Switching to a long protocol for my next ivf cycle

[Pep1952]

Hi everyone

Sadly my first ICSI cycle didn’t work :(

We collected 5 eggs (AFC 7) which were all mature but only 2 fertilised and 1 made it to a day 6 average quality blast. BFN.

Anyway, we did ICSI because we found out on the day before my egg collection that DH has dna frag of 32%, his SA was always fine. Incidentally he has bilateral varicoceles (diagnosed in 2019, he was told no intervention needed) which causes him pain / dull ache so he’s booked for a repeat ultrasound and will also see a urologist (Mr Tet Yap). Mr Ramsay is fully booked for the next two months.

The fertility dr is suggesting we try a long protocol next time we do a cycle. I wonder if anyone had a better experience with long protocol after trying a short one? I’m a bit concerned about oversuppression and I thought 5 mature eggs from 7 follicles in the first round was a good response but dr thought it’s worth trying a long protocol to see if we can get more eggs to mature.

Thoughts?

Hi @BreakfastOats I hope the consultant appointment went well?

@bubu24 when will you know the PGT results? All fingers crossed for you!

We just had our private urology appointment today. Fortunately, we can get the embolisation done at the NHS so that was a relief because it's around £5k! There will be wait times but since we already saw the urologist the wait for the procedure will not be as bad as we thought. Hopefully we can get it done in January. We were also advised to wait another 10 weeks post op and then we can have our next ICSI cycle.

I will get my AMH checked again soon as obviously if there is a massive drop we will consider getting my eggs freezed asap while husband sorts out his DNA fragmentation. Both the urologist and fertility consultant also advised adding Zymot to the next cycle. I can't find it on HFEA but it doesn't cost much and it has been suggested in several forums I've been through so we'll give it a go.

I feel better now having a plan. I do hope my AMH stays where it is (mine was pretty low at 3.5 pmol) but if not, we also have a plan B.

Best of luck to us ladies.

Hi @Pep1952 @bubu24 I hope you’re both well!

It’s great that you have a solid plan! Freezing eggs sounds like a good option@Pep1952 I also think that if our second round fails I might have to consider it (I think the first one will probably be hit and miss 😂)

My consultant mentioned DNA fragmentation on Saturday for the first time. He said that my husband needs to ejaculate quite frequently as this apparently helps some men with their DNA fragmentation. However, we didn’t think to ask whether he should get this tested as at the moment we have no idea what his fragmentation is! His medical history doesn’t indicate there may be an issue but why is this not a standard part of male fertility investigations?! It’s not even invasive! It looks like the HFEA has neglected to look at all the different tests for DNA fragmentation and provide a suitable rating for each 🤯

Hi @Pep1952 @BreakfastOats I thought I'd wait for my pgt-a results as it's been such a rollercoaster. From the 10 eggs fertilised only 2 made it to day 5 so that was v disappointing. Then day 6, 4 more were frozen.
Just got the results today and we have 2 normal embryos, one of which was a day 6, although they say typically those tend to be abnormal.
Anyway, very happy and definitely team "long-protocol" now :)

@Pep1952 did you get your AMH retested? I wouldn't think a few months would make much of difference to warrant egg freezing before but obviously see what your doc says. And great that you get NHS to cover your partner's treatment! Hope all goes well x

@BreakfastOats not sure what to say about the DNA fragmentation. It's odd that the consultant mentioned it but then didn't suggest testing it... Maybe he said it more as a precaution, something like it can't hurt to do that but not necessarily that he thought it might be an issue?

@BreakfastOats I suggest asking your doctor about dna fragmentation if it will help getting it done. We had it done as a precaution, my husband’s SA was good (‘stellar’ in fact!) but then of course it came back slightly high and now we’re getting it sorted hopefully. I didn’t want to alarm you but one of our regrets so far is not getting the dna fragmentation done sooner than we did.

@bubu24 what a result!! Wowzer 2 normal pgt tested embryos, how lucky!! When are you having your fet? Good luck! I plan to get my amh tested after Christmas because if we do it now and find out it dropped we can’t really do much this month (my period just started) and it will just make me feel super anxious. So will do it when we can actually act on the results. I really hope i don’t have to freeze my eggs.

@Pep1952 that makes sense. Tbh I wouldn't worry about the amh if it's only a 2-3 months waiting. I would probably focus on supplements for egg quality, since they say you need to take them for 3 months anyway. But anyway first and foremost, enjoy Christmas and then you can decide 🙂

I'm going to see what my consultant says but it will probably be a Jan transfer for me. He wanted me to do a saline scan and a dummy embryo transfer. I think I want to do an ERA, EMMA and ALICE test too just to make sure everything is okay and we don't waste any good embryos.

Hello @bubu24 @Pep1952! How are you getting on?

@bubu24 did your consultant recommend those add ons? I’ve read a bit about them on the HFEA website.

Thanks both for your suggestions, we did end up booking a comet test but my husband got a stomach bug and didn’t make the appointment 🥲

We were told that if he’s had a fever we need to wait for 3 months but his temperature remained under 37C so we’re trying to reschedule at the moment.

@BreakfastOats the consultant had the saline ultrasound and dummy embryo testing as part of my treatment plan from the beginning. I think it's standard for the clinic.
At the follow up consultation he reiterated that he wanted to do these 2 to make sure everything will be okay on the day, and it made sense to me.

He then also suggested embryo glue and I asked about something I read here on mumsnet that said you shouldn't use embryo glue with biopsied embryos or those that hatched as they are more vulnerable etc but he said while that was the thinking at one point, they are doing many transfers with embryo glue (including for genetically tested embryos) and there are no issues and obviously there is evidence that it actually can help. So we decided to use that.

He talked about ERA, EMMA, ALICE and NK cells tests. We decided to go with the EMMA and ALICE as he put it, other than costs there are no downsides and obviously if there is something wrong (infection, unbalanced microbiome) it might impact implantation/cause miscarriage. But he didn't really push for these and actually said that normally they would only recommend these tests after recurrent miscarriages but since we only have 2 embryos we don't want to take the risk.
We didn't recommend ERA test, apparently there is mixed evidence on this and unproven to help, in fact in some cases it might do the opposite. The NK cells again he didn't really recommend at this stage, although gave us the info to read and if we want to do it, we can. There is no downside to doing the test itself but if something is wrong the treatment would be steroids and I think on this one as well there is mixed evidence as to how helpful it actually is.

I was looking to book the EMMA and ALICE test this month but unfortunately there is no availability, so we'll do that in Jan. Then 1 month of birth control in Feb and transfer in March... Can't believe how long this process is taking!

Hope you managed to reschedule the appointment in the end. Or will you have to wait for Jan now?

@bubu24 Thanks for explaining, it sounds like you have a great plan; I hope it all goes well! March seems a long way but you've reached so many milestones already and the best is yet to come🙌

We had a lengthy conversation with my consultant and he advised us to cancel the comet test. He thinks that it's an overkill to go for add-ons before our first cycle because they are expensive and there's not enough research about them. He said that if our first ICSI cycle fails, it'll give us insights as to what to focus on for the next one. I'm doing my blood tests in early January and starting stims end of Jan. I'm starting a project for a new client with a new team in January and I'm a bit worried about planning scans etc. but I suppose I have to get on with it like everyone else! 😅

Hi all,
Jumping in on this thread!

First IVF with ICSI cycle resulted in total failed fertilisation. AMH 1.9 - managed to get 4 mature eggs but none fertilised.

Next cycle will be long protocol and petrified!

@bubu24 great plan, it sounds like you’re doing all that you can to give yourself the best chance. March will be here before you know it, make use of the time to get yourself the healthiest you can be to welcome that precious embryo, wishing you the best of luck!

@BreakfastOats good luck for January, how very exciting! Keep us posted if you can please.

@ivfjourneyandme sorry to hear about your first cycle. When are you having your next one? Did your consultant talk to you about growth hormone? Mine didn’t until i brought it up and he said he feels like it wouldn’t hurt if we add it to the next cycle but he said it was expensive. I haven’t asked/ looked at the price yet - i thought we’ll check the finer details closer to the time!

Update from me. Husband is now on clomid for low testosterone. The low testosterone may or may not have contributed to our infertility but good to address it anyway. Also pleased that he’s booked to have the varicocele op in January so we’re now looking at mid-April for our next cycle with long protocol this time plus zymot and potentially plus growth hormone. I’ll get my AMH rechecked in January and fingers crossed it doesn’t plummet.

Good luck to us all ladies, please keep posting here for your updates. And happy holidays to all!!!

Are you both okay? Any more news? @Pep1952 @bubu24

Our clinic doesn’t haven’t capacity to start our treatment end of the month. I am absolutely shocked by this as it was never raised as a potential issue and my consultant told me before Christmas to email them start of January in order to start treatment end of January. Apparently there’s been a big spike in demand 😢

We’ve now been given a consent appointment for early February but expecting my period 10 days after the appointment. My consultant previously told me that I won’t downregulate. I want to ask the clinic whether this will give us enough time to order drugs etc or will we have to waste that cycle too?! I don’t really know how this all works and I am devastated by this delay and the prospect of further delays. I already know that the first round usually fails so was just looking forward to getting it out of the way really 🫠

Hey @BreakfastOats great to hear from you.
Sorry to hear about the delays. I can understand why they need to be extra careful with managing their capacity but still, it's very frustrating.

Have you already agreed the treatment plan with your doctor and just need to sign the consents and have the nurse appointment?
If it's the same as my clinic, the nurse would go over the consents and treatment plan in detail. Then they arrange the prescription to be sent to the pharmacy. My clinic uses Pharmasure and they always called the next day to arrange delivery.
I would have a scan on day 2-3 of my period and start injections on day 3-4. So you should have enough time.

That said, for your peace of mind, I would ask them to confirm what will be covered at the consents appointment and if you'll get the medication in time to start treatment with your next period due 10 days post appointment. If not, they should find an earlier date for your consents appointment to make sure you don't lose another month.

I found it very frustrating in the beginning that after paying so much money, I was the one having to arrange my appointments, including follow-ups etc. But I've since accepted it :)

On my end, I had my dummy embryo transfer and saline ultrasound on Monday and all went very well - they said no issues.
I have my EMMA and ALICE biopsy next Tuesday. Fingers crossed all well there too and then I start downregulation in Feb.

@bubu24 Awww glad that everything is going to plan! :) I hope the biopsy goes well! You need to let us know how was it after your appointment!

It’s definitely best to accept things don’t work as smoothly as they perhaps should! I believed the stressful bit would be side effects from medication and the uncertainty about how many follicles, eggs, embryos etc but I’m nowhere near any of that but super stressed already 😅

Thanks for sharing what you know about the process. My consultant has written my plan, but I haven’t seen it yet. He told me it’s ICSI with the long protocol, no downregulation. All that’s left is the consent appointment with the nurse, they’ll do blood tests on the same day. I am worried about the prescription so good to hear about your experience. Hoping to speak to the clinic about timings tomorrow.

Can I ask, do you know why your plan included downregulation? x

@BreakfastOats I thought all long protocols have downregulation as that's makes them long? You take medication to suppress your ovaries so they no longer produce hormones on their own . You then need to stim for longer vs a short cycle where drugs are on top of hormones your ovaries produce.
I might be wrong though and maybe there is different understanding out there of what each term means...

For me even with a short protocol I had a prep month where I took norethisterone for 12 days (start between cycle day 14-17) Then I had my period and that's when I started the treatment cycle.

With the long protocol I still had the norethisterone but then also buserelin from cycle day 21 to completely shut down my ovaries. I still had a period once I stopped norethisterone but continued with buserelin injections until I had my scan and started stims.

I have endometriosis with cysts on my ovaries and the pill helps quiet that down. But also my consultant said that taking the pill in the prep month, should help follicles grow at more similar rates.
As for the long protocol (with buserelin), my doctor said we should try it to see if we get more eggs with the 2nd cycle (which we did).

I hope you get to speak to the clinic today so they clarify all questions and put your mind at ease.
My consultant's secretary always sent us the treatment plan via email after we had the consultation and then asked us to book the nurse consultation to go through consents etc.
Perhaps you can ask your clinix to send you that? It would have a timeline for your cycle and what needs to happen when.

Hi @BreakfastOats sorry to hear about the delay in your treatment, I understand how frustrating that can be. My understanding of long protocol is same w @bubu24 - the down regulation makes it long but perhaps your doctor is referring to a variation of this? I hope you get clarity on that soon. My long protocol involves the addition of naferelin nasal spray to down regulate. I don’t have the exact timings yet because this is usually discussed at the nurse appointment in my clinic but if i remember it right from what the consultant said it’s starting on day 21 for around two weeks I think.
@bubu24 great to hear things are going well! Best of luck! Can I ask how your endometriosis was diagnosed? I’m waiting for my laparoscopy appointment (dr said potentially March or April) to check if I have it and the dr said they will treat it right then and there if I do have it but now getting super anxious because I read that endometriosis lap treatment can drop your AMH… I’m planning to cycle in April. I’ll ask my fertility doctor about this but any advice will be appreciated!

Hi @Pep1952 . Technically my endometriosis has not been formally diagnosed, as the only way to do that is through a laparoscopy. During laparoscopy, they remove the endo and send a sample for testing. If it comes back as endometrial tissue, then you are formally diagnosed. Although some say that even if they just go in and look with the lap, that's enough for diagnosis.

I had a pelvis MRI that suggested I have what looks like endometriosis lessions and I always have 1 cyst on each ovary that appear as filled with blood on ultrasounds (that's what they call an endometrioma or chocolate cyst). Whilst I have not been formally diagnosed through a laparoscopy, both my obgyn (who is an endo specialist) and fertility doctor say it's almost certain I have endometriosis based on the scans.
In terms of the laparoscopy reducing your AMH, that can be true if you have endometriomas on your ovaries as I do, as effectively by removing those they also take tissue from the ovaries themselves.

In my case, because we have male factor infertility that can't be improved, we had to do IVF anyway.
So there was no benefit of doing the lap and removing the endo, at the risk of potentially reducing the number of eggs that could be retrieved.

If there is no male infertility, then they say removing endo is recommended as it might improve chances of natural conception. It reduces inflamation, pain if you have it etc. AMH in the context of natural conception is irrelevant really, as you only ovulate 1 egg each month anyway.
But obviously with IVF you want to get as many eggs as possible.

If it's looking like your partner's infertility can be adressed to the point where there is a chance you could fall pregnant naturally, then it's worth doing the laparoscopy. Also of course if you have a lot of pain.

If you plan to do IVF anyway then it's with a question mark. If it's a lot of endo, it can cause a lot of inflamation and removing it might help with implantation etc.
Is your IVF doctor aware you are planning to do the laparoscopy? Has he recommended it?

@bubu24 thank you so much for taking the time to explain all that, so helpful. No, my fertility consultant is not updated that I’m coming to the top of the wait list for laparoscopy. At my first appointment with him I did mention that I was wondering if I have endometriosis because I always spot before my period and sometimes have pain although nothing intolerable. He basically said what you said as in lap is the only way to properly diagnose it and at the time I just wanted us to have a go at IVF so we never really talked about it again. He also mentioned that low progesterone may be causing the spotting although we since found that my prog levels have always been fine. I will ask him what he thinks when I update him following husband’s varicocele op next week, and hopefully he can advise on the risk/benefits of undergoing the laparoscopy. I also have a pelvic ultrasound this weekend which apparently is routine for all patients being considered to have endometriosis.

Hi @Pep1952 I can’t believe your husband’s operation is next week, hope it goes well!

@bubu24 Really interesting info on endometriosis, thanks for sharing. About a year ago I had intense period pain and I was sent for an ultrasound to check for endometriosis. They found a small ovarian cyst that disappeared within a few weeks. The pain also went so I never revisited the topic but can’t help but wonder about it every now and then.

You are both absolutely right about downregulation. I spoke with the clinic today and it turns out that I’ll be on the short protocol and the dose will be 300 (I didn’t catch what the medication will be over the phone). I had to resort to my friend chat gtp as I was convinced that I was previously told I’d be on long protocol so started panicking. According to AI this is a sensible choice for my first round as I have a regular cycle & no other known issues apart from low AMH. At least me thinking that I’d be on long protocol made me follow this topic and meet you two 😁

@BreakfastOats ah that makes sense then, and tbf short protocol is the standard choice anyway, and works really well for the vast majority of people.

As for the cyst, it wouldn't have been linked to endometriosis if it completely disappeared. Endometriomas, as far as I know, can decrease in size (mine did) but they won't fully go away on their own. Cysts that come and go are no cause for concern from what I know.

@Pep1952 I assume the ultrasound is with the endometriosis clinic? If they don't see any obvious signs of endometriosis they might say you don't need the lap. But anyway, as you say, best to check with your fertility doctor even if they say you should do it.

Good luck with your husband's op next week! Hope all goes well. Keep us posted :)

Hope everything went well this week? :) @Pep1952 @bubu24

Hi @BreakfastOats my husband had his varicocele embolisation today! Consultant said all went well however he needs to wait at least 2 weeks before doing any strenuous activities including having sex unfortunately. I’ll be ovulating next week so a bit sad to miss one cycle but of course will follow what the dr advised, we don’t want any complications! The urologist advised at least 10wks post embolisation before doing another ICSI so will probably cycle in April. Very nervous but looking forward to it! Not long of a wait for yours now. It’s a short protocol so at least not a lot of waiting. I wish you the best of luck xx

Thank you @Pep1952 I expect that we’ll start our first round in just over 3 weeks and I can’t wait but at the same time I’m worried about it. It’s likely that I’ll need to travel for work that period and I don’t know how to get out of it so I make my scans etc 🥲

I’m glad it all went well with your husband’s operation! I hope his recovery goes well. I know how it feels missing a cycle but you’ve made so much good progress and have a clear plan! I hope your next cycle is a lucky one 🍀🍀🍀

Hi @Pep1952 @bubu24 how are you? Any news on your side? We are hoping to start treatment in two weeks but it’s still not certain due to capacity issues at the clinic.

There was a reference to OHSS during our consent appointment and although I had read about it, I started googling it and I feel completely freaked out to the point where my sister tells me I should not start treatment if I am that scared based on some minor statistics and rare news stories. Was that even a concern for you and if so how did you deal with it?

Hey @BreakfastOats is it the generic consent forms that got your worried about OHSS? Or did your clinic say you personally at an increased risk? That would only be the case if you're expected to get lots of eggs (so if you have high AFC and high AMH). Even then, they will put you on a freeze-all cycle if needed to give your body time to recovered before attempting a transfer so you don't get OHSS.
I really wouldn't worry.

All good on my end. All tests came back normal. I'm now in the prep month and then FET will probably be late March. Slowly getting there 🙂

@bubu24 it’s almost time! That’s so exciting! :)

The embryologist did our consent appointment and she mentioned it. She said that everyone is at risk but the risk is low and if I notice any symptoms I should call in. I didn’t think much to it at the time but then got home and started googling about general anaesthesia and OHSS and some really freak cases came up which make me want to abandon the whole thing now. You are all so brave for going through all of this. Maybe I don’t have it in me after all :/