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.

@Nats140 a second vote for Mr Ramsey, he made things so so so much better for us.

good luck

Thank you. We were absolutely devastated when they didn't find anything with the TESE operation. Really hopeful that there is still something that can be done.

@Sleeter0893 thats great news. I actually had my transfer yesterday. It feels so surreal- scary, exciting and anticlimactic all at the same time. What a negative Nelly but I just have a feeling nothing is happening… it’s going to be a long two weeks.

just scrolling through this tread and realised it’s over a year since I first reached out to you ladies. We are all such warriors, pushing on with this fight for so long while juggling work, life and everything else. I don’t know what I would have done without this thread over the last year- it has been such a safe space and place to find answers/help from others.

On a separate note, we were put in a cubicle for our transfer this week in the same room where my OH had his TESE in Feb and around us we could hear different men being wheeled back, all having had TESE surgeries themselves. My OH was stunned- he was like ‘oh my god there are other men who are getting it done?!’. It hit me that, while I reach out to others in a similar boat on this group, he has gone through the last year thinking he was unique and there was no one really like him in that respect. He got chatting to other guy in the bathroom and when I say he was buzzing after it, it’s an understatement. I really forget how different our experiences have been on this and how much this must have eaten away at his mental health and self image at times.

Does anyone have any success stories of finding any sperm after a tese failure? Finding this journey really hard and need to know that there is still hope

@Nats140 it's such a hard place to be and I probably am not the best person to advise but I know how it is to feel like you describe. I think the gold standard is micro tese so if someone has had one of those in the first instance then they wouldn't know about the results of a tese. If you see what I mean?!
I think all of us here have had times where there it has felt hopeless but a good urologist (who is micro tese experienced) will be able to best advise. There's definitely a lot of men who a tese wouldn't work for but a micro tese could and does find sperm.
We saw Pippa Sangster and she was fantastic and absolutely worth every penny and everyone who has seen Jonathan Ramsey raves about him too. So great options available and I would definitely recommend booking an appointment. They will also write letters to your fertility clinic which we found really beneficial too.

@IslaO 🤞 for a sticky baby! I just got the go ahead to have my transfer on the 19th and super excited now! I'm so glad you're DH doesn't feel so alone anymore. I know mine had a huge relief off his shoulders when they found sperm with his microTESE because now it's just a matter of beating the odds.
The two week wait must be KILLER! I'm making a baby blanket now, then will have to move on to hats and booties... I have a friend giving birth in Nov and a new nephew, so if it doesn't work out, I'll either give everything to them as gifts, or donate to a local hospital.

@IslaO fingers and toes crossed for you!!! Exciting that you've finally got to this stage! I remember you joining the group! Doesn't feel that long ago although am sure it feels like a lifetime for you! I do feel for our other halves! It must be so lonely going through it, as men don't like to talk about that stuff. My DP was soo embarrassed and felt less of a man because of it.

Good luck @IslaO - everything crossed for you!

@IslaO fingers crossed for a sticky one! My advice is to stay as busy as possible so you don’t get a chance to think of it (impossible I know!)

Hi all,
How is everyone?
Just checking in as I've been so busy with work!

Fingers crossed for you @IslaO !! 🤞🏼🤞🏼 I am so rooting that this works for you!!
Bless your husband. It must be so hard for them and I think men really struggle to talk about it. I wish there was more discussion and openness about male infertility. I think it has got better lately though with here being more TV programmes and stuff that focus on it.

@Nats140 I know it's a bit different but when my husband had his surgical sperm retrieval they tried a TESA first (needle aspiration) and couldn't find any. Then they went straight in with micro tese surgery and we got 4 vials. He has lots of scar tissue in his testicles so only certain parts of them have sperm in. This is why a micro tese has more success as it involves searching around. Has your OH had an ultrasound?

@Ljp2022 how are you doing xx

@TheFanciestPants how are you doing? I can't remember which stage you are at now xx

@lemons44 so glad you've been able to get busy with work. Don't wear yourself out! We're preparing for our first transfer on Tuesday!

@lemons44 he has had a blood test and tese and no ultrasound. We have an appointment with our fertility clinic in a few weeks. I ll ask them about the micro-tese surgery and an ultrasound

Thanks all, yes feel ready to take next steps but not sure how much more bad news we can take!

Wow @lemons44 we weren't given the option of tesa before mtese. Makes me worried that they won't find anything either and that might be the end of the road for us. Do you know why your husband has scaring tissue? Mine does in one testicle but apparently not in the other and in that one they found sperm in 20/20 places they looked

Fingers crossed for you and will be thinking of you both @IslaO @Sleeter0893 🤞🏻

Hope everyone is ok x

@lemons44 thanks for checking in. My IVF cycle was cancelled due to poor timing of stims (still feeling pretty bitter about that!) so just waiting for my AF to move onto the long protocol cycle.
Unfortunately my period is now 4 days late (normally exceptionally regular) feeling sick and no signs of showing up (did a hpt and obvs negative!). 😟 Are you going to wait until the new year to try again?

@IslaO @Sleeter0893 🤞 for some good news!

@pomdownunder1 that's so tough, definitely take time to regroup and speak to some experts to figure out the best way forwards.

@TheFanciestPants this happened to me after stims.. my period is like clockwork and ended up 12 days late. Apparently quite normal after all the meds. So sorry your cycle was cancelled. My first one was too- low response as the doctor put my dosage on the lowest thinking I would be a super responder and I really wasn’t!

Im afraid I have no news for anyone yet. I would love to bring a much needed bit of good news to the group but I’m 8days post transfer now and absolutely terrified to test. Right now I have hope and the moment I test, that hope could disappear. I was talking to a girl who was in my clinic the same day for transfer and she tested at 5 days post transfer and already has her positive but I just can’t bring myself to. I know I won’t be able to face work the same day so I will have to wait until the weekend. I will let you ladies know either way!

@TheFanciestPants I'm so sorry to hear your cycle was canceled... I know my OVF cycle wasn't canceled, but the transfer was, and that was really hard. Thankfully, we had a transfer yesterday and our embaby is snuggled up! We'll see if it sticks!

@IslaO thanks for sharing, that's reassuring (although must have been really frustrating!), quite bad they didn't mention it could happen though...
Mine was cancelled as they started stims too late and already had a dominant follicle each side on first scan, so going for long protocol next time. Hoping I am not just a terrible responder.
I messaged my clinic with my situation and symptoms (constant nausea being the main one) and they suggested coming in to double check tomorrow morning. Everything about this process is brutal 😞
I completely understand waiting to test and not being able to work the same day. I have everything crossed for you🤞🤞🤞

What a great looking embryo @Sleeter0893! Fingers crossed! 🤞🤞🤞

Ahh @IslaO I have nerves for you! I am keeping everything crossed. When is OTD?

@pomdownunder1 are they doing a TESA now instead of mtese? Our doctor said we may be able to have TESA now as she knows where the sperm is in the testicles (all at the top by the epididymus is scar tissue but bottom is ok) so it might be they feel with your OH they can go in with a needle this time round?

Sorry @TheFanciestPants ☹️☹️ before starting IVF I had no idea of how many cycles get cancelled! Fingers crossed the next round goes better for you. I still need to book the follow up for our failed round but to be honest I've just been putting it off. Going to book it soon and then will know when our next round will be. Likely December / January time.

Good luck @Sleeter0893 !!

xxxx

Hi everyone, my DH also has azoospermia :( and this forum has been so helpful. Good luck to all who have had their transfers recently! We are considering whether to do the MTESE with Kings or go privately to Jonathan Ramsay. I want the best outcome but also don’t know if it’s worth paying extra to get the same outcome. Does anyone have any experiences with MTESE at Kings fertility?

Sorry you find yourself here @Annies1992
Has he had any tests done yet such as hormone tests?
Jonathan Ramsay was supposed to do our mtese but unfortunately was off sick at the time. I would decide based on your initial tests. If they show that it is likely non obstructive then I think it's worth paying extra to have Mr Ramsay do it. If the tests show it is obstructive then I would be more likely to go for the cheaper option x

@Annies1992 sorry you find yourself here. We saw Johnathan Ramsey and he recommends kings for micro-tese (he thought we would get referred there for our NHS treatment). He said a good colleague of his Gordon Muir tends to do the micro-tese surgery there.
We ended up at Guys in the end as that's the only hospital my CCG can refer to. I've tried a couple of times to see if we can transfer our funding to kings as that's where I'd prefer to be. However we just had a successful micro-tese at guys so we're here for a little while until have used my funded rounds.

@IslaO @Sleeter0893 fingers crossed for you both! I hope it's good news 🤞🏻💕

@lemons44 his one is non obstructive. We have an appointment booked in with Ramsey next month. We have also been referred to Kings by our GP. Was your case also non obstructive?

@WhiskeyInTheJar33 that’s amazing that it was successful! All the best with your IVF, have you decided when you will start?

@Annies1992 we are just waiting for confirmation of our funding (had to reapply due to changes in the policy). Hopefully soon though.