I'm so lost/frustrated & my doctor is being uncommunicative

[sayrian]

I don't know if anyone here can help me or maybe point me in the right direction but I am frustrated. I am not in the UK (I hope I can still post here) so I have no early pregnancy unit that you guys seem to have. I just have my obgyn to go to and she is not communicating with me.

I got my ectopic diagnosis and the methotrexate just this past Friday and have have been given no explicit instructions other than telling me to avoid folic acid and that I might bleed a lot. I messaged my doctor asking if I should schedule an appointment with her but she basically ignored my question and just told me to go get my hcg tested again, which I did.

Can anyone give their experiences or information about some/any of my questions?: I'm so lost and tired of searching google.

How often should I get my HCG tested? How fast should it drop?
Am I still at risk for a rupture even though I got the methotrexate? How long will I be at risk?
Would it have been safer to do surgery instead of the methotrexate?
How long before I can wear a tampon?
How long until I can have sex?
How long until I can start trying for a child again?
What can I do for future pregnancies to avoid getting to this point of emergency?
Is there a way to scan my fallopian tubes to figure out the cause of the ectopic pregnancy?
Am I safe to go on vacation (airplane 3 hour trip) in two weeks?
Should I be avoiding activities other than lifting?

I've emailed my doctor these questions but I doubt I will get answers from her any time soon.

Thank you so much for any answers you all can provide.

[EctopicPUL]

Can’t answer all but some. I am not a medical expert and just someone who has hung around the board you’ll get a reply from a forum admin at some point though they too can’t give medical advice.

-no tampons until bleeding has stopped. Cervix may be more open than usual and they can introduce infection

-I was okayed to fly when my hcg was 70, but when it had persistently fallen on 48 and 72 hr blood tests

-I believe you always have a risk of rupture under your hcg drops to normal. Therefore, take it easy!

-sex - I believe it’s when bleeding stops and many weight until hcg has dropped low too bc of risk of rupture. I did it when I was in the 100s but I was obsessed with getting back to normal over my birthday

-I think you should read the ectopic forum booklets on methotrexate. The usually suggest waiting a certain number of cycles (can’t remember how many but it’ll be on most posts from the forum admin) bc your body and eggs will be depleted of folic acid. Waiting is to ensure you have time to get your levels back up and reduce the chances of spins bifida etc. Also it’s a good chance to process what’s just happened!

-HCG in simple miscarriage drops more regularly until 3 weeks after passing people USUALLY will take a negative pregnancy test. Methotrexate and expectant management varies. Your hcg should initially go up after 4 days and then hopefully begin to drop. But don’t be surprised if there are plateaus along the way. You don’t state how high it was to start?

You can’t really avoid ectopic pregnancy (I went obsessive researching!! When I found myself reaching a medical article from 1915 I realised I had looped the loop!) in the uk the rate of reoccurrence is 1/10 and they recommend early scans as soon as finding out you’re pregnant again to monitor and prevent emergency

There are some scans you can do but these are certainly not routinely offered after ectopic in the UK and my consultants have said there is often more risk (scarring and infection) of an intrusive scan.

I don’t know much more but do read the booklets on here and ectopic pregnancy dot co dot uk also provides info too.

[EctopicPUL]

Wait* not weight.

So many typos in my msg but hopefully you get the jist. We’ve all been there and panicked researching. It’s only of those things that forces you to stop and take time.

I’m not naturally patient so I get how difficult that is!

[sayrian]

Thank you SO MUCH for replying to my questions. I am literally crying from relief that someone is taking the time to at least try to help me (also my emotions are whacky so that might be contributing as well, ha!)

My HCG apparently went down before I even got the methotrexate. It was 640 then 734 two weeks into my pregnancy, but the day I got my methotrexate it was down to 696 then yesterday (four days after MTX) it was 627. I don't know why it dropped beforehand or how they were able to find the ectopic on the ultrasound with it being so low, but I'm assuming that I have a large blob of blood in my tube which they were able to see (oh and I have a cyst on the other side, so great job body...

And I totally understood your message no need to edit it for typos. You are so thoughtful to type out all of that information and it really put my mind at ease. I really hope my doctor responds to me soon and let's me know information for my specific case, but going in armed with general information like you gave me is what I needed.

And seriously, I have been obsessively searching like you said you did and I just am so emotionally drained by it. I'm learning a lot, though, so there's that, ha.

[EctopicPUL]

You will be okay. It drives you nuts and when the physical has ended, I was surprised to be hit by a load more emotions despite my Mindset being quite practical throughout. Once the risk has gone and hcg is down, prep for the waves! Lol

Your hcg is actually relatively low overall and it’s a good sign really that it was a bit lower. It means the ectopic wasn’t growing as appropriately and maybe excuse my wording but was naturally failing which is good bc you need it to get smaller etc.

I know what it’s like to be googling forums in your home country, abroad, deciphering medical info online!

Just remember to avoid any vitamins and supplements and particularly folic acid. I don’t think the forum has a theory either way on it but many people take the approach of a low folic acid diet. I didn’t do much but usually I add frozen spinach and peas and greens etc to dishes and during the period I was waiting for my hcg to drop, I didn’t.

I had expectant management not Methotrexate but I think it helped me psychologically feel I was ‘doing’ something.

Don’t be surprised if you pass tissue - it’s not a baby - but sometimes the womb lining can pass as tissue in ectopic. Delightful but certainly in my experience, not severely painful. They call it a decidual cast but it’s nothing as scary as described online. I just wish I’d known.

Reach out and use us. I know what it’s like to be screaming internally and wanting someone to understand or have some kind of answer, trust me X

[nicolestubbs]

Hi

So may not be able to answer all questions but with having had the methotrexate this is what Iv been told from a consultant in the hospital, To have your hcg levels tested day 4 and day 7 then weekly after that until they reach 0! To avoid getting pregnant for 3 months as there could still be a possibility of having another eptopic . In regards to being scanned did they not do this to begin with when you found out? Iv had no bleeding so I can’t comment on this. In regards to rupturing you need to watch out for being short of breath, doubled over in pain and sharp pain on one side of your abdomen, if you’re concerned with anything going on I would go and see a GP! I’m not sure how quickly the hcg levels should be coming down but before I had the methotrexate my levels were at 3600 something by day 4 of having the methotrexate it had gone down to 1500 and by day 7 had done another drop and I was told it was in its 100’s. Your gynaecologist should be monitoring you or at least keeping a close eye on you and letting you know me when your hcg levels are back to 0. If you’re considering any form of contraception Iv been advised to wait for a ‘normal period’ before having anything, Not sure on the travelling, I would just advise to take it easy rest when possible and don’t over do it as Iv ended up in hospital twice by rushing with doing things
Hope this helps!

X

[sayrian]

Thank you both SO much for your responses.

I finally got a hold of my doctor today and she explained the answer to most of my questions (which actually was pretty much the same as what you both said, ha!)

I'm just playing the waiting game now until something happens one way or another!