Next steps…

[Booda21]

Back again, my 10th transfer failed of a euploid embryo. I tried prednisolone 20mg this time but it didn’t help. I had a particularly stressful week and I don’t think that helped anything whilst dealing with grief during my transfer as I honestly barely slept at all in the run up or the first few days. A truly awful time. My progesterone was also only 27 at transfer, my clinic don’t think this would cause a problem. But I’m not so convinced.

So now I’m out of all my NHS funding. I’m going to go ahead and have one final go and do a private round. I am wondering if anyone has any ideas of hysteroscopy helping diagnose anything? I’m 36, nearly 37. Have been try for over 8 years. Had 10 transfers of 11 embryos. 2 have implanted but not sure if just chemical or early miscarriage and differing opinions on this. I have had ERA, EMMA, ALICE. Had Karyotype done for both me and my partner. I had an Amh of 11.4 earlier in May. We have icsi due to my partners morphology. Had a care unity test, had thrombophilia blood panel, had a full thyroid panel. All came back normal. I have endometriosis and have had my right tube removed.

The only things I think that I haven’t been tested on are NK cells, and I have never had a hysteroscopy. I’ve had consultations with 3 clinics, and all suggested to have a hysteroscopy but after egg collection. My question is can a hysteroscopy tell me that my womb is unable to carry a child? So is it worth having this done prior to egg collection? So I’m not wasting my time. Or can this help to sort any problems within the womb and timing close to transfer can help?

The clinics I have spoken to are CRGH, ARGC and the instituto bernabeu in Alicante. I know we can’t discuss clinics over chats but if anyone has any experience with any of these clinics please can you let me know via DM. Positive and negative. I’m feeling so completely deflated. I just can’t help but feel I am completely flogging a dead horse here. I’m embarrassed and ashamed to be so far in with nothing other than a battered mind to represent what I’ve been through. I feel like I do so well to just get on with life but this is just always hanging over me. I feel I will always carry this heavy sad and empty feeling inside.

Is there anyone out there who did find success after so many attempts? Or is it usually those of us who keep going that ultimately have to accept we are never going to be mums? I am also wanting to hear that side of things. Totally not wanting to sugar coat the reality of what I’m facing. The idea of the disruption to life, to my job, to my finances and still having nothing to show is a very real potential that I have to face head on.

If you’ve read all of my ramblings I can only thank you. And I hope that the world of infertility is being much kinder to most others on this awful ride 🤍

[HedgehogMad]

I'm so sorry. It's all so heartbreaking and I understand a lot of what you are describing in terms of emotional load. I'm assuming you've had excision surgery for your endometriosis?

You're probably aware of my history with recurrent implantation failure similar to you. I went to IB in Madrid for a hysteroscopy in the end (way cheaper than doing it privately in the UK!) it didn't show anything but psychologically I felt it helped to know that I'd done everything I could to find an answer.

We spoke to several specialists in RIF who all said that if you keep going you'll eventually succeed but I couldn't keep on going indefinitely, as you say it feels like you're flogging a dead horse and the emotional, physical and financial toll is significant. It's not for everyone but our clinic suggested surrogacy to us, my incredible friend offered and we had success on our first try. We are now 19 weeks pregnant. Surrogacy is another ballgame entirely but I feel at peace knowing that we tried everything. Sending you so much love right now, it's so unfair that having a baby is so hard for some of us xxx

[Booda21 in reply to HedgehogMad]

Thanks so much hedgehog. Yes I’ve had 3 surgeries. I am so glad you found someone to be a surrogate. It’s a complete and utter minefield isn’t it if you don’t know someone who can help out from what I can gather after reading online. Not long now until you welcome your little one!

Would you mind sending me a DM with the specialists you spoke to? I just want to cover all bases. Thanks so much for taking the time to reply to me and congrats again xxx

[HedgehogMad in reply to Booda21]

Sent you a DM lovely x

[Grey792 in reply to HedgehogMad]

Oh so the surrogacy is indeed the help. Then the theories about the number games is looking like I felt after my 5-7th transfer..running against a wall expecting a different result. My friend also offered her help. She lives in Ireland. My embryos are in Germany..they will never accept her taking/carring one for me. Maybe I should look at trying to export it to UK/or Ireland. The did itself is already hard enough. Thinking how to realize this logistically is another burden.

Thank you for sharing. I'm too very invested in this problem and can't hear enough similar stories.

[Endofitall]

I’m sorry. So sorry. It’s just awful. I am sorry you’re dealing with other things and grief alongside all this too. Do you have a good support network?

You mention male factor with morphology here - how fully has this been addressed vs just going for ICSI - have you seen a reproductive urologist?

Progesterone does seem on the low side - what are you usually prescribed? Was your endo excised?

Hysteroscopy was done for me due to persistent thin lining and was normal but felt good to know it was okay. Have you seen Prof Brosens at Warwick uni’s recurrent implantation failure clinic? It’s self funded but money goes back to research and is uni/NHS/Tommy’s affiliated.

Take care of yourself and put yourself first 💜

[Booda21 in reply to Endofitall]

Thanks so much for replying. No I had contacted prof brosens but then decided after speaking to some people it may not be worth it. Would you recommend it? I think I will definitely go ahead with a hysteroscopy. I just don’t really understand if it’s best to do prior to an egg collection. The whole thing just overwhelms you doesn’t it. So many potential things to look in to.

No we haven’t really looked in to that. The clinics I spoke to said to do dna fragmentation test but we have done the oxidative stress tests before and it said that he had slight elevated levels so he took proxceed for 3 months as advised by our clinic and his levels had then gone so low it couldn’t even be measure so actually ended up worse. So a bit dubious about some of these supplements after that. Would you recommend delving deeper in to that side? A friend of mine recommend Jonathan Ramsey to go and get seen by. Maybe we should go down that route too. I just want to make sure we have looked in to as much as we can. I can’t let this consume much more of my life. I’m nearly a decade in and I need to know I’ve done all I can do before closing the book.

Progesterone I just had cyclogest 3x daily. They added pinion from day of transfer but never tested again and said there could be both in g to improve it. Earlier this year it was 48 and 41 so not so low. They wanted it over 45.

Yes I’ve had had 3 surgeries for my endo. All in the space of 18 months. But it seems every time they go back in everything is just stuck back together again so I’m sure now 11 months since my last surgery it is all back together again. Full of adhesions.

Support, I struggle with, as I find people don’t understand. Even my partner is pretty useless at times. He isn’t as involved as I am which also frustrates me, I feel like he leaves it all to me and I feel this is definitely our journey; not just mine. But I am much more of a doer than he is anyway. But that does leave me very overwhelmed as I said, there’s just so many bases to cover. And I’m really aware of reaching 37 and knowing this is where it all starts going down hill according to the statistics. Which is super scary when I have had zero luck since being 28 🙈. Again thank you so much for replying. And I hope everything is going ok on your own journey wherever you may be up to xxx

[Endofitall in reply to Booda21]

You’ve been through so much, I’m sorry your support network and partner are lacking there 😔. I think it’s quite normal for them to leave it to us and not be as involved but it’s still so important to give that emotional and discussing options etc support.

So we looked at figures and really couldn’t afford to see a reproductive immunologist (we’ve already paid for all our IVF with very very pricey meds doses and 5 egg collections so far, as my AMH was too low from endo damage even in early 30s) so seeing Prof Brosens was a good way to get the endometrial biopsy for NK cells done most cost effectively for us. He was just really positive and a good overview - and knowing he had no financial vested interest too in what he suggested etc.

We’ve always taken that attitude that before we stop we need to feel we’ve covered every base we ethically and financially can. I think given there is MFI here and you partner’s age too it would make sense to ensure that is fully explored. It takes both of you. And they can’t just keep looking at you.

I’ve had lubion and the pessaries three times a day - I think many clinics dealing with endo patients do prefer we have higher levels going in. I guess it keeps the endo as quiet as possible.

I’m sorry you’ve had to have so much done and still it keeps coming back. I worry mine is now 11-12 months on and especially having two stim cycles recently getting some of the symptoms back. I know that feeling about age creeping as you keep on at this. You’re still young in IVF terms though and it sounds like you are still getting good numbers in your stim so that’s positive.

I guess if you’re going to do FETs only then getting egg collection done then hysteroscopy after in prep for transfers sense?

Wishing you lots of luck and you know we are all here for support when you need ❤️

[Grey792]

Hi, im with you there with a very similar story. 11 embryos transfered. First was early miscarriage, second was ectopic and after never again saw a positive test. Done the endometrial nk which came back high. Tried the intra lipid infusions for two transfers but it did nothing. I had 2 histeroscopies. I think it helps knowing what's in there. Nothing came out of them for me but it's done.

All these good looking test results ( apart from some endometriosis and high nk) and nothing. No baby after 5 years..3 of them IVF years. So many transfers meant a lot on my body and mind. All that beautiful hope and naivity, they all ended up again and again into sorrows. No idea how long I can do this but I don't have a switch button to give up and I also have no more life in me to continue like this.

We transfered now two embryos..first time ever a double and I'm in the tww...if I test tomorrow and it's negative then it's for sure negative but there is that horrible shimmer of hope lingering ..and I find that's the worse... Today I have huge mood swings ranging from being naively hopeful to being devastated by the thought of never ever achieving my baby dream.

I feel the way you described your feelings is so poetic and appropriate. I'm not sure I have energy to even try to express in words how this feels. And talking to anyone I know in this world is far from helping. Nobody understands this. People only want to try to think positive about it and relax the tension of how this grey bulb feels inside. I'm not running around talking how devastated I feel, but I run around feeling empty. So much energy in this life projects ironically sucked the life off of. Frustrated...omg I'm so frustrated and angry about this sometimes. I don't even want to heal, I want to stay angry sometimes ..it's so hard. Getting pregnant is mostly so easy... IVF is hard....and we../ I have it harder than "it"..?

I whish you from the heart 💜 all the best. See you around here and hopefully with good news soon. I also need some success stories that come from this side of the struggle.

Hugs

[Booda21 in reply to Grey792]

So sorry you’ve had an equally horrible and long journey. I really hope you’ve had some positive news today Grey. Thinking of you. You deserve to finally catch a break! Sending lots of love xx

[Grey792 in reply to Booda21]

Thank you, lovely words. Unfortunately I tested negative. There goes 🥚 🥚 #12 and #13. My sadness and dispair comes and goes in waves. Quiet lonely places like the night are horrible. I'm not going for double transfers again. I just hoped the myth they might help each other out may hold some truth...but not. It's so sad. Tomorrow is 9dp5t I think then it's officially over. It's so bad when there is false hope still lingering.This time I had a decapeptyl down regulation protocol. Therefore my cycle is fully artificial. Besides this, I took prednisolone and aspirin. No intralipids this time (unlike transfer 10 and 11). I hoped the nk numbers can reduce with this.

Interesting fact, whenever I'm on prednisolone I sleep better, my smart watch registers such low stress levels during sleep then..I hoped this little steroids are also going to help with 🐥. But maybe the stress levels get low because I'm happy to look forward to the new embryo..I am not sure

.. oh..a total of 12 transfers....that's a year worth of acting pregnant because "just in case"...how cruel ...

For the next one I'd like to try the immunoglobulin infusions..if a doctor agrees. I'll look for a doctor.

Then I read now too about this hydroxichloroquine +Prednisolone protocol..maybe I should try that too. Just need to find a doctor who agrees.

I'm so tired.

Thank you for being there.

[Poop84]

hi I have used one of the clinics you mentioned above to era, Emma and Alice tests. I assumed these all include the nk blood tests results mines did with Clinic C.

If not done then I'd highly recommend you do this. Some people have such overactive nk cells in their blood so need more steroids or immune meds. Did you have any intralipid or ivig ? If not it's worthy a try before using any euploid embyros as they're precious.

[Booda21 in reply to Poop84]

Thanks so much for replying. No I didn’t have ivig or intralipids. My consultant at my last clinic reluctantly agreed to give the steroid a go as I’ve been asking for ages. But I still didn’t have success even with my euploid embryo. I’m definitely going to have the extra tests to check if I have high NK cells. And hopefully the hysteroscopy will give me a better environment prior to transfer. Who knows 🤞. Just sick of the length of time I’ve been at it for now. Xx

[Poop84 in reply to Booda21]

highly recommend the NK blood tests- you will need IVIG with steroids if so.

I hope that's the only missing part now for you and you have some clarity to them cycle again.

Fingers crossed and here if you want to ask anything.

[Anisha29]

Agree with Poop84. If you are producing high levels of NK cells/Cytokines, euploid embryo are likely not not stick or miscarry later. It makes the body a hostile environment but can be minimised by intralipid/IVIG or immune suppressants.

I'd be surprised if CRGH or ARGC haven't tested for that before. I've been a patient at both.

Maybe also enquire on a dummy embryo transfer.i think CRGH offer that.

[HelzBelzUK]

Reading your story sounds so similar to ours x

We’re now in Athens for treatment and I’m having my NK cells tested prior to our next cycle. We’re doing pgta this time so i’m going to ask him about a hysteroscopy prior to transfer (fingers crossed for a euploid or 2 🙏🏽)

It’s much cheaper in Athens.., 1500 euros. Even though you have to pay flights and accomodation it’s much cheaper than when I enquired with the private hospital Spire x

I would also say your progesterone was on the low side. Mine dropped to 34 a few days after transfer and my pessaries were increased from 3 a day to 6.

I would definitely say a hysteroscopy and biopsy is a good start. I also done down regulation with prostap prior to my transfer to supress my endo. Would your clinic consider something like hydroxychloroquine?

[Booda21 in reply to HelzBelzUK]

So sorry to hear it’s been a rubbish and long journey for you too.

I’m not currently under a clinic. I’ve just been with an NHS one and now trying to decide between the 3 I’ve been to consultations for. They all seemed good and not much difference so it’s kind of making it harder!

Glad you’ve found a clinic to give it another go with. Hope you have success there 🤞🤞. And get some euploids!

I’ve not heard of hydroxychloroquine, what is it? I will mention anything though if it’s going to help 😂. Desperation point now. Xxx

[HelzBelzUK in reply to Booda21]

It’s a medication that treats inflammatory disorders such as lupus, rheumatoid arthritis and was used a lot in covid x

My consultant prescribes it a lot especially for patients with raised nk cells and raised cytokines. It’s worth asking the team once you decide on a clinic.. they can only say no.

Wishing you lots of luck moving forward xx

[Doodlebug23]

Took me transferring 10 embryos to get my BFP. I went with Instituto Bernabeu Alicante. Only way to describe them for me is fantastic. Not sure if I can offer any help but feel free to pm me x

[Booda21 in reply to Doodlebug23]

Hope you’re enjoying your newborn doodlebug! And that’s for the recommendation on the clinic. It’s good to know you had a good experience xx

[Grey792 in reply to Doodlebug23]

Hello, congrats to you and your little baby. Did the clinic propose some interesting protocol? Was it something you changed ?

[Doodlebug23 in reply to Grey792]

They suggested Bondi protocol which is clexane and prednisolone. I also had HCG wash and uterine contractions scan but had those for previous transfers too. Transfer 6 of embryos 7&8 was medicated but transfer 7 of embryos 9&10 was modified natural - which was my BFP.

[Grey792 in reply to Doodlebug23]

I see, so was that your first prednisolone cycle? Was it 20 mg? From day 1 of cycle to when ? Sorry if I'm bothering with my follow up questions. My clinic pit me on very low prednisolone and then the intralipids at some point. Then now I only did the prednisolone one. I am not sure it works for me by itself but I'm happy to see if something can be improved here. Thank you!

[Spicycurry]

I have experience of one of the clinics you mentioned.

[Spicycurry]

I went to CRGH after being let down by nhs

[Booda21 in reply to Spicycurry]

Thanks so much. Hope you’ve found them to be a good clinic xx

[Chel91]

I had success with a double transfer of embryo #11 + 12. I was younger and I also had a euploid fail, so I was finally convinced it wasn't likely to be an egg / embryo quality issue, which is what they kept telling me.

This inspired me to do every other thing possible with my body to make it receptive, which was a long road. I really felt like I was nearly at the end of the road. Hysteroscopy would be a good thing to scratch off the list, but it wasn't it for me. Best to do this after egg collection yes. Did your surgeon remove every single bit of endometriosis? If it's in your bowel they can't leave it, for example, it needs to be totally removed by someone who is experienced enough to do all parts. Have you had a look at the Nancy Nook's fb group and surgeon list, and looked into who could handle the surgey you need? It would definitely worth traveling to get the right specialist, this is what I did and I feel it made a big impact.

With endo it's better to have super high progesterone as it makes us progesterone resistant, so I would definitely add injectable progesterone. It helps calm the immune system. I saw a Reproductive Immunologist who added blood thinners, prednisone, IVIG, etc. Estradiol can also be low and needs to be checked. Also just because you have done one blood clotting panel doesn't necessarily mean you don't have issues with that, it can come and go, and early pregnancy can trigger it. It's best to really check and double check things. Obviously some of us are in the 1% of the 1% and I think it just takes a lot more work, but it can be done for sure xx

[Booda21 in reply to Chel91]

Can you please DM details of the reproductive immunologist you saw? And who you saw if you travelled for your surgery? I am definitely up for trying anything at this point. As I’m the same as you, I don’t believe it’s an embryo issue. I think it’s with me. As I’ve been off any form of contraceptive for 9 years so feel my endometriosis has been able to grow and spread in this time. Coupled with lots of artificial hormones over the years. I do have DIE all through my bowel and an obliterated pouch of Douglas. Which even though I saw a BSGE surgeon all 3 times they said it’s best to leave that as can cause damage and it isn’t bothering me. But maybe it is?! God there’s so many things you have to do constantly isn’t there. Just one thing after another. But I feel like 2025 has to be the year I throw everything in to it as I feel I have put work first over and over as we own our own business. But if I have to take a few months out I’m going to have to. I can’t not give it everything for the outcome I really hope for! Thanks for giving me some hope 🙏🏻 xx