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.

Thanks @Ljp2022 your message helped. Yesterday was a bad day for me. I saw the 'one twitching sperm' and it just gave me so much anxiety that we had got our hopes up for nothing. I literally was sat with a racing heart for hours in absolute panic and dread.

I am realising the cruel reality that even with sperm I still feel so stressed. I don't think I will relax until (IF ☹️) we actually have a baby.

Also just read a thread about a woman wanting a girl for her third baby after already having two boys and threads like that just make me want to throw my phone at the wall. If only these people realised how luck they are with ANY baby.

How are you feeling? Any further updates with your transfer?

@pomdownunder1 I'm so sorry you had a bad experience. That is shocking. This journey is hard enough as it is without the added stress of stupid doctors who don't know what they are talking about! I'm really glad you already have a urologist booked in for next month, I think that's the best thing you can do.

That's really interesting about the CF gene and the twisted epididymus. In my opinion even if the urologist thinks it's non obstructive, a good urologist would also do a physical exam and ultrasound scan to check if you're OH is missing his vas defrens (missing vas is a symptom of the CF gene) and any other signs on an ultrasound linked to the twisted epididymis. Even though the operation was on one testicle doesn't mean it can't affect both. My husband had his hydrocele surgery in one testicle as a teenager and whether it was linked to that surgery, or an infection which came with the surgery, he now has scar surgery blocking both testes from passing sperm.

I hope you're feeling ok today. It's such a long slog but hang in there and take it one step at a time xx

@lemons44 i just want to reassure you, twitching sperm are more than enough to use for icsi. We got 7 top quality embryos from it so please don’t worry (although I know it’s impossible to not!).

I know everyone is different but I felt that once I knew we had some successful embryos, we were past the hardest bit and I did feel less anxious. That goes up and down with the meds obviously but I definitely don’t feel as stressed for embryo transfer. Everyone is different but you’ve got this, stay strong, you will get through it 💕

I totally relate, I’ve basically stopped reading threads apart from this one!! Those feelings are totally justified and appropriate and you’re not alone!

Will give you and update once we know the outcome from the transfer (hard not to get your hopes up!).

Hey all,

just catching up on this after a bit of a self imposed google and social media ban.

@lemons44 i can feel your anxiety through the last few posts and honestly, it just resonates with me so, so much. That feeling of getting your hopes up but then realising no part of this process is going to be relaxing or enjoyable for us. It really breaks my heart that we probably won’t be able to breathe until we are finally (hopefully) holding a baby in our arms. And threads like the ones you referenced…. Aaarrrrrgggghhhh.. don’t get me started. Here’s another one for you- I opened up a few weeks ago to a girl I line manage who said she was just off the pill and considering trying in 2023. She came to me this morning to say she’s 5 and a half weeks pregnant after trying for the first time on the night she ‘heard my horror story’. I don’t know how I didn’t burst into tears there and then. What I will say, this journey gives you strength you didn’t think you had.

@Ljp2022 I see where you’re coming from- once you get the reassurance that you have a bank of good embryos on ice, it’s definitely a huge huge milestone. Oh my god I want to be at that point so badly! What month are you hoping to transfer?

I must say, you ladies have really been a pillar of strength to me over the last few months- thank you so much for understanding and advising. I never thought I’d be an Internet forum poster but this journey has driven me to madness!

@lemons44 sorry you had a bad day yesterday. It's so hard not to worry but @Ljp2022 your advice is amazing.
Starting to realise as well that the anxiety/stress won't stop until we have that baby.

@Ljp2022 fingers crossed for you transfer!

Thank you both, so lucky to have found others on this journey

@IslaO this month! Mix of emotions, it’s hard not to get ahead of yourself and remind yourself of the statistics. Will let you know as things progress
I feel the same - it’s been so nice talking to people going through the same thing 💕

@IslaO how insensitive of her!! People really have no idea. Sorry you had to go through that

@pomdownunder1 ive just seen your longer post on the previous page. Interesting that your OH is a CF carrier- did the doctor do a physical examination? Some male CF carriers can be ‘infertile’ (I effing HATE that word) but this is usually due to a lack of a vas deferens (ie the tube that carries the sperm out of the testes so it has no way to leave). This usually causes OA. The consultant we went to see did a physical examination and in seconds told us there was no vas deferens. From this we have done genetic tests and I’m expecting him to come back as a CF carrier.

the raised FSH level is also potentially something to look into but (and I’m not a doctor), I think raised FSH paired with abnormal testosterone is an indicator of NOA. Ladies please jump in here if I’m wrong!

@Ljp2022 this month!! Oh my god. I will cross everything and anything for you. I would so love a bit of good news on this thread!!!

@IslaO thanks! He has had 2 physical examinations now with no mention of vas deferens. I'm guessing the urologist will do another one.
He does have high fsh, normal levels of testosterone but slightly high prolactin? It was 515, normal levels are 0-400. He was retested recently to see if it was just because he was stressed

Great that you've got in with Dr Ramsey, he seems amazing!

Thanks all. I'm just really struggling at the minute with bad anxiety around the whole thing. It seems to have come out of now where but maybe I'm just have a bad week. I need to get to grips with it really as otherwise I will burn myself out because this is going to go on for a while.

I think i was more worried that there was only one twitching sperm in the 5ul. Even though I do recognise that 5ul is a very small measurement and most vials contain 0.5ml which is the equivalent to 500ul.

Our sperm is scheduled to be transported in 2 weeks from London to the clinic we are doing ICSI with. I emailed the embryologist at our new clinic explaining the sperm report results and that we didn't have a test thaw and would she recommended then once our sperm is transferred and she said:

'I understand your concern regarding the quality of the sample, we can use immotile sperm to inject the eggs if no motile sperm are found.
With regards to the test thaw, surgically retrieved samples are not always suitable for a test thaw this can be common practice in most clinics. Therefore, we are not worried that there hasn’t been one done.
On the day of thawing, we will prepare the sample and we can advise you of the quality then.'

So I THINK I feel a bit better now? I was so panicked that we would have very few twitching sperm and just immotile ones but I feel a bit better now she has also confirmed that they can use immotile ones.

Because we were so messed about with our SSR over months, my OH got in a really bad place and just started to give up hope so barely taking the vitamins. So that has been in the back of my mind that it would have effected the quality.

Sorry that I've been in such a flap on this group this week. It's a bad week for me where I am worrying and overthinking literally everything (as u can tell!!). I think I'm going to looking into some guided meditations or something to help me.

Keeping everything crossed for you @Ljp2022 hopefully this group will be a good distraction for you so you don't think about it too much (easier said than done I'm sure).

@IslaO that was SO insensitive of that girl. Some people really don't have a clue!! Sending you a big hug.

This group has helped me so much too. The only other azoospermia forums I found were on fertility friend and years and years old. There's not much support out there for this issue and it's so specific.
X

@lemons44 try be kind to yourself. You’re not alone and the anxiety and tearfulness is the hardest thing to manage. It’s really easy to tell yourself you need to get to grips with it but almost impossible to do. I continue to have highs and lows (more lows than highs). what you’re feeling is totally normal for what you’re going through.

I know you’re worried about the amount but there should still be a lot of sperm within the fluid. Can I suggest that if you’re worried, you call the clinic to talk it through? I found that I was worrying and looking into every details, Googling everything and in the end, I started to call the clinic to ask questions. They were more than happy to answer my questions and I found it really helped having the professionals answer my concerns.

glad that you’ve contacted the embryologist, that sounds much more positive and they’ve given you answers! Hopefully this helps a bit?

don’t apologise for being a flap!! We all feel the same and you have been messed around so much!! It’s okay to take a break from things if you needed (I also stopped the vitamins for a month because I felt so disheartened). When you get the next step planned, hopefully that’ll help and give you something to aim for but look after yourself. Always here for a chat x

@lemons44 You're not alone! This whole journey is an absolute rollercoaster of emotions.

@IslaO what an insensitive thing to say! Hope you're doing ok.

@pomdownunder1 Sorry your appointment didn't go as hoped! Its soo stressful when you don't get the answers and left with more questions!

I am have a down day today too. Every bit of positive news we get is followed by more negative and its soo hard to manage these emotions!
DP did his 3rd freeze and received a call straight after to say there was no sperm in his sample. He managed to find out there was 2 sperm from each of his previous samples frozen, so 4 sperm in total but concerned things haven't progressed how the consultant had hoped. They've asked him to do another sample which he has booked in for the end of the month. We are not sure if this means that varicocele embolisation is now failing or whether he's in the minority that develop another varicocele.

I've asked our clinic to confirm whether they will still class him as NOA or very severe oligospermia given we have something in the freezer. If DP is still NOA then we don't qualify for nhs funded ivf, so I want to go private sooner rather than later, get a private micro-tese and start IVF immediately after.

DP has always wanted to follow the process with the nhs in the hope we will qualify for funding. There was a second option if the embolisation failed and DP was wondering if he should go for this. But this would mean waiting for the surgery, then 3 months post surgery to do another sample, for no guarantee that it will work. I'm struggling with the fact that this has been ongoing now for over 2 and a half years (and luckily we haven't had to wait long for our nhs appointments) but we are no closer to starting ivf unless we go private.

@WhiskeyInTheJar33 im so sorry that must be so tough. What are your thoughts about going private?
It’s positive that they have even a couple of sperm that they can use for icsi but I can imagine how hard it must have been getting those results after a period of treatment. Use this space to vent 💕

@Ljp2022 since the start I was prepared that we may have to go private, but DP has always wanted to fight in the hope we would get funding. Luckily we have enough savings to fund several rounds privately, it's just a lot of money that we were hoping to spend on house renovations.

@WhiskeyInTheJar33 we are in the same boat with regards to that, house reservations are very much on hold!!

@WhiskeyInTheJar33 so the NHS have said if it's NOA you don't get funding for IVF? How about if you get the microtese privately and freeze the sperm will they not fund you then? Seems so harsh that. Sorry to hear it....is that just your NHS trust with that policy or same for others as well?

@donnie12 from what I know it varies from nhs funding authority to the next. All have different criteria and funded treatment, for example Wiltshire funds three eggs, London areas only one.

@donnie12 each area has a different criteria, it's a postcode lottery and unfortunately ours do not cover NOA. I asked if we privately funded micro TESE (it's not really any different to using donor sperm - ok the quality might be different) they said no, as "success rates are lower" with NOA.
My clinic are now saying nhs will find micro TESE which I can use privately for ivf, but that contradicts what they've told me before! So I'm very confused at the moment.

Thank you @Ljp2022 ❤️ I do feel a bit better after emailing the embryologist but that's really good advice about just calling them if I'm worried about something. I am terrible for going down the google rabbit hole!

@WhiskeyInTheJar33 I'm so sorry you're having a hard few days too. That must have been a shock to hear this sample didn't have any in after the previous 2 samples did.

Do you know whether they tested the whole sample or just a drop of the sample? I just wondered if there's a chance they just didn't see any sperm in that specific drop? I was watching YouTube videos of them sifting through samples for sperm and it seemed a bit like Where's Wally for people with azoospermia when numbers are low.

I think it's a good idea to line up a clinic for a micro tese even if you don't need it yet, just in case. That way you will be ready to move quickly if you decide that's the best route.

How is your OH holding up? He must feel really rubbish at the prospect of another surgery ☹️
That would be good though if they change the diagnosis so you can get NHS funding.

I found this yesterday and if you look at page 18 it describes the eligibility for surgical sperm retrieval (including m-tese) on the NHS

www.england.nhs.uk/wp-content/uploads/2018/07/Surgical-sperm-retrieval-for-male-infertility.pdf

It also says on the first page: NHS England will routinely commission this specialised treatment in accordance with the criteria described in this policy

Keep this saved girls and use it to argue to get it on the NHS if you can! x

Ok I'm quoting this because this actually relates to the NHS policy I just sent in my previous post. So basically anyone should be able to get an SSR funded (including mtese ) regardless of area, because it goes through the NHS and not CCG. At least I think I've now understood this correctly.

@lemons44 thank you. They tested the whole sample and spun it to find everything they could. DP is feeling really down. He really didn't want a micro-TESE so it's disappointing to feel like we are going backwards.
I've got a list of clinics ready to contact if we do decide to proceed with micro-tese.

@WhiskeyInTheJar33 ok that makes sense that they did the spin thing on it. I'm so sorry your husband is feeling down and i totally understand why he feels down about potentially having a microtese. I really hope it doesn't come to that and your next SA provides some sperm again but if you do need a microtese it may be something that will enable you both to take the next step on your journey towards ICSI so it may actually provide some relief and closure on this chapter of finding sperm? I know it's been such a long journey for you both so far. Sending hugs xx

We have an appointment this afternoon with the doctor who did DHs micro tese so we are going to ask lots of follow up questions about the procedure. I will let you know how it goes x

Oh @WhiskeyInTheJar33 i just feel your pain. Another setback on an already shitty journey is so crap. Having your own disappointment and pain and then also having to look out for your OH- it’s all just overwhelming. I feel you. Like you and @lemons44 ive been having a randomly anxious and down week. I say randomly as we are between appointments and there’s no specific trigger. I was just chilling on the sofa last night, reading a book and then BOOM- anxiety of ‘what if there’s no sperm in the retrieval’ hit me like a punch in the gut.

@Carla2601 at the moment, it’s your story that’s keeping me going.

we got our genetic bloods back today. All good except the CF carrier one- that’s confirmed but we essentially knew that due to no ‘rastafarians’ 😂

one thing I wanted to ask you ladies was about prolactin. His prolactin was normal and within range in October but when they tested it in his genetic bloods sample, it’s very slightly above range. Do any of you know what this might mean?

@lemons44 you have an appointment this afternoon?! Missed that!

debrief on here when you have processed it! X

@IslaO ah interesting, same as my OH. CF carrier and slightly high prolactin., I wonder if they're linked?
I couldn't find much online to say why but the doctor asked him to retest to be sure. I'll be asking the urologist at our next appointment but let me know if you find anything!