjane]

ruddynorah and aniyan, i found it really useful to have a diary with all my results, hcg levels and blood tests etc written down. Because it is quite rare and a lot of people haven't come across it, it is good to make sure you are in charge of your treatment, I think having a mp made me a bit of a control freak! It's also good to have for future reference (although I must admit looking at mine now, it makes for bizarre reading!)

It sounds like you are both pretty on top of things - good luck with your pisjoegs