Long, complicated miscarriage - will it end?
chocolatepenguin4 · 05/11/2016 10:39
Hi, I'm having a pretty complicated miscarriage and have so far found it very helpful to read other people's experiences. It's sad that anyone has to go through this but reassuring to hear how people got through it. I haven't found anyone else who's been through my complications though and wondered if anyone else has had this: I lost my baby at around 9 weeks, that was in August but I didn't find out until the 12 week scan at the beginning of September. I choose expectant management but after a while with nothing happening was advised to go for medical management to reduce chances of infection. I had the medical management twice and then surgery once, and still none of them have worked. I have retained products still and possible partial molar pregnancy (?! - only one dr out of many I've seen has mentioned this). I'm booked in for a second round of surgery on Monday, but have been warned it still might not get everything. Has anyone else been through this, and how did it end?? I'm also going through the grieving process and have found the Mariposa baby loss charity very helpful, particularly a service to mark my baby's life. Very much want to get the physical things over and done with to have some hope of moving on.
MonkeyPoozzled76 · 05/11/2016 22:35
Hi chocolate, I'm so sorry other hear of your loss, I read your post and it really sounds similar to what I've been through, I felt so lost as nobody else seemed to be having the same long drawn out problems so I hope I can give you some reassurance. I'm about 12 weeks post miscarriage now and am finally starting to feel better and, touch wood, my levels are down to negative and my periods have returned.
I found out I'd had a missed miscarriage at 10+3 during a routine scan for NIPT, baby was measuring 10 weeks. I chose to have the surgical management the next day as could stand to wait. Three weeks later I was still bleeding and getting positive HPT's. I had a scan and had retained products so I had another ERPC the next day. More bleeding and still more positive HPT'S three weeks after this and eventually my GP kicked up a fuss with the Consultant who then rushed through my hystology results. These came back as 'query molar'. The hospital consultant, although kind, had no idea about the monitoring or treatments for partial molar, the only info he could give me was from 2012 and completely out of date, I was terrified at this point. I was refered to Charring Cross for monitoring of my hcg levels. I did lots of reading and asked the ladies at Charring Cross lots of questions. I continued to have scans and weekly bloods at the hosoital too under the consultant I still had retained products (awful terminology) after all this. My hcg levels dropped slowly and after 8 weeks the bleeding stopped. I've since ovulated and had a normal period which finally cleared my womb, a scan has confirmed this. My hcg was down to 2 last week which is classed as negative by Charring Cross and I just have to do one more urine test at the end of the month to ensure it remains negative then I will get the all clear.
I still don't know if I've had a partial molar pregnancy as they recheck the hystology at Charring cross and mine has proved inconclusive so it's been send to genetic tests and I should know next week. Apart from the checks required should I fall pregnant again I don't think the outcome will change much for me as my levels have dropped, fingers crossed I should be able to try again come December.
If there is anything at all you'd like to ask please do, like you as well as the grief I've experienced the ongoing stress of all the medical appointments and scans has been overwhelming but I am coming out the other side now and you will too.
There is an excellent support group on face book, it's a closed group and all comments and posts are hidden from your friends, just search for 'molar pregnancy support' and ask to be added. It's really helped me, I'm also having counselling at the hospital which has helped me talk through everything.
chocolatepenguin4 · 06/11/2016 10:18
Hi MonkeyPoozzled, thank you so much for your reply, and I'm so sorry for what you've been going through. I hope your test results next week give you some answers and help you move on. It's so helpful for me to hear what's been happening for you. It's good to hear the hcg levels can drop gradually on their own (after all the rounds of medical and surgical management at least...), I was confused about whether they would drop even when I'm not ovulating but sounds hopeful. My medical team have been very inconsistent and don't seem to know what's going on, so I'm relying on the internet at the moment and I think the support group you mentioned will be helpful. I'm hoping a medic can tell me what's going on for sure soon so I can at least get my head around the idea of not being able to try for a baby again yet if that's the case.
I hope you get the best possible results and continue to move on with your life, here's hoping for some good news in the coming months! x
MonkeyPoozzled76 · 06/11/2016 11:21
Hi Chocolate, my second ERPC was done with a camera so they could check how it'd gone. I was told they'd err on the side of caution and not be too aggressive with it to reduce the risk of damage so there might be a little bit left behind that'd come away naturally. I bled quite a lot after the procedure and this continued for 3 weeks, during this time I was having weekly scans and bloods at the hospital plus the monitoring for Charring Cross. A week after the procedure I had hcg of 64, then weekly results of 30, 16, 10, 6, and finally 2. It was not nice having to go back each week to have these do everything but it really helped my peace of mind to see them falling. I'd ask if they can do the same for you so at least you have something to focus on. I think ovulation kicked back in at hcg below 50ish for me, I have some opk test strips which confirmed this, again good for peace of mind for me and only a few pounds from amazon.
Is your second opp being done by a Consultant? if so get him to chase your first hystology results and there should also be another slide taken for you on Monday. If you do get referred to Charring Cross they are brilliant, just send you a pack in the post once every two weeks for blood and urine, I just popped to my docs for this, then you call for results a few days later, they will answer any questions you have. Once your levels are down to below 5 you only have to maintain this for one month before you are considered clear. The hospital consultant told me I'd have to be clear for 12 months before I'd be able to try again! he really upset me as at the grand old age of 40 I thought I'd be too late by then. I ended up quoting bits of info to him from the leaflets I'd been sent.
Wishing you lots of strength for tomorrow, a speedy recovery and hopefully some answers for you sooneed too. X
chocolatepenguin4 · 06/11/2016 12:56
Thank you so much, I will take all this information with me tomorrow! I've had a look at some of the support groups this morning, all the details about the placenta and ongoing miscarriage experience match mine so partial molar seems likely. I don't think there was any check done after my last surgery, we got a coroner's letter telling us there was nothing unusual but we were also told they only looked and didn't do any test because it's only my first miscarriage. I'll make sure they test this time.
The 'wait for 12 months' thing is confusing, online it looks like that's recommended if you have chemo but not necessary otherwise surely? We were also told by nurses to wait longer than the leaflets said after miscarriage (before it got complicated). I wish the medics would be sure before they say things like this, or at least be able to explain why. The misinformation is confusing and upsetting. Thank goodness for online forums :)
Thanks so much for your help and advice. All the best for your next test at the end of the month - nearly there now!! X
MonkeyPoozzled76 · 07/11/2016 16:29
Hope you've got on ok today chocolate.
chocolatepenguin4 · 08/11/2016 20:29
Thanks MonkeyPoozzled. Surgery was delayed yesterday and today so trying again tomorrow... Hope all's well with you X
MonkeyPoozzled76 · 11/11/2016 22:52
Hi Chocolate, hope you are home and all sorted now. Don't envy you having to wait and go back, I was climbing the walls last time as they kept me waiting, nil by mouth, from 8am until they finally took me down at 5pm, I would not of coped any longer at all.
Just wanted to let you know I've finally had the definitive test results back from Charring Cross and they've said it wasn't partial molar after all so if you've managed to get some more info on any hystology results don't think the worst immediately if they refer you to Charring Cross after all. To be fair, the results came back at a couple of weeks shy of the date they'd have signed me off anyhow. The whole 12 months thing is for patients who've had to undergo chemo as their levels were rising.
I've had a bit of a debrief with the Consultant and he just told me get on with trying again now. It's really messed with my head to be honest but I am relieved. Reading between the lines it seems like my ongoing bleeding and slowly dropping hgc levels were to do with an incomplete erpc in the first instance, it took a second procedure then finally a heavy period for my levels to return to less than 5, so perhaps just bad luck. I have my fingers crossed for you that this second opp will get everything it needs to and you'll see your levels come down over the next few weeks.
Hope you are being well looked after. X
chocolatepenguin4 · 13/11/2016 16:39
Thanks - I'm at home and pretty much recovered now after 3rd day lucky for surgery. I very much enjoyed having breakfast and lunch the day after surgery, it felt like a novelty after 3 days of fasting! (I did eat in the evenings)
That's so great to hear that you've had good test results. I think my case must be very similar to yours; I saw a different dr this week who said they didn't think it was partial molar and it turns out they did have a histology report from the first surgery, but the dr who said it was partial molar hadn't looked at it... They're going to check again from this week's surgery to make sure but it's sounding better than it did this time last week. My dr this week said they wouldn't check hgc levels for me because it wouldn't tell them anything different from a pregnancy test. The inconsistencies/contradictions betweek drs even in the same department is astounding.
I hope this is the end of the miscarriage for both of us now, so we can think about the future but not forget these pregnancies and babies too. I hope you're starting to feel better now, the drop in hormones must make some difference, and the relief at not having to continue monitoring for months and months. X
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