Bus 9 - Donkey Cart departing soon, all aboard with ivf, pcos, endo, sub/unexplained fertility jump on

[Marvellouslymadmum]

New thread 😊😊

Hi @thislittlebird I haven't been on this thread in a long time but I sometimes check to see if there are any updates. Just wanted to say you are not alone and I feel your pain.
I am currently in the tww from transfer no4. Not feeling hopeful as found out last month I actually have stage 4 endo and it's probably making me infertile. On top of my DH severe sperm issues that mean he is basically infertile 🫠
So when this inevitably fails I will be booking surgery (privately as I no longer trust the NHS).
Multiple rounds of failed IVF is just so devastating and in a special league of its own when it comes to infertility I feel. I feel like I haven't lived in over 3 years now, I'm just on pause and it's had such an impact on mine and DH mental health. We have now been doing IVF for 2 solid years.
So sending lots of love ❤️

@Narwhal88 hey, I wondered how you were getting on the other day, I think I saw you post somewhere.

I’m in the tww for transfer 4&5 (although 5 is a pretty pointless transfer), so we’re both at the same stage. It doesn’t feel better the more you do it, that’s for sure. What day are you? I have to test Monday but I am 99% sure it’s failed.

I’m sorry you have endo to deal with too, how did you find out? I should probably get some test for it. My current best guess is immune issues are my problem, the only time I had implantation was on prednisolone but I don’t know for sure.

It’s honestly nice to hear from you 💜. I feel like we’re such a tiny, dwindling minority of people who ivf isn’t working for and it’s such an incredibly lonely place to be. You’re right, it is a league of its own. I don’t think people get it, the places to go, the options for help, the resources are all dwindling along with your mental health and finances. I’ve spent a lot of today just sobbing because I can’t see this working in the end and I don’t understand why it’s happening to me.

Me and DH are so isolated after over 3 years of infertility. We mostly don’t see anyone, don’t do nice things because all our money goes on this. I want us to have a really nice holiday for my 40th slash long overdue honeymoon but I don’t know if we can afford it, it’s so very depressing.

I'm 4dp5dt so just over a week to go. This is our last NHS transfer so we then need to go private but I would rather that so I can do extra things like the ERA.
I went to my GP in May 2021 to get tested for endo, had a consultant appt Aug 2021 who told me it wasn't severe endo but he would put me on the waiting list for a lap. I decided to get a private consult with the endo clinic in London, they use one of the top radiographers in the world and he was just amazing. He could tell exactly how bad it is and where it is. Luckily it's not on my ovaries but it's infiltrated my bowel. The inflammation it causes can really affect implantation apparently.

I also had my Microbiome tested and tested positive for some nasty bacteria so got antibiotics.

We are the same as you, haven't done much at all in 3 years. Constantly worried about catching covid and a cycle being cancelled or it affecting embryo quality so I don't go many places. Haven't been abroad since August 2019 for our honeymoon.
We are lucky that we have savings but I'm just so annoyed and frustrated that we have to spend it all on something everyone else gets for free and it may not even work.
I'm terrified of it never working, I still can't really think about it too much as it's all I've ever wanted since I was a little girl. I don't think adoption is for us but I think we would consider the possibly of donor sperm and surrogacy if it came to that.

When is your birthday? I hope you can get away somewhere nice even if it's not far away or not for too long.

@Narwhal88 were all your transfers from one egg collection cycle? I only got one collection cycle on the nhs, I think you'd think it was good if it worked but when it doesn't you have to ask why they don't "believe in" any extras. A consultant we had a nhs follow up basically told me it's all nonsense, none of the extras work, and I'm sorry but i don't believe that. We've had one private cycle now and I wish it had gone better but here we are.

The endo clinic, is this what it's called? Did they do a lap? I might have the wrong end of the stick, because that's the only procedure I thought they used to diagnose but maybe not.

I had antibiotics before this cycle for my microbiome, I'm assuming I might need them every time.

I think dh catching covid and a wisdom tooth extraction followed by infection and fever might have been what caused this second cycle to go so horribly. You're right to avoid it, my husband needs another tooth out and it's stressing me out, I need him to do it in January or wait, we need a good few months of recovery for his sperm.

We did actually go abroad this summer, we went to Cyprus for a nice break for a week. Feels like a long time ago now. My birthday is May. Our next cycle is paid for, we'll save until we do the next one in the spring (maybe?) and then hopefully have enough saved again for more because I think we'll need it. I thought 4 transfers would be enough for us, but it wasn't to be, now I'm looking at 4 or more egg collections which is depressing.

I don't want to adopt, but I can see myself thinking about it more as time goes on. I want our baby, one that's both of ours, I don't even know if a donor would work since we apparently both have issues. I've had this vision of one kid, a girl, for a long while. I feel like I need to get that out of my system, forget about it and move on, it haunts me tbh because I thought I'd have one child, never expected or wanted more, but maybe I won't have that.

My first 3 transfers were from 1 egg collection. I had a 2nd collection in June, my CCG funded up to 2 collections and 4 transfers. I got 28 eggs on the 2nd collection but only 4 blasts. This transfer was a top quality hatching blast. I'm just concerned my body won't let it implant. My DH has high DNA frag but we lowered it before the 2nd collection and had been on a lot of supplements and diet changes as well.
I agree for most people they don't need the extras but I do think they really help those people with complex needs. Especially the immune protocols, ERA etc. I'm not sure whether to get tested for NK cells or not. It's expensive isn't it. I don't see why they can't just put us on prednisone, it's a very cheap drug.

www.endometriosisclinic.co.uk/mr-peter-barton-smith

This is where I went. So generally endo can only be diagnosed with a lap, that is because most radiographers are not specialist enough to detect it but it can be done by very highly skilled ones. Dr Barton Smith said that in all the surgeries he has done, the radiographer he uses has never been wrong. During the scan he showed me all the tiny holes made by my egg collections in the ovaries!

My DH caught covid in September during my FET (cancelled cycle due to thin lining). He has also had 2 teeth removed last month. It will be a while till we need another collection though luckily.

Letting go of what you thought your life would be is very hard. I wanted 3 kids originally. Now I would love 1 or 2 if possible.

@thislittlebird it's totally unfair, this whole damn journey is the most unfair, horrible nightmare!!

@Narwhal88 it's good to hear from you, though I'm sorry things aren't going well for you!
I am curious about your endo diagnosis too as I was told it can only be properly diagnosed by a lap and so far my consultant is reluctant to give me one! I have adenomyosis and suspected endo, I may have to look into this endo clinic!!

@Narwhal88 I had three from my first EC too. Thought we'd get similar on the second and it went to absolute shit. We're going to have to work on DH's sperm, maybe re-test it a few times in the coming months. I think I'm going to ask about having a spare sample on ice too, in case he gets covid or whatever again. We're going to hit the supplements hard in the new year and probably do EC number 3 in the Spring, all being well.

yeah, most people are fine, but when you have had multiple failures it's weird to me that they're not open to it all. I thought NK cells was expensive and invasive but @OrangeBengal here said she had it as a blood test so I want to enquire about that. They could totally just put me on pred with my medical history but they're being annoying about it, I'm insisting on it next time. I get it's not without side effects but it doesn't need to be a high dose.

Hmm that's interesting. I'll have to look into that clinic too. Do they recommend treatment for it?

I didn't even think about the teeth removal as an issue, I'm kicking myself now in case that infection is what cost us £5,400 and no embryos, basically.

@Marvellouslymadmum yeah, i'm exhausted and just done with it all right now. Dreading the test.

@thislittlebird totally with you, I always dreads testing because I hate that stark white line so much!

I just did it to get it out of the way. I knew it would be stark white @Marvellouslymadmum so in one way it’s the easiest test I’ve done.

I’ve never been so devastated though, not over this BFN exactly, I always knew it was unlikely, but the continued failure. The inability to do what other people do even with assisted conception technology. The lack of answers to why we can’t improve his motility. The idea of facing a future without kids, without a legacy, anyone to care about you when you’re old, without a family of mine and dh’s. I don’t know what to do next. I know we have a couple more cycles but it’s feeling increasingly pointless and like just going through the motions until we exhaust our finances and say we can’t do more/afford more and resign ourselves to childlessness.

I’m sorry @thislittlebird. I know it might not feel like now but to date our pattern has been pretty similar, it took almost 3 years, 5 rounds and 4 transfers to work for me. I can’t pinpoint what worked but the combination of predisolone, clexane, aspirin, pre- and post- transfer acupuncture on the day (I know this is expensive, but the sessions over this single day (£110) rather than the sessions beforehand probably had the most impact) and unprotected sex the night before definitely didn’t hurt. If you do all of this after giving the supplements time to work and PGS testing (maybe do a freeze-all) you’ll be in the strongest position possible. If you think might endo might be an issue and can get this checked out, look into this too. You’re right to bank sperm also. Apologies if I’m not telling you anything you don’t know. I’m so sorry again.

@thislittlebird I do find them easier when I know it's going to be white but it's still a little disappointing! I'm sorry yours is negative, I can only imagine what you're feeling right now.
Have you thought about going with a donor egg? I know it's not ideal but the fact that you would be carrying it means you'd still be a good part of the baby. That baby wouldn't be without the person growing it and epigenetics pass from the mother to the baby meaning they do have some of you in them, it just means that it's taken 3 to make your baby rather than 2! Or of course another option may be surrogacy. I'd say maybe try and speak to a specialist and get to the bottom of why it's not happening that way you know if either of these are options.

@Marvellouslymadmum I have considered donor eggs, but unfortunately I don’t think it’s an egg only issue for us. And I can’t see us using a surrogate, for various reasons, costs and ethics for a start. Our issue is both me and him, and I think it would be too big a gamble to get donor eggs and hope his sperm works. We could get donor sperm and then we have to hope it works with my eggs. It’s not clear cut for us and if I’m being really honest I don’t think the experts would be able to give a solid answer, if I’ve learned anything the past year it’s that they don’t really know a lot about all of the whys of infertility.

It’s hard because I really want a child of mine to be related to me because I don’t have much of a family to speak of. But at the same time, his family is who we’d spend time with so maybe it’s best they’d be related to him. Either way, I think we’re most likely to keep trying with our own until we can’t take any more of this, or can’t afford more.

@OrangeBengal I do want to restart acupuncture, my acupuncturist said to me the important thing is doing it regularly so I’ll probably start going again in the new year. But will need to limit it to once a month probably.

When you say rounds, do you mean 5 egg collections? We’ll definitely look into endo, work on his sperm solidly for 3 months at least and then re-test.

Keen to do IMSI and PGT-A, but I just can’t see us having enough embryos after this cycle. We’ll have to see what happens. I’m not doing another cycle without pred, I’m going to have to push hard for it or hope the NK cells test they get me to do comes back high. I don’t want it to be high but I would bet it is.

Pred, IMSI and PGS seem like a good idea as well as taking up acupuncture again @thislittlebird. We did one egg collection (mild IVF as we wanted quality over quantity, so low doses), 5 rounds of drugs for 4 transfers (one transfer was cancelled a couple of days prior to transfer date, but I still count it as I’d been mentally preparing and putting crap into my body for weeks).

@thislittlebird I'm so sorry. Even when you are pretty sure it's going to be negative it's still devastating.
It sounds like you just had a really bad round but that doesn't mean next time would be the same. I think it's all trial and error to find what you need to work for you. Unfortunately that trial is an embryo. Your baby. And it takes so long.

We are the same in that we both have issues so it's complicated isn't it. I never ever thought I would need a surrogate but now I'm thinking maybe my body just can't do this. Our friend has offered as she is done with having kids but loved being pregnant (oh to be that person!). I still won't consider this until we have tried everything though.
We had already started thinking about donor sperm due to how bad my DH sperm is, but he still doesn't feel comfortable with it at the moment. He would only do it for me and I feel like then maybe he would resent me and the kid. So we also won't do that unless maybe it's our only option.
How far do you go though?

So the endo appt cost around £800 but was worth it to get answers. He recommended surgery but didn't put any pressure on at all. The endo could also start to affect my kidneys, bladder and bowel so I need it done regardless.
Do you have symptoms of endo?

I also did acupuncture for this round, started a month before, did a session the day before transfer and 3 days post. Didn't do on the day as it is a 2hr drive to the clinic and would then have to drive into the city for it which just adds more stress. So he didn't recommend it.
Added clexane as well just in case.
I want to add prednisone too because it's not going to hurt is it! So I feel like we may as well try it. I feel like this will be a battle though like you say.

@OrangeBengal ah, I see. I really thought we might only have to have one collection but how wrong I was. When you say mild, what doses are we talking and what’s your AMH? I was considering “mild” in the past but am unclear how different it is from what I’ve done already, which is fairly low doses and short protocol.

@Narwhal88 Thanks. It’s a good question, I don’t really have a line drawn in the sand. I thought it might be 3 cycles but based on our second there’s no way that’s a fair shot. All our siblings and friends are older than us and no one would offer, or could offer, so we don’t really have a relationship with someone we know who could help. Just like your dh I don’t think mine wants to use donor but would if I pushed it. But I can’t say for sure if it would work, donor feels like false economy when you both have issues. It’s an expensive dice roll.

so was the £800 for the scan and consultation? I have zero symptoms, I don’t even get period pains or anything, so that’s why it’s never been something I’ve looked into. Did you have symptoms?

It’s like a cumulative devastation this time. I knew these embryos hadn’t worked. The one time I had implantation I had different symptoms, I generally don’t get many PMS symptoms at all (except migraine around the time AF starts) and that’s what I had this month. Just some progesterone cramps and headaches, nothing like the chemical when it briefly worked.

The time it all takes is possibly the hardest part. The number of people who have success and then suddenly have a baby and you’re just at square one, do not pass go. I’ll be 40 in May and it feels like my chance of a family is speeding down a hill away from me. I wish I could relax about getting older but it’s all tied up with this, it’s horrible.

I don’t feel like my consultant took my pred story seriously enough. It’s the only time I had implantation, it doesn’t feel like a coincidence to me. I’ll do his stupid nk cells test in the new year but I’m worried it’ll come back low and they won’t agree to me using it.

My AMH was 36.5 back in Feb 2021 @thislittlebird, egg collection in Jan 2022. Consultant said he could have got around 30 eggs, but we settled for 10-12 and he was spot on as we got 11. I found my protocol (www.dropbox.com/s/zs9j7eixi2e48wz/Melissa%20M%20PM.PNG?dl=0), which from memory we extended for an additional 3 days.

Oh, I should probably add, 6 were used in ICSI, 5 in IVF, 3 in the IVF batch were immature, 1 was destroyed by the ICSI process and the rest fertilised, with two coming back aneuploid (after retesting one embryo), the embryo for my fresh transfer wasn’t tested.

@OrangeBengal thank you. What was the dexamethasone for? I had similar AMH in 2021 but I doubt it’s that now based on my eggs collected. 15 and then 10, we didn’t aim for only a few but I wasn’t on high doses. If you used IVF and ICSI, I assume you don’t have male factor? Sorry, I’ve forgotten. I would love to try ivf and icsi at once but I don’t think they would let us.

Not sure entirely what the dexamethasone was for, just something my consultant liked to use, maybe for quality @thislittlebird. SA tests said my DH had excellent sperm, but as it wasn’t working pre IVF he did a frag test that came back high, however we weren’t sure as it was taken after a boozy holiday, so I fought to do 1:1 (prep for this was daily ejaculation), the clinic did say the sample on the day wasn’t a good one though, but the success for euploid was higher in the IVF batch and my baby now is from that batch, so who knows. They think my eggs made up for sperm issues though. I think ubiquinol helped me sustain high quality eggs and I’ve heard good things about DHEA too.

@thislittlebird yes I have endo symptoms - bad period pain since they started, pain on emptying bowels during periods, painful sex, lethargic etc. Since you don't have symptoms it is likely you don't have endo, but you never know. It would be hard to get referred on the nhs without symptoms I think. Something to rule out I guess if you have tested everything else.

@OrangeBengal @thislittlebird dexamethasone is a steroid. So could be routine for your doctor in case of immune issues?

Umm, not sure that’s what he was using it for, I think it’d he’d just had luck with it (the nurses described it as one of ‘his specials’), either way he delivered what he said he would, I did wake up every morning at 2/3am whilst on it though!

I’m sorry to hear about your suffering @Narwhal88 and am glad your endo has now been recognised and can be treated. One of the many things we’re crap at identifying and treating re ‘women’s issues’. I had fibroids, different but similarly ignored.

I should say have actually, they’ve come back.

@thislittlebird it's so hard isn't it to know what to do and which way to gamble your money!! I agree that they don't seem to know an awful lot, it's sad.

@Narwhal88 I have all the endo symptoms and an adenomyosis diagnosis but they still won't to a lap for me on nhs but I'm m still fighting for it as I think they're about £6000 privately!

Hello,

Jumping on the donkey cart! I was on another thread before, but took a bit of a break from mumsnet.

Been TTC since July 2019. Never had a BFP.

I was eventually referred to fertility clinic January this year, after having several repeat bloods for subclinical hypothyroid and high prolactin. GP had contacted endocrinologist before referral to see if I needed a referral to them which they decided I didn’t because based on the one day 21 bloods I’ve had, and regular periods, they assume I’m ovulating regularly. I do get EWCM/positive LH tests monthly, but I’m not 100% sure I do ovulate every month now.

I had my first fertility appointment at the clinic in March. Scan/AMH bloods and HSG were arranged then.

Scan was fine, but they couldn’t locate my right ovary on the internal scan. HSG was fine, no blockages. AMH 13.5 so not particularly high. I’m 34, 35 next month. OH SA is fine. Diagnosis is unexplained. Had further thyroid and prolactin bloods tests.

Bloods showed that my thyroid had gone up to 6.45 and prolactin was about 940. Was referred for IVF in May.

Went to GP practically begging for thyroid meds as consultant at clinic had said it needs to go down. This was a really frustrating period for me, as it felt like no one was actually taking any initiative to get this under control. GP agreed to thyroxine and because my prolactin was still high, referred me to endocrinologist (this could have been sorted months before).

Had an appointment with IVF consultant and a AFC in June. Scan showed nothing wrong with uterus. My left ovary is normal, had about 11 follicules. Right ovary is small, only had one. Basically have a dud right ovary. Consultant said that majority of eggs would come from left, but hopefully right one will respond to get some eggs, maybe 🤔

They refused to start any treatment until my thyroid levels were normal and endocrinologist basically signs me off as ok for IVF. Cue the waiting.

Bloods redone in July to check how thyroxine is working, thyroid levels close to normal (2.78) and prolactin massively down (245-ish). Still needed ok from endocrinologist so needed to wait for appointment scheduled for beginning of August. Was cancelled and rescheduled for end of August. Basically got the ok to go ahead. IVF clinic needed paperwork to confirm. Didn’t get that until end of September.

Consents were completed in October. Protocol came through November.

I’m finally at a point where we’re going to start. I’m long protocol, start down regulation with buserelin on the 9th.

Apprehensive about the whole thing to be honest. It’s taken so long to get here, and I’m basically working with one ovary. Funnily enough, I’m still unexplained. Not sure I actually ovulate from my right ovary, that’s the side I always feel ‘ovulation pain’ so I reckon I gear up for it but it just doesn’t happen. I distinctly remember when I had day 21 bloods I felt ovulation on the left. I only feel it on the left about 2 times a year.

Sorry for the essay!!