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Ectopic pregnancy with rising hcg levels

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Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Ectopic pregnancy with rising hcg levels

Post by Nisha »

Hi all.

I just would like some advice.

On the 10th feb I start bleeding, I found out I was pregnant just a week before after trying for 2 years. We were so excited and the everything turned sour. I was having serve back ache 2 days prior and Sunday morning woke up with little traces of blood. I was saw about of hour dr who said I had a urine infection and that I should go down to A&E to see EPU. My husband and I sat there for 4 hours after the dr we saw was like there is nothing I can do you need to be seen by EPU.

On the Monday we had a scan and the radiographer said my womb was empty and the scan is inconclusive. I had bloods taken and left to go home non the wiser if what was actually going on.

They called with my results a few hours later and said my levels were at 41 and they will want to test them again on Wednesday. Wednesday came and they went up again to 51, they told me I had to go back for another scan with a senior sonographer. She diagnosed an ectopic but not fully. The consultant we saw after said they will manage me by expectant management and serial bloods test. I asked how long this would go on for as I just want this to be over. They said until the level go to 5 which means no pregnancy.

I have had no symptoms other tha very light bleeding for just over a week when this all first started.

More recently so yesterday I woke up not feel right I had diarrhea and very nauseous. I called EPU and they advised me to go into a&e.

A&e gyni said my blood levels were at 85 so again had gone up oh sorry forgot to say I had bloods taken at EPU again on Monday and they had gone up to 85. She said there was no increase since Monday and recommend that given my slight symptoms it would be an idea to operate. She then spoke to her head of gyni who said due to my symptoms it would be better for the same management expectant and that EPU will call me to see how I am today.

I feel like I am at a loose end. I feel so weak and really not myself I am resting and have no appetite although I am feeling a little better than yesterday. I also feel exhausted.

I just dnt know what to do anymore and would appreciate any advice.

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

I was expectantly managed from 375 (I’d bled for s few days before EPAU), my bloods went up and down for 3 weeks but eventually began to fall more consistently. I would go up and down by 60-90.

It did go though, and without intervention. EPAU especially if housed away from the main hospital - for me it was - often have a protocol to refer you when it raises to a consultant, told immediately to go to the inpatient ward. To wait, this can be stressful (I had a panic attack!) and then I’d had surgery or Methotrexate agreed and then the head of the centre said nope, more expectant management.

It often works and especially your levels are really low eventually it should ‘fail’ for want of a better word and be absorbed or pass through.

I found expectant management mentally stressful though so do take care of yourself. X

In holistic theory raspberry leaf tea is meant to help. It helped me feel I was doing something. And stopped my caffeine intake which would’ve pumped the anxiety.

Make sure to stop any pre natal vitamins or folic acid supplements until you’re clear X

Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Re: Ectopic pregnancy with rising hcg levels

Post by Nisha »

Oh wow. Thanks for so much for your reply.

It is mentally exhausting all of this and it is now getting me down. I just want to close this chapter and move on.

I have another blood test on Monday so I’m hoping the levels will start going down.

I guess there is nothing they can do if the levels are too low then?

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

It’s the most stressful thing I’ve gone through in adult life actually testing every 48hrs and not knowing if they were doing surgery or Mx. I’ve not had severe anxiety for years but eventually felt similar sensations. Hopefully as yours is low it really should start to pass soon. Take care of yourself bc there’s still a small chance of rupture.

Once it falls you should be discharged soon. I think mine went for something like 112, 75, 48, 25 to discharge at 5.3. Mine was particularly slow and stubborn though as the gaps between the last 3 week 5 days to a week.

Just really take care of yourself. Try and stay in the moment. Now is the time to take up 10 mins meditation or SOMETHING bc at least for me it felt like this was so out of control. That said even the doctors said my hcg was particularly stubborn so I may be transferring my feelings.

In my clinic at least at once stage I went to 190 and thought I’d cracked it as had had a weekend of heavier bleeding and passed some tissue. You can imagine my face/dismay when it went to 235 and was told to go straight to inpatient. The doctor told me I’d be in for surgery or mx within 3 days and then I went and bought hospital pj s from primark and as I live alone planned ppl to pick me up etc... then got a call later on and said the head of the clinic is asking you to wait another week to try for a drop again (!)

I’d dealt initially with it well but I kept believing id be discharged in 48hrs and I’d make plans for coffee or my birthday and I became fixated on “and then it’ll be OVER” but it never was.

Sorry this has turned into a long me me me post - my intention is to say, I totally get it but I wish I had been prepared. Pray that next time it goes down but it can go up - and it’s not the end of the world. I don’t think I was prepped for it going up. It was always “next time it should have dropped 55%” and I never did, but it was FINE.

So if it goes up, but you’re still low, they will still probably say watch and wait.

Don’t be afraid to take some control back bc you have to live through this. If an appointment lands on a day you really want to do X, ask to adjust it. I only realised this helped half way through as mine was higher and growing I was in the system for about 7 weeks.

Have you bled much? How many weeks would you be now? Don’t worry if you don’t want to share X

It’s hard to find expectantly managed people on the forums which when I was in it made me feel a bit alone. I also felt guilty bc everyone else had gone through these traumatic procedures however what cannot be conveyed is the STRESS expectant management gives. In the NHS NICE guidelines it even states something about the patient needing to be emotionally resilient for this pathway.

You will get out of this though. Your rates are really low. Don’t be afraid to push for info or ask to speak to another doctor if you want to understand more though.

If you’ve gotten to the bottom of this reply - well done :) xx

Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Re: Ectopic pregnancy with rising hcg levels

Post by Nisha »

Hey.

So initially I really didn’t bleed that much. I passed a big clot and lightly spotted for just over a week. I have had no bleeding since.

I can agree with you it is mentally exhausting I will speak to EPU tomorrow as I have my serial blood test but don’t know what to say to them.

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

Weirdly for me the hcg dropped the most when I’d stopped bleeding. Hopefully you get a big drop tomorrow and you can move past the physical things. Honestly you’re close! X

Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Re: Ectopic pregnancy with rising hcg levels

Post by Nisha »

Currently sitting in EPU and the levels went up again to 164 from 85.

They have rescanned and thankfully I’m not internally bleeding.

They have offered me methroxante and I don’t know what to do.

Any advice or help?

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

What did you go for?

Such a judgemental call. I wasn’t offered it bc my clinic encourages expectant management.

In hindsight would I have gone for Methotrexate earlier? Probably, yes. Only knowing how long mine took to resolve. I find expectant management very stressful. You may end up having it anyway. I think the success of expectant management (requiring no further treatment) is about 60-70%. That said I also feel grateful to have got through it with no treatment and side effects!

If you want to try and conceive very promptly or you particularly enjoy alcohol as part of your social life, I guess Methotrexate has its side effects.

Let me know what you went for I will be thinking of you

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

Don’t feel under pressure if you don’t want it bc mine grew and still went down. Feel free to ask for a second opinion. If you feel strongly against it, expectant management IS an option

Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Re: Ectopic pregnancy with rising hcg levels

Post by Nisha »

I said I would get back to them. I have read up on mx and it doesn’t have good reviews. My husband and I have been trying for a baby for over 1.5 years and having mx would hinder trying again for several months.

The registrar at EPU have me all 3 options, expectant, medical and surgical, however they are inclining towards expectant and medical and not surgical. Why offer me all 3 options is beyond me and I really dnt have it in to keep going in for bloods and then waiting to hear from them. It’s mebtally draining me!!

I have a second opinion via private tomorrow afternoon hopefully they can help me in terms of a decision I just need someone to give me their advice which I know is tricky for them being in the medical field.

I just need someone to say this is what you need to do. I feel like I’m going round in circles.

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

Take the green tea (meant to block folate) and raspberry leaf tea (recommended to clear out womb).

I think the expectant management could work for you but I know the blood tests are so bloody stressful. So glad you got a second opinion. I was very very hesitant (and terrified!) of Methotrexate. By the end id sort of come round to it.

If you can stay in the moment, give it another blood test to see if things go down. Mine went approx 375 245, 190, 235, 115, 75, 45, 28, 5. There was another growth actually in there.

If you want to ttc as soon as possible, maybe hold your nerve for a week and have the expectant management. Though I wasn’t given a choice, I was kinda relieved once I was discharged that it was over. It felt like normality could resume which I think is a bit slower with mx.

Thinking of you - the nightmare WILL end

Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Re: Ectopic pregnancy with rising hcg levels

Post by Nisha »

Hormones levels rose going for the methotrexate

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

Good luck!!! Xxxx

Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Re: Ectopic pregnancy with rising hcg levels

Post by Nisha »

Thank you it’s a shame that women have to go through this.
Hopefully the effects won’t be too bad and I can move on.

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

Because yours is still on the lower end of what they can do with Methotrexate I really hope it makes things more swiftly with the least symptoms. Think you can be knackered for a few days. Netflix and chill for you.

X

Nisha
Posts: 8
Joined: Fri Feb 22, 2019 12:19 pm

Re: Ectopic pregnancy with rising hcg levels

Post by Nisha »

Thank you for always replying, I think I would of been lost if you hadn’t x

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Ectopic pregnancy with rising hcg levels

Post by EctopicPUL »

I know how terrifying it all is! Just think in a couple of weeks you should be discharged. For me that’s when the shock of it all hit but still! One thing at a time. When you’re in it it feels like forever but slowly you do come out to the other side. It’s a crazy situation. Not experienced anything like it emotionally before

Sneha3012
Posts: 4
Joined: Wed Jun 03, 2020 5:52 am

Re: Ectopic pregnancy with rising hcg levels

Post by Sneha3012 »

Hi,

Hope both of you all are doing better now.just wanted to check did the methotrexate work for you? My levels are fluctuating after the injection. I am terrified and don’t want to go for surgery.. please suggest

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