Azoospermia - Donor Route Support

[Blue234]

Hi everyone!

This thread is dedicated to those of us navigating the azo journey and considering or have chosen the donor route.

I thought it would be great if we could share our experiences, offer support, and help each other through this challenging path.

Looking forward to hearing your stories and supporting one another along the way.

I am happy to start this thread by sharing our story:
-After around 1 year TTC, we were diagnosed with unexplained non-obstructive azoospermia back in March 2024. We were given 30% chances of finding sperm with MTESE but my partner decided he wanted to try all we could before moving to option B.
-We had MTESE done via NHS in August 2024 and unfortunately it was unsuccessful. We had lots of discussion before the surgery and we had agreed that we would good via donor route if the surgery wasn't successful.
-We have now been referred for a NHS funded IVF cycle using sperm donor (funded by us) and currently waiting for the clinic to call us to have implications counselling.
-In the meantime, we are currently in parallel the process of finding a suitable donor.

I’m feeling a mix of emotions right now. On one hand, I’m happy and excited that we still have a chance to become parents and the idea of a future baby brings me so much joy. But on the other hand, there’s still a lingering sadness about what we’re going through, especially when I think about what my partner is facing.

Even though I know it’s not all about genetics, who hasn’t dreamed of having a baby that looks like their partner or a blend of both of us? While I believe I’ve mostly come to terms with this, a part of me still feels a bit heartbroken.

Choosing a donor is challenging. We try not to overthink it and even find moments to joke around while browsing profiles, but there’s so much to consider. One thing that particularly worries me is the possibility of our child wanting to contact the donor when they’re an adult. What if the donor isn’t kind to them? I know this is something far off in the future and out of our control, but it’s been on my mind lately.

Sorry for my long message, I will stop now! But just thought of sharing some of my thoughts to start with!

Looking forward to hear your stories!

@Magix86 @StarJasmine93 looping you into this new thread :)

@Disco24 thanks for joining this thread! Great news that you have chosen your donor and you are almost ready to start!

Re-telling others, I also tend to share a lot, but on this occasion I am trying to be more cautious and actually I have only told one of my closest friends and our closest family. Maybe I am completely wrong, but I feel most people around me that luckily are not in our situation might not understand the path we have chosen, and the last thing I want at this moment is to feel judged by anyone or having to give any unnecessary explanations. But you are absolutely right in the fact that its our families, no one else's business really. I think maybe I still need some time to fully accept our situation and get fully detached from anyone's else opinions.

Totally agree @Blue234 and it’s what you’re comfortable with and when. I think we spoke and then thought which also might bite us in the bum later. There’s no right way to do it I don’t think 💖

Sounds like a good day for you @Blue234 ! Congratulations on choosing your donor 😊.

@Disco24 glad you joined the thread. Sounds like you will be starting soon. Hope I'm not too far behind you. I'm so impatient!! Are you trying IUI or going straight to IVF do you know? Sorry hope you don't mind me asking.

@Blue234 ah sorry I missed your news, congratulations on choosing your donor!

@StarJasmine93 yeah I’m also impatient so trying to set longer timelines in my head 😂. The nurse said around 4 weeks after my HyCoSy we should get our ‘planning / funding / final approach’ appointment to get dates of treatment etc. which would be the end of October so I’m saying if we start treatment in January that would be good!

We’re going to do IUI. My blood tests, scans and cycles are all normal so if HyCoSy is good too then they want to start there. What about yourself?

@Disco24 I find it so hard to do that!! I'm adamant I'm starting treatment within the next two cycles 😂. I feel like I must have a mark against my name at the clinic as I'm constantly calling to chase and ask for updates. When I say my first name, they say my surname back to me 🙈🙈.

So I had my HyCoSy a while back which showed everything was as it should be. They've recommended I start with IUI. We plan to do 3 cycles and then re-evaluate if they don't work. I'm still trying to get my head around IUI as I've only ever really been planning for IVF/ICSI in my head. Would be amazing to fall pregnant through IUI but out doctor said it's like 10-20% chance each cycle.

I'm hoping we are all due some luck in this hellish process though so fingers crossed for us all and we are all following in @donnie12 's footsteps with healthy pregnancies in the not so distant future 🥰

@Disco24 glad you've joined us! Congrats on choosing your donor. Same to you @Blue234 !!
It does look like we are all on fairly similar timings here which is great.

@StarJasmine93 you have to advocate for yourself though! You do right calling for sooner appointments. Worst case they’ll want you seen asap to stop you calling 😂

We’ve said the same, 3 IUI and then reassess but as you say hopefully we’ll all be pregnant by then!

@Magix86 I was saying that to my husband. It’s so nice that we’re all at a similar place to share advice and learnings.

How is everyone doing?
I have a question about taking leave for appointments and wondering how best to manage it. I'm entitled to 5 days leave "per round" for fertility treatment. Would you class a round as all the following transfers too? Or would a frozen transfer be seen as a round in itself 🤔 I took one day for my partners mtese. Our clinic is more than an hour away and I have a scan in 2 weeks at 10am. I know I'll need a day for egg collection and another for transfer. I'm wondering whether I should just take another days leave for the scan, but don't want it to take a day away from anything else I might need as I know I'll also need regular scans when we go through treatment too!
Just wondering how you have all been managing this really and if you have any advice

Hey @Magix86! Doing well thanks.

An update from us... We found ourselves with a bit of a decision to make as we have recently moved house which put us in a different area for ICB funding if we move GP. We hadn't done so yet as didn't want to muck up the funding we already had in place for IVF/ICSI.

As we now know we will be using donor, IUI has now been added to the mix and is what the clinic is recommended. Also massively appeals because it means I might not have to go through IVF.

Current ICB - 12 rounds of IUI and 1 round of IVF
New ICB - No rounds of IUI funded but will fund 2 rounds of IVF and the donor sperm needed

Everyone will have differing opinions on this but for us and what we felt was right was to go with current ICB and try IUI for a few cycles. We can then switch to our new ICB if that doesn't work and undergo up to 2 rounds of IVF with donor sperm funded.

So many decisions!!! Anyway as our original funding was for IVF we have had to apply for new funding so needed to repeat AMH for them to submit application. That's where we are up to.

@Magix86 hmmmm I'm not sure what would be counted as a round. Perhaps every embryo transfer counts as a new round? Could you ask HR? So sorry you live so far from your clinic. That sounds quite tough. Not sure what your line of work is but for me (I work remotely anyway), I just take my laptop to all my appointments and find nearby cafes to work in so I don't drain my holiday allowance. Though not sure if that would work for you.

Also so good your work allows for actual leave for fertility treatment. My husband's does the same. Mine doesn't but they also are unaware of my situation.

Anyway, hope everyone else is doing ok?

Hi @StarJasmine93 - what a difference between the 2 ICB's! It is great that you have options though, and you know what these are before you make any choices. It sounds like you've made the right decision to suit you at this time.
Hopefully your AMH won't take long. When did u last have it tested? Mine came back the same day as they fast tracked it.

It's a funny one with time off. Ideally I wouldn't want my work to know about our treatment but with the clinic being so far and all these blood tests and scans and follow ups etc I felt I needed to tell them. They've been great at allowing time off. I just don't want to waste the 5 full days of leave just for scans lol. It wouldn't be possible to work from the clinic or a local cafe unfortunately.

We've sent in our characteristics request form for our donor and I've done all my bloods. Waiting to find out my blood group before they can send us donor options. I'm also CMV negative unfortunately!! So that will limit our options even further than they already were with only going with our clinics bank. Will see what they come back with and go from there.

I know!! It's a bonus our new ICB does 2 rounds of IVF if we need it rather than our current one with only 1. I just wish our new ICB funded IUI and donor sperm rather than just IVF and donor sperm. When I quizzed the clinic as to why that was, they answered honestly with "the stats for success are lower with IUI so that's why they don't fund it so their numbers look better" 🙄. So disappointing that that's a consideration.

You definitely did the right thing telling your work with the time you need off for scans, retrievals, transfers etc. It makes me happy that some businesses cater for infertility needs.

Congrats on the progress made though!! Exciting you'll soon hear back with some donor options though. I hope there are some good ones for you that you like the sound of.

Last time I had AMH done was like a year ago and it was on the lower end for my age so I am a bit nervous for the result. We should hear back any day now. If not today then early next week.

@Magix86 so once you pick your donor, are you good to go?

Yeah it's frustrating to hear that treatments and funding offered are based on getting the best stats for the clinic! I'm sorry to hear that.
Hoping all the best for your result! I'm sure it won't have changed too much in just the last year but completely get how anxious waiting for that result can be. I had to have 3 blood tests for it because the first 2 didn't go through 😐

Thank you. Really hoping we get some options we like, otherwise we might then need to consider whether we'd want to see options for CMV positive donors. For now we're only being given negative donors.
I'm thinking it's all moving quite quickly and I'm expecting some other hurdle to get past based on previous experiences! We have counselling and my scan next week then the following week our consultation with the doctor. If we've chosen a donor by then I'm hoping we can start and there's no other issues 🙏

Hey there! sorry I have been a bit absent last weeks.
@Magix86 it is great that your employer has an IVF policy. Mine doesn't unfortunately :( Luckily my manager is been a great support and she has told me not to worry about work when we have any appointments, so I will be working flexible hours when I need. However I guess I will need to take off at least the day of the egg retrieval and the transfer. Let's see, I guess is time to really care about ourselves but I really want to avoid using much of my holiday entitlement if possible.

I am also another CMV negative lucky one😞Luckily our preferred donor was CMV negative. However I am keeping my fingers crossed that the genetic match test for me and the donor comes back OK as otherwise, choosing a new donor will be tricky. This one was the only CMV negative in our preferred list.

I had my scan last week (they did antral follicle count and AMH) and we also have the counselling next week!

@StarJasmine93 wow 12 IUI cycles is amazing! I am just surprised how different policies are depending on the area you live...In my area we are only eligible to either a IVF cycle or 1 cycle of IUI, not even both :(
It is such a joke though that their criteria for what they offer is based on stats...It is quite upsetting honestly.

Re AMH, I am also on your end, my AMH was also on the lower end for my age 1 year ago and I am quite worried about what will be the results now. However, last week they did the antral follicle count and they told me I have a good number of follicles. So the nurse told me to not to worry that much about my AMH, as with that follicle count if I respond good to the treatment there is a good chance to get a good number of eggs. This makes me feel a bit relieved but let's see how the AMH results come back.

In any case, sorry silly question, does the AMH make any different in IUI treatment? I thought this is relevant only for IVF.

Hi ladies, hope you’re all well this week 💖 How is everyone’s donor search and appointments going?

I agree @Blue234 the postcode lottery is wild! We get 6 IUI or 3 IVF so not sure what happens if we want to switch halfway through for example (I hope we don’t need to of course). 12 is amazing! It’s just mad how different each of our processes are, no wonder it’s such a minefield.

I also don’t get time off for appointments, but fortunate enough like some of you to have a bit of flex at work to take appointments.

@Blue234 I’m also not sure if AMH has an impact on IUI. I guess it may if you have a discussion around medicated or unmedicated IUI as if reserve is low they’d likely choose un medicated?

I’m still waiting my HyCoSy which is Friday, and then eagerly awaiting that doctors appointment date as the counsellor said that should be us setting the plan and putting it to action ASAP. I have no idea if funding has been done / if it needs to be, what happens next etc. UCLH are really bad with comms and never have anyone to pick up the phone so it does feel like you’re just being taken on the journey.

Any tips for the HyCoSy do let me know 💖

Hi everyone! Hope you are all doing well.

I've had some really shitty news today 😭. My AMH has declined. To the point that I don't qualify for my original ICB funding anymore. The annoying thing is, they apparently can't legally tell me the actual result until I have my appointment next Tuesday but the ICB requirement is 5.4 so I'm obviously below that which is not great at all. I'm so upset. Haven't stopped crying because I'm totally in the dark about what happens next.

I also feel like my poor husband has been through so much and now it's over to me, my body has failed us already at the first hurdle.

We are potentially super lucky that we've moved within a new ICB as that one only requires I'm under 39 which I am. But because I don't know my actual result I have no idea what we are dealing with.

@Disco24 on the HyCoSy... It's not too bad but parts of it can be quite uncomfortable. I was in a fair bit of pain afterwards when I was home so just stock up on painkillers and buy some chocolate so you can treat yourself with a nice movie and some sofa time. The pain didn't last long at all. Just wasn't too pleasant.

Oh @StarJasmine93 I’m so sorry. I can’t imagine how you’re feeling and the wait for the results is just cruel in my opinion. There’s lots of information on low AMH and successful fertility treatment so hopefully it just means a different path that still has the same result 💖

I’m just pissed off for you. Can you not get a break! And I understand what you’re saying about your body, but please try and be kind to yourself, in the way you didn’t feel that way about your husband x

Thanks @Disco24, I know you are right. Just hard to think positive when it's so raw.

The person I spoke to on the phone said there are still options and that's what will be discussed next week.

We are having a trip away this weekend so hopefully that will help take my mind off it!

I can imagine, and those feelings are all valid whatever you feel and when 💖

I’m glad they gave you the reassurance there’s still steps, and the perfect weekend for a break. I hope you have a lovely time x

@StarJasmine93 omg I am so sorry about these news!

I agree completely with @Disco24 . I cant even imagine how you must be feeling but try to be kind to yourself.

Also I have read a lot about AMH and they say that sometimes it doesnt correlate to your antral follicle count, so try not to think on the worst case scenario until you talk to your doctor.

I am sure it will be a way to move forward! Sending you a massive hug from here! 🤗This road is unfortunately full of hiccups but hopefully we will find the way🙏

Thanks @Blue234 @Disco24 ❤️❤️❤️❤️. It's great having your support xx

Ohh @StarJasmine93 I'm so sorry to see this!! Sending love your way ❤️
Just to repeat what the others have said, I've also read loads about AMH and success stories, and a lot of info on the quality of the eggs being more important than the quantity.
I really hope you have a relaxing time away this weekend.
How crap of the clinic to tell you it's low but you have to then wait until Tuesday! Definitely need to be kind to yourself during this time x

@Disco24 I've never had a HyCoSy so can't help, sorry. I hope it goes OK and you get your next appointment really soon!

@Blue234 another CMV negative! Lol. Glad you found your donor and really hoping the genetic tests are OK 🤞🏻

We were given 10 donor options yesterday. None really tick every single box for us but then I wonder what we need to prioritise in terms of compromising. We do think height is important because of my partner's height, and so we're trying to work out how important the goodwill messages and extra information about personality is. Having a lot of discussions about personality and nature vs nurture. It's so hard when we want to be happy with everything. We've ruled out the ones that basically put no message or if their info is really brief and vague.
I think I might ask for CMV positive options so we can weigh it up some more...

Thanks for your kind words @Magix86. To be honest, it's not on the clinic really. I kind of forced them into a corner because I knew they must have had my results as they said it would only take a few days and it had been over a week. I just wanted them to confirm they'd submitted for funding but of course they had to tell me they hadn't because I didn't hit the criteria. And I know what the criteria is so I know I'm under 5.4.

I probably know too much for my own good 😂.

Wow, 10 donors!!! That's amazing. I think it's so hard to pick and I totally understand and get where you are coming from with wanting someone who ticks all the boxes but from podcasts and forums I've read, I don't think the perfect donor exists. There usually has to be some sort of compromise and you just have to find the best one that suits you both at the time. Wishing you all the luck with your search and hope you find the one soon 🤞

Ahh @StarJasmine93 yeah OK that makes sense. It's so hard when you know so much, can be a blessing as well as a curse!! But it's good they have said you have options. Will be thinking of you on Tuesday.
Have you checked with your new ICB area if you need to be registered with a GP there for a certain length of time? Just because we had a long wait due to this, and wouldn't want you to experience the same.
Yeah 10 was a good number and there are 2 that we love. Everything is great apart from the height!! We could be OK to compromise on this but it is a very big difference to my partners height so we need to be sure we're OK with it.

Yeah so I checked with the clinic about having to be registered for a certain amount of time with a GP before having funding and they said it's not an issue for us as we're already patients with the assisted conception unit, it would be more if we were being referred to ACU and applying for funding together that its taken into consideration. However, I will double check this on Tuesday. Need to start writing down all my questions!

It makes me smile a bit on your concern around height because I've been the exact same. My husband is over 6 foot so I've not really been keen on donors who are a fair bit shorter than that. My husband pointed out that I am very short haha, and so even if we were having a genetic child between us, they could still end up with my short genes 😂. Not sure if that applies to you too lol. But I totally get you on the height thing. Funny the things we have to consider.

Also @StarJasmine93 just a thought, and you might have already checked, but does your funding criteria mention fsh? For our funding it says either the AMH level above 5.4 OR the FSH level below 8.9