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

[Marvellouslymadmum]

New thread 😊😊

@ShirleyValentineManc fingers crossed for you it’s stopped. I don’t understand why they won’t see you, mine saw my last time I got a BFP and started bleeding. Did they give you extra progesterone this time?

you could also do a couple of private HCG tests if you wanted to?

@thislittlebird can we? I have vitality at work and know they won't touch IVF with a barge pole

@ShirleyValentineManc yeah, but you'd have to pay, private insurers won't cover it, but lots of places offer them for £30-40 pound ish. You'd need two a couple of days apart.

That's great, I'll start googling. PS they just told me to keep going with my meds, no upagge in dosage

@ShirleyValentineManc medichecks do lots of bloods via post/fingerprint sample, think they do progesterone. I think a doubling every 2-3 days is roughly the aim and over 100 at transfer but not many places test this unless you pay extra and ask or are under immunology as well x

Had a lovely trip to emergency gyna tonight. Bleeding still occuring. Examination and tests done, they don't seem too worried. It's so annoying that you end up eventually getting seen but end up going through days of stress. They should just bloody see us!!! I hope everyone is ok? What's going on in your worlds?

@ShirleyValentineManc aw no! I think although worrying, some people can bleed initially and it not be a problem (same thing happened to a colleague and now had her baby). Did they check hcg levels? X

HCG levels 18k!
Having an IVF pregnancy feels very different for me, to a "natural". I'm just waiting for it to fail, the odds aren't great. So we'll just see how we go.
After 4 years I might leave this group, doesn't feel real

@ShirleyValentineManc that's great number but I would feel exactly the same, I know I'm going to have just as many mental health issues if it works for us and worrying. Only advice I can offer is take each day at a time and not focus too far ahead (I really struggle with that one!) If coming off here helps, by all means do what you need to do. Sometimes hearing bits on here can make us more anxious x

@kerrym87 really feels like a limbo stage. This group has been a life line for me since 2020. I'm not ready to join some "6 weeks pregnant" group just yet, especially if it ever means leaving it.
I'd definitely want to find a "pregnant after IVF" group. Think they'd be much more understanding of my anxieties.
Today, we've signed up for Tommy's research, hoping we can give back to future TTCs!!!

I also know how difficult it is for others in this group to read that there's pregnancies happening. Trust me I've been reading this group for 3, going on 4 years. Seeing people leave and there still being around 4-5 of us on here.
If you're reading this, please take comfort in the news that it is possible. The waiting is unbearable and the pregnancy news isn't the fairy tale ending, it's still very worrying and can include even more transvaginals (fucking sick of them)!

If anyone has any questions on IVF, OHSS, frozen transfers, please reach out. Happy to share experience

@ShirleyValentineManc glad everything is going well. I had to start a thread on the pregnancy forum for ivf pregnancies when I got my positive, so you might have to do the same because there didn’t seem to be a lot around at the time. It’s definitely worth doing because it’s just not the same as a regular pregnancy imo, hard to explain to people how anxious you are when they got pregnant after a couple of months.

High HCG is a very positive sign, not sure how many weeks you were when you had it but if it’s not low take that as a win.

@kerrym87 yeah, you’re right, you will have. I’ve struggled with my mental health a lot the last few months, it’s hard to shake the trauma of all of this. How are things for you at the moment?

Speaking of threads @Marvellouslymadmum or someone here might need to make a new one for this soon!

@thislittlebird down reg injection 28th, scan mid Jan with new clinic, all new drugs and gentler approach. Going for pgta as well as will be nearly 37 and with our fragmenting embryos etc. Also fed up with Christmas, I always have to work through it so it's extra stuff to do on top of my usual, extra socialising when I'm knackered. But hey, only once a year!
Remind me where you are? X

@thislittlebird how are you doing? How's everyone doing?? Been dealing with some stuff here while waiting for my next gynae appt to get my lap sorted so no news here. Though I have started thinking more about other options.
As you know I'm all good with donor and that's my go to after a lap but I've been thinking about adoption as a possibility too. It's not something I'm against

Sorry, I’ve been absent for a while.

@Marvellouslymadmum when is the next appointment? Honestly I think people who already had kids are probably better suited to adoption than the those of us who haven’t. There’s a lot of baggage attached to failing to have any kids of your own and then taking that with you into adoption, if that makes sense. I imagine more experienced parents might be in a better position.

yeah all seems ok, I’m 25 weeks now and it’s all getting more real. Have been quite disappointed how my local ccg doesn’t provide much support for ivf or advanced age but the looks of it, you’re just treated the same as anyone else and the lack of consideration for different (and more complicated) circumstances is getting a little frustrating.

@kerrym87 I had a crap Christmas in a holiday accommodation with in-laws! Never again. how did it go/is it going? The new approach sounds good but obviously I don’t know what happened next.

@thislittlebird glad everything is going ok for you albeit less help than you really should be getting! Hopefully it was just a getting pregnant issue with you so now everything will be all good! 25 weeks though, it's gone so quick!!

If I ever get to the pg stage I'll probably just pay for a few extra scans to make sure everything is going ok.
I would imagine it's all very different when you have no children compared to when you have had some.

My appointment should be towards the end of February but I haven't had anything come through yet so I'm going to contact them to find out what's going on.

@Marvellouslymadmum Hey, hope you’re ok with whatever you needed to get sorted. Hopefully you’ll get your LAP sooner rather than later.

My update - after our third transfer failed again the consultant arranged for me to have an antinuclear* antibodies *test. I had that done in January which came back negative. Not sure if I’m happy or irritated it came back negative to be honest as it doesn’t give us an answer.

We’re doing a natural (ish) FET this month. Had my second monitoring scan today and tonight I’m doing a trigger injection. Transfer will be next Wednesday. It’s a day 6 expanded blast, hopefully it survives the thaw and we get to transfer. I’m not sure how I feel about it to be honest, not excited, just anxious.

If this doesn’t work it’ll be a 3/4 month break to prepare for another egg collection. I really hope I don’t have to do a third egg collection.

I hope everyone is ok, or as good as they can be.

@Lauralozzle sort of, still sorting it all! I hope I don't have to wait ages too!!

Seems like you've been on a rollercoaster too! I do hope this next one works for you, people think it's all plain sailing and once you get to ivf it just works but that's so not the case!!

@Marvellouslymadmum Yes, definitely a rollercoaster. I hope so too! I agree, people think it’s all plain sailing and ivf works but it doesn’t always.

I avoid the happy, pregnant first transfer cycle groups now. I’m always the one left at the end of them and they’re just a bit demoralising now. This group is good though, cause I know you all get it, and get the disappointment of it too.

@thislittlebird 25 weeks! Wow. Your journey honestly gives me hope.

@Lauralozzle good to hear from you! I never had ANA but I'm glad they did it for you. How many ECs have you had now? I think naturalish can be good, we did something similar, and anxious is to be expected. You sound just like I was, I couldn't face regular infertility or IVF groups because everyone seemed to have success first or second try.

It's all gone quite fast since about 16 weeks and I'm glad it offers some hope, I know what it's like to be in the RIF club. I'm trying to remember what I had/did in case it's helpful for you if you have a 4 month wait.

• Microbiome test with Fertilisys and then treatment (antibiotics, probiotics, I also treated myself for thrush and BV a week or more before transfer in case there was anything going on in there causing issues)
• I self medicated with low dose pred on embryo transfer 3 and achieved implantation. I then did the NK cells test but that came back within range. So I pushed to try low dose pred for this last attempt (embryo 7) and maybe it helped, since I achieved implantation again on it.
• Pushed for extra progesterone tests and they increased my progesterone from just cyclogest to cyclogest + Lubion (I suspect cyclogest alone was never enough for me, my progesterone is naturally low and I bled before OTD on almost all attempts)
• Also tried blood thinners (Arovi) for the last two cycles, but wasn't tested for blood clotting
• DH had DNA fragmentation and supplements to improve it, also had hidden STD tests, karyotyping (he had known motility issues)
• We tried PGT-A this time and it was our only euploid embryo, so I do suspect creating normal embryos might have been a problem for us at our age. I will say it's sort of reassuring to know this embryo was euploid. With hindsight, I'm glad it was this one that worked. I'm already worrying something might be wrong with the baby, probably because of years of IVF and infertility making me lose confidence, but so far the tests have said normal or low risk etc, and I have to try to trust that.

@Marvellouslymadmum Everything does seem to be good, it's hard to believe really, at my age and considering how long and hard it was to get here. I might pay for an extra scan, it's frustrating that they won't see me between 20 and 36 weeks for a scan.

Definitely chase them up, it's all so long. How's your partner feeling about it all?

Did you see this? https://news.sky.com/story/ivf-more-than-100-patients-at-guys-and-st-thomas-and-jessop-fertility-exposed-to-faulty-egg-and-embryo-freezing-liquid-13071515

This was where I had my first cycle, glad I didn't do any more there now or I'd have been one of these patients. I was with Lister by Oct 2022.

@thislittlebird Thank you, it’s good to hear from you too!

A microbiome test is on the list if this transfer doesn’t work. I’ve been taking optibac for women in the thought that it can’t really do too much harm!

I am having extra progesterone tests now. So I’m down for x3 daily cyclogest but I have a progesterone test the day before transfer and if levels are below 45 I’ll then be having lubion injections. I still have some lubion after my last round.

I think blood clotting issues will be looked at if this doesn’t work. The constant mentioned pgta testing in the future but I’m not sure it’s worth it when we get so few embryos. I suppose I’ll think about that in the future.

I’ve had two egg collections so far, one transfer with the first and (hopefully) x3 with the second if this one thaws successfully.

I read about that article and the frozen embryos/eggs that might be damaged due to the faulty liquid. It’s awful.

@Lauralozzle I feel like I avoid everyone, a pregnant stranger makes me so mad and I know it shouldn't!

@thislittlebird at least you're getting a 36 week scan! When I had my two children I had a 12 and 20 week scan and that was it!

My oh goes through different stages, sometimes he's all for donor sometimes he's of the opinion it'll happen eventually on its own especially once I've had a lap but we've agreed after the lap we get booked in with (probably) Gynem in Prague and start the process and if it happens in the meantime (miracles sometimes happen) then even better.
I hadn't seen that article, that's awful! I hope they're willing to rectify it for people where possible too!!

Hi everyone, I'm sorry my brains scrambled so I can't remember who said what for every person even though I keep looking!
I had antibodies etc back and all were negative, kind of helpful but also frustrating we didn't have anything to run with.
We're getting results of our 4 embryos pgta testing when hubby gets home from work, 4th collection with 4 embryos out of 25 eggs 😔 quality is a major issue for us
@thislittlebird yeah it's difficult, can you access the perinatal mental health team via midwives or Tommy's counselling to help? Not that it will help but vast majority of major issues picked up ate during 12 and 20 weeks scan. The should measure your bump throughout to assess growth but if you feel you need more input I would request an appointment with your consultant as with maternal age and ivf I would have thought you would be consultant led.
@Marvellouslymadmum fingers crossed for your lap. We are planning donor if this or next cycle doesn't work but it is pricey, deffo cheaper abroad, Cyprus supposed to be good too.

@kerrym87 it's nowhere near as expensive abroad, there are a few good places by the looms of it but I don't want to get too involved looking at clinics until we are nearly there lol I'll look properly once I'm near my lap so I can start to get my hopes up about donor!
🤞🏻 for your results today!!