Methotrexate for ectopic experiences?

[FullMoon1917]

Hello,

I am 2 weeks on from a methotrexate injection for a right sided ectopic and I was wondering if anyone can tell me how long the pain and bleeding lasted for if they had the injection?

I have found plenty of official websites but for my MMC I took so much comfort in actual peoples experiences if that makes sense!

I have now bled for a whole month and its been incredibly heavy. The consultant tells me this is normal and just my hcg dropping but the money I am spending on pads is insane!

I also have already been admitted once for the pain and they can see a 6cm blood clot and free blood in my pelvis and that is apparently normal? To be fair they have said surgery is on the table if I can't take the pain but that my tube and the methotrexate are pushing out the pregnancy and as long as I can handle the pain and the internal bleeding isn't out of control I just need to wait it out the 8 to 10 weeks it will take to resolve.

Can anyone share their methotrexate experience, and tell me when the pain and bleeding stopped for them?

Just to add my hcg has gone from 2150 on day 1 to 2198 on day 4, 1190 on day 8 and 198 yesterday on day 15. The doctor said I am having a really good response to the methotrexate as its dropping so quickly and I will add for anyone that finds this in the future that I have followed a low folate diet and I think its helped.

I’m so sorry you’re going through this.

I had an ectopic (ruptured and had surgery) so don’t have any experience of Methotrexate, but didn’t want to read and run.

It sounds like it’s working, in terms of your HcG dropping, so hopefully the blood loss will reduce. Do keep advocating for yourself if it doesn’t and you feel worried. Wishing you all the best

@SagittariusUprising thank you for replying. Can I ask how the recovery from your surgery was? The pain is quite bad and I don't know if I can do this for 8 weeks so might ask for it.

In my case the recovery was quite tough, but, the ectopic had ruptured, I’d lost a lot of blood, and was severely anaemic. So, chances are the recovery would be much more straightforward for you.

Hi @FullMoon1917 how are you getting on? I had to have surgery this afternoon because my tube ruptured (2 days after methotrexate shot) 😫x

@liltshake so sorry i missed this! Oh gosh i am so sorry to hear that! I am OK, my pain is still awful when i go to the loo but otherwise manageable with codeine. How has your recovery been?

@FullMoon1917 Have you had any more scans/blood tests? recovery has been so much better than I expected! I’m already completely back to normal - I could walk pretty much as normal after 2/3 days. Feel relieved I had the surgery tbh cos it’s just over with now x

@liltshake i have had weekly blood tests and my hcg is now down to 47 but no further scans since the last one. To be fair i have been scanned 5 times since the start but it took 3 to even find anything!

The pain is still next level around twice a day and is definitely associated with going to the loo unfortunately. I am thinking of getting a second opinion (oddly enough it seems my work Bupa covers ectopic pregnancy) as I was genuinely in tears from the pain yesterday.

That's really good you've recovered well! Have they said when you can go back to normal activities yet?

Hi @FullMoon1917, I was wondering what happened to you after this? Hope it was resolved for you! I am in a similar boat with the Methotrexate, I had the injection 19 days ago (my pain/bleeding was not constant like yours, only for about 5 days last week) but today I have this weird almost sharp ache on one side especially when sitting and in certain positions, which is weirdly the opposite side to where they have diagnosed my ectopic. I’ve also had some diarrhoea since yesterday and the pain gets more achey when going. Called my EPU who said maybe I just have the stomach flu, I have my next blood test tomorrow so doctor is going to call me back.

hoping since your ectopic last year, you have healed ❤️

@Blondepeach so sorry to hear about your ectopic, its such a hard ride isn't it.

To be honest I think I have blocked a lot of it out so I would need to ask my husband for the details but I know the blood clot ended up being 8cm and the pain was really associated with me going to the loo so I couldn't really leave the house in case the pain came on.

They finally put me on a high dose of ibuprofen instead of the codeine and it worked like a dream! My final follow up scan at the end of Sept showed it had shrank massively and the doctor said I had a great response all in all. They also said I coped with it incredibly and that I must have been in so much pain (no kidding).

I didn't have any diarrhea or anything so maybe you do have a bug? Honestly the pain from the methotrexate was something else like I was being stabbed, but I will say advocate for yourself and ask for a scan even if they say its not needed.

Whats your HCG levels like now?

@FullMoon1917

Thank you for replying and sorry to be making you relive it all, it’s terrible isn’t it 😓

Great to know yours eventually resolved and you did not rupture. It’s just a constant fear of it rupturing and not knowing what type of pain is normal, I feel my EPU have been amazing but not given me too much info on what to expect.

I actually had no pain or symptoms with the Methotexate thankfully, apart from period pains and bleeding last week which was about 2 weeks after the injection. During my scans (I’ve had 4) they could see something in my left tube which measured at 10mm, it never got bigger at any of the scans, so they felt I was low risk for rupture based on what they could see.

My levels have been/are:

highest & just before injection : 3080
day 4: 3800
day 7: 2300
14 days (last week): 790

They have said they are dropping really nicely and they are happy, I’ve been off work for 4 weeks and just returned this week as thought it was resolving itself, but I guess not out of the woods until it’s much lower.

Doctor called and said just to come to my bloods appointment tomorrow and they will also examine me.

If you don’t mind me asking, with your follow up scans did it show it had completely gone eventually? They haven’t discussed giving me a last scan but I would really like one to ensure what they saw on my left tube has gone, but wasn’t sure if they even do that - sounds like with you they did which is good!

It seems like its really different for everyone unfortunately. I had my final follow up scan like I said but there was still a haemorrhage/mass there then, it was just smaller.

Like i said my case was quite dramatic with how long it took them to find it, then how much internal bleeding I had etc so I probably got more attention than most....

When I asked they said the only way they could tell if it had cleared my tube was a Hycosy which I had ironically had before the ectopic and the nhs fertility clinic wanted to go straight IVF so they wouldn't give me another.

All I will say is trust your instincts, you will know if a pain is not right. My pain was apparently associated with it being pushed out the end of my tube and causing bleeding, I don't think its that common from what I can see online but the doctor didn't seem concerned.

Your HCG levels have come down loads! Mine was only 1500 to start with but I think took 6 weeks to get to under 10.

@FullMoon1917

Oh ok that’s interesting (about the mass), I can’t seem to find much anywhere about the possibility of it going but I guess it’s different case to case, I’ll definitely push for a scan to at least have a look.

Looking forward to it all being over, feels like a lifetime ago that I got my positive test on the 19th January - also really could do with a wine 😅

xx

Just wanted to update this to say even though I was assured my tube wouldn't be damaged unless they tried surgery it looks like I have a hydrosalpinx so that tube is blocked with scar tissue and filled with fluid. I wish I had just had the surgery as this has wasted nearly a year of my life.

@FullMoon1917 I’m so sorry to hear this. Have you had surgery to remove the hydrosalpinx yet? It is always tempting to play what-if, but you made the best choice for you at the time with the information you had. That’s all we can ever do. Please be gentle to yourself. I’ll have my fingers crossed for good news for you soon x

@SagittariusUprising thank you, I feel OK about it to be honest as at least it provides some sort of reason as to why we haven't conceived since the ectopic.

I see the specialist in 2 weeks to find out next steps and I am praying its not a long wait for surgery. Even though this is private I still have to wait a month even for the first appointment!

Just trying to enjoy living a somewhat normal life till then not worrying about fertility!

Posting this just in case someone else finds this useful (as i know how much i searched mumsnet for similar experiences).

My private scan showed no evidence of a hydrosalpinx or endometriosis but my consultant said she could still do a laparoscopy/hysteroscopy to check.

Had it yesterday and she found 2 tiny polyps and significant scar tissue on my right side but no hydrosalpinx and my tubes were clear. Unclear whats caused the scar tissue but it does seem the methotrexate did what it was supposed to and saved my tube!