Azoospermia support, stories and timelines

[Ljp2022]

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.

@pomdownunder1 the best thing was an ice pack that could easily fit down there without too much rigidity. That and supportive underwear. Crossing everything for great results and this is such a great step to be taking!!
@lemons44 your AMH going up is great! I took CoQ10, fish oil, and prenatal vitamins for about 3 months before and during the stims and they all are supposed to help with egg quality, according to my Dr.
@IslaO 🙏 for good news today! Just remember, your first day can be drastically different from your last!
@TheFanciestPants can't wait to see what this SA looks like. Curious if it'll have gone up, down, or stayed the same.
Got a call back yesterday and have my nurse consult on the 19th to choose our FET date.. I'm just getting so impatient now 😆
Oh, just to put this out there, I know the internet says success rates for IVF fertilization should be 70-80%, apparently with MFI, fertilization rates are much lower, around 50% on average. Not sure if anyone else had heard this?

@lemons44 @Sleeter0893 @TheFanciestPants @pomdownunder1 thank you for your messages and for thinking of me today! After the disappointment of last cycle I have kept it to myself that we are starting stims again so no one knows. Getting all of the messages from you guys has been really lovely and appreciated!

@lemons44 absolute win!!! That’s amazing Amh wise- so happy to hear. Hopefully that’s the start of things lining up positively for you and it sounds like they’ve changed enough with your protocol for august to avoid repeating the same mistakes as last time. It really does sound like you were on a super low dose and could have done with a bit longer stimming. I often wonder do they just slot us in for egg retrievals on days/at times that suit the schedule of the clinic rather than what’s best per individual. They are businesses at the end of the day and I hate that they have such control over our emotions and fate!

@Sleeter0893 fantastic embryo results! Funny you should mention the fertilisation rates because this is something that’s really haunting me at the moment. Is TESE sperm less likely to fertilise or does a TESE help overcome some common sperm issues?! Then I worry about embryo quality.. oh god it’s just a minefield! I just don’t know and google doesn’t really give me any insights. Sounds like you’re doing great and have a good timeline aHead of you!

my scan went so much better this morning. Just 12 follicles last time (amh 18 and my afc pre stims was 24!) and most of the 12 were measuring less than 6mm with a low chance of becoming a viable size. Today I had 23 and a good percentage were 9mm or more so I’m happy for now. I do start calculating in my mind and thinking about drop off rates etc but I have to stop or I’ll drive myself mad!

@pomdownunder1 icepack and comfy but tight pants to hold things in place securely helped. @TheFanciestPants best of luck with the appointment and SAs. It’s just one giant puzzle to try figure out isn’t it? And the hardest part of it is the waiting!

@IslaO that's wonderful news!! I know you're not feeling terribly different, but if those 23 start growing pretty well, you might end up like me where it almost felt like my ovaries were heavy. Every step was like a bag of grapes bouncing inside of me lol
I believe the TESE rate is lower because of both. It's overcoming the fact that normal we have no chance of fertilization, and they only select one sperm to use with ICSI, so we don't get the natural selection process of strong sperm like normal IVF without ICSI, so it's just different. Getting anything is a blessing at this point!!

@IslaO that's great news, fingers crossed for an excellent clutch. 🤞🤞🤞

@Sleeter0893 yeah the first SA was so unhelpful. It basically had no information apart from 'occasional sperm' and severe oligozoospermia. Not what anyone wants to see 🙈

@lemons44 @Sleeter0893 how are you both doing?
We got two of our our genetic tests back (CF and micro deletions) and they are fine so that's a relief. Just waiting for the karyotyping one now.
The SA was more detailed than the last one but still extremely low (less than 500k) with pretty bad parameters (all were less than half of normal parameters).
I appreciate any sperm is better than none (and there are maybe 100 from each ejaculate that are fine I think!) so I will see what Dr Pippa has to say next week. Just feeling it a bit today.

Hi everyone, DH was diagnosed with azoospermia a few weeks ago :( but this chat has been super helpful. Glad to see so many success stories.

DH has his blood test booked and our gp has said she will refer us for fertility treatments after the results have come back.

our gp isn’t very helpful, so would be grateful if anyone could answer my questions:

Does anyone know if it possible to request a specific hospital for IVF/sperm retrieval for the referral?
Does the gp do the referral for male fertile treatments at the same time as ivf to the same hospital?
How long the ivf referral usually take?

Hello everyone!

so today is the day for me.. egg retrieval!

I went for my second scan (the one where they cancelled my cycle last time due to poor growth) and I had way more follicles and a lot better sizes. So much so that they have now said I will 100% be a freeze all cycle due to numbers and high oestrogen levels (11,800). I don’t mind once I get some good embryos. So nervous- in in an hour and a half. Wanted to let you ladies know as you have been there for me every step of the way.

will update you when I can ❤️

@IslaO good luck 🤞🤞🤞

@Lily1994 so I asked for a specific NHS IVF clinic for treatment (and have been referred there). It's the only one which specialises in male factor near me so I had to explain to the practice manager why I really wanted that one and then chase up a lot but we are on the list now ❤️
Even though it's male factor it is under your name (for both of you) and it really depends on your area on timings. We were told 4-6 weeks to first appointment but it looks like it will be nearer 10 🙄

Omg good luck @IslaO 💗💗 so so happy that you've had a better response this time!

Let us know how it goes - you will be fine ! It's much easier than you think xx

Hi @TheFanciestPants thanks for asking how I am.

That's amazing news that the genetic tests were ok but also that there's about 100 good sperm per ejaculate! Maybe that will mean you can go straight to IVF as you won't need any sort of TESE surgery? I know IVF still sucks as it's not the natural way though🙁

I'm really struggling mentally this week actually. I have a project at work coming up. It is the biggest project I will have had in years. I'll be managing a lot of people, with tight deadlines, lots of stress. And it's happening at the same time as my next IVF round ☹️ it's really made me feel so stressed. I know I need to put the IVF first so I have told me boss and she has reassured me that I will be supported and I'm not on my own.. which is reassuring.. but I'm just so worried about it.

I also ovulated last week and I was in agony with it. It was the ovary with my cyst that developed on my last round of IVF, which got me really thinking about whether the cyst is still there. Then I saw a thread on here about this lady who has 2 cysts and she's had a really poor response and they've told her the cysts may be affecting things. So I googled and apparently cysts can affect the IVF. This has really made me feel mixed emotions as I obviously had 10 immature eggs last time and I'm wondering if my giant cyst contributed to this poor result. Apparently they can suck up the medication so less gets to the eggs. So I've asked my clinic to scan me this week to see if the cyst is still there and they are doing this on Thursday.

@Lily1994 sorry you find yourself here ☹️
I don't know about your first two questions but with the third one, it is such a lottery.

Some people have had a really long IVF wait but once our GP made the referral we got an appointment with the fertility team in a day... then they referred us to have our funding appointment for IVF within 2 weeks. My advice is whilst your OH is having his investigations push for your GP to do your day 3 and day 21 bloods, check your smear test is up to date and get your GP to do a chlamydia test. These are all tests that you have to have for the GP to make the IVF referral. So if you have these ready to go that will really help.

@pomdownunder1 so nice to hear from you. Hope you're feeling ok about the mtese.. I know it's nerve wracking when it is coming up. I second the suggestion for supportive underwear, this really helped my OH. Also buy some gauze pads, and these can be stuffed in the tight underwear to catch any bleeding.

xxxx

@TheFanciestPants thank you, hope you get your appt soon

@lemons44 thanks for the info. Good luck on your work project but don’t stress to much. Let us know how your scan goes

Hello

Hope you don't mind me joining the thread. Our issue is not azoospermia (we think) but it is so rare it seems pointless making another thread about it 😆

My partner had surgery a few months back, they must have nicked something in the wrong place as it caused retrograde ejaculation.

We were planning to start TTC last couple of months initially, but since knowing we are going through treatment, we are now waiting till after our wedding in Oct as we thought it would be too stressful doing both at the same time.

We feel lucky in a way, that we did not try for months or years before realising something was wrong, as his condition is obvious (No semen comes out at all with climax) we knew from the onset our chances of conceiving naturally were zilch so didn't wait around and contacted clinics.

We hoped for NHS, but we were told we would be expected to try for at least 6 months before referral, which would then take a year or so after. Despite us telling them that absolutely NOTHING comes out so what is the point in 'trying'. So we have just gone private.

We are fortunate to afford a few rounds privately, but don't have unlimited finances to fund cycle after cycle so are banking quite a lot on the first rounds being successful!

The clinic we are going to has really good reviews, I'm just nervous about how uncommon our issue is, I rang two clinics and spoke to nurses who both made me explain the condition and their reaction to it made it seem like they have never dealt with this before. One's response was "so will you be using doner sperm then?" and I said "well no, there are means of getting hold of his sperm!"

Also, for our first appointment, they stated they would do a 'sperm analysis' I have left them messages asking "how?" but have not yet heard back 😂

I'm hoping that we can have IUI, that if they can get the sperm surgically and it is healthy it can be used that way. I think they will suggest ICSI though, as this seems to be the 'go to' for male infertility.

Currently assuming all is OK with me, but I will also have my checks in 3 weeks.

In the meantime, we are both dosing ourselves up with supplements to improve egg quality, sperm quality etc. it's costing a bomb!

Im hoping everything going well, we can start officially end of October. I am quite early I guess to be posting on here but I'm a big researcher and planner!

@lemons44 it's really hard, but great news your boss is so supportive. I expect you are super diligent at work so even you at 90% will do an amazing job.
Great work at advocating for yourself, everything seems so hard for some but so easy for others. It's hard not to let it get you down (I definitely struggle with other people's pregnancy announcements and then that makes me feel even worse) but we all have to keep faith it will work out.
Keeping my fingers crossed for your cycle and your cysts being resolved.
We are going to ask Dr P about what she will recommend for us, I am so grateful for there being some sperm and thank you for being so kind in your messages (some days the weight of it all is crushing). She said for lower sperm counts you can freeze a lot of samples then combine them so the embryologist can pick the best ones so that could be an option.
She said the fertility clinic we are going to (King's) was a good choice and she has trained a number of the urologists so hopefully they will look at our private notes too.
@wateringcanface I am surprised you weren't eligible for NHS funding, it all seems like such a lottery. Sorry you are here, my husband as you may have gathered has some sperm (but really not many!) but so few that none of the other groups are very helpful.

@TheFanciestPants

We would have been eligible for NHS; we are just too inpatient. They asked for us to wait for urology referral (which is expected about 7 months), which is pointless as it is an irreversible condition anyway, and then they would ask for us to try for 6 months prior to referral, and the waiting list for NHS in our area was about 13 months, so in total looking at between 18 months and 2 years. We are so desperate to start a family now, knowing I had that long to wait would just feel like putting our life on hold, so we have just bit the bullet and gone private.

I would feel a bit differently I think if there was even a small chance we could conceive naturally, but there isn't. It's been quite embarrassing to have to explain to medical professionals that 0 semen comes out when he ejaculates, it's as if they think exagerating or don't know what semen is 😂

Hi all,

keeping up with all your updates and will reply properly when I’m a bit more with it.

got 15 eggs today. Not sure how many of those are mature and will know how many fertilised tomorrow. I’m happy but I had 18 follicles over the minimum line and a few others trailing so 15 is a little lower than expected. Will see how things fertilise tomorrow. The worry is never ending!!

@IslaO 15 eggs is great news! Excited to see how many are mature. Glad all went well and spend today resting :)
@lemons44 I'm so glad you're supported at work. I know it's stressful with a new project, but also look at it as a way to distract yourself during the process too when you're not feeling amazing.
@wateringcanface I haven't heard of doing IUI after a successful TESE, as most sperm are under developed and can't function like a normal one after ejaculated. I wish you luck finding a solution that works though!!
@Lily1994 I'm sorry you find yourself in the same situation as most of us. It's disheartening, to say the least, but the fact that there is hope is great!

@Sleeter0893 thanks for your message. It’s been really difficult to process everything but trying to stay positive! We’ve booked a private consultation with Dr Pippa at the start of August so just waiting for the days to go by. Initially wanted to book Jonathan Ramsey but the wait was 8 weeks and I’m too impatient!

Hi All 😄
just doing a little check in -
@IslaO thats amazing news! Congratulations! Have all my fingers crossed for you over the next few days that you get some good embryos! Freeze all is what we did and I felt so much better about it. How are you recovering?
@lemons44 sorry to hear things are stressful at work - just be totally honest with your boss and if you need to take some time off work, just take it.
bloody ivf puts everything in perspective doesn’t it!
xxx

@Ljp2022 its so great to hear from
you! I remember you took a break over Christmas and went back for a FET. How are you feeling? You must be getting big now!!

Of the 15 eggs, 14 were mature and 9 fertilised and made day 1 embryos. It’s all so terrifying!

@lemons44 its all such a huge mental balancing act isn’t it. You were dead right to share your worries with your boss. On the plus side, I’m on holidays now and the waiting and thinking is a killer. There’s definitely worth in being busy and distracted but there’s also a balance between being busy and being stressed so I completely understand your worries.

@IslaO wow that’s amazing, congratulations! that’s such a good number to have! The five day wait is a killer 🙈 at least you have the weekend to try distract yourself! I’m doing well thanks, 30 weeks on Monday, it still doesn’t feel real at time!

@IslaO those are really incredible numbers what a great start. Keeping everything crossed the day 5 numbers are amazing too. Good luck with the wait I know it’s awful!

@IslaO i know everyone is different so not sure how helpful this is but those are fairly similar numbers to mine if that gives you any comfort. I was also disappointed with the initial harvest number but then when the maturity rate was good I felt a lot better!

@Ljp2022 30 weeks!! I bet there were many days when you never envisaged that this would be you. Honestly, i often remind myself of you and @Carla2601 and the success stories keep me doing!

@Carla2601 really?! If they are similar to your numbers I will take that. I’m getting myself in a bit of a tizzy thinking ok, 9 fertilised out of 14.. that’s only 65%.. that’s lower than average.. oh god 😂 but the rational side of my brain has to just repeat that we have 9 to work with and breathe! How are you getting on? X

@IslaO so amazing, I have a great feeling about it and will be thinking of you!

@lemons44 hope you're ok. It's so stressful isn't it, and no one really gets it. So look after yourself and lean on co-workers. Ivf is more important and so is your health 💕

Thanks for the advice ladies. God knows how I'll stay sane for the next week x

@IslaO that's AMAZING NEWS!! So happy that this cycle is going sooo much better for you. I'm keeping everything crossed for you for the next few days.

@Ljp2022 it's so lovely to hear from you 💗 30 weeks already! That's gone crazy quick! Agree with @IslaO it's so lovely to have our success stories in the group.

@Lily1994 glad u have a consultation booked with Dr P, and the start of August isn't that long away I hope it goes quickly for you!

@wateringcanface can you check your CCG/ICB policy on IVF criteria? Ours has a line that says 'Couples with a known clinical cause of absolute infertility which precludes any
possibility of natural conception, and who meet other eligibility criteria, will have
immediate access to NHS funded assisted reproduction services'
It's ridiculous that you are being expected to try for 6 months! Although appreciate you want to get going and if the NHS has a long waiting list in your area then going private makes sense.

I second what @Sleeter0893 said though, my understanding is surgically extracted sperm can't swim, so it will only ever be able to be used in ICSI

xx