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Azoospermia - Donor Route Support

554 replies

Blue234 · 04/09/2024 10:38

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 :)

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Magix86 · 04/09/2024 16:44

Hey @Blue234 thanks for starting this!!
In terms of sharing our story, I'll try my best, although the timeline is getting a bit blurry now lol
TTC 3years. Partner diagnosed with azoospermia a year and a half ago (AZFc - y chromosome deletion)
Waited a year for a referral for ivf because he needed to be registered with a local GP surgery for 12 months. Also had to wait for genetic counselling.
We saw andrology and he had clomid for 3 months.
Had the MTESE yesterday and was sadly unsuccessful. My partner is actually dealing with it really well.
Now going through donor route as we'd also discussed at length prior to the mtese and knew we were going to go for this if needed.
Currently waiting for implications counselling and for our local clinic to repeat our funding application to the fertility clinic to proceed with ivf with donor sperm. They've offered us follow up for 30th September and will then have to wait for funding approval.

I'm 37. Had been so worried about my AMH but had results yesterday of 16.9 so feel OK about this for now. I know my age is another factor we're concerned about so wanting to crack on as soon as possible now!
We're also going via the NHS for now.

donnie12 · 04/09/2024 20:08

Went through the donor route as well. Currently 6 months pregnant.....partner had NOA. Given just 30% chance of Mtese success plus even less that the sperm would even be usable.

Obviously sad but both happy to go the donor route....used Cryos as it has way more donor options then UK banks and you get too see adult pictures as well. Although both have brown hair, chose a donor with blond hair as was the only one we liked from the adult pics (basically the only one who looked normal).

Cost around £2k to ship it too clinic. Pretty straight forward process. NHS.funded.IVF but payed for sperm ourselves.

Still not told anyone other then 1 friend. That's the bit we are struggling with.

Blue234 · 04/09/2024 23:16

@Magix86 @donnie12 thanks for joining the thread and sharing your stories!

@donnie12 ohh so happy for you! You are almost there! How is your pregnancy going?

Re-telling people, my closest friends know about our azo problem, but haven't told anyone but our closest family that surgery didnt go well and we are going via donor route. We feel no one needs to know but us (and our kid of course) and also we don't want to feel judged or treated differently.

Hope I am wrong, but I feel that donor conception is a gray area for most of those who luckily never have seen themselves in our situation...

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Magix86 · 05/09/2024 08:36

Really glad things are going well for you @donnie12 - 6 months already!!
I'm surprised that you all are having to fund the donor sperm yourselves, but maybe that's down to individual clinics? We were told that our clinic have their own bank so we would be going from that - I'm not sure if this means we can't be so involved in the choice, but we get to fill in a characteristics form with what we would want ideally, and what we would be willing to accept. I understand this is for things like height, eye colour etc.
I'm assuming that we would have the option to go privately for the sperm if they didn't have anything suitable at the clinic.

I haven't told anyone in my family. I've told a couple of friends what we're going through but only one knows the mtese was unsuccessful. OH hasn't told anyone that it was unsuccessful either. Just seems such a hard decision to share with people but also agree that no one else really needs to know this part!

Blue234 · 05/09/2024 12:14

@Magix86 re-sperm donor, I believe it might depend where you are. Someone in the main azo thread mentioned that also NHS offered them some sperm as part of their NHS funded treatment. However, I believe they mentioned the options weren't great and in the end they purchased sperm somewhere else themselves.

In our case, they have been very clear from the beginning that the sperm is on us. The private clinic we have been referred to also have their own bank in UK. However, they shared their catalogue with us and options were very limited and we didnt like any.

We are currently looking at banks outside UK, as they offer more information about the donor and also you can see some pictures. It is still tricky though, because how the baby looks will be a lottery! But we prefer to at least be able to see a picture of the donor as a baby to get a rough idea of who we are choosing. But this all down to personal preferences of course! Some people prefer not to see pictures at all and know the bare minimum about the donor.

Btw, we watched a podcast from Emma the Embriologist some weeks before our MTESE and it really helped us to have a good overview on the topic and differences between sperm banks in UK vs abroad. Sharing the link in case you find it useful:
-

- YouTube

Enjoy the videos and music that you love, upload original content and share it all with friends, family and the world on YouTube.

https://www.youtube.com/watch?v=BLQSSj8AbEQ

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Magix86 · 05/09/2024 12:34

@Blue234 this is incredibly helpful thank you so much for sharing ❤️
I think we still have a huge amount to process! Of course we'd love a donor that shared a lot of my partners characteristics and I do worry that the clinics own options will be limited. I'm going to ask them about this, and if we're not happy with what's available whether we can pursue private options. I know a lot of people go through banks in Denmark so we need to explore how this works. I think being able to see photos is a funny one to weigh up. I wouldn't want that to change our view of what we're ultimately looking for, but then it could really help us to see it visually. If that makes sense?!
I think I also do want to know that the families they can donate to are limited. I think in the UK it's limited to 10 families but not sure what this is abroad. I don't think we'd want an anonymous donor either.
Gosh this whole thing is super complicated!!

StarJasmine93 · 05/09/2024 13:17

Thanks @Blue234 for setting up this thread! I think it will be really useful for us to learn from each other as we navigate this next step.

Our story:

Been ttc for 2 years. We first got checked out because we thought there was issues with my fertility. I had come off the pill after being on it for years and my cycles were so infrequent. Of course, these checks shown up that my husband wasn't producing sperm. 1st sample shown nothing and 2nd shown half a million immotile sperm.

I then went for further checks because of my cycle but over time it sorted itself out naturally and I have a regular 28-30 day cycle nowadays.

My husband went through all the tests and was diagnosed with unexplained NOA. He is honestly the most fit and healthy person on the planet which makes the unanswered question even more frustrating.

Anyway... Fast forward and we have the MTese (on our wedding anniversary I may add) which wasn't a success.

We've always been open to donor and so we had done a lot of research and prep in the time leading up to the MTese. We have our follow up appointment at the clinic next Tuesday where we will agree when we start treatment with donor sperm. In the meantime we are narrowing down which donor we want to go with and also have implications counselling booked in.

Choosing a donor is a very personal thing and I believe there is no right or wrong answer. Some things that need to be considered:

  • what family limit are you comfortable with
  • what physical characteristics are your must haves
  • how strict your clinic is with CMV and your own thoughts on this
  • what personality traits you want from your donor, if any
  • other criterias such as occupation, health tests etc
  • what sperm bank you can and can't use due to who your clinic works with.

Lots of podcasts out there that can help! The Male fertility podcast with Shaun who has twins through donor is really good!

@Magix86 in the UK law, you have to use a donor who can be identified

Blue234 · 05/09/2024 13:23

@Magix86 it think the most important thing is that it makes sense to you, but to no one's else :) (I am sounding as a psychologist now LOL)

I completely see your point. Pictures can be deceiving and also (sorry if I am going to sound a bit cold now) just because you choose a donor that was super cute baby or even a handsome adult doesnt mean that that you will have the most beautiful kid in the world.

To be honest, I started by shortlisting those ones that were looking supercute as a baby, preferably blue eyes, blond, etc... and having some resemblance to us (which btw in our case is being veeery tricky). But then I realized this didnt make quite sense and I was just being very superficial...Reflecting quite a lot about my preferences, I noted that the key thing is a healthy baby. And it terms of how the baby look, at least to choose someone with my husband's phenotype to at least minimize (as much as possible...) that it is too obvious that the baby is donor conceived (none of us is blond with blue eyes LOL). But as I said it is all a lottery! However, I personally dont feel comfortable not knowing at all how the donor looks. But I also admit I am a bit worried that the pictures of the donor we chose get stuck in our minds forever...

So everything has pros and cons, but what is important is that whatever you do mostly makes sense to you :)

What I am making an effort to accept is that it is impossible (or really difficult) to find the ideal candidate and probably we are never gonna be 100% sure about which one to choose. So I am trying to be mindful of it and flex a bit on my requirements. We have already shortlisted some candidates that we both agreed on. So can't wait to hopefully be able to make a decision soon and move forward. I have seen several people saying that once you choose the donor, it gets a bit "easier". So fingers crossed for us!

OP posts:
Blue234 · 05/09/2024 13:30

@StarJasmine93 thanks a lot for joining thread!

For the record, my husband's MTESE was on my birthday...Can't believe we were so unlucky to get these news on important days for us!

I completely agree with you that choosing a donor is something very personal and there is no right or wrong

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Magix86 · 05/09/2024 14:00

Ah glad you joined the new thread @StarJasmine93
Sorry you both had the mtese on special days! That's rubbish.
Thanks for sharing all this. I am laughing at your message @Blue234 when you mention the blonde hair and blue eyes 😂 I think that would be my worry about looking at pictures, I'd need to remind myself not to just choose the cute looking ones lol
At the end of the day a healthy baby is all we really want, but really hoping that the donor can match my partner in as many ways as possible.
I imagine there will never be a "perfect" match and completely agree that its a very personal decision, and no right or wrong!

In other news, the ivf clinic said they have the go ahead to seek funding for us, so we don't need to wait for our local clinic for this. They said we should be able to start everything quite soon. They've already taken my blood for the CMV test and I now need to try and find out my blood group.

Blue234 · 05/09/2024 14:21

@Magix86 glad that I made you laugh!😂Ohh thats great news from your clinic then!
I am also waiting for CMV results this is actually one of the things holding us from making a decision on the donor.

Just sharing in case you are not aware, in principle, if your are CMV negative you should find a donor which negative as well (otherwise there are some sort of risks for the baby). If you are positive it doesn't matter. However, as @StarJasmine93 this depends on the clinic.

In terms of the blood type, they told me that I dont need to know my blood type to choose a donor. I am planning to check this anyway as as of today I have no clue what is my blood type! Did they give you any difference guidance in terms of blood type when choosing a donor?

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Magix86 · 05/09/2024 14:40

@Blue234 hopefully that won't hold you up for long, they told me my blood will be sent for testing tomorrow for CMV and they will have the result on Monday.
They haven't actually explained anything about the blood group, or why it matters, just that they need this to see what matches they have available.

StarJasmine93 · 05/09/2024 20:28

So my clinic don't have rules on blood group or CMV.
This is what they said regarding CMV:

The CMV test is not actually a clinic requirement and we can take a pragmatic approach. The majority of the population are CMV positive and the risk of choosing a CMV positive donor if you are CMV negative is considered to be “miniscule” as quoted from one of our consultants. The sperm banks tests all donors for both CMV IgG and IgM. Positive IgG means that the donor has had the virus but not the active virus whilst positive IgM indicates recent and active infection. The donors would not be accepted if they have the active virus.

When I spoke to them on the phone, they said they didn't want to add more limits to what is already a very difficult decision (choosing a donor) and if we were conceiving naturally then we wouldn't be tested either.

The bit I get confused about is what kind of sperm to order! I don't know what my clinic will advise in terms of treatment. I don't really want to do IUI because it's less effective and can get expensive as it's one vial per cycle and takes a fair few cycles on average to get pregnant on average usually.

Blue234 · 06/09/2024 08:33

@StarJasmine93 thank you for sharing!

My clinic has a different guidance when it comes to CMV and they told me if I am negative I should choose a negative donor. Otherwise I can choose any.

Re- the time of straws to buy, maybe you could check which type of straws your clinic accepts for IVF and for IUI. My clinic told me they accept either washed (also referred as IUI) or unwashed straws (also referred as ICI).

In case this helps anyone, quoting from one of the sperm banks we are looking at:

-IUI sperm straws are typically used for intra-uterine insemination, the most common type of insemination. This type of donor sperm has been processed by our lab after donation to remove seminal fluid and cells - a process also known as "washing". IUI sperm can be used for insemination without further processing by your clinic.

-ICI sperm straws are unwashed, so they still contain seminal fluid and cells. ICI sperm straws can be used for ICI (Intra-Cervical Insemination) treatments, but you should not use it for IUI treatments as the injection of unwashed sperm into the uterus can cause a severe allergic reaction (anaphylactic shock). For IUI treatments, clinic washing is necessary as only sperm cells should enter the uterus.

In the Emma The Embryologist podcast I watched, she was saying that this depend on the clinic but most clinic prefers unwashed as they might do some washing anyway when they receive the straws. We are thinking of buying a mix of both (washed and unwashed) - if available for the donor we choose - in case our first cycle fails and we decide to change clinic and by any chance they only accept one type of them. This is a thought we had yesterday, not sure if makes full sense though!

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StarJasmine93 · 06/09/2024 18:51

Gosh ladies, choosing a donor is so hard. My husband and I have managed to narrow it down to 6 but my top 2 are different to his top 2 and we have no idea how to decide 😅.

Anyone reading this thread that has advice or can share their experience of how they came to a decision with their partner would be appreciated 🙏

Blue234 · 06/09/2024 22:57

@StarJasmine93 it is indeed...I doubt we will be ever 100% sure on who to choose...

I am happy to share what we have done so far in case it help somehow. We didnt have the same favourites ones initially either, but we sat down and pitched our favorites ones. Then we did a second round of search together on our fav ones and look for the ones with better medical records and with the most similar phenotype to my husband and managed to discard some of them. Then we managed to agree on three and did a further analysis highlighting the strengths and weaknesses of each of them. And luckily we have managed to agree on the preference order.

I have to say that after we discussed together I agree on some donors that had discarded immediately previously as was checking from different angle than my husband, but then I agree on his perspective.

I have read someone's story where they couldnt come to an agreement either and they decided that one of them would choose certain features and the second one would choose the others. Maybe that could be an idea.

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StarJasmine93 · 08/09/2024 17:44

Thanks @Blue234 that's helpful! I'm sure we will get there soon.

One thing that is important to us is to try and keep the family limit as low as possible but it proves to be difficult when it's only monitored by country as opposed to by donor.

We had implications counselling yesterday morning so good that's one thing ticked off the list. Was good to talk to someone else other than each other about everything going on but nothing from the session we didn't already know.

Magix86 · 10/09/2024 12:16

Hello ladies! Hope you're doing OK. I just wanted to reach out because my partner is really struggling at the moment. He was fine to begin with but I think now the realisation of the failed mtese has set in and he's started to have a lot of questions and doubts about donor sperm. He's struggling to talk to me about it and I know he has a lot of questions. I just wondered how your partners are dealing with this all? Would you share any tips or advice to help get us through this? I've spoken to him about having supportive counselling as well as the implications counselling as I think it might be helpful? I've also suggested YouTube and podcasts for him to explore the whole thing a bit more.
Our funding was apparently already approved for donor sperm so we're now booked in with the clinic for early October for a consultation.

StarJasmine93 · 10/09/2024 21:26

Sorry to hear that @Magix86. I'm not surprised he's feeling the way he does. It's a hell of a thing to go through and get your head around.

I think for us, we kind of knew that this would be our outcome so had dealt with the grief already. That's not to say we still don't find it hard and the whole situation really sad. We've coped because we are always open with each other and talk about how we are feeling.

Honestly, I can't recommend podcasts enough. The Male Fertility podcast and Test Him podcast are so good and have helped us get our heads around everything massively. My husband is also part of a WhatsApp group set up by Shaun (one of the hosts of male fertility podcast and father to donor twins). He's found that really useful because you can talk to other people going through the same thing. Pretty much what we have here!! Have you checked through your clinic what counselling you are entitled to? My husband got offered a session specifically from the andrology department based on the failed MTese but we also get 5 free through NHS for just going through assisted conception. I would recommend it... it totally helps to talk and even better it's a stranger as you feel zero judgement. Hope that somewhat helps you!!

That's good you have your funding in place already and your appointment booked. We had ours today. They are recommending we try a few cycles of IUI as I'm still young in this process they say (31) and all my fertility suggests I shouldn't have an issue falling pregnant that way. However the funding we already have in place is for IVF/ICSI so we need to apply for more funding but they said that could be quite quick. I'm desperate to get started soon but need to wait to hear from them in terms of funding and next steps. Will be calling them on Friday to see what's what.

Magix86 · 11/09/2024 08:09

@StarJasmine93 thank you for this. We actually started the YouTube video with emma the embryologist last night but he fell asleep halfway through 🤣 we spoke a bit more last night and I think he's realised that he needs to talk more about his thoughts and feelings and try to be more open.
Is the WhatsApp group free to join or do you have to pay a subscription or something? I think he'd actually really appreciate being part of something like that. We're entitled to 2 supportive sessions and unlimited implications counselling.
Great you've been seen already and have a plan! I'm not sure what area you're in or which clinic but my experience of funding was really quick so hope that's the same for you. Have you chosen your donor now?

StarJasmine93 · 11/09/2024 09:26

@Magix86 I've attached a screenshot with the WhatsApp details. It has info about the chat and how to join. All free ☺️. My husband has found it really useful. Most people on there are sufferers of Azoospermia.

So my ICB is Surrey based. Our clinic is Kingston Hospital but Andrology and Embryology needs are dealt with at Kings fertility so we basically have two clinics.

There was potential that they may fund the donor sperm which I was amazed at. Our clinic is doing some digging to find out more. Was it you who said that your clinic funded donor sperm? To my understanding it's a very limited choice right??

Azoospermia - Donor Route Support
Magix86 · 11/09/2024 10:31

@StarJasmine93 thank you - I've shared this with my partner so hoping that will give him some extra support. I really think it will help him to talk to other men with the same experience.
So yes, our donor sperm is funded. We're in Bedfordshire so might be slightly different. As far as I understand, our clinic, bourn hall, have their own sperm bank so we would be choosing from whatever they have there. I'm not sure whether there would be options to choose from a different clinic if we weren't happy with the available options tho - and whether this would also be funded, or if we'd have to pay for that.
I was surprised that you had to self fund the sperm if you're having treatment via nhs, so I'm really hoping there's an option for funding for you. Of course, you might still do this privately depending on what the options are!

StarJasmine93 · 11/09/2024 13:17

Ah I've heard really good things about Bourn Hall. It's where both hosts from The Male Fertility podcast were treated.

I had never considered having donor sperm funded as I'd always assumed you had to pay privately!! Hopefully we get more information later this week. It would be nice if the sperm bank that they fund is one of the ones we have our favourite donors 🤞🤞. Would be nice to get some good news in this whole process finally 😅

Blue234 · 11/09/2024 16:40

@Magix86 sorry to hear that your husband is struggling :( it's a quite difficult decision to make, so I think its normal to need some time to process all...Hope you both manage to figure things out🤗

@StarJasmine93 great news that you are entitled to funding for the sperm!

In our end, I have some good news to share. We have now chosen a donor and will do shortly the genetic testing (results take up to 6 weeks). So fingers crossed that results come back satisfactory and we can move on🤞

Also in the meantime the IVF clinic got the funding from NHS, so they are ready to start our IVF cycle as soon as they receive the sperm.

I dont want to have very high expectations but I am hopefully that maybe by Christmas at least we have done the egg collection🤞

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Disco24 · 11/09/2024 17:40

Hi ladies! Wow so much has happened here in just a few days, but thank you for creating a separate thread. I kept forgetting who was on a similar journey. For a reminder of where we are:

  • April 2023- Private test showed 0 sperm
  • January 2024 - NHS results confirm complete deletion of AZFa so no chance of finding sperm
  • June 2024 - first NHS appointment for myself and finding a donor
  • Today - donor chosen and purchased, sat in the freezer at UCLH. Implication counselling tomorrow, and HyCoSy in 2 weeks then ready to go! We’re at UCLH and get I believe 6 rounds of IUI / 3 IVF but did have to pay for the donor sperm.

@donnie12 i cant believe you’re already 6 months! Wow, hope it’s all going well.

Emma the embryologist is wonderful, she’s also great at answering Instagram messages if you need anything specific. I know I shared other instagrams and tips in the other thread but let me know if there’s any other questions on donor etc. Can also second the tips above with the male support, sorry your partner is struggling @Magix86

We’re both oversharers in general, and both have fragmented families so we’ve told friends and family about our journey. I more worried about strangers, but then realise it’s my family not theirs 💖