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My story of miscarriage, erpc and suspected molar pregnancy so far.

(34 Posts)
Lou1791 Sun 17-Jan-16 12:44:00

This is my first post, but over the last few weeks I've read many other threads and have found them to be hugely supportive. It is both comforting and devastating to read other people's accounts of such a traumatic time. I am so sorry for anyone who has gone through or is going through a miscarriage. I want to share my experience for selfish reasons (I hope it will help me to process what has happened) and in the hope that others may find some comfort in that they are not alone.

This was my first pregnancy. My husband and I started ttc soon after getting married last summer. I had been on the pill for 7 years and so we expected it to take a while. It didn't and I was slightly shocked (and thrilled) to find out I was pregnant after our first month of trying. The first 8 weeks were uneventful. In fact I worried my symptoms were too mild but tried to listen to close friends who told me I was lucky. We were looking forward to telling friends and family after Christmas.

On New Year's Day, I had some bleeding. It wasn't a lot but terrified me. I spoke to NHS direct and was advised to rest for the weekend, but the light bleeding continued. I was lucky to get a scan for the Tuesday but I think I knew that something was wrong. They couldn't find anything on the scan at all! I'd prepared myself for no heartbeat, but nothing?!

At this point, I found the doctors extremely unhelpful. I was confused and frightened and no one really explained what was going on or what to expect. I was told it was very unlikely to be a 'viable pregnancy' and either I was miscarrying or it was a molar pregnancy. They did a blood test and sent me home, with instructions to come back in 48 hrs for another blood test. I understand this is normal procedure but in hindsight I am shocked that I wasn't told more about what to expect. Reading threads such as those on mumsnet helped a little that evening.

That night I experienced pain and heavy bleeding. I actually felt relieved that I thought it was a 'normal' miscarriage and that my body was doing it naturally.

However rpt blood tests showed my hcg levels were dropping but still high and Drs were worried about the initial scan looking abnormal so they suggested an erpc. I fought this because I am terrified of hospitals (silly I know) and because I was convinced my body was miscarrying naturally. In the end I felt pressured into the operation (Drs talked about cancer) and went ahead.

For me, the day surgery was traumatic due to my fears but rationally I know it was fine. It was quick, I had very little pain afterwards and was able to go home 2 hours later (I was desperate to get out of there). The nurses and surgeon looked after me fantastically well and did their very best to reassure me. We have to wait 2 weeks to find out if it is molar although the surgeon said she didn't think it was.

The operation was 4 days ago now. I've had very little bleeding but some aches and pains (paracetamol worked). I'm most worried because I just don't feel myself and I don't know if this is normal. I am weak, often dizzy and faint and I'm not sleeping.

I still don't think I've come to terms with what has happened emotionally I have been so caught up with my physical feelings. I've got so many unanswered questions:
How long will bleeding and pain last? When will I feel myself again? Is feeling tired and dizzy something to worry about? When can we try again?
Probably all questions I should have asked the Drs but at the time my mind was elsewhere.

If anyone else would feel willing to share their experiences or answer my questions I would really appreciate it. I am very very sorry to anyone else having to go through any of this. (Sorry for such a long post!)

RoTo72 Sun 17-Jan-16 14:29:59

Hi Lou. Sorry to hear of ur loss. I had a missed miscarriage and erpc at end of November. I recovered ok from op. Little bleeding that came and went over a week. I did have cramping, nausea, constipation headaches and dizzy spells, and it hurt to pee (sorry tmi). Tbh I still don't feel 100% physically, and it is almost two months, tho I have ibs and stress can affect that. I haven't slept before 4am since my miscarriage, and have lost lots of weight. We're not warned how physically hard a miscarriage is to recover from.

Loki17 Sun 17-Jan-16 16:16:09

I'm so sorry for your loss. I hope that you are being looked after in rl. Please ask any questions - you know my story so I'm happy to answer any questions that I can flowers

Lou1791 Sun 17-Jan-16 17:00:24

Thank you for your replies.
Ro - I'm sorry you're still not feeling yourself. I'm with you on the not sleeping. Did you have any follow up with doctors after the surgery? I've got an appt in a week and a half for results due to the suspected molar, but I want a scan to reassure me that it's over!

Loki - I was so touched by your story. My husband is looking after me brilliantly, but I think he is struggling to understand my feelings and I'm struggling to explain them!

I'm due to go back to work tomorrow, after two weeks off. I'm part looking forward to it, part dreading it. There are some close colleagues that know and I'm worried I won't be able to hold it together talking to them about it. Any tips on what to say to people?

RingUpRingRingDown Sun 17-Jan-16 17:12:32

So sorry you are going through this flowers.

I think different people have different after effects, and a molar pregnancy isn't necessarily the same as a standard ERPC.

I had a partial molar pregnancy 3 years ago. In my case, I had the ERPC and then found out about the molar thing several weeks later when the foetus was sent for examination.

I didn't have much heavy bleeding after the ERPC but continued to bleed lightly for many months afterwards, and my hormone levels refused to go down. My body was making new molar tissue and trying to shed it all the time, and eventually I needed chemo.

In terms of the miscarriage itself and the ERPC, I think it took a couple of weeks before I physically felt normal again. Emotional recovery took much longer. I kept bursting into tears at random and unexpected things. I still find Christmas tough because it happened shortly beforehand.

If it is molar - and fingers crossed it isn't - I think they recommend that you wait until go tone levels return to normal and you have a proper period before ttcing. I don't pay much attention to that as I didn't want to ttc again.

Happy to answer any questions if I can.

Diggum Sun 17-Jan-16 17:21:23

I'm so sorry you're going through this Lou.

One of my dear friends described the sense of loss in a very insightful way. She said everyone else was treating her miscarriage as a loss at 8 weeks of a pregnancy. But for her, it was a loss of the baby she had imagined for years before she was even ready to start trying. She was grieving for the baby she imagined herself holding whenever she and her DP talked about having kids. It wasn't 8 weeks, or was 8 years or so.

That's the grief you're feeling, and there's nothing fleeting or minimal about it. You'll need time to get through this.

Thinking of you flowers

Loki17 Sun 17-Jan-16 18:11:21

If you feel like you don't want to talk about it you need to be direct. Just thank them for their kind words and say you don't want to talk about it. Many of my colleagues didn't say anything except 'good to see you back' and I was able to say thanks and then move on. Go easy on yourself x

Lou1791 Sun 17-Jan-16 18:38:18

Ring up - Thank you for your response. In hindsight did you have any symptoms that suggested the molar? I keep switching between being convinced that it won't be molar and worried that it's the reason that I still don't feel well. I know I have to try to be patient and wait for the results. I also feel like I'm unable to deal with the situation emotionally until I know for certain either way. I hope that you are now fully recovered.

Diggum - you and your friend are very much right. I don't think people understand and before going through this I wouldn't have done either. For me it is also upset at the loss of the excitement and joy about being pregnant - something that I had looked forward to for years. If I'm lucky enough for there to be a next time, it will be filled with worry and anxiety.

I am so grateful for the support on here.

RingUpRingRingDown Sun 17-Jan-16 19:35:22

In hindsight the warning signs, that I would never have guessed, were that I got much bigger than in previous pregnancies (had 2 Dcs already). So I looked 5/6 months pregnant at my 12 week scan. Plus I was much sicker than in other pregnancies. Both classic symptoms. I knew I wasn't carrying twins because I'd had a dating scan at 6 weeks (irregular periods meant I genuinely had no idea if I was 6 weeks or 12 weeks pregnant at that point). Everything looked normal at that point.

Nobody mentioned molar pregnancies at my ERPC although I suspect that the consultant who carried it out suspected it. I got the news at a follow up appointment 6 weeks later.

RingUpRingRingDown Sun 17-Jan-16 19:38:36

And I am fully recovered and fighting fit, thank you. This time 3 years ago I was just starting chemo, which lasted until the summer. I have been absolutely fine since then but still have to do monthly pregnancy tests to check my hcg levels. It feels like it happened to someone else. The only lasting effect, in my case, was to bring forward the menopause, but I'm old anyway (mid 40s) so it's not the end of the world.

Lou1791 Sun 17-Jan-16 22:57:16

I've had none of the classic symptoms for molar pregnancies that you read about apart from bleeding in first trimester. Like I said in my original post, I barely felt sick at all and that was worrying me! I was convinced for a while the bfps were wrong. So I guess it's fingers crossed that the 'unusual' ultrasound was mis-read and hoping the next week and a bit goes quickly until we can get the results. Desperate to move on from this now and feel that I can come to terms with it properly.

lenibose Tue 19-Jan-16 12:25:51

I don't know if this helps. I had a MMC (empty sac at 13 weeks last year). I have a healthy boy who is 4 now. First pregnancy was textbook- no sickness, worked up until 38 weeks and got pregnant easily. This pregnancy was EXACTLY the same- no sickness, got pregnant easily, so I assumed it was all the same. I started bleeding the night before my 12 week scan (which was at 13 weeks), and it got worse the next morning so by the time I went for the scan I knew it was over. I had an ERPC which was very sensitively handled by the hospital. It was on a Thursday and I was back to work on the Monday. However, I got pregnant on my first cycle off the pill. The consultant said something interesting to me. She said that there have been a number of studies that disprove the theory, but she had been a consultant for 25 odd years, and anecdotally she had a very large number of women who had MMC's after getting pregnant very quickly after coming off the pill. Again, she stressed that a few studies on this were inconclusive though.

Emotionally, I'm ok-ish. If I do get pregnant again, I will be a nervous wreck I think. A couple of colleagues knew, no one said anything. I was a tiny bit upset that DH didn't note the due date for the baby and it sort of went by in a blur. Other 'mum friends' of mine who have had miscarriages said to me that they never ever forget the due dates of their babies whom they miscarried. It made me feel less like a freak. And yes, it's that loss of a 'life' you had planned, more than the physicality of it that has lingered.

Lou1791 Thu 21-Jan-16 15:42:39

Lenibose - I have wondered whether the pill had anything to do with it but I suppose it is hard to know.
I am glad that you are feeling okay. I agree about worrying about future pregnancies - it will definitely be a different experience. I hope that if you have decided to try again it all works out perfectly for you and your family.

Lou1791 Tue 26-Jan-16 20:50:55

Thanks for all your replies. I've found the last few days much harder emotionally, now I have fewer physical symptoms to worry about.

I would like some advice however. I've got a hospital appt tomorrow to find out whether the tissue removed during erpc was a molar pregnancy or not.
I'm driving myself mad with thinking about whether to do a pregnancy test this evening, because I'm desperate for it to be negative. My thoughts are it might help me prepare for what they might tell me tomorrow. If it is negative, (3 weeks post miscarriage, 2 weeks post erpc) then I can relax somewhat in the knowledge that either it wasn't molar or that it was but the erpc has 'sorted it' and I might get some sleep tonight...
Before erpc my hcg levels from blood tests were:
26'000 (before heavy bleeding started)
4'000 (2 days later, after a lot of pain, heavy bleeding and clots)
2'000 (2 days later again, erpc suggested due to original 'unusual' scan and still quite high hcg.)

Anyone with any experience? Is it possible that hormone levels will have dropped enough now if it was a 'normal' miscarriage?

Sorry, this is probably completely irrational and I should just be patient and try not to worry...

squizita Tue 26-Jan-16 22:27:00

First off, with a suspected molar you really do need surgery. So don't feel bad about that. There is a risk of cancer, and they don't die off on their own. You don't want to risk chemo.
I've been there and it is a realistic risk. With the operation you will get pathology done which is the only failsafe way of knowing.

Hcg can drop slowly with a normal loss too, and of it is molar, the drops you describe are pretty good for you to get into the "safe zone" to ttc again 6 months after your operation. Mine fell far slower even with a partial!


squizita Tue 26-Jan-16 22:29:25

This website is very good, as is Charing Cross' own one from the unit there.

squizita Tue 26-Jan-16 22:31:52

...sorry dripping but I got pregnant within the year - and with treatment for an unrelated clotting condition had a healthy full term girl so even if you have a few months wait it will more than likely be ok.

SoporificHobnob Tue 26-Jan-16 22:48:54

When I went back to work I emailed my boss and said I didn't want anybody to mention it and could he tell them before I went in what had happened so I didn't get asked and yo tell them not to mention it. I knew I'd have cried buckets if anybody had said anything. Maybe you could consider talking to your boss and tell him something similar if it would help.
Sorry you are going through this.

Lou1791 Wed 27-Jan-16 22:07:20

This is never ending. Feel like it's going from bad to worse.
Met with consultant to get results from histology on erpc today. Was told that the results were inconclusive, suggestive of a molar pregnancy but not certainly one. I wasn't prepared for this, I was prepared to know either way for certain. I had a blood test for hcg (hopefully results tomorrow) and was told I was being referred to Charring Cross as if it is a molar pregnancy and they will monitor. I'm so confused! The doctor today struggled to answer my questions (felt like she wasn't experienced in this area) and terrified me by saying I 'would likely' need a second erpc. I'm still fairly sure that I experienced a miscarriage: cramps, heavy bleeding, passed large amounts of tissue (sorry.), hcg dropped significantly before erpc (see above) and none of the doctors I've spoken to in the last few weeks can explain to me why this would happen if it is/was molar. Can anyone help?

kettleson Wed 27-Jan-16 23:53:54

I'm sorry you're going through this. Didn't want to read and run, just in case you are still awake. I had a partial molar in 2013 and also found local doctors couldn't really answer my many questions. I was followed up by Sheffield and the nurses there were absolutely lovely and happy to answer questions at any time. I'm sure Charing Cross will be the same. They have a website I think so you could see if you can find a number to call to speak to someone tomorrow. They will get in touch with you when they receive the referral, but that might take a few days so you could jump the gun and hopefully get some reassurance earlier. I know it's really scary, but try not to worry, you'll be looked after really well.

RingUpRingRingDown Thu 28-Jan-16 07:04:35

iirc being offered a second ERPC is a good thing, from a health point of view. It means that they can be sure that they take away any of the molar tissue and cells that might have been missed, and your hcg levels will hopefully fall right away. Your levels are falling well as it, mind you. It is far better for your body to have that than to have methotrexate. Emotionally it would be tough to go through that again though, I'm sure.

I second the advice about phoning Charing X and speaking to someone. They do that all day. Sadly many consultants and GPs know very little about this.

squizita Thu 28-Jan-16 10:12:14

Lou I had this- in such cases they should refer you to Charing X (or Liverpool) straight away anyway. Time is important.

squizita Thu 28-Jan-16 10:12:59

Duh Sheffield.

...Liverpool is for something else rare and odd I had!

Lou1791 Thu 28-Jan-16 18:30:14

Thank you everyone. Still panicking slightly. I did ring Charring Cross and they said they'd received the referral and were sending out information and first testing kits. They will monitor as if it is molar - I suppose just to be sure which I understand. They answered the questions I had and then I've ended up thinking of more so I think I'm going to have to start writing lists! It's constantly on my mind.

Then, later today I got yesterday's blood tests results. Hcg still around 1'000! I was so hoping it would be much much lower! Now, I'm freaking out that cells might still be growing inside me and thinking the worst. sad

Lou1791 Tue 02-Feb-16 21:31:42

First samples sent off to Charing Cross on Sunday (gynae ward did them for me.) Can anyone advise as to how long it takes for them to receive the kit and get results?

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