tw miscarriage/ectopic pregnancy - Conflicting decisions from hospital, please help

[sunshinesummers]

I really need some advice about how to deal with this situation. I'm feeling so confused and desperate and I'm really struggling to cope with this.

I found out I was pregnant on 25th March. Sorry this is long, but I had an internal scan and two blood tests then was told over the phone on Sun 7th April that I had an ectopic pregnancy. I went back to the hospital on Monday 9th for an internal scan with a consultant who said she couldn't actually see an ectopic pregnancy, probably because it was too small but the blood test did indicate this is what it was - she said they called it a pregnancy of unknown location. I was told I needed another blood test, and womb sample to be taken the next day and mentioned the possibility of surgery or methotrexate.
I went back the next day, had the blood test and womb sample done plus another internal scan. The consultant I saw that day (different from the 1st one), said I would need to have methotrexate as I didn't meet the criteria for surgery. I was waiting for this and then they said it wouldn't be happening that day as they needed to order it and be signed off by the consultant, so to come back the next day for the injection, which I did.
When I went back on Wednesday, they said the nurses weren't happy with the decision the consultant made on Tuesday and they wanted another consultant to look over everything. I waited 4 hours to be seen, and when I was they said they were confident it was safe to wait a week for another blood test and scan as they weren't keen on giving me an anti-cancer drug without certainty, he wasn't sure it was ectopic either and wanted to see if it would resolve naturally.
I had bleeding and cramping pain between this appt and the next one so was hoping it had resolved naturally - it hasn't.
I went back yesterday and they hadn't had my biopsy results back, but I had the blood test and internal & tummy scan with the 4th consultant who seemed to be very thorough, and told me he did not believe it was ectopic and to come back Friday (tomorrow) for another blood test to confirm, and then we would be looking at d&c or medical management for a miscarriage.

I've just had a call from someone at the hospital to tell me they had gotten my blood test results from today (I haven't had a test today, when I told her this she said oh yes I can see that now, it was from yesterday - even though I already had these results). She also had my biopsy results which show that there is no evidence of pregnancy tissue in the womb - I asked if that means it is ectopic and she said she wasn't sure. I asked several more questions she couldn't answer. She said I needed to have the methotrexate though.
She told me to go back tomorrow for another scan - I said I had already had one yesterday, which was the fourth in about the last two weeks or so, and they all are showing the exact same thing so why do I need another. I also queried several other points including the conflicting advice on methotrexate but she said I needed to discuss this tomorrow at the appt as she couldn't help with this.

I feel as though I am constantly being told different things at every appointment and I'm concerned that some of them are pushing the methotrexate (which I have been told and researched that if I have it I will not be able to try and have a baby again for 6 months, and that the side effects of the drug can be really nasty) without certainty.

It feels as though no one at the hospital agrees on a diagnosis or a course of treatment, which I am extremely concerned about.

I finished this phone call today in tears as I am so frustrated and feeling as though no one is helping or listening to me and this is dragging out so much, I am struggling to cope mentally and physically I'm exhausted and not sleeping from the stress. My Mum has suggested speaking to PALS at the hospital, and expressing my concerns about the conflicting advice and suggestions, but they have now closed for the day.

In case it is relevant I had a missed miscarriage last year which was treated with medical management at a different hospital.

This is such a sad and emotional time for my husband and I, we are devastated to have lost another baby and we need support and strong advice and guidance how to deal with it but instead we're both feeling very confused.

If anyone has any experience or advice I would really appreciate hearing it.

@tomkat81 thanks for responding so quickly, the results have been consistent the whole time which is why I don't understand why the advice has been changing.

@sunshinesummers hey. Sorry you're going through this, the waiting is awful (I've had an ectopic pregnancy too - I had surgery for mine). I can see why they are reluctant to give the methotrexate if they're not completely sure it's the right course of action, but it's frustrating for you that they're flip-flopping around on it. Some ectopics/PUL resolve by themselves, my friend had a PUL that went away without drugs/surgery.

I guess if you don't have the methotrexate you might be able to TTC again sooner?

What were your blood test results, out of interest? As in what's your HCG level in numbers?

Have you checked out the ectopic pregnancy trust website?

Yes, pretty much but also:
1st said possibly methotrexate or surgery
2nd said definitely methotrexate and really pushed it
Nurses and 3rd said they weren't happy giving methotrexate and it wasn't necessary, it was too extreme
4th said d&c or medical management for miscarriage
Today I was told over the phone that it would be methotrexate

It's not that they're saying different things about not being sure what exactly it is, it's the plan/treatment that I'm finding is different based on who you speak to

What are your hcg numbers like OP? Worth you are going through this? I've had methotrexate for ectopic treatment and agree that depending on scans / blood tests etc I'd try and avoid it if possible

Are your hcg numbers going down or up or staying the same?

hcg numbers:
5th April - 927
7th April - 1151
9th April - 1207
I didn't get the number from yesterdays blood test as I forgot to ask as I was feeling a bit overwhelmed and upset, but she said it had gone up again slightly

Thank you. I can see why they want to wait with the methotrexate too and I'm really not keen on having it either. However I'm also conscious that it might not go naturally as the miscarriage I had last year didn't go naturally (I have no idea whether it is more likely to be the same, or whether this is me worrying because of last time).

I will have a look at that website, thank you.

Is my maths right that you would be around 5 and a half weeks pregnant if this pregnancy stuck?

At those sorts of HCG levels, they wouldn't be expecting to see anything on the scan.
The hospital were concerned for me as my HCG was over 6000 - and I had surgery 12 hours after the second blood test came back.

I can see why, at the HCG levels you are at they are not pushing any treatment right now. I know that's not what you want to hear, and you just want to know what is going on and get it sorted, but idlf your body can resolve any issues without drugs or invasive surgery, it will make recovery much quicker.

Good luck with your journey, and I hope you get a resolution soon.

Urgh yeah I can see why you'd worry based on your miscarriage experience. Sorry you're going through this. It sounds like they haven't helped with the mixed messages.

They told me they could only see something on a scan once HCG got over 1500. I'd probably opt for more scans rather than taking the methotrexate at this point, if that's an option.

(My hcg was below 1000 but I still needed surgery as I had internal bleeding - they couldn't see the pregnancy but they could see blood leaking from the tube).

Sorry if you've mentioned already, but do you have any pain or other symptoms? I guess this might influence the decision to have the medication or not.

Also just to add I am in my second trimester at the moment with my second child - conceived v quickly despite only having 1 tube, so although it's shit to go through, it doesn't necessarily reduce your fertility x

With hcg over 1000 you should see a sac now which is why the consultant is concerned - I'm surprised the nurses have so much say to be honest and attempting to overall the consultant?

With hcg numbers at this level and increasing I would take the MTX (methotrexate)

If you have the 1 shot the guidance is to wait 3 months before trying again (it's 6 months if you have more than 1 shot)

Yes I let can make you feel like crap and you are advised to avoid alcohol for a few weeks as it can affect your liver

I was given it for my first ectopic but my levels were over 5000 which was the upper limit they would offer it - I did rupture anyway though x

Thank you so much for all the advice and information, I didn't know about the hcg levels and what it meant so it is really helpful. It's comforting to hear of other people's experiences, I don't know of anyone else in 'real life' that has experienced anything like this and I'm sorry you've all had to go through this as well.

@SpringOfContentment yes, it's never been confirmed but I think you're about right with the 5 1/2 weeks. I actually would be happier waiting to see what happens as I had such a strong reaction with the medical management last year it made me very unwell and took about 6 months to recover in the end (was anaemic/low iron from blood loss), which is why I'm frightened about the possibility of medications but as I also said my body doesn't seem to do any of this naturally (based again on last year) so then I think I want some sort of intervention to get it over and done with - I'm feeling so many mixed emotions and confusion myself it's sort of why I'm so desperate for a solid answer from the hospital.

@Akj29 I've had bleeding and cramping period-like pain since I had the biopsy done on Tuesday last week but I had no symptoms before that. Congratulations on your pregnancy, it really is comforting to hear and wishing you all the very best with it.

@theclimb I was really surprised as well, the consultant I saw was very clear that was the path she wanted to go down so it was a real shock when I went in the next day and a nurse sat me down to say they weren't happy about it and wanted a second opinion. The first consultant said 3 month wait to us, then the 2nd said it had changed to 6 months, so interesting on whether it is one shot or more that can change the length you need to wait.

You should also factor in your mental health here - your hcg numbers are still rising not falling so waiting for nature to take its course could take weeks and for me it felt like I was a ticking time bomb - I did rupture (twice in fact as I've had 2 ectopics) and nearly died.
If you take the natural course then you have to have multiple blood tests per week so constant trips to the hospital and it's difficult to get on with life - to ensure numbers are falling and they may decide in a few weeks time to give you MTX anyway

You can't D&C an ectopic as it's in the tube obviously x

@theclimb you're right, mentally I have been really struggling with it all.

We went through everything at the appt yesterday and decided to go with the methotrexate, the registrar I spoke to was wonderful and explained everything really well and that we had basically exhausted all other options, plus also about the conflicting opinions. They did another scan and blood test and then I left and was going back at 4pm. I was comfortable with the decision and thought it was the right thing but also was feeling very scared.

Went back for the 2nd appt and they had been trying to call while we were travelling to the appt, but I hadn't seen it. Basically they got the blood test results back and my hcg level has dropped from 1579 on Wednesday to 400 (ish, I can't remember the exact number), so I didn't have to have the methotrexate as it seems to be happening naturally - I did pass a something yesterday morning before the appointment. I am going back for another blood test in a week to make sure the hcg level has still been decreasing. But it was a huge relief and we are keeping our fingers crossed that it continues to drop back to a normal level.

Thank you so much everyone for your messages and support, it really has helped.