Retained tissue after laparoscopic Scar ectopic

[nade-93]

Hey

I had laparoscopy 3 weeks ago, I’m still bleeding and testing positive..had a scan yesterday and I have retained tissue. My hcg levels still at 400.
I had a scar ectopic, so the doctor I saw hasn’t told me what steps are next. Due to it being rare and he has to go back to the consultant to see the best steps. Really frustrating as I just want it all to be over so I can move on. So hard to grieve when it’s all still going on.
I just wanted to know if anyone on here had retained tissue after laparoscopy and how it worked out for you?? And also if any one still had high hcg levels after surgery??
I hate the waiting around not knowing makes me so worried. So any experiences would be good to hear. Thank you. Xx

[nade-93]

Hey thanks for reply.
Yes I have similar pain and also still bleeding (light bleeding)
They told me that more surgery isn’t a good idea so I have to try anti biotics to see if that helps and then be re scanned in 6 weeks.
I have an appointment today to see if hcg levels are dropping, fingers crossed they are.

Yeah it’s so frustrating…so hard to move on when it’s still going on!

Hello,

I believe I am in a similar situation and thought I would reply. Just over 4 weeks ago I had surgery to remove an ectopic in my right tube, however the tube it's self was not removed.

My hgc levels have fluctuated slightly but have remained at around 230 for over 3 weeks. Following a scan it was confirmed last week that I had remaining tissue in the right tube. I can completely relate to your frustrations as I am also currently waiting to be advised on the next step.

I am currently still experiencing pain similar to the original pain. Are you?

[nade-93]

Mines pelvic pain and lower abdominal and comes and goes. Do you still have bleeding too?
My ectopic was attatched to my c section scar, so they always said I wouldn’t experience the shoulder pain and I never did.
Thanks very much, I hope it works out for you too. And then we can move on. It’s so unfair what we have to go through.
Nope, at first they said more surgery but then they decided antibiotics and trying to get it to come out naturally would be better. I really don’t want more surgery so I hope the plan works.

My pain seems to be intermittent in the right side, but has recently started in the left side which is concerning. Have you experienced pain in the shoulders? I keep getting short sharp pains in the side of my neck but I have no idea if it's related.

I'm wishing you all the best with today's appointment and really hope your levels begin to drop. Have they mention Methotrexate at all?

I have an appointment on Thursday to check my levels and decide if Methotrexate would be suitable or if surgery is required.

I just want to you know what your feeling is normal. I feel the same. I can't move on and I have no closure.

[nade-93]

Hey. Sounds like we are deffo in the same situation!
Still feeling the same atm really. Had an episode the other night of more cramping and more bleeding, lasted about a hour then calmed down. Not sure if that’s anything to do with tissue. I didn’t think to ask how it happens!
They think my hcg levels are just taking longer to go down then usual and that my body should dissolve the tissue. And got antibiotics to prevent infections.
How are you doing now, any changes?
I also was told more surgery wouldn’t be good to soon after my recent surgery…I felt the same as you relief for not having surgery but also frustrating that it’s going on for even longer now!! So hard to accept and move on when it’s still happening.
And they won’t scan me for another 6 weeks now, which seems a long time. X

How are you getting on? Have the antibiotics helped? Hopefully your appointment went well.

It sounds like we are still experiencing similar abdominal pain. I bled for approximately a week after surgery, then on and off for two weeks. Since week 3 I haven't bled at all.

During week 4 appointment, a scan confirmed tissue was still retaining and I was told there two options surgery or methotrexate. Unfortunately because I was still experiencing pain methotrexate wasn't suitable and I would require further surgery. However my hgc level drop by 30, so they have since said they want to wait because my body may be removing it naturally. I am so thankful that I may avoid surgery, however it does mean this process will be prolonged for at least another 4 weeks.

[nade-93]

Ahh really.
I ended up having another scan yesterday and not much had changed so now they’ve said to wait 3 weeks and then will scan me again and if it still hasn’t happened then surgery may have to be done. Very frustrating. Yes the hcg levels slowly dropping. But taking longer then expected.

How long are they giving you to wait to see if it happens naturally?

I asked my consultant and she said light bleeding is a positive sign as it indicates your body is starting to dissolve the tissue. Hopefully this is a positive sign for you. When's your next blood test?

I experienced short episodes of cramping and sharp pains a few times a day but as I mentioned before I haven't bled over the last few weeks. I was asked to go back in last week for another scan because my cramping had moved from the right side to the left, the scan showed everything is the same as the previous scan. I have my next blood test tomorrow.

6 weeks does seem like a long time but I think if you experience and changes that your worried about you should definitely contact someone for advice. Has your hgc level dropped at all? The moment it drops slightly they won't do anything other than blood tests. Mine took 4 weeks to start dropping.

[kirsty_6667]

Sorry it seems my last post was removed for some reason.

This week my levels have dropped down to 77 and my body has naturally started to flush everything out. I am coming up to week 7. I had a scan 5 days before my last blood test and it all looked the same. If your levels have been dropping slowly I have every hope your body will also start the natural process soon. What was your HCG level last time you had your bloods done?

[nade-93]

Sorry Iv only just seen this! All the messages seemed to have disappeared.

That’s great news for you! How are you now?

I’m not sure what my hcg is atm. Because it showed it was dropping I haven’t been having regular blood tests he said it wasn’t needed to keep track as the ectopic wasn’t in my tubes. My pregnancy tests are now nearly negative where as before they had a strong positive so I guess that means it’s dropping.

I’m just waiting around for my next scan on the 14th, hoping it’s sorted itself out.

Sorry it seems my last post was removed for some reason.

This week my levels have dropped down to 77 and my body has naturally started to flush everything out. I am coming up to week 7. I had a scan 5 days before my last blood test and it all looked the same. If your levels have been dropping slowly I have every hope your body will also start the natural process soon. What was your HCG level last time you had your bloods done?

[kirsty_6667]

I am doing well, it's still dropping and they believe they should be able to discharge me at the end of this week if it all goes to plan. I will then need to take a test in two weeks to ensure it's negative. I still have the pains, but no where near as frequent. I have been told to expect these pain for up to 6 months.

That's great news. If your tests show as negative it means it has dropped to a normal level. Hopefully they will show as negative soon and you will know it's dropped. Hows your pain now? Hopefully you have stopped bleeding too.

I have everything crossed that your scan goes well for you on the 14th.

[nade-93]

That’s great, I bet that’s a massive relief!!

Same here, also still get pains still but not as much as I was. Some days I don’t get none and then il have a day where it’s back again.
Still have light bleeding most days too.

Thankyou! Hopefully it will all be fine. Just hate waiting around for appointments! Dreading it but want it to hurry up.

[kirsty_6667]

Hi, how are you doing?

My level was much lower last week and they discharged me from my current unit which is great news. However I have been referred to have some follow up tests required to understand other complications that occured but at least the immediate risk is over.

My pain has definitely reduced but it still comes and goes. I am now waiting for what they would say is my first cycle.

You have your tests this week don't you? I hope they go well. Once your HCG level is normal will you be discharged it will you still require further treatment?

[nade-93]

Hey. Yeah I had the scan this morning. Thankfully the tissue has shrunk, so is dissolving and my tests are negative. The bleeding and pain also calmed down a lot. So now he wants to scan me in another 8 weeks just to check it’s gone by then and then hopefully discharge me. Can’t believe how long it’s going on for.
But I’m feeling a lot better.
How are you? That’s great you have been discharged! I hope the other complications aren’t nothing too major!
Hopefully we can now move on from it now it’s calmed down for us both.

[kirsty_6667]

That's great news, what a relief for you. That's good you have another scan booked in to be sure . Has your pain completely settled now? Do you feel you can start to get closure now?

I'm ok, a week ago I was experiencing what I believe were ovulation pains. I haven't experienced this before so it was quite a shock and it took my by surprise how intense it was. That lasted a few days. My cycle has just started and I 100% an experiencing more cramping and pain that previously. All I can do is hope it settles.

Unfortunately I'm still waiting for the next hospital referral to come through.

[nade-93]

I still get days that I get some cramps on and off, but they aren’t as bad and not as often as before. And the bleeding finally stopped! So I feel more myself physically. Do you still have pain a lot?
I think so, hopefully by my next appointment it’s all settled and then should definitely feel some sort of closure. Now it’s all calmed down i feel more emotional because i can think of what happened without the stress of appointments and panic of more surgery. So hopefully can accept and move on. Do you have any sort of closure?
Oh bless you. Iv heard the first period can be painful afterwards. I was put on the pill that stops periods to help with the bleeding I was having, so won’t be getting my cycle anytime soon. Hopefully I can stop them after my appointment in May.
Oh that’s a pain! Hopefully they don’t keep you waiting too long.

[kirsty_6667]

That's fantastic the bleeding has stopped and the pain is settling down too. I don't experience alot of pain but I definitely still get a similar pain. I had quite a bit of pain when ovulating and over the last few days as I have started my first cycle.

It would be great for you to get signed off complete. I totally understand what you mean, it's difficult to process exactly what has happened when you have lots of appointments and things to worry about. Now you have time to realise what's happen.
I feel I have some closure but I'm struggle to come to terms with it a little. It was my first pregnancy and a bit of a whirlwind. I'm still stuck in limbo waiting for test which isn't helping

[nade-93]

Yeah that’s the hard part I think, coming to terms and like accepting what has happened. And just mad how long it’s gone on for since surgery was in January!
Oh bless you I’m so sorry. It’s not nice what women have to go through. This was my second pregnancy. My first was all fine I have a little boy.

[kirsty_6667]

I'm just not sure how to come to terms with it. I guess I'm pretty scared and probably won't try again now. Plus for me I had extra complications which means it may not be so easy to try again.
I'm really sorry for you too, it sounds like you have been through so much too. I'm glad your first pregnancy was alright and you now have a little boy.
Thank you so much for posting about your experience, it has really helped me.

[nade-93]

Bless you. Maybe with time and healing you may feel ready again. But I totally get what you mean, Iv been told it’s best too wait a year till I try again, but the thought of trying again is really scary. And it would never be the same, future pregnancy would just be full of worry that it’s going to happen again.
Thank you, yours helped me too!!
Wish you all the best for the future.