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.

@lemons44 have been thinking of you recently and hope you're healing well :)
@IslaO I'm excited! Had my polyps removed this morning. One was the size of a grain of rice so that was good real estate in my uterus to get back for the embryo. I've been on birth control for a month and stop tomorrow. My baseline labs and ultrasound was good this morning. I start Stims Saturday and will be on Gonal-f and menopur until told to add anything else. First scan is next Wednesday. I'll be starting on CD4 so we're sounding pretty similar! Are you aiming for a fresh or frozen transfer? How are you feeling after starting everything?

@Sleeter0893 congratulations on a successful procedure- that’s fantastic to know that’s done and your uterus is as ready as it can be!

I was aiming for a fresh transfer but I read through my notes and and it says ‘likely a freeze all cycle’ and when I asked about this they said that is in case of OHSS. I don’t really know if I’m likely to get this or not but just going to go with advice on fresh or frozen when the time comes. I think I’m just desperate to know I have eggs now! What about you? What’s your approximate date for egg collection? Mine is 16th but I’ll know more after my scan this Friday!

@IslaO I'm in the fence for potentially getting OHSS so could be a frozen cycle, but we're on the protocol for fresh and aiming for that with our meds. ER is planning to be around the 18th-24th but no concrete dates until after meds and first scans. Started nervous googling about first time IVF success stories.. lol

Hi my lovely azoo club 💗 hope you're all doing ok.

@IslaO @Sleeter0893 so excited for you both that you're making progress with IVF! I know it can feel scary but it will go very quickly especially if you're both on the short protocols. Make sure you're putting yourselves first - work, social commitments, housework... it can all come second. Most important thing is you're both being kind to yourselves and making time to relax.

@Sleeter0893 that's brilliant that the polyp is now gone and very good your doctor is being thorough and addressing it before you start treatment.

Good luck for the appointment @Lp96 I think the main questions you should consider to ask are about the next steps and timelines. I think @IslaO makes a good point about noting down anything you don't want to leave without knowing. Don't be afraid to ask them to repeat themselves or write things down. Sometimes these appointments can feel a bit like an information overload but don't feel any pressure to rush. Take your time, ask them to repeat things or explain things further etc.

Hi @TheFanciestPants sorry you're here too. I know it's hard to get your head around but him having SOME sperm is a really, really good sign. I hope your appointment goes well next week - who is it with?

@WhiskeyInTheJar33 hope you've been doing ok whiskey, always here if you need us

No updates from me. Still waiting for our treatment plan for our next round of IVF to be finalised. I'm feeling a bit better now about things and just want to look forward.

Looking forward to catching up with last nights love island because crappy reality TV takes my mind off things 🤣 xx

Thank you all for advice. Looks like your all moving along so well in your journeys. @IslaO what does OHSS stand for?

feeling every emotion about going for the first initial appointment. I’ve kind of got my head around IVF and come to terms that this is our only option so I kind of just want to get on with it but I’m wondering if they might give my partner something to maybe see if he does produce some sperm?

We got our appointment referral through and we’re given the date for 31.7.23 then had another letter last week saying they had to rearrange the appointment to the 18.8.23 so as you can imagine I was distraught. I was straight on the phone asking why and checked if there was a cancellation list. When the lady rang me back she said that there was a cancellation for this Friday so we are about 11/12 weeks early from what we originally planned so I’m sooo pleased about that. Don’t know if anyone chases up appointments but being consistent in ringing and asking about cancellation appointments has really sped up on journey so far. I will definitely be doing this more often.

Will keep updated on the appointment this week!

@Lp96 hope @IslaO doesn't mind me answering your question to her.. OHSS is Iberian hyperstimulation syndrome where your ovaries react to the medications too well and the ovaries swell too much and can confuse your body if you try to do a fresh transfer.
I understand being impatient! Just had my polyps removed and first question to my Dr. was, how quickly can we start stims! Wanted to make sure our treatment wouldn't be delayed after that procedure lol
I'm sorry you've ended up here, but hopefully you'll have answers and direction soon! The worst part is just feeling like you're in limbo...

@Sleeter0893 oh my goodness that doesn’t sound good. I’m worried because I’ve heard a few stories about sperm not been able to ‘make it’ if it’s frozen so when we start the process I’m hoping we can do it at the same time. I think the more worrying thing for us is knowing if there is actually sperm? What’s peoples experience with having zero in multiple samples and then finding some in mtese? The whole process and the different stages really scare me and each time I good or look on threads I see new things all the time that I didn’t even know could happen! It’s such a worrying process! Thank you for answering!

@Lp96 I totally get it. My husband has 0 sperm on multiple samples. We had a successful mTESE in April and are moving on to injections this week. We're going to do ICSI with IVF where they inject a single sperm into the egg to fertilize.
I will share a piece of advice my nurse told me.. I asked if there was anything more I could do to increase success chances and she said you just have to trust your doctor, nurses, and the medications. Do your part and whatever happens, you did everything you could. There is no guarantee of anything succeeding and everything happens for a reason (as unconfirmed of a statement that is in the moment).
We've been trying for 8 years but are I'm still under 30 (a few more months ;) ). If we had a child when we started trying, I wouldn't have been able to go back to school, start a new and stable career, and start working remotely 100%. It was painful during the years of hoping, but everything seems to come together now. If this fails, it'll hurt like crazy, but in time, everything will become a memory on our crazy journey!

@lemons44 thanks so much, we are going privately to see Pippa Sangster. I spent a lot of time googling the different specialists so hopefully she will be helpful.
It sounds like you have had a really tough time so thank you for being so kind. It's just a horrific position to be put in but messages like yours do make me feel less alone.
Everyone keeps saying MFI are the best fertility issues to have but IVF is still only around 30% I understand. So keeping my fingers crossed for you.
@Lp96 amazing work on getting the cancellation. I have been chasing our fertility referral (we agreed which hospital but then our GP secretary booked the other one which I found out when we got the appointment). I had to complain to the practice manager and now finally we have a referral to a clinic with a male infertility specialist... So I agree tenacity is key.
Very excited to hear how you get on.
@Sleeter0893 that's great news on your polyp removal and loving the philosophical approach. Hope you aren't too sore.
Good luck to you and @IslaO with the June IVF 🤞

Just got back from our mtese which was unsuccessful 😞Feeling pretty deflated and gutted and DP is hobbling around in his jock strap looking shell shocked.

Have been keeping up reading all of your progress on here but staying quiet, I hope you are all enjoying this sunshine coming and are doing okay and things are ticking along for you 💖
Good luck to all girls starting/doing IVF soon. I will be keeping my fingers crossed for you all and just generally sending good wishes to everyone - it’s such a mad journey to having our babies.

@TheFanciestPants we have been with Dr Pippa and she is literally the loveliest woman I have met - so kind, compassionate and helpful, I hope you have success with her. We voice recorded our appointments which was a tip I got from here and it was so reassuring to listen back as then you know you haven’t missed anything! You are in safe hands. I couldn’t recommend her more highly, a real gem.

We’ll lick our wounds, go on holiday and then start thinking about next steps. I’ve been doing quite a lot of reading about donors and it really feels like a minefield out there. To be honest can’t believe we’ve come to the end of our bio baby road so soon.

Grateful for this thread to just have somewhere to share with people who understand.

@Anmika93 I am so, so sorry to hear this. I am thinking of you both from afar 💗 this journey is so unfair it makes me want to scream for you. I know there are not many words any of us can say but just know that we are here and will support you and from the bottom of my heart I am thinking of you and your OH. I would imagine that finding a donor may be confusing but hopefully your clinic can help you with the process.

@Lp96 . So glad you managed to get a cancellation! I knew a lady on another thread who sped her whole fertility investigation process up by constantly ringing to see if their were appointment cancellations.

Completely get how scary it is the not knowing. It can really start to drive you insane so my advice is to try and give yourself some breaks from thinking and googling about it. It can become all consuming but you need to give your self some respite from it too, some evenings without your phone or some date nights together where you have fun. I say that as somebody who spent hours and hours in a row just googling, without having a drink, doing a wee... just becoming obsessed with getting answers and neglecting myself in the process. I think that's wonderful advice @Sleeter0893

@Anmika93 My heart hurts for you... everything is so unfair and I can only imagine how you and your DH must be feeling... I hope you can enjoy your holiday and focus on your love for each other before diving back into the crazy world of reality..

@Anmika93 so sorry to hear that. Hope your partner is ok and makes a speedy recovery.

Thanks for advice on voice recording. Didn’t think of that so will definitely ask if we can do that too! Hope you have a lovely holiday! Take some rest and try relax ready for the next step.

@Anmika93 i am so so sorry to hear this. At the very least, you know what you’re working with and you know you’ve done all you can. There’s no ‘what ifs’ but that sense of finality is a bitch as well. I’m so sorry. It’s just beyond hard to process but a holiday, good food, sea views and time together to heal and move forward will be a tonic. My heart breaks thinking of your husband walking around in pain and for both of you having to process this outcome. The injustice of infertility is just a punch in the gut!

Hope everyone is doing well today! I'm definitely starting to freak out since I start injections in 2 days... worried I'll mess up the timing, do the wrong thing, who knows... it's probably from being off the birth control but my hormones are wacky today!

@Sleeter0893 good luck with the stims, you have got this 💪
@Lp96 let us know how your appointment goes - fingers crossed for you!
@Anmika93 thanks for sharing your great feedback on Dr Pippa. I am so sorry the procedure did not go as you were hoping. I think it's important to take time to process and think through what would make you happiest in the long term. But it's important to take time to get over the initial shock. One of my friends had 15 rounds of IVF before having twins and she said she wished she had taken more time rather than rushing for the next round.
You are right to be cautious and donation is an absolute minefield, so I definitely think regrouping ahead of any decisions is key.
I have two people close to me who have used sperm donors (different situation as my sister is in a lesbian couple and one of my best friends (who had all the IVF) is a single mother by choice, both went down different paths and are very open) so if you want me to ask them about it then let me know.

Hi all,

@Sleeter0893 so natural to have building anxiety. You will be fine though and probably feel much better once you actually start and are taking action.

Im super disappointed today after my day 7 scan. I have usually had 12 and 12 follicles on a normal ultrasound. Today I just had 8 and 4. And they weren’t very big. I think I am responding poorly to medication and I’m at risk of having a cancelled cycle it things don’t improve over the weekend. I’ll know more on Monday. I just feel so deflated. Such road blocks on the way to getting sperm so it’s even harder to stomach IVF roadblocks too.

@IslaO I'm sorry it seems you're not having a great response.. fingers crossed for a better reaction over the weekend! Even if those 8 and 4 grow, 12 is still a decent number to pull from :)

Really hope your scan goes ok today @IslaO im sorry you've probably spent the whole weekend worrying about it (as if we haven't all been through enough already!).

I think most clinics go for a 'one size fits all' approach to start with and yet everyone's bodies are so different. I think that's one thing I've learnt from this is that everyone reacts differently to the same medications. I know it will be heartbreaking if the cycle has to be restarted and tweaked but just remember if that happens (hopefully it doesn't though!) it will just mean you have an better chance of responding well.

@Lp96 how did your appointment go on Friday?

Xx

Thank you for thinking of me @lemons44 . It’s just so hard to process after all we’ve been through to get to this point. I think they just gave me the lowest does of FSH drugs thinking I was a risk of over stimulating and the opposite has happened. There was definitely some growth over the weekend but I’m not at a point where I would have hoped. Will wait to hear back from the clinic but we’re still at risk of having the cycle cancelled. I just hate this numbers game- I’m looking at my graph below and trying to predict numbers and then drop off rate etc. I don’t think I was prepared for how hard this part of the journey would be.

@IslaO how many days have you been on stims for? What dose have they got you on?

Using that graph the nurses and doctors should be able to tell you roughly how many mature eggs you would get. I would definitely be putting the question to them of what kind of result they think you would get.

I'm sending a big hug because it really is so stressful.

Xx

@lemons44 this is day 10 of stims. I think it’s going to be a cancelled cycle. I’m only on 187.5ui of pergoveris and I really think I should have been on more. I don’t know though- it’s all such a minefield!

Keep us posted @IslaO

I'm so sorry this cycle hasn't started as well as you wanted. It's so friggin stressful and exhausting 💗💗

@lemons44 just got the call.. cycle officially cancelled x

@IslaO I am so sorry to hear that. How frustrating, especially given you normally have so many follicles!
This whole process is so soul crushing, I am sending virtual hugs x