Advice please

[Lostlawyer26]

I had my methotrexate injection today after a week of expectant management.

My questions are:
1) I had bloods today before the injection and they have asked me to go back on Friday for day 4 bloods. Is that right? Or it that technically day 3?
2) Does anyone have any success stories that will put my mind at ease? My levels were 122 at my last blood test.

I had a missed miscarriage in April so this was my second consecutive miscarriage. I have no children, I’m 32 (33 in September) and I’m wondering whether it will ever happen. No known fertility problems, is there any testing we can do in this 3 month wait or anything recommended?

Thank you x

[Deerdancer]

Hello,

I am so sorry you are going through all this, I will answer what I can.

1 - I asked the hospital the same thing because I had my 4th day bloods 4 days after jab, so Day 5 in my mind but they said it depends on whose giving the jab!
2 - I would say because your levels are quite low, hopefully this jab should do its job! My levels were 1970 to start and they started to come down with the 1st jab but because they hadn't come down 15%, I had to have a 2nd jab and my levels reduced rapidly then.

Don't lose hope! I know how you feel... I'll be 34 in Sept which I feel down about as started trying when 31, had 3 early miscarriages and now this ectopic but don't give up!
I would relax & give yourself time mentally & emotionally to heal but do make sure you take folic acid in particular over these 3 months & I'll be taking a prenacare plus as well.
Have you had any investigations? I know for NHS you have to wait for 3... Because ectopics are generally 'one of those things', there's nothing really to test for it so I wouldn't worry that anything is specifically wrong at this stage (often nothing is 'found') and from NHS point of view, you have managed to get pregnant twice this year (I found that annoying to hear after 3 miscarriages 2020-2022- 'well you can get pregnant...!' I was basically told to keep trying after all tests came back fine, so I went privately because all my 3 miscarriages had happened at 5.5weeks so I felt I needed help holding baby). I think if you were really worried, you would have to go privately unless you have a nice doc!
I don't know these are just my thoughts and others may have better advice from their experiences.

Hoping the jab sorts it out quickly for you!

[Lostlawyer26]

Thank you so much for taking the time to reply to me, it really helped.

I am considering going privately, did you have to wait a certain period after your miscarriages before having any tests? Did you ever find answers? For this pregnancy, I obtained a private prescription for progesterone and aspirin but sadly it still wasn’t meant to be.

Sorry that you also had to go through this. Has your HCG returned to zero now? Xx

[mowakasha]

The odd occasion I pop back on these forums because they helped me so much when I was in this period of life.

I had an ectopic end of 2020, I was 33 and had a Fallopian tube removed in an emergency surgery. I was so traumatised by it. It was my third pregnancy, I had a miscarriage and then a son then the ectopic.

After the ectopic I had another miscarriage. I was devastated. But I’m happy to say I then had another little boy.

In between the ectopic and eventually having my second son I had some private fertility testing where they looked at my fallopian tubes, it’s called a hycosy. But it was costly and they don’t always recommend it because of risk of infection etc. but it’s something you could look into.

I’m so sorry you’re going through this. It’s so awful and difficult to manage. I really hope you get the longed for baby. X

[Deerdancer]

I think if I write out my timeline, it might be the easiest to show you my route, sorry if its long but might help you understand what I did....

*Oct 2020 - 1st miscarriage
*Postponed TTC because I was getting married.
*6 months after TTC still nothing so decided to start ball rolling because NHS can take time! So went for a private scan Feb 2022 to check ovaries, all fine but possible PCOS, my husband got checked privately a few months after but all fine. *Asked GP to be referred to fertility specialist because it had nearly been 12 months of trying (they say to see doc if not conceived in 12 months) & I knew would be months before I got an appointment, luckily they obliged and I got a hosp appointment for September 2022. However last month of the 12 month period I conceived in May but miscarried June, pregnant again August but miscarried Sept.
*Went to hospital fertility appointment in Sept and because I had now been pregnant 3x (when I booked it I had only been preg once) she said I needed recurrent miscarriage clinic & she would refer me.
*Again I thought it would take months so I looked for private clinics & they told me what tests to have so had them done through GP - all results were fine and then the clinic I opted for looked at Immunology and Natural Killer Cells (he is an NHS doc but not offered on NHS currently).
*Meanwhile NHS Recurrent Miscarriage Clinic appointment came through, they said I'd had all the tests & just to keep trying & to take progesterone at a positive test. Because all 3 of mine had miscarried at 5.5 weeks I knew I needed help holding the baby & I felt I was just left to wait for another miscarriage tbh.
*The clinic found that when I was preg, my immune system would attack the 'foreign thing' - finally had some answer to what might be happening & felt better to have a plan rather than waiting around. So the private clinic put me on Pregnacare Plus, CoQ10, aspirin, progesterone, steroids & intralipids from Ovulation not a positive test. I conceived 6th cycle but unfortunately I won't know if the drugs helped as it was an Ectopic but I am certainly going to try again, I would love to know if had been successful if it had implanted in uterus!

I hope that helps understand my journey. As you can see I did NHS & privately alongside each other. I haven't really an answer but I will be trying the above drugs again I think, I can't sit around waiting for another miscarriage at 5.5weeks...
The progesterone & aspirin might have worked for you if it hadn't implanted in the tube, from what I gather an Ectopic is one of those things really...so I would go for it again!

Yes my HCG came down to 7, 3 weeks after 1st jab, they kept me for another week to check it came down below 5 so I was discharged last Friday. This is the 1st week in a month that I have felt more human! Do ask if you have anymore questions, I don't know if my whole story is helpful! Xx

[Lostlawyer26]

Thank you for sharing your story. You really have been such a help to me, I do hope you get your positive ending soon!

I had my day 4 blood test today and my HCG has gone up to 270 trying not to panic as I have read a lot of stories on here that it can happen. Did you ever question whether you made the right decision having the injection over surgery? Xx

[Deerdancer]

Thank you

Don't worry that is totally normal and then they are looking for a 15% drop between Day 4 & 7. I am beyond relieved to have been able to have the jab over surgery. 4 consultants told me to have surgery even though I was stable (no internal bleeding), hcg below 5000 (2000), mass not too big (2cm) - I was going to follow their professional advice but my private clinic had actually rang me and said I should try the jab first & that it could affect fertility (even though consultants said it didn't...)... I felt so clueless but luckily due to emergency surgeries in the hospital, my surgery was pushed to next day so I slept on it and I woke in a panic. I didn't want to lose a tube & I thought it may be that one day I won't have the choice & I'll need surgery (if jab doesn't work or another ectopic) but why get rid of it now, try the Methotrexate. I'm just so so glad I still have my tube tbh...A bit confused why the hospital were pushing surgery in my case tbh... xx

[Lostlawyer26]

I really hope I have the same experience as you When I got the call yesterday I panicked as they kept saying if my situation changes over the weekend I have to go to hospital immediately. Now that I am (slightly) calmer I realise they have to say that!

That is really great that your private clinic gave you that advice. I’m based in London and want to find somewhere similar, the one that comes up on most forums is in Coventry, but I will travel anywhere for answers. The hospital just keep saying I am “unlucky”.

It’s interesting that they pushed surgery over the injection. I have read that they should try the least invasive option, I guess it depends on the stance of the person on the day. Thankfully it has turned out ok for you and you have kept both tubes! Have you had or are you considering a hycosy like the previous replier had? Xx

[Deerdancer]

Yes every time I rang for results, they said the bit about hospital, even when my hcg got down to 7! I think I often forget it is potentially life threatening so they are looking out for us! Hope it comes down for you!

Do you think you want to go privately or have another go first? Happy to share any info if you need, I'm in London too but I do go to Epsom. You could very well be fine next time as an ectopic does seem to be 'unlucky' from what I've read but that actually makes me feel sick to the stomach because there's nothing you can do about it whereas with my other miscarriages I could try looking for answers. So I do feel nervous about going forward & a bit at a loss because it could happen again & I can't do anything about it...

I have considered a hycosy but not sure, I've heard it can be painful & I'm quite fed up of being put through all sorts but then if it helped...? The EPU sort of told me not to as your tubes can go into spasm & so they can't see anything and they said I'd probably have to do it privately, which I don't feel like paying £500 for something that might not work, so as you can see I'm very undecided! Also it just shows blockages I think but not how the actual villi work. I feel I might wait a few months & if it's not working,then consider it. I wish there was an easy way of seeing the state of my tubes, the consultants said my tube would be damaged anyway where the mass has been but I've no idea how badly... So I'm a bit !!

[Lostlawyer26]

I feel the same about the hycosy. I need to get my HCG down first before I can properly start to decide but I feel like the 3 months is going to drag so having some sort of plan may help me. Would love to think we will just try again but feel like the ectopic has changed my approach!

How are you feeling now? Xx

[Deerdancer]

How has your 1st jab gone?
I now feel human again which is nice, took me 4 weeks from 1st jab. I'm planning not to 'think' about it all of August and then going back to private clinic beginning of September to see what they say & take it from there... I'm hoping by that time I'll have had 1st period and 2nd one will almost be due so that will be almost 3 months. I'm hoping to be allowed to try after 2nd period but who knows! I don't know what's right going forward tbh, feel like it'll be throwing the dice and no-one can predict what will happen- I don't like the feeling of no control...but not much I can do I don't think...sigh

[Lostlawyer26]

I had my day 14 bloods today and my HCG went from 193 to 43. Feels odd having a mixture of emotions, mainly relief!

So pleased you are starting to feel better, I think your plan sounds really good. I know what you mean, there’s no ‘set’ way to approach things but if it is any comfort I will be doing something similar, if I can find a clinic to carry out testing! Xx

[Deerdancer]

That's fab! I know the feeling, it felt odd to be relieved the hcg had gone down but then a bit wistful because in an ideal world you want your hcg going up!

Good luck going forward, I hope you find a clinic that works for you