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.

@IslaO wow that must be a relief to know the cause. I think that means the sperm will be there in the testicles and can be removed simply with a needle aspiration. There's a lovely lady on the other TTC thread I'm on whose DH had the exact same and she's now 33 weeks pregnant!

Do they know if it is a random lack of vas or is it related to the CF gene?

If the consultant didn't mention the varicocele I wouldn't worry too much about it. I am sure if they felt it was possible related to the azoospermia they would have said at the appointment.

I'm ok. Now just have to wait a few weeks for the embryologist report to find out about our sperm which has got me a bit fed up as i still don't get why. My only guess is they are doing a sperm DNA frag test, which I believe takes 2 weeks. Or they are testing the biopsy for testicle failure like sertoli-cell only syndrome. I am just trying to relax and remember that the consultant did say it was good news, that they have found sperm.. and not let this wait freak me out.

@IslaO must be so nice to have an answer. That’s a good sign that they’re likely to find sperm in the Ssr isn’t it? Do you know how long until next step for you?
I started injecting myself again a little over a week ago, ready for first embryo transfer in Jan, which is exciting but also nerve racking!

Hi girls just a quick update.

The consultant emailed us. She said we have enough sperm for 2-4 rounds of ICSI. She said the clinic will know more about the quality once each vial is thawed and they can see the specimen directly hence 2-4 rounds because if a thawed vial is not suitable they will have to thaw another.

She said it is obstructive, caused by a blockage at the top part of the testis, likely caused by an infection. Me and DH were googling about his hydrocele that he needed surgery for when he was 18. Hydroceles can be caused by infections! So it does all add up.

I feel relieved that we have some more answers.

@IslaO how are you and your OH feeling today? What is your next step? Are you booking in the SSR?

@Ljp2022 that is so exciting that you're getting ready for transfer. I would imagine it is nerve wracking. That's the tough thing I am realising about this journey.. every step is full of waiting and nerves! We have an appointment with a clinic next week to start discussing ICSI. When I had my initial fertility tests I had a really thin lining (5.6mm the day before AF due) so I'm keen to ask them about that and get reassurance that they can thicken it.

Wow @lemons44 thats amazing!! That’s gives you a brilliant chance with 2-4 rounds!!! So pleased you finally have some answers. good luck next week! I hope all goes well. If it puts your mind at ease, my lining was also thin but they explained that it should thicken on the drugs they give you and the drugs worked with me, ended up at 10mm! Hope that puts your mind at rest x

Thank you @Ljp2022
That's really good to know about your lining. The consultant did say it's more important that it has the three layers and I think mine does. I have worked from home the past two years and since then my periods have got lighter so I am convinced that my thin lining is due to lack of physical activity/circulation.

Hope you're doing ok @IslaO ❤️❤️

That's brilliant @lemons44!!

We had our first consultation with the ivf clinic, the doctor thinks it's non obstructive. Maybe because of the high fsh level, it's 18. Is that really high? All his other levels look normal I think. The doctor was also pushing tesa and said that's the only procedure he does, I'm wondering if that's why he was pushing it. Would you ladies go and see a urologist that does mtese, or try tesa first? I just want to have best possible chances!

@pomdownunder1 We did go see a urologist just because we wanted to cover all bases and have the best possible chance. For us, it didn’t add anything because of the nature of the obstruction but it gave us more answers 😁 I didn’t even consider tesa, micro, etc because I didn’t really understand the differences. I think I would go with whatever your consultant recommends x

@pomdownunder1 I'd avoid TESE. Supposed to be quite 'brutal' and success rates lower then microtese. Find someone who can do Microtese. Where in the UK are you based as not many who do it in uk

TESA absolute nonsense in NOA which will be the case if FSH 18 and azoospermia. It’s just all that the gynaecologist (women’s specialist) can do on a male.
mTESE is the correct procedure in this situation
www.europeanurology.com/article/S0302-2838(22)02329-6/fulltext

I'd add also don't have the procedure until you have seen a male fertility expert who understands Azoospermia (there isn't many about). They can give you hormonal treatment at least 3 months before the operation to boost the chances of success. I've read quite a few people taking Anastrozole who after 3 months have seen their sperm return so we're able to freeze the sperm from a SA rather then having an operation.

@Ljp2022 completely disagree with going whatever your consultant says as trust me when I say 90% don't have a clue about Azoospermia especially those in the IVF clinic. There are only a handful of experts in the UK who offer micro-tese. In London you have Jonathan Ramsey, Suki Minhas, Pippa Sangha, Tet Yep....Southampton - Rowland Rees, Manchester - Steve Bromage, Wales - Gareth Brown, Cambridge - Oliver Wiseman....might be a couple more but that's it.

@donnie12 I was just sharing my experience. We had a brilliant consultant who was very thorough with our investigations so I think it’s just down to people’s preferences and experience of consultant, like you said.

DW has PSOS and we’ve been trying to conceive for around 15 months. DW was on Chlomid for 3 months without success. I was tested 2 months ago and it came back as Azoospermia. DW was told to stop taking Chlomid so she did. I was retested a month ago and results came back as 18mpml but with 2% motility in grade B and nothing in grade a or c. I went to see a private urologist last week and was told our best chance would be ICSI. Now this in where it gets interesting. So last month we didn’t use ovulation tests as usual and DW didn’t take Chlomid. This morning DW was a few days into a missed period. I told her to take a pregnancy test just in case and low and behold the test has two solid lines. :-)

@pomdownunder1 My understanding is that with tese they just make an incision and take a biopsy without seeing the testicle. With micro-tese they actually pop the testicle out of the skin so they can see the whole thing, they take biopsies from different parts. Our consultant told us she can tell by looking at it which areas are more likely to have sperm, I think the tubules that are filled with sperm are a slightly different colour and texture. I suppose the risk with tese is that if it isn't successful you then have to wait for you OH to heal before a micro-tese and it just adds another step and potentially more stress and heartbreak (and money). I have read stories where the man takes certain medications to fix the hormones in the lead up to micro-tese to improve the chances too.

Congrats @Mota66 what an amazing story!

@donnie12 did you manage to find a surgeon in your area for a microtese in the end? I know you were struggling to find someone

Thanks all, that's very helpful info. I've booked in with a urologist who specialises in azoospermia, feel a bit more comfortable if we've at least had a consultation with him before going ahead with tesa. I'm in Australia actually, although from the Uk.

@Mota66 amazing, love to hear the positive stories!

@lemons44 no weirdly there is non in the Midlands who do micro-tese. The hospital fees for the ones in London like Ramsey and Minhas are really expensive so it's between 1 in Manchester, 1 in Wales and 1 in Cambridge I've found that are much much cheaper. Just trying to decide which one is best and what appointments they have as want it done in February as by then I'd have been on medication for 3 months which is the optimal time to have it I've read on a few articles.

Hey everyone!!

@lemons44 thanks for reaching out and sorry for the delayed reply.

i can’t tell you how relieved we are since our appt with the urologist last week. To finally have a reason for this and a path in mind, it was just like a weight being lifted.

we have sent off the genetic bloods. After all my reading, it seems it is highly likely that if my hubby has no vas deferens, he is a CF carrier. Just hoping beyond hope that I’m not if that’s the case. Don’t need yet another hurdle on this journey!

in the meantime, I’m going to get all the tests done that our IVF clinic need for me before we start.

after the genetic bloods come back we will hopefully then start talking dates for SSR. Unsure if they will want to freeze or if we could try to line it up with an egg retrieval and do a fresh transfer. Generally, just thankful we have a plan of action in the lead up the Christmas- I’m suddenly not at teary when faced with babies etc now as I was for the last however many months.

@lemons44 what are your next steps? How are you and hubs feeling?? X

Hi all,

How is everyone feeling?

Would anyone mind sharing with me costs of microtese in the UK? Just weighing up options and prices for us. Thank you!

@donnie12 the Cambridge one is Bourn Hall isn't it? We looked into having ours there and although we didn't in the end the patient support team were really helpful at responding to our queries. If we even need another micro tese, we will get it done with them.

@IslaO I am so glad you are feeling relieved. So I have a lady on another thread I'm on who is almost due to give birth to her ICSI baby. The reason for her OHs azoospermia was no vas, but he is not a carrier of the CF gene. So it is not always the case. Have they given you a turnaround time on the genetic results? Our genetic blood test had a 4 week turnaround time but it turns out there was 3 genetic tests they did and only one of them actually took 4 weeks, the other 2 were back in 2 weeks. It was the kariotype test that took 4 weeks, the CF gene and Y micro deletion took 2 weeks. So i managed to get those results earlier by pestering for them, even though the clinic wanted to give us all the results at once.

@pomdownunder1 so if we would have had our micro tese at a clinic it would have cost £3,500. We decided to go for Mr Ramsay in the end which included the hospital costs so it's much more expensive and cost us approx £6,000. I think you're doing the right thing having a consultation with an azoospermia specialist urologist. At least that way you are getting the best advice and can be confident in what treatment you pick x

Hi all. How is everyone doing?

We received a letter today to advise they have frozen 1 ampoule of sperm from his first freeze, it doesn't say how many sperm, but I'm thinking great! There's something in the freezer! DP didn't seem happy and said it might be nothing, but I said to him they wouldn't freeze it unless there was something there no? He's not convinced!
Would you all agree?

Hi @WhiskeyInTheJar33 that's great news!

Yes I 100% agree with you. They definitely wouldn't freeze it unless there was enough sperm and good enough quality to warrant freezing.

Did they get the sperm from multiple semen samples? Will they keep doing more to build up more vials?

@lemons44 thank you. That was his first sample freeze. He's doing a second one tomorrow and then another in January. So hopefully we'll have a few more ampoules to use.

@WhiskeyInTheJar33 this is amazing! Something to freeze is huge! Why the hell wasn’t he happy? This is a great sign of things to come!

@lemons44 i have trawled treads looking for this girl who is now pregnant with a hubby without a vas. Can you link me? How are you feeling?

@Ljp2022 thinking of you too and hoping you’re doing well.

such a difficult time of year for ladies like us but here’s hoping this time next year will look a little different! I think the hardest thing for me around now is thinking back to all the hope I had this time last year. So bloody naive!