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.

Oh @IslaO I'm so sorry 😢 you must be devastated. I feel really disappointed for you.

Have the clinic told you any next steps? I hope they give you an appointment to discuss what they plan to do differently and I really hope it's not long and you can start again. I also really hope you're not charged money for this cycle.

I know that we're all worriers on this thread, but please don't go down a worry rabbit hole. One of the best things I read was that 'IVF is more like an art than a science'... everyone is different and every medication and dose reacts differently in every person, so it's a process of trial and error and tweaking things. They just need to tweak things to get the right treatment plan for YOU and they also now have this learning to build on.

Sending you a big hug 💗

Xx

@IslaO I'm so sorry this happened... it seems like we're all at the point there's either good news or bad news. Just such a heart breaking reality and I wished for better outcomes for you all weekend. Please take this time to relax and ask a many questions as you need to your facility to feel comfortable moving forward.

@TheFanciestPants @lemons44 Thank you! I’ve had a very wobbly weekend just non stoped cried but trying to think positive. Appointment was good glad we got more information. My partner had another blood test to check if his body is actually producing the sperm we need to wait 3 months or so to get them back to see if we could go ahead with mtese. So it all hangs in the results of the bloods. Dr said there would be no point in putting us through the mtese operation if the bloods show that he’s not producing sperm which I suppose is fair enough but it’s hard to take. Also mentioned about a donor which we would have to source there are so many worries and concerns with a donor but I want to experience pregnancy as selfish as that sounds to my partner but we’ve discussed it and it’s going to be the next option if the bloods don’t come back as we hope. Just need to get through the next 3 months and hopefully get the news we hope for. It’s an emotional time I need to try keep positive but it’s so hard!
We got leaflet about IVF which has scared the life out of me.
Hope everyone else is ok! @IslaO hope you are ok! It’s so frustrating to get to a point you’ve probs wished for for it now not to be going the way you want/need it to! Thinking of you!

@Lp96 I don't blame you at all. I have cried a lot since I found out. And the thought of IVF makes me overwhelmed too. I think it's important to give yourself time to process and go through the grieving for what could(should!) have been.
Gosh, 3 months sounds a very long time for tests.😵‍💫
Are you in the queue for NHS IVF (if that is a thing with your circumstances) or is that something you will think about down the line?
We finally got our referral (after weeks of chasing and phone calls) to the local fertility clinic with a male infertility specialist. Off to the private consultant this week so maybe she has some ideas.
We are so early in this process but I already feel the huge weight of it.

I'm so sorry you've had such a tearful weekend ☹️ What is the blood tests searching for do you know? Is it genetic? (Don't answer that if you don't want to). Im sorry you have to wait 3 months for the results, this whole process is just so much waiting. I think it makes sense what she is saying about not wanting to put your OH through an mtese without doing tests first, it is quite an invasive procedure. Im just going to be keeping everything crossed for you that the blood tests results come back ok. 💗

Sorry I forgot to tag you @Lp96 xx

@TheFanciestPants We’ve been given the info for ivf but need to wait for the results to come back. Then once we know what we can do then we will go on IVF. I will start the process of the injection etc and then the timing of the egg retrieval and implantation will tie in with my partners mtese then hopefully then find some sperm and then can inject it but there’s obviously a risk they can’t find any so there’s and option to have donor sperm on back up. We’ve discussed it and it would be something we do as last resort but we feel like if we go in with donor as back up I kind of feel like we are expecting it to fail and as crazy as it sound I kind of don’t want to put that out into the universe. I feel like it’s maybe a way of us giving up on actually finding some if that makes sense. That’s what we are thinking anyway. When we do eventually fall pregnant I want it to be special and a happy moment and I feel like we wouldn’t have ‘grieved’ the loss of not finding any sperm if you know what I mean.

@lemons44 No we’ve had the genetic ones which showed all normal. He’s on the slightly low side of testosterone and high FSH. I didn’t even know this was such a thing but apparently it’s something he’s just been born with and nothing he has done or not done has affected it. Which is pretty rubbish haha. Apparently because he’s got non obstructive the brain sends like a signal to part of the body to produce sperm. So that is what the bloods are for, to see if his brain is sneding that message to the correct parts of the body. If they come back that they do we are going ahead with mtese but if not then he’s said it’s not worth going through it as they won’t be expecting to find it. 3 months is a long time but trying to keep positive. He said all going well we would be able to start the process of IVF Christmas or very early spring. Which is good I suppose. Jsut need to get control of my emotions at the moment. 😞

@TheFanciestPants I hope you find good results from your make specialist this week. I know finding one for us was a huge help and was able to answer all of our questions.
@Lp96 gosh.. 3 months for blood tests? I know everyone's probably asked this, do you know the specific tests? That would be a new one I haven't heard of yet. Are you working with a specialist?
@lemons44 just wanted to check in and see how you're doing?

I started stims Saturday so today is day 3. Had a panic attack on day 1 of just not knowing if I could go through with it but made it through. I'm on 275 IU Gonal-f and 75 IU Menopur... that one burns like no joke! For all you looking at IVF as intimidating, it absolutely is, but is nothing you can't make it through :)

The only blood test that would tell you if he wasn't producing sperm is the genetic micro-deletion test (complete azfa or azfb). There is no other test. Even FSH isn’t a predictor…. If it’s high his body is trying hard to stimulate the testicles. It can be very high and still possible to find sperm

@Lp96 3 months for a blood test result? Other then hormonal tests to check FSH, T levels (takes a week to get back) and micro deletions tests (takes around 2 weeks) there is no other blood tests so intrigued what they are actually checking? Is this NHS?

High FSH and the size of the testicles are normally how they determine the likelihood of success. My partner was given 30% chance of success as he had small testicles and high FSH from 2 different private urologist's. They may give him Clomid, Anastrozole or HcG to try and increase the chances of producing sperm.

Hi @Lp96 I do agree with the other two comments. I don't know much about the genetic side so wondered if your doctor was checking that, but with regards to hormones (testosterone, FSH) these would definitely not take 3 months.

I read somewhere that even with Sertoli cell only syndrome (considered one of the most extreme cases of male fertility) the testicles may still have small 'pockets' where they are producing some sperm. That's why usually an mtese is the only way to know if there is sperm or not.

Maybe your doctor wants to retest these hormones to give you a % chance of success, similar to what Donnie has been given. So you can weigh up whether to do the procedure or not based on those chances.

I would really consider sending your consultant some follow up questions incase information was misunderstood. Was they an IVF consultant or a urologist? A lot of us have found on here many IVF consultants don't understand this issue and a urologist specialising in male infertility is much better.

Sorry you're feeling so down. Make sure you're looking after yourselves xx

@lemons44 @donnie12 oh gosh I don’t know now.. this was just how it was explained to us. We’ve definitely had genetic test done previously with another dr. This was to check chromosomes and stuff. I’m going to ring up tomorrow and see about booking an appointment for 3 months time so we aren’t waiting as much. The dr we saw was a male fertility specialist in our area. So we have been referred to a different hospital which is more IVF with male fertility specialist.
Its making me worry now 😣😖

@Lp96 Are you sure it's not another sperm test in 3 months as it takes 3 months to produce sperm. Other then hormonal tests and chromosome/deletion blood tests there is simply no other blood test that determines the success of the mtese.

Sadly 95% of clinics and NHS hopsitals have ZERO idea about male fertility. You need to see a urologist who actually performs the mtese.

If you are going for the mtese and IVF at the same time I'd strongly recommend you have donor sperm as a backup just in case as sadly the chances of finding sperm in Non Obstructive Azoospermia (if not lost through TRT) is around 40%....the chances of finding it if lost due to TRT is higher hence why the figures for success are slightly higher as takes into account ALL Azoospermia not just TRT.

If you can afford it then you could try FNA mapping (around £7k) which is a non operation that checks if there is sperm and maps it before the mtese so if there is no sperm found them no operation is performed. Only Jonathan Ramsey and 1 other in London offers it though.if successful you still need to go for the mtese but at least have a map of where the sperm is to give to the surgeon.

Wishing you all the best. It sucks it really does as we going through it now. Sadly as my partners testicles are very small (had mumps in his 20's which caused the diagnosis) the odds are only 20%-30% so going donor. As bad as it is it could be ALOT worse I guess.

@donnie12 rang clinic today to ask for details. The blood test was the chromosome deletion one. But I’m confused as I’m sure we’ve already had a chromosome test because of the referral letter it said that the chromosome test came back normal. Is there more than one they test for?
Our next appointment is 11th September

@Lp96 urgh. How confusing. We are going privately (I decided if we can use the NHS IVF route we can pay for this to improve our chances!) and my dh had the chromosome test yesterday. They said 2-3 weeks for the results, so as the group have said I would definitely ask some questions.
It is such a stressful situation so to be given conflicting information is super unhelpful.

Hi @Lp96 we had two tests, one was for cystic fibrosis and this took about 2 weeks to come back and the second one was called a Karyotype blood test. This one was to check for the y micro deletions as well as some of the other generic conditions such as Klinefelter syndrome. We was told this one does take longer (I think I was told 4-6 weeks) because apparently they look at a strand of DNA and have to watch it develop over time - that's why it takes a bit longer as it is more complicated.

Maybe the blood test will come back sooner but the consultant has added some time on as they can't fit you in an appointment until 3 months? Is this NHS? Remember your other half is entitled to ask for a copy of his own results so you could try that to then work out what the test was your had before

In fact I really recommend getting a folder and getting copies of all test results for your records. This really helps if you do decide later down the line to get a second opinion or you end up changing clinics etc.

Xx

Genetic not generic *

@lemons44 yeah well I did ask for a copy of the referral letter. Which states that he’s had a cystic fibrosis test which came back normal along with the chromosome testing. I’ve re read the letter a million times just to be certain haha. So I’m assuming we’ve already had it? Which is really annoying me if they’ve sent us for another 😭🤯

@Lp96 could you give them a call or email to check? I had to chase about 15 times for our fertility referral as they referred us to the wrong clinic and lost my test results(!) and everyone we see (even privately!!!) seems super disorganised. We had the ultrasound today (there was a mixup in booking so it was a super stressful wait and we got walked to a different clinic!) and my husband's structures are all in good shape and apparently he has fewer vein issues than normal (we were convinced he had a varicocele, so that was a suprised). So we are none the wiser basically.
@lemons44 I am guessing it is the same test, we were told 2-3 weeks for the micro deletions test (but if you were told longer I am now really worried it won't be done properly 🤷‍♀️) so no idea.
Basically I have done 20,000+ steps and extra tube journeys two days in a row (in the heat) alongside my work and am none the wiser as to what is going on. And, I basically feel like crying as everyone around us is pregnant or with small children...and a few keep going on about how it was an "accident"...
But, I am trying to look on the bright side, honest (sorry for the pity party)!
@Sleeter0893 how are your stims going? I have everything crossed for you!

@Lp96 I know it's all frustrating. If you're not certain about something, be your own advocate and bother people until you know! With the time line of 3 months, I feel like they're doing another sperm sample at that time to confirm the diagnosis. That would make a lot of sense. Either way, it's all confusing!
@TheFanciestPants thanks for checking! Had my first scan yesterday and have 19 follicles growing.. 10 in my left ovary, 9 in my right. 3 of them are 10mm or over. They expecting I'll add an injection at my scan tomorrow to prevent ovulation and if the standard of growing 2mm a day is correct, I'm hoping an ER next Tues/Wed! I hope no more complications, but I'm at the mercy of my body, the doctors, and faith.. I'm super exhausted lately so sleeping a lot more than normal.

@TheFanciestPants I've just googled and some places say 2 weeks for results, others say as many as 6-8 weeks! So don't panic. Maybe it's just down to the individual lab doing the test? Was it Dr pippa you saw this week? How many test results are u waiting on now? Also I know u said there were SOME sperm, although too few to count, has your OH just had the one SA so far?

@Lp96 definitely chase the clinic and ask what the previous chromosome test was incase they have duplicated.

@Sleeter0893 hope you're feeling ok. 19 follicles is a really good number. Keeping everything crossed the next few days go smoothly for you.

xx

@lemons44 thank you for thinking of me :) definitely cramping on my left side where the most and largest follicles are. Heading back to the clinic today for an update scan.

Hope it goes ok @Sleeter0893

@IslaO understand you're probably taking some time away from MN but I'm thinking of you and hoping you're ok 💗 always here when u need us xx

@lemons44 how are you getting on?
Thank you for checking in, we did indeed see Dr Pippa, who was very helpful but I think we will need to be patient to find what is going on. Thank you ❤️ I did google too but everything seemed to be taking longer (have been down a few unhelpful rabbit holes and to be really honest not at my best for decision making!).
One SA so far, but our GP was very concerned about it and when asked said if it was her then she would go privately asap (we were told 9 month wait for a urologist!). We also asked 2 private GPs who agreed they would also do the same after my husband's hormone results came in (lowish normal testosterone, highish normal LH and slightly raised FSH).
We are waiting for the genetic tests for microdeletions, another SA at the end of the month (we are going to the better lab for this after my fighting for the referral, being told there are too few sperm to count is so unhelpful) and my husband may apparently have Gilbert's syndrome so another liver function test too.
The GP said that shouldn't impact fertility but we are aiming to get all the results and then see Dr Pippa again so we can understand our options and prognosis.
Thank you for listening, you are very kind ❤️
@Sleeter0893 19 follicles is very impressive. Fingers crossed the EC gets an excellent yield! 🤞🤞🤞

Has anybody spoken to you about vitamins? Before my OHs second SA he was on proxceed for a few months. It's really expensive but I've heard good things. Just wondered as if they found some sperm on the first sample, even if there was too few to count, maybe some vitamins may help things. Worth asking if the new lab will do something called centrifugation. Our lab didn't do this on the first two samples but Mr Ramsay requested this on our third sample. It's where they spin the semen really fast so the sperm clumps together. I think it makes it easier to see the sperm.
Sorry it seems like it's been such a nightmare for you with all the referrals and needing to chase.

I'm getting on ok thank you. We have a new IVF treatment plan to hopefully get more than 3 mature eggs this time. To keep busy I am having a major clear out and organisation project of my house room by room. Seriously I am becoming one of those annoying people on Instagram who buy little drawer dividers to organise socks 😅😂 I think deep down it's just something that I can be in control of!
xx