Ectopic - anyone there who has been through this?

[nina34]

Hi all, I was told I have an ectopic pregnancy yesterday. I have known from the beginning this pregnancy wasn't right but I kept being told maybe I had my dates wrong or that I was miscarrying (I knew I wasn't - been through that too)

I am now in limbo. Having my bloods tested every few days and feeling very scared.

I have been told it's fairly small and is located in my tube close to my ovary so it is possible it could be expelled from the tube and reabsorbed. I hope so!

My hospital don't do medical management so I am going to be 'treated' like this, with blood tests until such time as they decide they need to do surgery.

It is scary. I am worried about damage to my tube, or loss of it if they leave it too long.

Has anyone been through this? I feel like I'm the only one in the world

[Muser]

Hi. Really sorry that you're going through this. You're definitely not the only one in the world. I'm currently having medical management for an ectopic pregnancy. I had my methotrexate shot 2 weeks ago today.

It is scary, but they wouldn't do expectant management on you if they thought it was too risky. If your body reabsorbes it you won't have the risk of scarring or potential loss of a tube, meaning future pregnancies will be less risky. It must be very scary just to wait though.

I've found the forums on the Ectopic Pregnancy Trust website really helpful, here's the link: www.ectopic.org.uk/forums/viewforum.php?f=1. Mumsnet is great as well, but there's not as many of us here.

[nina34]

thanks Muser. Sorry you are going through this too. I hope you are starting to feel better (physcially if not emotionally) It's just so horrible, isn't it? Definately the worst thing I have ever been through.

I can't stand the waiting around. I just want them to do something! They phoned me today with my blood levels which have gone up by about 40 in the last two days (were previously doubling) so I was feeling slightly better but now my pregnancy symtpoms are back with a vengeance. They don't want me back until Monday and I am getting myself in a state as convinced they will be sky high by then.

Thanks, it really helps to 'talk' x

[nina34]

thanks Muser. Sorry you are going through this too. I hope you are starting to feel better (physcially if not emotionally) It's just so horrible, isn't it? Definately the worst thing I have ever been through.

I can't stand the waiting around. I just want them to do something! They phoned me today with my blood levels which have gone up by about 40 in the last two days (were previously doubling) so I was feeling slightly better but now my pregnancy symtpoms are back with a vengeance. They don't want me back until Monday and I am getting myself in a state as convinced they will be sky high by then.

Thanks, it really helps to 'talk' x

[Muser]

It is a horrible experience and the waiting is the worst bit. My pregnancy symptoms continued as well, and when the hormones start going down things go a bit weird too. It's a long ride, but you'll get through it.

Physically I feel a lot better now, I'm not sleeping very well but think that's just emotions. I've definitely found talking about it helpful. My family and close friends know what's happened, it's nice to be open about it. Makes me feel it isn't something to be ashamed of.

[MrsHappy]

Hi

I'm sorry you've had such rotton luck.  The waiting is hard, but for what it is worth, if they treat you with methotrexate there can also be quite a lot of waiting too.  Methotrexate can make you feel a bit crappy (and doesn't always work) so IMO avoiding it is no bad thing.

I had 2 ectopics a couple of years ago and while it was awful, I have since had a little girl. Life goes on, and it only took me 4 months to conceive her with just one tube, so it can be absolutely ok.

I hope it resolves itself soon.

[nina34]

Thanks for the replies.

Well, I returned to EPU after a crappy weekend with increasing pain and an increasing feeling of desperation, add to that of course, the never ending bleeding!

I had a scan which showed pregnancy has enlarged. Have had bloods taken and am waiting on results.

Was given option of being admitted today and having surgery or waiting for bloods and then either going for surgery, medical treament or 'wait and see' I can't do the third. I just can't take it anymore.

I don't want surgery if I can avoid it so I am pressing them for Methotrexate tomorrow. Is this the right thing? Can anyone help me make this decision? It just seems the lesser of two evils. The doctor went on about high failure rate but from what I've read it's mostly successful.

Please, is anyone there?

[nina34]

just spoke to consultant who says hes not hopeful about chances of success as pregnancy has been visualised on scan and my bloods are now at 680 did anyone have their ep treated successfully with meth after having seen an embryo on the scan?

help! anyone....

[MrsHappy]

I did. Both my eps were seen on scan and the first was successfully treated with methotrexate. They won't use it if your HCG is over a certain level, but mine was iirc 2000-ish that time and that was ok.

I think methotrexate has something like a 15% failure rate and sometimes they have to give more than one dose. The number of doses you have impacts on how long you have to wait before you can get pregnant again.

As I say, I had it the first time and it worked, but the downside (apart from that it made me feel like poo and I had a lot of abdominal pain while it did its stuff) was that my tube was left damaged, either before the ep or by it. And then I had ectopic number 2 in that tube six months later.

At the time methotrexate was the right choice for me because I was scared of surgery and wanted to be in a fit state to look after my DC. But the second time around I just wanted rid of that tube.

If you do decide to have methotrexate, there is some waiting around and repeated blood tests as well. It took a few weeks for my HCG to fall to non-pregnant levels and I did find that quite stressful and emotional.

There's lots of info on it at the Ectopic Pregnancy Trust website here.

HTH. Again, I'm sorry you're going through this; it is really awful.

[Muser]

My pregnancy was visualised and my bloods were around 3,500 when I had methotrexate. I think the threshold is around 4,000 or 4,500, but I might be out on that.

Methotrexate is a bit of a bastard. I felt absolutely exhausted for a good week and a half after it. They threatened me with another dose but thankfully my bloods fell faster in the 2nd week so I was spared.

With methorexate you also have to wait 3 months before TTC again, as it strips the folic acid out of your body. I'd recommend going to the Ectopic Pregnancy Trust site and reading their leaflets on the different types of management.

[nina34]

i had the methotrexate on tuesday. my bloods yesterday were hcg 667 and progesterone 26.1,
on monday they were hcg 680, progesterone 40.1

is there any hope or do you think i am going to need it repeated?

still have sore breasts just want this nightmare over with

[Muser]

I think it's actually quite common for HCG levels to go up in the first 4 days after methotrexate and then they fall. At my hospital they don't test you until a week as gone past because of that. See how you're doing on Tuesday, hopefully it will be fine.

[Muser]

And I know what you mean about wanting it to be over. It's been 3 weeks since my methotrexate, next Wednesday will be week 4. I started off around 3,500, now I'm down to 283. It feels like it's taking forever.

[nina34]

i was down to 256 on monday so a massive drop in 7 days, thank god.

I'm still getting some pain in my left side and still bleeding, obviously but am hopeful the end of the nightmare is in sight!

Does anyone know when it is safe for me to drink alcohol/start having sex again??? was given no advice from the hospital at all and not due to go back for nearly 2 weeks.

[marmitemad]

I was told no alcohol or sex until my hormones were back to non pregnant levels (which took over 14 weeks!)

so sorry for your loss x

[Muser]

The leaflet I got said no alcohol or sex until HCG levels were under 100. I had a glass of wine the other day and got such a bad headache the next day I think I'm going to leave it longer to drink.

[bella8445]

I am so sorry for what you are going through, I had a missed miscarriage last oct, Im now meant to be 6 weeks, went to epau they saw nothing and have been told it could be ectopic, I am going back tomorrow to see if my bhcg is still going up and then I will be told whether they will keep me in for op if ectopic... It is a very sad, stressful time when anyone has a loss. I hope all goes well for you and in the future.xx

[Jadey22]

I just wanted to give others who are in the same place as I was last year a positive story. I fell pregnant first time and we were so excited, it kinda felt too good to be true.. it was. I tested with clear blue and first response and both were negative for a few days, it wasn’t until 5 days after my missed period (I’m like clockwork) that I got a positive test (in hindsight this was a warning sign) anyway everything was fine for 6 weeks and then I had some light bleeding with light period cramps, I went to the doctors the following day who said it was a miscarriage. I was still testing positive and still felt sick and had sore boobs, the EPU refused to scan me unless I’m two weeks I still had a positive test.. something didn’t feel right but I was in no pain at all. I decided to book a private test just so I could be sure (I think I was hoping everything would be okay) the sonographer told me there was nothing in my womb and that the miscarriage had all cleared. I was still testing positive, I insisted my doctors took blood and the next day the EPU called and asked me to come straight in my bloods were still showing I was very much pregnant.. I was scanned and sure enough at just over 8 weeks there was a baby with a heartbeat in my left tube. I was devastated but also felt lucky that it hadn’t ruptured. I had my tube and baby removed and had 2 weeks off work feeling really crappy, wondering if it would happen again, how long it would take with one tube and constantly searching for success stories. I felt useless and like a failure, it was horrible and felt like it would never get better. 4 months later I had a positive test, 5 days before my period was due. I hoped this was a good sign but didn’t want to get too excited, at 6 weeks I had a scan and the baby was in the right place and now I’m 20 weeks and everything is going well. I just wanted people to know, it does get better and losing a tube isn’t as bad as it sounds! X

[BabyPending]

@Jadey22 thank you for your positive story. I too have just gone through an ectopic and had to have my left tube removed :( except this was following 2 previous MC as well so 3 losses in total.

I am feeling completely and utterly helpless and useless. I'm hoping I can see more positive stories xx

[Laurrra]

@BabyPending how’s things going? Just come across this and I’m just waiting for confirmation of ectopic after 2 miscarriages! Hoping you have good news or will do soon!

[BabyPending]

@Laurrra - I am so sorry you have been through the same, it is just so horrible. I am happy to report I am currently 26 weeks pregnant following my 2 MC and ectopic. I am still very cautious and protecting my heart, pregnancy after loss is NOT easy but I am so grateful for where I am today so there is definite hope sweetie! I hope you follow the same path and will have your rainbow soon. I also have a TTC instagram account if you wanted to follow me and chat more, my username is : arainbowawaits

Good luck hun xxx

[Laurrra]

That’s brilliant and exactly what I was hoping to read! I’ll follow you on insta definitely and would love to talk more. Thank you so much xx