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Original poster

Azoospermia support, stories and timelines

991 replies

Ljp2022 · 29/05/2022 19:40

Hi All,
Hoping to get a chat going with some advice. My husband and I started TTC 9 months ago but had an inkling something was wrong. We had a private fertility assessment which showed he had no sperm in his semen (azoospermia). We are incredibly overwhelmed and shocked but are keen to explore further testing.

We have gone to our GP however he has explained the wait will likely be several months until we are seen in infertility clinic. We have therefore decided to go privately. My husband has had blood tests for genetic testing and hormones this week (not sure how long it will be until we get results?) and he has a urology appointment in a month’s time for a physical exam.

Id be so grateful if people can share their experiences of azoospermia, outcomes, success stories, other options explored, tests but also timelines if private? How long does it take for tests to come back? How long until he has his sperm retrieval test? What’s next and how long?

sorry for all the questions - so overwhelmed and no one seems to have any answers…thank you in advance.

OP posts:
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lemons44 · 02/05/2023 09:59

Of our 13 eggs, 10 were immature. Of the 3 that were mature the 3 fertilised. They only needed one vial of sperm.
I'm so confused. Why would 10 be immature? I'm 33 and my AMH is 14. ☹️
They are going to call me later with more details. It's good news about the sperm aspect I guess as all 3 fertilised so I am relieved about that!

pomdownunder1 · 02/05/2023 12:25

lemons44 · 02/05/2023 09:59

Of our 13 eggs, 10 were immature. Of the 3 that were mature the 3 fertilised. They only needed one vial of sperm.
I'm so confused. Why would 10 be immature? I'm 33 and my AMH is 14. ☹️
They are going to call me later with more details. It's good news about the sperm aspect I guess as all 3 fertilised so I am relieved about that!

@lemons44 hope you're feeling ok! I can understand you're disappointment at the 10 immature but a big drop off is very normal for fertilisation. 3 being fertilised is amazing and I'll be thinking of you during the next few days! Xxx

Carla2601 · 02/05/2023 18:14

@lemons44 3 is really great well done you!! How are you feeling now? Totally understand that must have been a shock with the immature numbers but if you can focus on those 3 lil fertilised ones for the next 5 days, I’ll be hoping they all do some great growing for you!

When you have your review you could always ask if they know why? My understanding is most there’d always be some immature ones but i don’t think it would be your age or AMH i think it’s more timing isn’t it? I’m not remotely medical so that’s just what I thought

IslaO · 02/05/2023 19:28

@lemons44 im so sorry- I didn’t get any email to say this thread had been updated! I echo the above- I completely empathise with the initial shock of 13 down to 3 but the fact that all 3 fertilised is amazing. It also attests to the quality of the sperm in a way too doesn’t it? You have three little embryos now and all we can do is hope that they continue to grow. I agree with @Carla2601 , a good chat at the review about why do many were immature would be worthwhile. Hopefully you don’t have to do stims ever again but at least if it was down to protocol, it’s something easily rectifiable. Were you in work today? Will they call you with an update tomorrow or just day 3? X

IslaO · 02/05/2023 19:29

@lemons44 also just saw they only used one vial- that’s amazing!!

Carla2601 · 02/05/2023 22:45

@lemons44 agree completely with @IslaO the fact that all the mature ones fertilised is a really great sign of the quality of both the sperm and the eggs I would have thought. that’s normally a fairly big drop off point so to get 100% is amazing!

lemons44 · 03/05/2023 11:15

Thank you girls.

The clinic rang today on day 2.

Of our three fertilised mature eggs, one embryo has not divided. The other two have divided and are where they should be for day 2. One has divided into two cells the other into three cells.

They want me to come in for a day 3 transfer tomorrow at 11am and they will transfer the best looking one.

IslaO · 03/05/2023 15:10

@lemons44 this is very exciting but I know you will be completely shrouded with anxiety. It’s inevitable but this is super exciting and after so many months of no movement or progress, it all seems to be happening for you now. Did they always plan on a day 3 transfer? I’m not even sure that’s an option in my clinic but going to ask. It’s so great to hear two are dividing nicely, I’m so happy for you!! X

WhiskeyInTheJar33 · 03/05/2023 15:23

@lemons44 3 embryo's is fantastic! So happy for you. And fingers crossed for your transfer tomorrow. The safest place for them to be is in you. Are they still monitoring the 3rd one to see if its just progressing at a slower rate than the others?

Update from me... some slightly more positive news! (i think). My clinic told me I would get a response within 4-6 weeks regarding the funding. I emailed them last week (at 8 weeks) to see if they had heard, they didn't respond! So chased again this morning and they've confirmed funding has been approved for both the micro-tese (+storage) and IVF!!! Soo happy we will get 1-2 rounds (up to 4 transfers) on NHS despite my CCG not covering NOA. Whilst I am over the moon we have funding, I'd rather not stay at my clinic given all the issues we have had, but I'm trying to concentrate on the positive at the moment. Feel like we can progress now! DP is on the waiting list for a micro-tese, so hoping to have that around August/September and in the meantime he is on Anastrazole (so hoping this will help again). We've been in what feels like limbo for the last 2 years, I feel like we are closer to the next steps in finally starting IVF!

lemons44 · 03/05/2023 18:56

Thank you @IslaO and @WhiskeyInTheJar33
A day 5 transfer is best but our clinic won't try for a day 5 transfer unless you have 4 embryos, as there's a chance you lose some along the way. So because we only have 2 little embryos they won't risk us waiting until day 5 in case we lose both.

@WhiskeyInTheJar33 that is such amazing news about the funding! U must be thrilled! Soooo happy the clinic are finally making progress for you. Now you have more of a timeline to work towards I think it will really help with the mental side of things are you're not in as much limbo now.

@IslaO how is your OH healing?

Hope everybody is ok xx

Carla2601 · 03/05/2023 23:29

@lemons44 im not sure I know what to say to you - I can imagine you have very mixed emotions and I’m sorry it hasn’t been the straight forward process you so deserved it to be, and so so so hopeful for your transfer tomorrow. Cheering you on from here x

IslaO · 04/05/2023 06:37

@WhiskeyInTheJar33 that is so great about your funding and it’s about time they got their act together so thrilled for you and OH. Annoying about your current clinic- are you tied to them now or do you have the freedom to move? Excuse my ignorance- not sure how the NHS works in this sense.

@lemons44 thinking of you today and hoping you get great news about your two little embabies and how they are dividing. I know it will be hard for you but this could be the first day of a very exciting and longed for journey so wishing you the absolute best of luck. In a few hours you will be PUPO! Sending all the luck and positive energy your way.

WhiskeyInTheJar33 · 04/05/2023 07:26

@lemons44 that makes sense. Good luck for today, hope all goes well!

I definately think it will help knowing we have a timeframe now and give us something to work towards. The clinic have only looked at DP so far so I'm hoping we don't have many issues with me!

@IslaO the clinic i wanted to transfer to said they only accept funding from certain ccg's and mine isn't one of them. Annoying the borough next to ours would be included and if i'd registered with a GP from my parents address then we could go there. However their ivf policy only includes 1 cycle whereas my ccg allows 2 cycles or 4 transfers. So I decided to stay put. Its all swings and roundabouts!

IslaO · 05/05/2023 12:32

@WhiskeyInTheJar33 ah I understand. It’s all a bit of give and take but getting all that funding is no mean feat so well done for not giving up!

@lemons44 dont want to pester you but have been thinking of you and hope yesterday went well. The waiting game from here will be hard but just go easy on yourself and try plan in things you enjoy ❤️

lemons44 · 05/05/2023 13:09

Hi @IslaO thank you for thinking of me 💗 it has certainly been an eventful few days!

As of yesterday (day 3) we had two little embryos. We decided to have the best one transferred into me yesterday as a day 3 embryo and we are giving the other embryo a chance to see if it survives to a blastocyst on day 5, which is Saturday (tomorrow)🤞🏼 it was a gamble as we could have frozen the second one on day 3 but decided to see if it will go to day 5, even though we may lose it.

How are you doing? Xx

IslaO · 06/05/2023 09:10

@lemons44 that is exciting! I hope the report today is a good one and that will allow you to ease into this awful tww a little more. But even if the news today isn’t what you want, they were two different embryos so that doesn’t say anything definitive about the one that was transferred.

we are doing ok. Set for estrogen tablets mid/late May and then retrieval mid June. Typically, June is shaping up to be such a busy month but I’m going to have to be selfish and turn down plans and invitations. The hard part is making excuses. Do many people know you have transferred? I find I really need to talk but so many just don’t understand and then I regret telling them. I also feel that infertility has robbed us of so much and I would really like to surprise family with an announcement rather than them messaging 10 days post transfer saying ‘well?’. I’m also getting ahead of myself because as of yet we have zero eggs so I need to reign it in and take it one step at a time. Step 1- don’t be a complete psycho on stims 😂

lemons44 · 06/05/2023 10:00

Thank you @IslaO unfortunately our second embryo didn't make it so we have this one chance this round 💗🤞🏼

100% be prepared to put yourself first when you start as you may need more rest than normal and need to look after yourself. The only people who know about our ET are our very immediate family and my 2 best friends. Work know we are having IVF but I haven't specifically said we have had a transfer I am just vague and say I need a medical procedure for my IVF. I'm glad our family and my friends know though as they've been providing emotional support, which has been needed. It won't be long and you will be starting before you know it. Very exciting for you xx

BabyST · 08/05/2023 18:48

Hello all,
I am new to this threat thanks to @lemons44 for pointing me in the direction.

My story is:
My now 21 year old son was diagnosed with Kilnfelter Syndrome in 2019, and had Micro-TESE on both testicles in 2021. They retrieved 5 sperm, 4 of which are advised to be potentially good for IVF or similar. At the time he was single and wanted it done as a precaution due to the testosterone, LSH and FSH not he lower side and slightly out of normal. Since then we have had regular contact with the Endocrinology team with the NHS and the sperm is frozen.

We as a family are on this journey together. He has been advised to have testosterone gel but the risk is of thicking his blood and we have a family history of cardiovascular disease this is his choice, not ours as parents. We just want what's best. He is losing his hair, has low body mass and is 65-70KG. He is now in a long-term relationship and trying to plan his future with kids we are looking at the potential of going about a second micro-TESE surgery to have more than 4 chances. His girlfriend also has Endometriosis which will be another factor when it comes to trying IVF or similar. I feel the odds are well up against them both.

We are not sure what is ahead of us and when. We do have friends currently going through the process and just finished gathering their eggs.

donnie12 · 08/05/2023 22:46

@BabyST I'd strongly recommend your son doesn't take testosterone treatment as it will completely ruin his fertility unless he takes HcG with it which is very expensive and the NHS won't prescribe it.

He is 21 so a baby still. Within the next 10 years there could be great advances in technology that could help your son become fertile again. They have already started trialing 3D printing sperm for azoospermia men in France which is about 5 years away from being adapted. The fact they have retrieved sperm his good news. I'd speak to someone like Channa Jayasena who is the best male fertility Endocrinologist in the UK who can prescribe hormonal treatment like HcG which will increase his testosterone and increase his fertility chances. DO NOT take TRT if he plans to become fertile especially as I said at such a young age when who knows what could happen in the next 10 years

Good Luck.

BabyST · 08/05/2023 22:53

@donnie12 thank you. Currently he has no intention to take TRT due to the risks of cardiovascular disease and blood thickening risks. I’ll mention this to him. He will have a read of the threat tomorrow

IslaO · 09/05/2023 06:30

@BabyST im so sorry you’re going through this as a family. I can only imagine how you feel as a mum- wanting to solve all his problems before they even arise and feeling frustrated and sad when you can’t. But as Donnie said, he is so young! Ten/fifteen years ago, we would have been at the end of the road in terms of trying to conceive but here in 2023 we now have options and I believe he will too when he’s ready. I understand the need to feel like you’re being proactive. Would you meet with Jonathan Ramsey to get advice? It could be money very well spent and present you with options you didn’t know you had. Please also reaching out to a guy on Instagram who is so unbelievablely lovely to chat with called prettyflyforxxy. I’ll link his profile below. His name is Gareth and him and his wife are just wonderful and I know he would be only too happy to chat with you or your son:

https://instagram.com/prettyfly4xxy?igshid=NTc4MTIwNjQ2YQ==

BabyST · 09/05/2023 09:02

@IslaO thank you. I think it’s incredibly frustrating to be on a journey where in life not many people are knowingly diagnosed until they try and have kids but we are so humble we know and he has already had micro-TESE surgery but only 4 viable sperm were recovered. 5 in total one is dead in the water I think.

ill have a look at that Link and we are also going to get a referral to Mr Ramsey for a review.

BabyST · 09/05/2023 09:54

@MaleInfertilityhelp thanks. He had his surgery at Hammersmith (Imperial Heath) we thought we know a bit but turns out we didn’t know much at all

MaleInfertilityhelp · 09/05/2023 10:48

If your son got 4 vials that’s amazing! Success rate for KF men only 28% and numbers are generally very low. Get seen by a team who understand and can reassure you all as a family- this is provided in excellent NHS clinics