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.

Totally understandable @Magix86 it is so hard not to let our minds wander and it's an unknown journey we are on. I think if it were me i agree I would give them a call and ask what it's for just to put my mind at rest! Let us know what they say if u do call.

@itsmschanandlerbong yes totally understand about waiting, it's freakin' hard! I will be keeping my fingers crossed that the repeat SA in a few weeks shows some sperm!

Thanks @Ljp2022 I will be using buserelin for down reg. It was out of stock everywhere but apparently it is now back. Feel scared of the hormones but I have told work so at least they will be understanding if I'm not myself.

xx

@lemons44 I called them today but they couldn't tell me anything 😒 only said that the consultant has requested this follow up appointment and can't tell me any more. Apparently they do have my blood results on their system but they can't share them, which I understand. I really hate all the uncertainty and anxiety that this whole process involves. Nothing to do but wait now! Thanks for the support, hope you're managing everything OK

@lemons44 totally understandable. First time I was emotional but okay and I think a lot of that was down to just processing everything going on. Second time I was extremely low. I think if that happens to you just be reassured you will come out of it when you start the estrogen and it will all be worth it 💕

Hope everyone UK side is doing ok today. Mothers Day can be so hard for so many!

Hope everyone doing ok. Having a difficult few weeks. Have had at least 5 pregnancy announcements amongst family and a friend. They don't usually bother me too much but with so many within a short space of time, I feel like the world is rubbing it in my face!

My friend sent this to me today ❤️ so sending love to those mothers who have suffered baby loss and those longing to be mothers 💐

Hope everyone is doing ok too. That's lovely @WhiskeyInTheJar33 💗

@WhiskeyInTheJar33 that's a nice post and kind gesture from your friend.

I've been quiet on here lately but check in from time to time, hope everyone is ok. I've just started round 1 of stims yesterday, good luck for yours @lemons44. I was happy to actually get started with something after all the waiting around!

@WhiskeyInTheJar33 that is lovely!! Where are you with everything at the moment? Some days the waiting and slow pace of it all can be so infuriating and sad can’t it?

@pomdownunder1 you started stims? This is fab news! I’m trying to find your last update, but can’t figure out.. did you OH have a sperm retrieval and find sperm? We’re booked in for last April and I have knots in my stomach just thinking about that day!

@IslaO all good! We're going ahead with mtese but the urologist wanted me to do my retrieval before he booked dh in for it. He wants me to get double figure eggs as well to give us the best chance, hoping it only takes one cycle 🤞🏻 we'll do a fresh transfer if sperm is found.

Best of luck with yours, it is soo nerve wracking thinking about it! Yours urologist sounds positive about it, so I hope you can take some comfort in that! X

@pomdownunder1 ah I see what you mean. I like the idea of egg banking and making sure you have as many as possible to work with! How are you finding stims? I fear I will be an emotional psychopath! 😂

@IslaO hahah I did tell my dh he better stay clear of me 🤣
Actually not bad so far but I've only done 2. Got my dh doing them so I can just look away but the needles are surprisingly small. Just had a bit of uncomfortable cramping, I'm sure the moods/emotion will come!

@IslaO I have been waiting nearly 4 weeks now for the outcome of our funding application. Was hoping to have heard by now, but was told it would be around 4 weeks (so hopefully by the end of the week) I have submitted a complaint to the hospital as we still don't have the results of the final freeze. I am soo fed up of waiting and feeling no further forward considering we have been under this hospital now for a year!

Hi everyone. Hope everyone is ok and welcome to the new people, I’m so sorry you find yourselves here too 💔.

@lemons44 so thoughtful of you to check in and remember we had the M-TESE coming up. I checked out of mumsnet in the run up as needed a break from thinking about it all. We had a little holiday as well which was lovely. Had the M-TESE earlier this week and unfortunately they didn’t find any sperm. We are sad obviously, but DH has non-obstructive azoo so we have known this was a possibility for a while and had time to get our heads around it. In a way it’s also a relief to get an answer and not be in limbo any more! We are planning to try IVF with donor sperm so will see how that goes 🤞🏼.

How is everyone else doing? Hope everyone is taking good care of themselves, this is such an emotional rollercoaster xx

@springflowers2023 so so sorry 💕 what a horrible experience for you both to go through. I'be heard about the relief some people feel knowing they've done everything they can. I hope you're both ok, no one will know exactly how you both feel but I hope you can lean on others around you xx

Hi @springflowers2023 I hope you're doing ok - just want to send you a virtual hug it must have been such an intense week with so many emotions. I hope your other half is as well as he can be too. I was thinking of you and keeping everything crossed so I'm so sorry it wasn't the result you had hoped for. I completely understand what you mean about it being a relief to not be in limbo anymore.. it's so hard the not knowing. That's amazing that you're deciding the move forward with donor sperm and hopefully once the shock and emotions of have worn off, you can start to get excited about IVF and the next stage of your journey ❤️ x

Thank you @Carla2601 @IslaO and @lemons44 for your messages when I first posted, I really found strength and comfort in the weeks waiting till our appointment as a result and it was so useful to have some advice and hope!

We saw Dr Pippa this week - DP had some bloods done beforehand like you suggested - which told us that he has high FSH (we currently don’t have a copy of the test and I don’t know the exact number but have asked for a copy) I’m kicking myself for not writing more down during the appointment- it was quite overwhelming and I was trying not to talk too much and get in the way of DP asking questions that he wanted to ask. She was very kind but could tell we were overwhelmed.

NOA was her diagnosis as a result of the hormones. We were really hoping it was going to be obstructive and I think DP is pretty gutted - I feel like he avoids thinking about any possible outcome until it’s told to him by a real doctor (as in not me and Dr Google haha). He’s since been for an ultrasound which showed he’s got a small varicocele and also that his testicles are a lot smaller than they should be (sorry if TMI, it’s so nice to be able to tell all this to people who understand and DP has given me full permission to share) so it feels to me like a LOT of not very hopeful factors contributing to the problem.

Dr Pippa suggested he make some changes to his lifestyle - less running (he runs a lot), wearing looser underwear or none at all at home, avoiding alcohol etc, basically everything that could make the M-Tese more likely to find sperm I think. She didn’t suggest hormone treatment though - she said a few times the high FSH was a good sign that his brain was recognising there’s a problem and pumping it out to try to make sperm? Does anyone know if this makes the chance of finding sperm less likely?!

Next week he’s going to do a repeat semen analysis and a genetic test to rule out / give the full picture and then I’m hoping we can go back to Dr P when these all come back and then make a bit of a plan going forwards. We’ve decided we want to pursue the m-tese and take the trying to have genetic baby road the whole way and if there is none in there then we’ll re-group and consider a donor. DP really not keen on donor idea at the moment though. I’m hoping it’s just needs time and maybe he needs to try every possible avenue first. Dr P was pretty clear that based on our differing reactions to the NOA diagnosis we should wait to start the stimulation process on me as if we don’t find sperm we might not be ready to go straight to back up donor. I wish he could consider this option as I just want to make our baby regardless and can’t bear all the waiting and possibility of bad news! But I get it’s a lot to process for him.

What a crazy journey this is turning out to be. I keep thinking about the appointment and wishing I’d clarified and asked more. We’re going to make more of a united game plan for going into the next one - not to mention because they are SO expensive. Dr Pippa suggested we ask to be referred to her through the NHS but then also said the wait to see her again would probably be about 6 months. Don’t think I can bear to wait that long! She did advise I get to the GP to get the funding application started for ICSI so I guess in the mean time I can do that. Was reading about all those rules and it’s a real minefield. The NHS in our area doesn’t offer any funding for sperm donor IVF though, which feels like a double kick in the teeth if they don’t find any sperm.

Eurgh. Just feeling sad about the whole mess and hoping we can find some ways to enjoy life and each other in all the gaps of waiting to find out more.

Sending love to you all 💕

@springflowers2023 sorry to hear about the results of your M-Tese but in so much admiration that you are moving on to donor sperm and IVF - I feel so strongly that a family is a family regardless of genetics!
If you don’t mind me asking, did you both know you wanted to do that if there was no sperm? How did you both get there and was it different for each of you or were you pretty clear on that from the get go?
Also, will you choose a donor from a sperm bank and try to match vaguely to your partner?
Sending lots of positive vibes as you begin on the next part of your journey xxx

Thank you everyone for your lovely messages 🥰.

@Anmika93 when we first found out about the azoospermia almost a year ago my partner said he wouldn’t want to use donor sperm. But as our journey progressed and we talked about it more he came round to the idea. I just asked him what changed his mind and he said it was partly needing time to adjust but also that we’ve tried all the other options and he still wants a child. We also became aware of a few other people who have used donor sperm, e.g. knackered knackers on Instagram and a friend of a friend. I think seeing other men do it has been helpful for him. Sending you all the best, I know it’s not an easy journey. Feel like I’ve been on a real emotional rollercoaster but I actually feel at peace with the donor option now xx

@springflowers2023 so sorry to hear of your results. Glad you are moving on with a donor. I know what you mean about feeling in limbo! Apart from the initial shock of diagnosis, I've found being in limbo the hardest to deal with!

Have been a little quiet on here. Having a bad week. Still not heard about the funding and now been over 4 weeks. I decided to put in a complaint about my clinic as not happy. Still hadn't received any results for the 4th freeze and no one can tell me if DP will still need micro-tese.
I got a call from the head of the clinic who was "upset" with my comments as I've never been seen/treated by them 😡 and that its urology that I should have the problem with as they are dealing with DP. I said it doesn't matter as they are all under the one clinic 🤷🏻‍♀️ my main issue with them is poor communication.
He basically tried to put the blame on us as we should have emailed urology after we had done 3 freezes and we've only done 2. I explained we have actually done 4 and I've emailed soo many times to ask what the next steps are.
Turns out, us thinking no news is good news after the 4th freeze was wrong...the 4th sample also had no sperm to freeze (same as the 3rd) except they called after the 3rd to tell us.

So they are now trying to squeeze us in an appointment as they are fully booked for the next few weeks, because they want to pacify me after the complaint.

I don't know what to do for the best! I really don't want to have IVF at this clinic if funding is granted! Ive contacted several other clinics to see if I can transfer funding to them, but they don't take referrals from my CCG. If we don't get funding they have said they will still do micro-TESE on NHS. But In a way if we don't get funding and we have to go private for IVF i think id rather pay the extra to have the micro-tese privately too. DP wants to get as much done funded by NHS so we can use our savings for IVF but not sure how much more of this I can take 😞

@WhiskeyInTheJar33 i am so sorry to hear this. This journey is awful enough without being done over by clinics like you have been. I’m not from the UK so don’t understand the funding and transfer of funding stuff but I really don’t think it would be good for your mental health to stay with a clinic who have been so so poor at communicating. That is just awful! How much would the microtese be to go privately? I can’t believe they didn’t ring you after the 4th sample.. what an awful awful limbo to leave a couple in!!

Thanks @IslaO. The clinic just don't get what they've done wrong! Micro-tese privately costs between £2500-£3000, but when we're looking at nearly £20,000 for a 3-cycle package, it seems a small price to pay. Just wish my CCG would hurry up and give an answer to the funding application so we can move on!

@WhiskeyInTheJar33 Microtese costs closer to £4k -£7k from the research I've done which is scary not sure where you have seen for £2.5k. Cheapest was around £3500 including storage with Bourne in Cambridge. WIth Jonathan Ramsey it's closer to £7k

@donnie12 that's interesting. This was on a price list a clinic sent me. They said around £1700 for the actual surgery. £1000 for sorting the sample after. And then storage costs on top of that. So think it was just over £3k

@WhiskeyInTheJar33 I would definitely proceed with the complaint, this process is stressful enough without all of this added stress!

DH has his repeat SA and bloods on Monday, and consultation on the Wednesday. Just trying to get out head around some of the options. I saw some discussion around cost for SSR, from my research nowhere in Scotland offers this. Has anyone spoken to and got quotes from any other clinics? How much and what price?

@Anmika93 maybe consider asking the doctor at your next appointment if you can audio record it? We did that on one of our consultations and honestly it was a game changer. I was able to re-listen and it was one of those appointments with loads of info and when I listened a second time I picked up stuff I'd missed initially.

That sounds sensible to get the ball rolling with your GP. From your side you will need day 3 and day 21 bloods, and a chlamydia test. They need both of these before the GP will even send the referral to fertility services so maybe start planning for your next cycle.

Did Dr P recommend vitamins? If not I'd still look into it as this could also maybe help the chances.

xx