Partial molar pregnancy

[DJ202]

Hi all! I've had a partial molar pregnancy and am looking for similar stories/ advice/ support!

Here's my story. I don't have any children and have been diagnosed with infertility, am 38 and was getting ready for ivf when I got pregnant. We were delighted! However I've suffered a second miscarriage at 9 weeks which was managed with a D&C 3 weeks ago. As instructed by my nurse, I did a pregnancy test at 3 weeks post-OP, which turned out positive. I didn't give it too much thought but called the clinic. They asked me to come straight in for blood tests, which i did. It turned out that preliminary histopathology results showed a partial molar pregnancy. I, as so many, had no idea what I was working with and the doctor who I talked to on the day had to literally Google information on her phone when explaining the situation to me, some of which turned out wrong after I did my own research.

After the miscarriage I slowly got back to feeling better, and this diagnosis set me back hugely. I'm in a state of limbo and can't move on because there will be more tests and more time spent at the hospital. I feel like I've spent most of my time over the past few weeks at hospitals (I also had a growth removed from my cervix, another cancer scare, but luckily this one turned out benign).

I'm really scared now that if I need chemo and all the large waiting after plus early menopause onset due to chemo will mean I'll never have a child.

Do you have any advice? Good experiences? Tips on how to cope? I have days where I think that I couldn't possibly go through it all. Thanks so much for reading and all the best on your journeys! xx

[Koala365]

I had similar just before the beginning of lockdown last year. The hospital called me in to see them in March after I called them to say my 3 week post ERPC pregnancy test had come back positive. They explained it appeared to be a partial molar pregnancy and what that meant including monitoring by a specialist unit at Charing Cross hospital who were the experts in this area for 6 months and possible chemo afterwards if my blood and urine results weren't back to normal. Due to lockdown, I never got to go to Charing Cross, the two week test kit was posted to me and the tests done at my local hospital who sent them back to Charing Cross. I called Charing Cross about the test results and noted the numbers and that they were going down and asked them what we were aiming for. They were very helpful and it helped me understand and feel I was getting somewhere as I saw the numbers come down. Charing Cross then phoned me out of the blue at the end of April to say they had good news 1) my test results were back to normal and 2) they had done tests themselves on the pregnancy material (my baby) and discoverrd it was not a pre-molar pregnancy after all. They said that many hospitals err on the side of cautious and refer people to Charing Cross if it looks to them like it is pre-molar but this is a very complex area and most hospitals don't see many pre-molars but at Charing Cross they deal with this all the time and are the experts so could confirm upon analysis that it wasn't. They they sent me a letter explaining how the mistake could arise. I don't know where you are in this journey but I hope and pray either the same happens to you or your levels come down naturally by the end of the six months and no chemo is needed. I do understand your concerned- I was 43 at the time and feel it robbed me of 2 or 3 months of trying again when I was already at läßt chance Saloon and now I am doing IVF to play catch up. All the best xx

[Koala365 in reply to Koala365]

Sorry predictive text seems to have changed all my "partial molar" to "pre-molar". Hopefully what I said makes sense to you though. Very sorry for your loss and hope you get good news from the monitoring soon.

[Cinderella5]

Sorry to hear about your loss ans that you're now facing the possible diagnosis with a partial molar pregnancy. Im sure the nurse would have explained the chances of a partial mole requiring chemo is extremely low. Most patients recover physically (mentally is tougher) very quickly and are able to try again once they have had 2 normal blood/urine results. The chances of having a second are 1 in 100. They are extremely rare in the first place so you've been incredibly unfortunate. I presume you have your first bloods back? There are 3 centres in the UK for molar pregnancy that you can talk to for support too, Charing Cross, Sheffield & Dundee. I know a bit too so feel free to PM me if you think I can help. Massive hugs.xxx