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.

@Annies1992 sorry to hear that you find yourself here. Personally, if you are in a financial situation where you can go privately, it’s something I would recommend. We went privately alongside having an NHS referral. We had our first triage appointment with the NHS the same week that my husband was scheduled for private SSR. All in all privately, it took 9 months to go through the whole process, which was much quicker but obviously recognise not everyone is in this situation and different nhs boards work at different speeds too!

@Ljp2022 did you also do IVF privately? We’re thinking of doing private SSR and then NHS IVF. We may do private SSR at Kings if the waiting times are too long. Still thinking if it’s worth doing the SRR with Jonathan R but his prices are around £5-6k, and kings is £3k. I’m assuming it shouldn’t make too much of a difference who does the SSR.

@Annies1992 yeah we did the whole process privately. For both of us to have tests, including genetic, hormonal and ultrasound testing, followed by Ssr, egg retrieval, icsi, freeze all and then a cycle with meds was about 9-10k. I think it doesn’t matter who does the SSR based on the reason why the man has azoo - so I think only certain consultants do mtese etc. I’m not entirely sure as thankfully our clinic covered it all. Hope that makes sense?

Hello everyone, so happy to have come across this thread. Some background, husband and I have been ttc for 2.5 years, never ever had a bfp so over summer went to GP. I had all my tests done and they were fine, my husbands semen analysis wait time on the nhs was ridiculous and earliest appt is Nov so this week we went private. Tuesday we got a call telling us my husbands sample showed Azoospermia. We were both so upset as we don't know what is next. I've been in tears non stop and doesn't help that I started my period last night! A couple of questions I wanted to ask please:

1. Has anyone been in this position, would you advise following the next steps on the nhs or private?

1. For those who went private, and are in London, is there any clinic or doctor you would strongly recommend please?

Sending you all my best wishes x

@Ljp2022 yes that makes sense. We’re still waiting for the genetic testing. Did it privately. Do you know roughly how long this takes to come?

@2022ttc I know exactly how you’re feeling and it’s the worst. DH initially went to the GP and they organised the blood test to test FSH, LH and prolactin. We were also referred to Kings fertility and now just waiting.

In London the best doctors to go to are Jonathan Ramsay and Pippa Sangster (from what I have read but I think there are a few more)

the first stage would be to find out if it’s obstructive or non obstructive

@Annies1992 thank you, really appreciate your reply. Honestly this thread has lifted a load off my shoulders and I was feeling so lonely and down and not spoken to any friends or family about this as I don't understand it myself. It's so nice to speak to others who are going through the same. I hope your wait time isn't too long?

@2022ttc we have our first appt with Kings next month so I think we will find out more about timings then. But in the meantime waiting for genetic testing (scared!)). Have you made a plan on what you are doing next?

@Annies1992 we were told 8 weeks but got results around 4-6. It was a long wait!

@2022ttc so sorry to hear your story, it is such a horrible shock to the system and feeling upset is totally natural. I recently replied to Annie above about private vs nhs- I advocate for private if you can afford it just because of the speed that things happen but recognise that not everyone isn’t in a financially viable situation for this. Come back with any questions, the people on this group were amazing and got me through such a tough time x

@Ljp2022 hello, thanks for your message. Do you mind me asking how your journey is going? I started reading the thread this morning but it's quite long and between work calls been hard to keep up. Wishing all you ladies the very best, it's so reassuring to have this amazing community here. I was messaging my husband just now telling him about this thread I found and all your amazing advice.. its given us both a lot of much needed hope and courage.

Thankfully I have savings and I cannot think of anything more meaningful that I could think of spending that money on, I would give anything for the chance of my husband and I becoming parents

@2022ttc of course not!

I feel so incredibly lucky with the outcome of my journey. This thread has been going a long time so hard to keep track!

We started TTC September 2021. By March 2022 I was worried something was wrong, despite everything and everyone telling me to leave it for a year before seeking help. So we paid for a private assessment in May 2022 (more for piece of mind but boy was I wrong!) which showed everything was fine with me but my husband had azoo. We were devastated and in shock. We hadn’t even heard of azoo, so I started this thread and thank god I did because the women on here have been amazing and shared their experiences, offering the most amazing support.

At this point, we were referred by our GP to the infertility centre but we didn’t want to wait so we continued privately. My husband needed genetic and hormonal testing first. We didn’t really understand the point of this as we wanted to go straight for surgical sperm retrieval to see if there was sperm but as we learnt more, it’s because they can put you on drugs if it’s a hormonal issue before retrieval. We also arranged an appointment with an andrologist privately who did an ultrasound of his testes. This all happened around July 2022. His hormonal and genetic testing came back fine. The ultrasound wasn’t fully conclusive but they think it showed he was missing his seminal vesicles (part of the system linking testes to sperm getting out through penis).

they were fairly confident that it was obstructive azoospermia but gave us a 50/50 chance of finding sperm, which was still terrifying. He was booked in for surgical sperm retrieval end of August 2022. A few days before the retrieval, we had a call from nhs to book in our first triage appointment. At this point we turned it down because we were almost all the way through the process. Also, depending on where you live only makes you eligible for certain/amounts of IVF rounds (so also worth looking into!).

The day of the retrieval they found sperm (I couldn’t stop crying). They weren’t mobile but some were twitching. They explained that this is very normal because sperm taken directly from the testes haven’t had a chance to mature. They froze 6 viles of sperm. They then did a ‘freeze thaw’ after a couple of days to check that the sperm survived the freeze, which they did.

I was then able to start preparation for egg retrieval. I had several weeks of injections to down regulate my system, before starting on new injections to make my ovaries ‘over produce’ eggs. It was hit and miss at a few scans as I was borderline having produced too many eggs which put me at risk of ovarian hyper stimulation syndrome, however thankfully they continued with egg retrieval which happened at the end of October 2022.

They got 18 eggs, 17 of which were mature. They found a good amount of twitching sperm in one vile and completed ICSI for all 17 eggs. They had me provisionally booked in for my first transfer 3 days and 5 days after the procedure, depending on how many eggs became blastocysts and survived (they aim for day 5 procedure).

They explained that not all eggs would survive and make it to blastocysts and we should be aiming for around 30-40% to survive. 2 days after, They said we had :
6 embryos which were 8 cells
3 embryos which were 6 cells
3 embryos which were 2 cells
1 embryo which was 5 cells
At this stage they can be anywhere between 5-10 cells but the perfect amount would be 8 cells and at day 3 they would expect to lose a few so we are on track for a few making it to day 5 which is the ideal.

By day 5, we had 7 healthy blastocysts. Unfortunately, I developed ovarian hyper stimulation syndrome and felt really rough so they cancelled my first transfer and froze the blastocysts.

I started injecting again in the December 2022 after my next period and had a transfer in January 2023. I was so extremely lucky to fall pregnant and we were over the moon. I am due on Monday with a little boy 💕

this was hands down the hardest thing I have ever been through and it can feel never ending but just know that you aren’t alone! My husband and I had also started talking about sperm donors and adoption early doors, which helped because we knew regardless of how we went about it, we would have a child one day. I know this is a lot of info but hopefully something you can refer back to in your journey for next steps 💕 just remember that every case is so different though but you aren’t alone and I am so grateful every day! Xx

@Ljp2022 reading your story brought tears to my eyes. I am so happy for you and your husband and pray you have a happy and healthy baby soon! You've been through so much and deserve so much happiness!

Thank you so much for all the details it really helps, I will talk to my husband this evening and we will look to explore all the options available.

Which clinic did you go to if you don't mind me asking? Was it based in London?

Thank you so much 🥰 no we are based in Salisbury so our local one is Salisbury Fertility Centre - couldn’t fault them they were really amazing.

@Ljp2022 thanks for sharing your journey. All the best for the delivery! Did you do anything to prepare for ivf like taking supplements/exercise/diet?

@Annies1992 theres a really good book called ‘It starts with the Egg’. I’m not gonna lie, I went really OTT and I guess there’s no way to prove if it actually helped or not but I followed all the advice in the book - cut our parabens, phthalates, BPA, plastics, etc. worth a look at?

Wow @Ljp2022 its so interesting to read your story all summed up in one post. I knew most of it but seeing the highs and lows all there really does emphasise what mental and physical strength and resilience is required in all of this. I cannot believe you are due Monday. I’m so excited to hear of baby boy’s arrival so please update us and bring joy to the thread!

@Annies1992 and @2022ttc i still remember the initial azoo diagnosis like it was yesterday and I’m so sorry you are both in the processing and fact finding stage right now. It’s the worst. I think back to that time in my life and wonder how the hell I functioned. But as your journey goes on, you meet with specialists, do more testing, get more answers and get an action plan. This all helps and I found that having appointments in the calendar, blood tests etc to tick off, all helped me to mentally feel like I was in control. Someone on this thread, I think @lemons44 or @WhiskeyInTheJar33 told me that getting a folder and collating all of our test results to date is a great way of feeling control. I did just that and brought it to every appointment like a mad woman. But the three months we had to wait between diagnosis and seeing a specialist was awful. The moment we saw him, we had a plan and it all felt lighter. Having no answers is worse than having bad answers! I will also say that I found it so hard to make peace with the fact that I would always need IVF to conceive. But I’ve built and bridge on that and it’s just part of my story now.

In terms of my news.. had my frozen transfer last week and caved and tested yesterday at 8days post transfer. I really hope this doesn’t trigger anyone and instead is a tiny glimmer of hope for the azoo community but I got my first ever positive test. Obviously this is such early day and in reality, we’re telling no one but I wanted to share with you ladies as I you have seen my journey, the CF diagnosis, sperm retrieval, cancelled stims etc. I’m acutely aware everything can change in a heartbeat so I’m happy but so so cautious x

@IslaO oh Isla I am so over the moon for you! Congratulations - what a long time coming. Totally understand about being cautious until you hear the heartbeat, I was exactly the same. I think I was more anxious the first trimester than any other time. Sending a big hug to you and your Mr 🥰🥰🥰

@IslaO so pleased for you! You be so so happy, you deserve it. I'm so happy for you all. This journey is probably the hardest I've encountered. There is something which I think may make my case a little different and more difficult. My husband had cancer as a child and as a result had chemo around the kidney area. The consultant we spoke to said that it's likely the chemo permanently damaged the "good" cells and that they're not sure they'll find any sperm but I'm trying not to dwell on that and hoping and praying that there are still some sperm to be found x

@IslaO congratulations!! thats amazing news and not triggering at all. It’s so nice to hear of positive stories as it gives me hope :)

@IslaO i am SO happy for you!!! Absolutely understand the caution, I was exactly the same. I’ll be keeping everything crossed for you and I hope you get your first scan soon x

@Ljp2022 was thinking about you the other day and thought you must be close! Exciting to have our first baby on this thread! Hope all goes well. Keep us updated.

@IslaO sooo happy for you! Will keep everything crossed that it's a sticky bean! When will your first scan be?

@IslaO Such wonderful news! Enjoy every moment of your pregnancy. It's never triggering when you know that someone has struggled. It's the 'my husband looked at me and I got pregnant with twins' stories that drive me crazy! Keep the thread updated with all the milestones. Best of luck 💖

Oh @IslaO I am so happy for you 🥹 I know you wondered if this day would ever come! Sending you a huge cautious congrats and really hoping the next few weeks and months go smoothly!!

Yep it was me who gave the tip of keeping all info in a folder but I believe this tip was passed down to me by @Carla2601 ! It's such a good tip which has made its way through the azoo club and helped many of us!

@Annies1992 our case is obstructive caused by lots of scar tissue from a hydrocele surgery when my husband was a teenager. I'm glad you have an appointment with Mr Ramsay, he really is amazing and so kind and lovely.

@2022ttc I would recommend getting into the NHS system as soon as you can as the wait to see the specialists can be long. You will also need your day 3 and day 21 bloods and up to date smear test for the referral to be made. Our GP was so slow in doing these and took lots of chasing. We did all our tests privately and had a private mtese and by the time our NHS referral was made we went to the appointment with our folder full of all our test results and they basically said we had already done everything they would recommend so they applied for our IVF funding straight away. So it did save a lot of time.
I really recommend looking at your CCG/ICB IVF funding policy. If you can't find it online contact them directly and ask. It will tell you what you are eligible for and any exclusions etc.

Ah sorry @2022ttc I totally miss read your message so ignore my message!

@lemons44 no worries! Appreciate your advice.

@everyone.. how did you cope with emotions in the early days? Ive been a wreck today and been in a flood of tears with no notice every hour or so which was a nightmare with work. I just feel emotions I've never felt before and don't know what to do to console myself. I know things could change or improve but I just can't get my head around potentially never becoming a mum :(