Any hope? Miscarriage, rupture ectopic, chemical and PUL/ectopic

[daffodilaster]

Hello everyone,

Guess I’m hoping for some light in the darkness. We’ve had an awful year and I just need some hope or possibly advice of what to push for in follow up. In an incredibly sad place and loosing all hope :(.

History. Miscarriage September 2021 D&C as they weren’t coming away on their own. January 2022 ruptured ectopic and loss of my left tube (left far too late by the hospital but that’s another story). April 2022 chemical. Paused whilst we had recurrent miscarriage tests done including HSG and nothing found but low vit D, HSG was perfect. July PUL or ectopic, found a small mass near my right ovary but never found a sac despite HCG at 4800, (caught early by a different and amazing hospital) treated with 2x methotrexate. They’ve wanted to preserve my tube as they aren’t sure where the baby was, I have a great consultant looking after me and he’s said to wait 6 months then he will do another HSG. He’s said to wait to give everything time to settle. Other consultants and nurses have said they think I’ve got a chance naturally and they’ve seen people in our position have babies.

I wondered has anyone had success in our position and any recommendations at all to push for additional tests between now and next year. Or are we best going down IVF? Which I’ll have to shift some weight for. I would love to hear from people.

Hi @daffodilaster I'm really sorry. That's shit. I think if you're younger, I might try a little naturally for a while but if you're 35 plus, I would go for IVF straight away if you can afford it.

Hi Beansi,

Thank you for your reply really appreciate it. I’m 32, 33 in Nov. Normally run 3 times a week and walk the dog. Overweight but can get it off when I set my mind to it (which I am doing).

Sorry appreciate that’s more my health than responding. Sorry my brain is fried. That’s my gut feeling and the staff keep saying we’ve got time on our side.

Bump x

Sorry to hear you’ve been through all of that! If this is any help, I’ve had a molar pregnancy and an ectopic where my left tube was removed. I was anxious after this so I pushed for additional tests as I wanted to know my remaining tube was all ok etc. They ended up putting dye through it to check it came through the other side. I fell pregnant naturally 8 months later with my now 6 year old 😊

If you want to go for extra checks, go for it! I thought it was better for me to get checked sooner rather than finding out later on that there were issues. xx

Hi @EDeans10 thank you for replying and your story is great to hear. I had a HSG in June after our ruptured ectopic in and tube removal January, it was spot on. Then following month fell pregnant with this PUL/Ectopic. Consultant has booked another HSG in February (consultant won’t do it before that as he wants things to heal). So we will see from there, my gut feeling is it isn’t in the tube it’s next to it. Can I ask did you have any other tests done as well?

I think I did have a few other checks but I can’t actually remember what I had, sorry not much help! I have actually just suffered another ectopic so I think I am going to get mine checked again, just for reassurance I guess. X

@EDeans10 I’m so sorry to hear you’ve had another. It’s so devastating. I’m assuming you’ve had methotrexate, hope you don’t feel too rubbish. I’ve had three lots now and feel knackered. My consultant has said their is nothing else they can do, I’ve had all the RMC tests done on the NHS (will look at any one which are private only I guess). He’s put me on track for HSG early next year, sign. So here begins the 5 & half month wait 😞 x

Yes I did have Methotrexate, it completely wiped me out but I’m slowly getting there! Oh wow 3, bless you, not surprised you feel knackered! Do you mind me asking why you’ve had to have 3? Did your HCG not go down as it should? I really hope that time flies for you. I think I’m going to follow in your footsteps and request HSG, did you do this through your doctors? Xx

@EDeans10 Hi, it wipes you out doesn’t it. People don’t realise how rubbish it is. God awful stuff but better than surgery any day of the week. I had three as it wasn’t coming down as quickly as they would like, having one tube he didn’t want to risk it. I’m still not at 0! Which I am weirdly happy about as I’ve got them a little bit longer ❤but frustrated it’s not over in equal measure. Thank you and I hope it does for you too. We are determined to get there one way or another. My amazing consultant who has looked after me throughout this loss, has adopted us I think, he has essentially taken me out of the general EPAU/WHU pot and taken me on his case load which I’ll be forever grateful for. He has said he will book it for 6 months time and then see me, from there we will see if it’s try again naturally or go down the route of IVF, think it’s because I’ve had 4 losses now and my previous ectopic at another hospital was handled so badly, he’s taken pity on me. You can certainly push it with the GP or if you had a specific consultant look after you could try their secretary to book an appointment or ask their advice? You can have it done privately but it’s about £500. A bit off topic but I don’t know if you’re in the UK but the loss of the Queen and noise of the National grief is sending me extra wobbly today. No escape either it’s on every channel, radio, social media (I appreciate that it is to be expected and certainly appropriate for the loss of Monarch). But the nations grief on top of this personal grief is heavy. 😞

Ah I see, I’ve only had one blood result so far and they’ve said it’s gone down as it should but I assume it may not keep going down so I’m still not out of the woods just yet, may need another injection. Did your first one go down or did it not go down at all? I am in the UK and the sad music on the radio has me in tears almost every car journey! X

My day 4 had gone up which is normal and my day 7 had slowed but still gone up a little, so I had another dose. Then they went down really quickly, but then slowed again and my consultant wasn’t willing to risk it given my history so I had a third dose. I’m still on the downward 100 to go, feels so wrong hoping it will go down 😞. I hope yours behaves itself and you don’t need more doses. It’s awful isn’t it, totally overwhelming, you can’t escape the grief.

Oh bless you, I’m so glad they’ve taken your past into consideration and not risked your remaining tube, I had to massively push for the injection as they wanted to operate and I refused as I was well in myself and I was not willing to loose my last tube! I’ve had my 3rd blood results today and it’s gone right down so behaving itself so far. Really hope you’re doing okay, I promise you’ll get there! Xx

I’m still looking for hope. After a diagnosis of NK cells in January 2023. I found out I had a mass/fibroid/chronic ectopic in March 2023 which is in my Pouch of Douglas and I’ve been told to leave alone for now by 3 consultants maybe have it removed for IVF. My AMH is in the normal range for my age albeit lower end. We were given then go ahead in May and fell in July 2023, I’m now having a chemical. Any happy endings after our 5 losses, silent miscarriage, ectopic, chemical, PUL, chemical stories would be very much welcomed. I’m loosing hope 😢

@daffodilaster wow you’ve really been through it. I don’t have a happy ending yet but I am on a treatment plan for NK cells and doing IVF. Did you have the surgery? Are you on treatment for NK cells?
I can recommend crp epsom clinic but it’s very expensive x

I’m sorry you don’t have a happy ending yet either.

I’ve not had surgery as no-one but Epsom thinks that the mass/fibroid needs removing does risk outweigh the benefits and I can’t really afford it privately, if I might need IVF too. Hoping it’ll be okay as it is or to be on the NHS list at some point via the fertility clinic.

I am having treatment under CRP for NK cells too and you’re not kidding it is expensive.

I know often posts don’t get finished and no outcome posted. So here goes, I kept on with treatment at CRP I had two further chemicals bringing the total pregnancy losses to 6. However, tweaking the meds worked and in late Summer 2024 we welcomed a happy healthy little one who is currently lazing in my arms. It was a planned section as baby was huge and whilst in there they found the mass, tested it and it was placental tissue, so ectopic 2 (loss 4 from summer 2022). To anyone who finds this in the trenches of pregnancy loss, I see you. I know it is hard, it’s devastating, heartbreaking, and it changes you and you’re forever researching and fighting your own corner which is utterly exhausting. I hope you get there soon and wishing you all the rainbow dust.

@daffodilaster I am so happy to see your update. Congratulations!! You deserve every second of snuggles with that LO after all you’ve been through x

Thank you so much, currently loving snuggles whilst being nap trapped. X