Advice pls on retained tissue following Erpc 3 weeks ago, hcg still at 500

[Jemimapuddleduk]

Hi, hoping someone can help who has been in a similar position.
I had a manual vacuum aspiration on the 12th April for a 9 week mmc. They weren't sure it was complete so a week later I had a scan which showed tissue remaining and I had medical management. I then continued with positive preg tests. Last Friday I had a bhcg of 700 and more medical management. Today my hcg was 480, so it coming down but still high nearly 4 weeks after initial op. The Epu seem reluctant to do another surgical procedure, I have fertility issues and recurrent mc. I am due back in a week for another hcg blood test. I am thinking of getting a second opinion privately.
Any thoughts?
This is dragging on and driving me totally nuts.
Anyone else had this? Feeling very low about this all.

[purple84]

Hi I don't have any advice but just wanted to say sorry for ur losses.
It's not easy to get over and must be so much worse when itis dragging out like this.
I really hope you get it sorted.
Best of luck xx

[Grakster]

Hi - I had ERPC @ 11 weeks and week later found out that tissue remaining. Consultant said I needed 2nd operation to remove tissue as would otherwise result in chronic pain/bleeding and high chance of infection. This was all done privately - you might find you get a quicker answer if get second opinion and go privately. Please feel free to email me to get more info if you like. xx

[Hebiegebies]

Was in your situation last autumn. I had ERCP, not complete. Did not try medical management (not offered) but needed 2nd ERCP as bloods still high.

To get treatment I tried the following tactics, not sure which worked

Phoned the EPU almost daily
Phoned the PALs at the the hospital frequently
Asked the private hospital and phoned back every few days, they told me they did not have facilities but that the only suitable dr was the one at the EPU who I was seeing and they'd phone her
Sat in the waiting room for hours determined to see Consultant

Eventually they booked me in for 2nd ERCP and within 24 hours of that op I felt so much better, my period was 5 weeks later

Good Luck

[Jemimapuddleduk]

Thanks all.
hebies how long after your first Erpc was your second? Can you remember what your blood levels were? Have you had a sucessful pg after that? Sorry for all the questions. The midwife at Epu has scared me with ashermans syndrome risk and hence the argument for continuing with conservative management. It's not normal though is it (hcg still in hundreds 4 weeks after first op?).
Thanks again x

[Hebiegebies]

My second op was 4 weeks after the first
I never stopped bleeding after the first op
Blood levels were higher than you would have expected for a 6 week pregnancy but can't remember the figure sorry

I havnt got pregnant again yet, but I am very old and didn't start trying again until January as I needed to let myself recover mentally as well as physically. I was also waiting for results at the recurrent MC clinic

Sorry not to be more help

[Jemimapuddleduk]

Thanks so much hebie. That is helpful. I am a bit different as not bleeding and havnt been bleeding for about 2 weeks. Getting a second opinion following another blood test on Sunday. Very fed up!

[willitbe]

Jemimapubbleduk - (love the name by the way!!!), I thought I would answer here rather than the other thread.

From my experience, my hcg levels seem to go down at a steady level of halving with my m/c's. Be it quick or slow. I have had 11 miscarriages (14 pregnancies).

when I have stopped bleeding before passing all the products of conception, I have found that it is when my hcg levels reach zero (or near!) that I start bleeding again. But with the one that I passed 4 weeks after stopping bleeding, my levels were not being measured, all I can say is that my pregnancy tests remained positive but were getting slowly lighter as the 4 weeks went on. I would guess that I passed the sac (8 week size) when my levels reached around 100, but within 3 days my tests were negtive having passed it. The pregnancy I reabsorbed I was only 6 weeks pregnant and took a month for my levels to decline, I had a bleed once my tests turned negative.

If you were 700 on friday and still at 480 on monday, your halving time is more than 5 days, so to half to 240 will take til Thursday, then 120 take til the following sunday, 60 the following wednesday and ..... you get the idea, so you are looking at possibly another few weeks unless the halving time speeds up (which it can) until the products are reabsorbed. But there is a chance you could bleed before this and pass it with the next bleed.

The problem is making sure that you watch out for any signs of infection in that time. I can understand the trying to avoid another eprc for risk of scarring.

I only had medical management once and it did not work! I am sorry you are having to go through this horrible time.

I hope that things sort out for you soon.

[Jemimapuddleduk]

willitbe, thank you so much for replying. I am so sorry about your 11 miscarriages, i can not imagine how hard that would be.
You have definitely helped put my mind at ease.
I have felt like i am slowly going mad with this waiting (with my prev 2 mc's i had a negative preg test a week after bleeding/erpc and could get on with things again). I have another bloodtest on Wednesday which will be 1 day off 5 weeks since my op, really hoping its dropped some more. All the midwives i have spoken too at the EPU have been saying 'be patient' they hormones will drop, but i am imaging the worst and still having hcg in my system MONTHS down the line! No one can give me an estimate of when it may be (and i think i am a little bit of a control freak, so i am finding the not knowing v difficult!)My impatience is worsened by the fact we are undergoing fertility traetment and i need to wait 2 cycles before resuming it all.

Thansk for the heads up on infection, I am on mega dose antibiotics so hopefully they are warding off any nasties.
Its weird about the medical management not working with you too! I have now had 3 lots of it in the last 4 weeks and its done nothing! Must have a uterus of steel. I just want to bleed!

Thank you so much for your support and sharing your experience (there is v little on retained products on the t'internet).
x

[Hebiegebies]

Heres hoping the blood test tomorrow will come back with lower results.

It's such a horrible no mans land, you are neither pregnant or not. If you are pregnant you still have the hope of a baby, if you are not pregnant you can ttc again. In this stage you are no where.

Agree about lack of info on the web, I searched too.

Hugs

[Hebiegebies]

Here are the 2 threads I started at the time


www.mumsnet.com/Talk/miscarriage/1317125-High-HGC-level-3-weeks-after-ERPC-Tell-me-its-not-a-molar

www.mumsnet.com/Talk/am_i_being_unreasonable/1319363-To-want-faster-treatment-at-the-EPU

[Jemimapuddleduk]

Hello, thanks again all for your help. I had my bloodtest yesterday in the end (got impatient and couldn't wait till today). My hcg is now at just over 100! Yay! Hoping that within the week it will drop below the 20 needed for the Epu to discharge me.

[iamci]

That's good news :) I hope they carry on dropping quickly now. I'm also in limbo land of slowly reducing hcg levels and know how frustrating it is. Hopefully we'll be back ttc soon x

[willitbe]

Jemima - glad to hear that the hcg is dropping at a better rate now. Hopefully you will get a nice low number for the next test. You might find like me that you have a bleed now the levels are getting back to normal.

[luul]

i will advice u to take some black cloves like a tea everday a week. it will cleans u up and hcg will go back to normal, i did have three miscarreg and friend advice the last one and it works for me really well with my hormonet going back to normal quickly around three days taking cloves, good luck.