IVF September/October 2021

[thislittlebird]

Hi all, I had a search and didn't see a thread for September/October. If there is one already please let me know and I'll join. I'll be starting stims at the end of September/early October with the Lister. I'm pretty terrified tbh, would be happy to hear from anyone else starting around the same time. I'm a first-timer and we'll be having ICSI (possibly IMSI).

@Littlemeadow26 honestly the pandemic helped us in that respect, we could save more than normal which was a bonus when it came to suddenly realising we needed to seek private help.

Wrt the freezing, is that just in case of a particularly bad sample on the day? What was you DH's results?

I think as @Halftime23 said, the AMH shouldn't be an issue for you but it may just mean you get fewer out. Is the NHS one round or more? I know some people with low AMH on here doing mild ivf, and I've considered it too because of my high AMH. I'm going to try the short protocol and then if those two rounds don't work and I suspect it's egg quality related, I'll look into Create, I think.

What do they think is causing your DH's problems, Halftime23?

@hippo256 I think they're planning about 10 days of stims from cd2 for me, will need to be monitored every 2 days because of the overstimulation risk and I suppose it will be very much dependent on what my follicles decide to do with trigger etc tbc. My AMH was 36 (need to get it redone soon) and AFC 23 and 28 on the two times I've had it, so I'm hoping they'll respond. I'm expecting AF on the last few days of September (26-28ish) so unless I get a strangely long cycle we might be on a similar timeline.

The NHS let us down in a big way, including GP's surgery telling us our results were fine when were they were not, not referring us despite the problems, dismissing us when we finally were referred, not offering me a hycosy, not offering DH a urology referral, and ignoring my progesterone issue. Long story short, we switched GPs, he referred us directly to Guys but they're so slow that my 38 year old nerves can't sit around waiting for them anymore so we had to look into private.

The Lister have been great so far, but my consultant of choice is retiring so I've had to switch. I had my hycosy with them as well and they were good. We didn't do an awful lot with Jonathan Ramsay in the end because the efforts my husband made seemed to improve things so we only need the one set of tests and were free to start ICSI.

@thislittlebird honestly no idea what could be causing his issues. It’s not hormones, not genetic, no blockages, he’s fit and active, eats well, drinks a little but genuinely not a lot. Mr Ramsay wondered about Covid, not that we know he ever had it.. but maybe! Just hoping the treatment will have made enough positive impact to have a successful round of ICSI eventually.

So sorry to hear about your struggles with the NHS. Pleased that you are having a better time with the Lister. We found it tough with the NHS too - when they gave my OH the wrong pot and couldn’t get results from his SA that was the last straw 😂

Also sounds like our cycles will line up. 26/27 Sept. My AMH is >30 similar to yours too.

@Halftime23 Thank you! It was mostly that naively we weren't expecting there to be any issues and to find out I had an AMH just over 5 at the age of 33 was a blow. Especially as nothing was made of this by the consultant! Now I don't know whether to be concerned or just take the consultants word for it that it wouldn't have impacted us conceiving naturally and were still good candidates for IVF.

@thislittlebird We get two NHS funded rounds and we're with care fertility as were based in the north. One of my close friends went with create and had only wonderful things to say about them if you consider them in the future.
We are doing short protocol so down reg for 10-14 days from day 16, a withdrawal bleed and then stim for 10 before scan and egg collection. I should start stims at the start of Oct! I like the idea of mild IVF though and would be keen on that if these cycles fail but it all depends on what the potential failed cycles indicate.

In regards to the sperm freezing. My husband had a count of 14 mil at the first sperm sample but the motility was low enough that we qualified for IVF on that basis. However, he also went for an appt with our consultant to check for varicosele (all clear btw) and at this time he had his bloods taken. This showed low LH and FSH so our consultant was worried that the sperm sample could be an anomoly as the bloods indicate that count was 'too good' and might not be sustainable. My husband is 30 and doesn't drink/smoke, goes to the gym and maintains a healthy weight so there was nothing he could really do to improve sperm quality other than suppliments for oxidative stress. So as part of the IVF referral instead of doing a course of drugs treatment and putting it off even longer we agreed to a sperm freeze so that it could be tested and banked and then we wouldn't have to worry on egg collection day.

Following

@Halftime23 he mentioned covid to us too so it must be a theory of his. I don't think DH had it, he used to be tested weekly with work.

Oh yeah, they really are not geared up for fertility imo, unless you can get past that point and deal with the acu direct.

Interesting, very similar times. Do you have a plan in place with them? Or an appointment booked for one? I need to book in with the nurse.

@Littlemeadow26 yeah, I definitely like the idea of mild and will try it if my eggs turn out to be suboptimal. Fingers crossed we won't need to and the two rounds with the Lister will sort us out. It's interesting that they did hormonal tests on your partner. No one felt the need to do these to my husband and he even asked the GP this week having not had any and he still said don't worry about it if the urologist didn't????

It's just frustrating when you feel like there's tests that could tell us more. In all fairness his count is fine, the last one after one day's abstinence was a concentration of 74mil/ml but it's the quality that's the issue and he only has 5mil progressively motile sperm once all the duffers are taken out of the equation, and you need 20mil to be considered fertile. His morphology had got up to 8% at the last test though, which was good.

We're all around a similar late sept/early oct time, weird!

@thislittlebird I'm hoping that we both have success with our rounds and that alterative treatments won't need to be considered but it's always good to have an understanding and preparation of what's to come!

Yes my referral was done in May and protocol agreed in July, however my clinic can only provide treatment for so many IVF funded patients in a period of time so we went onto another waiting list and finally had it confirmed that we being on my September period! X

I'll be completely honest, my husband said our consultant just did his bloods on a whim because we didn't have any on file for him and I think it was more a tick box exercise which, for us, resulted in negotiations over next steps.
Not that we weren't prepared for my husband to have his own drug protocol to ensure the best possible sample but if it was going to result in ICSI anyway then we reasoned it probably wasn't worth the wait! He had a total 14 mil count but only 9% of that was motile, however after the successful freezing we know we have up to 6 rounds accounted for so I think it was the right decision for us.

I do think it's worth pushing for your husband to have his bloods done. If nothing else it just builds a better picture, however by the sounds of it he's done a lot of work improve the sperm quality and we're all so close to starting now that the hard work is mostly done in his respect!

@Littlemeadow26 freezing sounds like a good idea. I’m going to ask about it at our next appointment. Obviously we don’t have huge numbers to freeze, but it might take the pressure off on the day just knowing it’s there if needed.

@thislittlebird I have a plan in place although I still feel like I need more detail than they give. We have dna results with Mr Ramsay 24th August then a nurse meeting 10th Sept to go through final bloods (HIV etc) and to show us how to use the meds. Then start short protocol when AF arrived around 26/27 Sept. I’m at risk of OHSS so they are starting on a very low dose and monitoring closely, they said up to 2 weeks before egg collection. But we all know and are so used to having hurdles within our plans aren’t we

Hello! My goodness even seeing this thread makes it all feel more real!
I hope you don’t mind me jumping on, we (fingers crossed) start our first IVF cycle at the end of September. We’re nhs and I can’t believe how quickly everything started moving from our referal to the private clinic, we basically sat down and got given an option of start dates. We’re getting married in early September (fourth time lucky thanks to covid) so we opted to wait until after that.
I say we opted... I was basically ready to cancel the wedding to get things going sooner...
Anyway, lovely to virtually meet you all, hopefully we can stick together through our cycle x

@Littlemeadow26 God, my referral is so slow by comparison. We were referred in June in the end, should have been May with the bad gynaecologist, haven't even heard from them beyond a questionnaire and it's August. I'm on another thread about Guys and it seems to be 8+ months from referral to treatment. That's slow but possible when you're 30. When you're 38? I"ll be a few months off being ineligible
for NHS help and they don't seem to be very interested in the urgency. Hugely frustrating.

The lack of interest and tests for men is very annoying tbh. Husband is now booked to hav lots of bloods done by the GP, but the fact that no one has bothered to do hormone ones on him is ridiculous to me. He has no obvious signs of hormonal issues, but it still bugs me because I want to tick every box. Maybe I'll see if we can do medichecks ones or something. Can't be bothered to ask the GP about it again. Either way it's ICSI for us, and I received a letter to say we're doing IMSI. I wasn't sure if it was needed but I guess we'll give it a go. It's just frustrating how much extra ICSI and IMSI costs compared to normal IVF, it's adding thousands on. If we only have to do one full round and can get enough embryos from that I'd be over the moon. Going to buy two rounds just in case. If we need more beyond that then it is what it is.

@Halftime23 which consultant are you with btw? I need to email the secretary today, I have a whole list of things I need to ask and book. I need to book in for the injections but not sure whether to do it in late August or early September. One is nearer to starting, the other allows more time to sort out issues if there are any with my tests with GP when I show them. Might also book in at the Shard because that's closer for me. Do you know what meds and dose you're on? I'm due to be on 150/225 meriofert on alternating days.

@RoddyRoo Hi, welcome! It's all too real, sinking in now! NHS has been ridiculously poor for me, so I'm glad someone is having a quicker experience. Congrats on getting married. We managed to fit ours in last October and we'll be starting IVF around a year later. In previous years we also completed on our house the first week of October, and bought our car. Fingers crossed it's a lucky week!

All very similar timings!

@thislittlebird thank you, I’m so sorry to hear it’s been so difficult to get to this point. Don’t get me wrong it’s not been smooth sailing either - I was just so shocked that when we finally got referred the process was so quick.
In terms of the diagnosis stage I had lost letters, blood clinics which refused to book appointments on certain days of my cycle because ‘they don’t do that’ - it’s been really frustrating. Not at all a smooth patient journey, it doesn’t feel like anything is made easy or stress free - but I’m really excited to be here now.

I see you know what meds you’ll be on, I’ve only be told Gonal F and a short cycle - hopefully I’ll hear more at the nurse appointment at the end of August. Has anyone had one of these already?

@RoddyRoo Always nice to have someone join going through the same thing! I came here looking for support and just general chats with people who understand and it's amazing how open and helpful people are.
Congratulations on the wedding! We got married in May 2019 and the time leading up to it and the actual day went so fast. I wish I could re-live it so enjoy it!!
I can understand you prioritising treatment but it sounds like your CCG has been really flexible which is fantastic. Whereabouts are you based if you don't mind me asking? You don't have to be too specific!
I an also having short protocol and have been given an idea about which drugs but have my baseline scan at the end of August and then call when my September period comes to book in my nurses appointment which should be right at the start of the month. So it looks like we will be going through treatment at the same time.
Are you having IVF or ICSI as well? How are you feeling about it all?

@thislittlebird Sorry I should have explained that better! We got the original referral from our GP in Dec 2019 after we had been trying for 14 months. It took until the end of March to complete both lots of my bloods (day 3 and 21) and my husband's first and only sperm sample. We then had a phone appt booked with the consultant in April which was cancelled with no explanation, which was rescheduled for May. This was when we were officially referred for IVF. My husband had his physical and bloods following this and I was told that due to covid no scans were being performed- unless I had shown any symptoms of Endo of PCOS then there was no need as it wasn't essential! To my knowledge I don't have either of these conditions so I didn't argue for fear it would slow us down. We then waited until June for the consultant to give us our protocol which was mapped out via Skype. After that we told we had to go onto a 2-3 month waiting list due to our CCG only allowing the clinic to perform so many NHS funded cycles of IVF in a period of time. And here we are, scan at the end of the month and treatment sept/Oct so that's a good 9-10 month wait. I think that's more in line with what you were experiencing from others.

I can totally understand why you feel like age is not your on side and that the NHS lacks urgency. I feel the same way about my poor AMH- when I started trying at 31 if I'd known it would have taken 2 years I would have pushed harder sooner. I think you're being amazingly proactive and that can only help your situation.

Glad to hear your husband is booked in for bloods. It makes sense to have them even if it just compounds what you already know, it's better to have everything you can!

Did your clinic say why they thought IMSI would be better than ICSI? Are they concerned about DNA fragmentation or the morphology and think it would combat either of those? My understanding is that IMSI would increase getting the best possible sperm to inject into the egg so if you have the means then you want to give yourself the best possible chance!

Did you consider going abroad for treatment if the cost is a factor? I know that we couldn't afford UK treatment currently so if we don't have success with our two NHS funded rounds then it's certainly a consideration for us. Especially depending on the diagnosis of any failed cycles with donor eggs/sperm being more accessible abroad.

Does your clinic provide any more favourable rates for having 2 cycles over 1 or 3 over 1? I know lots of couples apply for the three as NICE advises the most success with up to 6 rounds (!!!!!) but there's a chance you could lose money if you get success on the earlier rounds. Impossible decision to make I know! X

Lovely to meet you @Littlemeadow26! Sounds like you have had a long journey getting to this point as well. I first went to the GP in October 2020 and was referred to the clinic about 3 weeks ago - that’s why I can’t believe how quick everything is now we’re there - I was expecting more waiting. Fingers crossed.
We’re having half IVF and half ICSI, how about you? Based in East Sussex, not too much involvement from the CCG so far, the clinic called us when they were emailed the letter, So I still haven’t seen correspondence from the CCG (which makes me nervous).
I’m honest excited, I have felt quite overwhelmed and a bit emotional but I’m trying to remind myself how blooming wonderful science is and how lucky I am to have this help.
That being said my only experience with additional hormones was the pill as a teenager - I don’t remember them being particularly good days! Bit concerned about how I’ll respond to the hormones particularly as I have a job where i work with Lots of people who I really would prefer didn’t see me as an emotional wreck or an angry psychopath. These are probably Unfounded worries....
how exciting that you have a scan booked in, I only have a nurse consultation, I’m expecting to start the last few weeks of september so you might be a bit ahead of me (so please tell me everything!).
Really hope you’re well. X

@RoddyRoo Nice to meet you too 😊 I definitely meant to put went to my GP in December 2020!! Which sounds a lot less waiting than December 2019. It's been about 9-10 months but at least half of that was waiting after the actual referral to the clinic. It sounded like more hoop jumping for you to get the referral but once its come through it's all systems go. Crazy how different each CCG can be! Were based on Merseyside so we get 2 NHS funded rounds. How about you in East Sussex? As far as I know all our treatment is IVF with ICSI due to our male factor diagnosis. Did they say why they wanted to try some of each on your cycle? Hope you don't mind me asking!
Oh absolutely, we've been extremely lucky to meet the rigid set of criteria the NHS requires to offer funding which I feel so grateful for as without that we might be have a chance at making our family.
I can completely understand your worries. The reason we started trying when we did was because I'd changed my pill due to migraines and the hormonal effect of this pill change was so severe on my body that we decide I should stop taking it all together and if we happened to get pregnant then ok!! (The irony of that is not lost on me! Haha) I also know that with my low AMH that the level of stims will be higher so I am concerned about the impact on that.
Fortunately I have a great team at work who are super supportive, however I work in a quality role where little details are everything and I'm worried how the treatment will impact my decision making and concentration.
Are your work aware of your treatment coming up? Are they supporting you? How about friends/family? It's an incredibly exciting and scary time so I'm taking all the support I can get!!
I start to down regulate on the 16th day with my period due at the start of sept and stims in October so we will probably be around the same time. Hope your are well too xx

Hello all. I've had a busy few days where suddenly, out of nowhere, the NHS approved our funding. It's been a year since we started investigations, including 6 months of GP f*ck ups, and another month lost to a gynaecologist who decided our medical issues weren't important and she wouldn't refer us for IVF. Thank god for a) my new GP and b) the consultants who wrote us letters of support when the NHS gynaecologist sent us packing. ANYWAY, we may well still need private but it's nice to know we have one NHS round in the bank.

@RoddyRoo I think it's such a shame the process isn't smoother exactly because it just adds these extra layers of stress no one needs. You'll definitely hear more about the meds with the nurse. I asked at the appointment with the doctor which is why I know, but that's only some of it and now with the NHS funding mentioned above I guess my meds will change. Different doctor will use different meds I'm sure.

Remind me what the timeline from funding was for you? Really hoping Guys is fairly fast.

I also stopped the pill because of migraines, but my own hormonal migraines. This was years ago and I was never on the pill for long, but as soon as they said you can't have the combined pill which controls your periods I just didn't see the point any more. Worried about migraines and ivf tbh because hormones but to everyone seems to suffer from the meds, we shall see!

I told my work because I'm going to be absent a fair bit and plan to self-isolate before and after EC/ET, so I thought it best to be upfront. May have some regrets if it fails lol.

@Littlemeadow26 exactly. I don't have low AMH but low AMH and being older aren't far apart in a way I guess, one is a numbers issue and the other is more a deteriorating quality issue, I suppose.

I absolutely would have gone to my GP sooner if I'd known the process was so slow and also that we'd have so many obstacles along the way. I should have just lied and said I'd been trying for ages early on to get some tests done but I'm too honest and wanted to give it a good amount of time lol.

They didn't say why IMSI especially, but it's ICSI + IMSI with that plan. So they will still do ICSI but also study the sperm under the big IMSI microscope, and yeah, he has some fragmentation but everyone does and he had 0% high fragmentation in May which is really good, as well as good morphology. Not sure why, but fingers crossed we won't need it if the NHS are quick.

I think abroad would be a thing for us if we ventured down the donor route but for now I'm planning to stay local so that I have as little as possible to worry about. The NHS news means we have the three rounds as recommended by NICE. We could have three privately but we'd planned to only buy two private because I have high AMH. Hoping that means we'll need fewer than three, but we won't know until we start where we stand. It's nice to know we now have three rounds accounted for instead of two.

And after starting the thread I may not be in Sept/Oct after all lol

@thislittlebird congratulations! So exciting when things start actually moving! Do you have an idea when you will start? I’m over the moon for you.

Our funding situation is weird, the clinic have assured us that it’s all gone through but I haven’t received the letter from the CCG confirming yet. It all went very very slowly from seeing my GP and then incredibly quickly 10 months later when the consultant ran out of tests.

@Littlemeadow26 I think it’s the same with East Sussex (will confirm when I finally get the letter!). Fantastic that your work are flexible - mine is too but I’m really wary about telling people. Who have you told? We have probably 5 close friends who know, they’re all so supportive. We haven’t told our parents - I know I know, but I could bear their disappointment too if it didn’t work!

Your ICSI makes complete sense, because ours is unexplained the consultant just felt the best chance was half and half - I think it was just her preference to be honest.

You must be near down regulating? Fantastic first step, I think we will be close - although I start on the period due at the end of September. Nurse apt on the 24th so hopefully I’ll know more.

Completely understand your concern about the stims - until we try we won’t know I guess. Are work able to give you a less demanding project for a while?

Hope you’re all having a fab weekend xxx

@RoddyRoo thanks! I’m pleased, just so worried they’ll say you have to wait ages still, but let’s hope not. I’m going to make a point about my months of delays due to GP and gynaecologist errors, and my age. Also, I’ve already said to work I’ll be off for late September etc so I’m going to tell them that too.

I started listening to the podcast BFN from the start. Do you guys know it? I like it, it’s nice hearing people going through your struggles. But there was some chat about the dangers of OHSS and that freaked me out a bit. I worry about the stims a lot.

In other news, I twisted my ankle jogging today 🥴

Oh @thislittlebird you are due some good luck!

I blooming love a podcast I will check it out, have read a bit about OHSS - it is a bit worrying, but the regular scans etc will spot early signs. Think I’d be more gutted about having to pause treatment....

Regarding work have you actively made the decision to take leave or has it just worked out that way? I have fingers crossed for you xx

@RoddyRoo I agree, I am lol.

Just killing time until our end of august appointment now. It’s getting to me so we’ve started doing house projects which needed doing, except we had put them all on hold because cost, although I did get round IKEA on Monday pre-twist. Now we have the nhs round we think we can spend a little bit so we’re getting the spare rooms done up.

Oh definitely check it out. I started at the beginning because they’re where we are now, just starting ivf and considering it etc. I’ll listen in order to kill some time.

I’m very scared of OHSS and the whole process and I hate that I have time to sit around thinking about it all. I’m scared of everything and just want to get started. I have a bit of a medical procedure phobia and can panic a lot. I think I’m going to ask them for something to chill me out when I see them.

I can work from home so I’ve said to them I’m going to self isolate from late September, then take some leave for EC etc and warned them I’ll likely be starting later on scan days. They’ve been really good so far.

I’m very behind on this thread but @thislittlebirdi love BFN podcast. It’s such a comfort and I’ve learnt so much.

I’m worried about OHSS too - I’ve been told I’m at risk. I know they often will do a freeze all in this situation and I know that’s often the best thing to do, but I’m already anxious about that delay..

@Halftime23 I’m just going through all the episodes, it’s nice to have people talking about this thing my mind is occupied by.

Yeah, same. Im going to talk to the nhs about a freeze all. I don’t want to wait, but I think it would put my mind at ease about getting ill. I’ll be so stressed if I think I’ve got OHSS and a potential bfp.

Sorry I've been a bit MIA ladies! Last week I had a complete crisis and just found the waiting really hard. Seeing other people getting on with their lives whilst I'm in this state of limbo just weighed really heavy on me. Trying to look forward to the scan next week and then the treatment finally starting next month. How are you all feeling??

@thislittlebird Congrats on getting the funding approved!! That's the most amazing news. What's your next step? I think it's great that they're offering IMSI with ICSI even if there wasn't any indication it was totally necessary- every little helps. It honestly wasn't discussed or offered to us and something I will definitely enquire about at our next appointment!

I agree about going abroad, it something we will consider if our two funded rounds are not successful and if there's a need for donor eggs but that's all the unknown at the moment! Just so pleased about your good news and moving forward.

@RoddyRoo Hope you're doing well!! I'm glad to hear your work is flexible too. I have a really small team and we're very close so they all know (plus my team manager went through IUI after suffering with cancer so he was really approachable!) So of my girlfriends know and one couple we're close to. Then my parents but not my husband's. My parents have been an strong support network to us since we got married but my husband's parents, as lovely as they are, are pretty much absent so we thought we'd tell them if and when necessary. It's really hard to know who to tell because things people say can be so triggering but I think that anyone who has to spend any length of time with you should know because of how you feel during this time. Really it's who you think will be a strong emotional support to you.

My period is due the 1st of Sept so will book my nurses appts in then to start around the 16th of sept. Finally getting closer!!

A friend who is also going through IVF recommended BFN to me. I've finally caught up to what's being recorded currently and I absolutely binged it! Everything I've learnt about IVF has been from that podcast. Wait until you get to the 2 week wait episodes- I hope you have tissues!! Haha.

Everyone has elements of the process they're worried about. I'm more worried about egg collection because I have to go into the hospital alone due to covid and I'm worried about the anxiety of being without the security blanket that is my husband taking over! Silly I know but if I feel ill at home I feel more in control xx

@thislittlebird sounds really sensible, and having a plan helps too doesn’t it.

@Littlemeadow26 I’ve just listened to the episode with Zoe Clark-Coates and I just couldn’t hold it together. I was making a sandwich on my lunch break and crying in to the utterly butterly

It’s lovely that you have the support of family and colleagues around you. It’s not silly at all to feel anxious about not having your husband with you. It’s such a rubbish situation and completely natural you’d want to be together 😘