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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

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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StarJasmine93 · 06/11/2024 12:50

Oops sorry @Magix86 😅 tagged the wrong person in my response.

Thanks @Blue234 for the explanation! Will see what they say next week 🤞🤞🤞

Disco24 · 06/11/2024 13:05

@Blue234 I'm glad you’re feeling a bit better, it’s such a rollercoaster! That sounds exciting for your appointment, and similar to what we had Monday. Laying everything out so you can start which is exciting!

I’ve also done research on exercise as I workout 5/6 times a week and want to keep my head right in this process! No one has told me not to yet when I’ve asked, but they do say to bring down the impact in the first half of your cycle. Encourage walking, yoga, gentle movement, but I’ll confirm this at the end of the month.

Blue234 · 06/11/2024 13:06

@Magix86 i completely understand you! I am saying these things easily as I am not in meds yet, but once I start i am sure i will get paranoid with everything as well!

Everyone says that the most important thing is to try to continue with your normal life and relax. But obviously this is easier said than done...

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StarJasmine93 · 07/11/2024 09:54

Ladies!!! Coffee alternative recommendation!!

I've just discovered this Whole Earth coffee alternative drink. Genuinely tastes exactly like coffee but is all natural. You can see the ingredients here: https://www.hollandandbarrett.com/shop/brands/whole-earth/

I know we are all trying to cut out or cut down caffeine and having lots of decaf isn't great either because it's processed. If you are a bit of a coffee fiend like me, Whole Earth is worth a go!

Magix86 · 07/11/2024 13:31

@StarJasmine93 thank you!! Definitely going to check this out 😄

Disco24 · 07/11/2024 14:09

Ooo thank you @StarJasmine93 I’ll take a look.

Regarding being more relaxed, I had my second acupuncture, and wow really felt it this time. Felt like I was stuck to the bed I was so relaxed. I know it’s such a luxury but it did make me realise I probably should spend more time having time out, not just sat in front of the TV to chill.

Magix86 · 08/11/2024 08:18

@Disco24 I had acupuncture last night and I always feel really heavy when I try to get off the bed! I think it really does relax me. I stopped going for a few weeks because I started questioning how much it really helps for fertility, and the cost was really adding up!! But decided I'll continue now throughout this treatment cycle - after having it regularly for several months I also thought my body would "miss it" and might undo anything good it's been doing. I do find it hard when there's no way to prove if something is doing any good or not tho.

I started norethisterone yesterday and I feel I might be in for a rough ride lol. Had a headache all evening and also started feeling sick 😞 I'm glad it's only 11 days!

Disco24 · 08/11/2024 11:43

Ah @Magix86 I didn't realise you had started it too. I'm the same, not sure if it is helping fertility, but happy to give it a go to help manage stress and for the first cycle. I totally understand not knowing if there's proof though!

Oh no! Is there a long list of side effects? Did they say any ways to reduce them? I'm also happy for you it's not for too long!

I'm worried about Clomid side effects, a colleague has already said it made her into a monster, she had to have a sign on the fridge saying 'It's not you, it's the medication' 😅.

Magix86 · 08/11/2024 12:13

@Disco24 🤣 that's hilarious about the sign on the fridge! My partner was on clomid for 3 months but he didn't really mention any side effects. I wonder if it's different for men vs women but he was fine on it. His emotions have always been really up and down but we think it's his low testosterone causing it.

I've been having acupuncture since March! Didn't realise it was so long lol. I started it because my fsh was initially too high for a referral to the fertility clinic and I'd read it could help. I do wonder if it has, because my fsh was 9.2 in February, and then recently in October it was 4!

For the tablets/side effects, I'm just trying to drink a lot more water and hope it was just getting used to the tablets that maybe today will be better. I'm taking them 3 times a day so trying to space them out as best I can

Disco24 · 08/11/2024 12:28

Woww that's amazing you've had it so long, but it really does add up as a cost doesn't it! The fact your FSH dropped maybe does show it works. Having that time for yourself shouldn't go unnoticed either.

And interesting to hear about your partner. I assume like most medication it will affect us all slightly differently. Good idea about spacing them out too. Does it feel exciting to have started?

Magix86 · 08/11/2024 12:33

Yeah, I'm gonna continue weekly until the cycle is done then I think I'll stop as can't justify the ongoing expense! It feels really good to have started yes, and I'm crossing the days off my treatment schedule/calendar now 😄

Blue234 · 11/11/2024 21:10

Hey there! Hope you are all doing well.
Just wanted to give you an update on my nurse planning appointment.
-We weren't told much that we didn't know already. However it was a nice surprise that they told us that meds will be funded by NHS which was great news, as I really thought we would need to pay for them.
-They gave us as estimated date for egg collection 6th of January. However, I really think this date is incorrect, as I need to be injecting for around 6 weeks and according to my next period date, then collection should be more towards the end of January.
-Regarding protocol, I will be following the long protocol which they believe will give us a better chance of being successful given my low AMH. From day 21 of my next cycle, I will be injecting buserelin for around 4 weeks (this is the downregulation phase), and then, adding ovaleap for another 2 weeks until egg collection (this is the stimulation phase). To my surprise, I also will need to put progesterone suppositories during these 2 weeks 3 times a day and if the embryo implants, I will need to continue for up to 6 weeks. Not quite pleasant! I am currently more worried about this than about the injections😂
-They to mention that during downregulation i will most likely experience menopause symptoms (hot flushes, headache...). Not very nice Xmas break ahead for me :(
-They explained how to inject the meds. Our appointment was via videocall though, so we might pop in the clinic at some point for a demo in person.
-@Magix86 I asked her about exercise during the cycle She told me that during downregulation I can exercise as I usually do. However, when I get to the stimulation phase you need to be mindful of which type of exercise you do as, as your ovaries will grow, there is a risk of ovarian torsion if you do any "extreme" movements. Once you have the embryo transferred, she said the only exercise they recommend is walking. However, following a positive pregnancy test, she said that exercise must be resumed. She said that exercise doesn't cause miscarriage (this a very common misconception) but it is really beneficial for pregnancy.

I can't think of anything else that they told me that could be useful for you girls as well! But please feel free to ask me anything else :)

Now just waiting for my period to come, hopefully in around 1 week (fingers crossed!). So I most likely I will be starting injections in December

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Magix86 · 11/11/2024 21:24

@Blue234 thanks for sharing your update - how are you feeling now you have a starting point?
I'll also be on ovaleap so can let you know how it goes 🙂 I had a face to face appointment to go through the injections and although the nurse went through it all really quickly, it was helpful to see it done in person. My norethisterone has caused a lot of spots and regular nausea but otherwise doing OK!
I don't start the pessaries until after egg collection but I think that's because of short protocol vs long. I have read from quite a lot of people that they are better when you use them rectally as there's no "mess" that way 😅 I'm also feeling a bit anxious about them, especially as we planned a holiday during the time I need them lol.
Thank you so much for the info on exercise, that's so helpful to know! I'm going to have to change my plans for stims phase I think, so I can take it a bit easier.

StarJasmine93 · 11/11/2024 22:45

Hey @Blue234 ! That's great you had your appointment and that you now have your plan ❤️. It sounds pretty intense... A lot of drugs over a longer period of time but if it's the best option due to AMH, then it will be worth it. How you feeling about it all?
I'm assuming I'll be on a similar protocol as you. Literally counting down the days until my appointment on Thursday 😁.

Thanks for sharing the information regarding exercise too. That's really useful. x

Infertilityshokck · 12/11/2024 17:59

Hi all,

I have watched this thread for a little while and thought I should join in!

Long story short, after two years of testing and a Klinefelters diagnosis for my partner, we are going down the donor route and are very lucky to have NHS funding for treatment. They want to start with IUI before looking at IVF and we are hoping to start treatment in spring next year.

I know this is all a personal choice but I wondered how you found your donor selection? The bit that's causing me anxiety is all the genetic testing, as it seems everyone is a carrier and not having much luck finding one that doesn't require me to have genetic testing done or hits that 1/70 threshold. I'm CMV negative as well so that reduces our pool a little. Sometimes I can be rational about it and remember that people who have children via the 'normal' route don't know any of this information unless it's a known condition and then I get all stressed researching any genes that come back as lower than 1/70, all whilst trying to match my partners characteristics which is important to him. Of course ultimately a healthy child is the best option but it's hard when you are presented with information you wouldnt have necessarily known if you didn't go down this route.

Sorry for the ramble. Overall I am generally positive about our situation now but this has thrown me a little! It's also so nice to read positives stories out of a very difficult situation for people!

Blue234 · 12/11/2024 20:06

@StarJasmine93 @Magix86 I am feeling ok for now but I think I will get anxious when the time comes! Thanks for asking!🫶

@StarJasmine93 all the best with your nurse appointment! Please keep up posted!

@Magix86 sorry to hear about the side effects you are facing :( hope it gets better!

@Infertilityshokck welcome! and thanks for sharing your story🤗. I found the donor selection quite overwhelming. I know exactly what you mean about genetics...we want the perfect choice and perfection doesnt exist!
Not sure if you are looking at banks in uk or abroad. We used one abroad as they offer more details about the donor and in our chosen one, we had access to the medical history up to the donors grandparents generation. I remember watching this video that really helped me when I was browsing donor profiles

__ We also did genetic match testing with the donor to minimize any risks.

In my experience, the process gets a bit smoother after doing a couple of rounds of donor selection and identifying which areas are more important to you. When I started looking at donor I was looking for the perfect one ticking all boxes. But with time I managed to find out what was more important for us and where we could make a compromise.

Hope it helps you somehow!

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StarJasmine93 · 12/11/2024 21:11

Welcome @Infertilityshokck !

Yes I also found the donor selection process hugely overwhelming. I was also really shocked how in demand donors were and how quickly the "good ones" got snapped up.

There is no right or wrong way in choosing a donor. Just what is right for you and your partner. For us, controlling the family limit was extremely important to us so that lead us to UK banks that don't export as then you know the limit shouldn't surpass 10 families... Or even less if the donors have opted to only help a certain amount of families.

Regarding CMV and genetic testing... Our clinic didn't have any rules on this. Of course if the donor is a carrier of something, my clinic would recommend I was tested for it too. But they said risks were quite minimal with CMV and it's not something you would know if you were conceiving naturally. However, with all of that said luckily our donor was CMV negative and had a very clean health profile 🙌.

I found listening to podcasts like paths to parenthood helped me. Also just writing down our criteria in order of importance and speaking to all the banks to understand how they all work etc.

Magix86 · 12/11/2024 21:16

Hi @Infertilityshokck - sorry you find yourself here but pleased you've messaged 😊 sounds like you've had a long journey.
Choosing a donor is a really personal decision and everyone will have different views. For me and my partner we went with the sperm bank at our ivf clinic - funded via nhs and also there and available pretty much straight away. This reduced the amount of options we had initially. I'm also cmv negative but our chosen donor is cmv positive. After reading up about it and also speaking with our embryologist we realised it's not too much of an issue - the donor is tested when they donate and not allowed to if they have an 'active' infection. So it's very unlikely you'll get cmv from the sperm itself. From what I understood you're more likely to get it from a crowded bus or your partner etc. Our clinic is also stopping testing for cmv status as they haven't seen it cause any issues before.
We also wanted a UK sperm bank because we wanted the 10 family limit that most clinics abroad don't have - we wanted to try and limit the amount of possible donor siblings.
For the genetic testing, we didn't get given much information to be honest. I imagine you get more info and more testing if you go abroad or use a bigger bank. We got just a list of known health issues. In the end we chose someone with no health issues noted but also a briefer pen portrait. There were 2 other donors that I loved - their pen portrait really connected with me. But we discounted them based on the medical info. Like @Blue234 says, perfection isnt really possible and we compromised quite a bit.
I think sometimes the more info you have the harder it can be! And choosing a donor with no medical issues doesn't necessarily mean you'll have a healthy baby with no problems. And vice versa! We don't know our future or any illnesses we may get so we're just trusting in the process and hoping for the best.
I really hope that helps and hasn't made things even more confusing for you!
I will add that implications counselling was really helpful for us - so I'd recommend seeing if you can book that in as soon as you can.
There's so much more I could share or say so please feel free to ask anything x

Magix86 · 12/11/2024 21:21

For anyone that might be interested I've also ordered a book called 'three makes baby' - yet to read it but have heard good things!
@StarJasmine93 will be thinking of you on Thursday! Hope it all goes well 🙏

StarJasmine93 · 12/11/2024 22:57

@Magix86 yes I was actually thinking about this book the other day! You've reminded me to order it. Going to do it now 🙂. Thanks!!

StarJasmine93 · 14/11/2024 22:56

Hello everyone! Hope you've all had a good day.

So we had our appointment today and got our plan 😊.

I will also be on a long protocol. The plan is, from day 1 of my next period I start taking the contraceptive pill (seems so silly doesn't it?! I really dislike the pill as well but I'll put my differences aside for this process 🙃). I take that pretty much for the month of December and then I move onto Suprecur injections for 2 weeks to start the down regs. I have a scan to check it's worked and if it has then I move onto stims (Menotropin) for another 1-2 weeks and then all going well with that I'll have egg collection towards the end of January. Then it's pessaries after that 👀😬.

Very excited to finally have a plan! Whilst we aren't starting proper treatment until January, taking the pill from early December will at least make me feel like we are starting something 🙃.

Blue234 · 15/11/2024 06:49

@StarJasmine93 glad to hear that your appointment went well and you have finally your plan! Things are moving forward and thats great news 🤗

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Disco24 · 15/11/2024 07:22

Yayy @StarJasmine93 congratulations. Getting a plan felt like such a milestone, so I’m glad everything is kicking off for you.

@Magix86 let us know about the book! I’ve had it on my radar for a while but not looked into it much.

And welcome @Infertilityshokck, do keep us updated 💖

Magix86 · 15/11/2024 09:00

@StarJasmine93 really happy you have your plan! I totally get you with feeling like you're starting things. I've broken my plan down into really small phases which helps me to feel it's going quicker - 3 days left of contraceptive pill, 5 day break, 5 days of stims, then a scan etc.
And I printed our schedule off and cross off the days when done.

@Disco24 I will do! I've only read the intro so far so not too much to say yet lol.

StarJasmine93 · 15/11/2024 09:21

Thanks ladies! Very exciting indeed.

@Magix86 that's such a good idea printing it out to cross off the days! I'm going to do that 😀.

Haha I've also just read the intro!!