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.

@Sleeter0893 - I hear what you are saying and I've done all the baby showers, gender reveals etc for lots of friends who are on their second or third with no problem. When people are none the wiser it's natural for them to tell you. Also I understand that after a certain point a pregnancy becomes pretty hard to hide! It's just this particular friend told me when she was early on and it just upset me that I knew she would go on to hold her bubba and I never got the chance, plus she also came to my house and told me there which was worse as I wasn't even allowed to make an escape and it wasn't if I could ask her to leave. Ultimately I'm just exhausted with it all and now the thought of all of this sperm retrieval, ICSI etc is draining me... Feels like an impossible task. If it was up to me I probably would have thrown in the towel by now but DP is desperate and I know he'll be an amazing dad. He says he'll do anything to make it happen.

Good luck for the transfer in Sept and thank you for taking time to reply. 💕

Hi all
Just wanting some hope and any success stories.
My husband has Non Obstructive Azoospermia- diagnosed before covid. Lockdown was not fun at all(!)
We had TESA which was unsuccessful and further mTESE which was not sucessful too.

I have been reading about hormone treatment and second attempts at mTESE....has anyone had any success with that? I just feel so alone in all this, my husband has been staying strong and we just avoid the topic altogether, but I can't just give up.

Im hoping for anyone to reach out and see if they are in the same boat, or considering doing second mTESE.

Thanks and good luck to all of u xxx

I really understand the strain on friendships @Creatingspace. I'm lucky in that my friends have been quite sensitive towards my situation but I still have what I would describe as 'ugly feelings' quite often, where I just feel a huge amount of resentment, anger and jealousy towards anybody I know who got pregnant easily. I can't imagine having a best friend who is super insensitive. Just know that your emotions are totally normal and valid. Sadly I firmly believe that only those expediting infertility can truly understand what it's like. It's such a dark time but important to be as kind to yourself as you can.

Is your follow up appointment with a urologist? A lot of us have found that some fertility specialist don't know much about this issue and it's better to seek out a urologist if you haven't already. I'm so sorry you find yourself here.

Hi @SA1989 I'm sorry you're here too. I'm sorry I don't have any experience but I did do reading on this too. Could sperm mapping/FNA help? Have you seen Mr Ramsay by any chance. I really recommend paying for a consultation with him as he would know if any hormones or medications could increase the chances.

Thanks @pomdownunder1 and @TheFanciestPants your nice comments mean a lot! I've noticed lately I've got in such bad habits of thinking negatively about myself so it really made me smile to read your messages.
@pomdownunder1 have you heard any updates?

xxxx

Experiencing infertility *

@lemons44 thanks for ur post- we actually have been to Mr Ramsay and unfortunately the FNA mapping showed no sperm. But i was just reading on success of second mTESE and wandered if anyone has done that?
Its a long shotz I know

@Creatingspace I can totally understand, it hurts every time. It's so hard but try to stay focused on your journey and confide in friends that are there supporting you. I've kept my circle small for that reason! Also here is a perfect place to chat/rant/ask advice!

@lemons44 only 1 of the 5 fertilised. Following your advice, I asked for a day 3 transfer and they agreed - thanks again! They transferred yesterday. Such an emotional weekend for me going from 18 to 1 but hope this is a fighter xx

Good morning ladies!

I’ve started different replies over the last week and never seem to finish them.

@pomdownunder1 18 to 1 is just mind blowing isn’t it?! I found the numbers element following the retrieval so so hard. I seem to think everytime we get over one hurdle that everything afterwards will be plain sailing but I’ve realised that every single part of this is just nail biting and there are no guarantees. That is so great that you were able to use @lemons44 advice and advocate for yourself for a day 3 transfer. Keep your tummy and feet nice and warm and we will all be willing this little embaby to grow, grow, grow! I’ve heard the TWW is another level of excruciating so plan slme
nice things and keep busy (if that is even possible!).

Welcome @Creatingspace and @SA1989 - so glad this thread is of help to you both. I remember finding it in one of my lowest moments at the beginning of our journey following my partner’s diagnosis and really, it is one of the main things that has pushed me
through the darkest of times and I agree @lemons44 is the voice of reason and unpaid therapist to all of us; she always helps to calm and shares amazing insights. We could all do with a @lemons44 in real life but online is a good second best ❤️

@Sleeter0893 sorry things have been pushed back more than you wanted. Like someone else said, it will fly by. I find that planning things I couldn’t do with a baby always helps me- like yoga and leisurely coffee, lie ins with my partner in best with our books, drinks in the local pub with some nice food- all of those things would be hard with a baby so I’m trying to enjoy them now!

@TheFanciestPants hope you’re doing ok following your appt with Dr P. She sounds lovely! Is your partner holding up ok? What are your next steps and timeline now?

has anyone watched Save our Sperm on channel 4 player? It’s a light watch but Dr Ramsey appears in it and some parts are actually quite educational!

@lemons44 how are you feeling on the northeasterone? I found the first few days awful but think my body regulated a bit and was fine afterwards.

I find in my waiting period now I am obsessively trying to find podcasts and things that I can relate to and that show me a positive outcome for azoospermic couples.. in my hunt I came across a podcast by two friends called The Unplanned Pause. The Irish girl finds out her husband has azoospermia and both girls talk about infertility in such a way that I found it so amazing and relatable. The podcast ends after a season so I went on a Instagram search and the azoo couple have the most gorgeous baby boy now. She said it took 3 transfers but they got there. Hope for us all!

Totally understandable that it's been an emotional rollercoaster @pomdownunder1 I felt exactly the same going from 15 eggs, to 3 mature to 1 to transfer. It's snuggled up now in it's natural environment which will give it the best chance and all you can do is look after yourself. We are all rooting for you 💗

@IslaO aw thank you for such a nice message 🥹🥹 I only have 3 days of northesterone left and I'm so confused at what it's doing to my body. I started on day 2 of my cycle, is that when you had to start? The clinic said when I stop taking it I will have a period but im confused at how I can have a period so soon after having a period! Im starting to feel a bit hormonal and I expect it's to do with the side effects, is that how you felt?

Sorry the FNA was unsuccessful @SA1989 hopefully someone will have been through similar with success to tell. It could also be worth posting on Reddit in the male infertility group and I think Fertility Friends also has an azoo group xx

Hello everyone. Does anyone know what a good follicle count is? I've just had my private scan and she said one ovary is about 8 and the other 6 or 7. I feel like I have a long way to go before I understand all the IVF process. I'm also celebrating as I finally feel as though we are finally getting somewhere with our NHS referral after a very long year of getting no where! How is everyone else? Sorry I find it hard to keep up with everyone's journey on the chat but hope everyone is doing OK xx

Hi @Sammysquidge i know it can be very overwhelming starting to understand the whole process. Please someone correct me if im wrong but your antrafollicle count should roughly match up to your Amh. So yours is about 15. With that number, they roughly predict that is the amount of follicles you will be stimulating in IVF and potentially the number you will get on retrieval. It’s not an exact science and your antrafollicle count can vary each cycle. For example, mine was 24 one month and 20 another, just a few months later. My Amh is 18 and I got 15 eggs retrieved in IVF. I hope that helps but generally from your numbers, it doesn’t look like you have a low reserve but it is all relative to your age. For context, with my numbers above, I’m 34.

hope that helps x

@IslaO thank you that's helpful. We have a consultation on 15th August but just so hard to wait until then to find out what it all means. I'm not the most patient of people 😂 I'm 35 and will be 36 in November and as we have waited nearly a year due to problems with our referral it makes you worry that your egg reserve might not be so great any more lol what is the next stage for you? Hope all is going well xx

@lemons44 @pomdownunder1 @IslaO Thank you for the words of support. I have my fingers crossed for you all 🤞🏾

I had my fertility follow up today. They said DP will be referred to urology. I'm currently looking into going private and seeing the famous Mr Ramsey. The good news was that despite missing a tube everything else with me was ok. Right tube clear, decent AMH (21) for my age. They did say I have slightly low progesterone and elevated prolactin so need to repeat one of the blood tests.

Can't remember who mentioned it but I did watch that save our sperm documentary on channel 4. It's good that mens issues are being highlighted. I'm still kicking myself for not thinking DP could have fertility issues 🤦🏾‍♀️

Does anyone have any experience with imperial reproductive endocrinology in London? They seem to have quite a bit of knowledge/information on low/no sperm production. Sorry I'm still at the compulsive googling stage and trying to figure out options/what to do for the best! The amount of information you can find on the internet actually amazes me! It's a shame azoospermia is what I have to research!

@SA1989 https://prolistem.com/prolistem-videos/

Wondered if you might consider looking into this? It's American so not sure how easy it would be to get it but sounds like it could be a lifeline maybe? x

@lemons44 how are you getting on lovely? I know it's a very hard journey and our emotions are frequently all over the shop, but we do all really appreciate you and you are doing a great job 🥰
@pomdownunder1 fingers crossed🤞🤞🤞 all is going well with your transfer.
@Lily1994 how are you getting on?
@Creatingspace I would definitely consider going privately to see a urologist, the NHS waiting times suggested were extremely long and we found it super helpful (and not crazy expensive in the scheme of IVF). We went to see Dr P and she did various hormone tests so maybe start with a Urologist and go from there?

We finally got our NHS IVF appointment at the clinic we wanted so I am really hopeful this could be a turning point for us. 🙏

@TheFanciestPants no updates with me really. DH has his ultrasound booked with NHS next week (was surprised to get an appt so soon!).

When is your IVF appointment? Nice to things moving along for you :)

Thanks everyone for the kind words! I've been keeping warm and have been to acupuncture twice! I had a session pre and post transfer to support implantation.
I have terrible circulation and after both sessions I've felt warmer and had more energy, not sure if it's placebo but I'll take it haha

@Lily1994 that's great news. So glad you are getting somewhere.
Our appointment is surprisingly quick (given it took me more than 2 weeks to get my referral even sent!) and is the week after next. Have my AMH test on Monday then consultation on Friday with another AFC ultrasound. It seems bizarre how everything around criteria is based on the female partner but I guess in our cases maybe that's good news?!
@pomdownunder1 that's very promising. Keeping my fingers crossed 🤞

@TheFanciestPants thats really great news, glad everything is moving so quickly!! Is your fertility clinic carrying out the AMH test and ultrasound, or is it being done by your GP?

@Lily1994 fertility clinic. I think there's a weird nuance where it needs to be a specialist requesting AMH and then you need someone who is TVU trained.
I has some weird cycles last autumn so had a full gynae check out privately which was all fine except like most people my AMH level freaked me out (the NHS don't seem to care until they have been weird for a long time!) so it'll be interesting(read:terrifying) to see how the results compare.
It'll be around 10 weeks from actual IVF referral to first appointment so it could be worse. Apparently this is when we talk about fertility preservation too so fingers crossed the NHS will pay 🤔🤞🤞🤞
Is the ultrasound scheduled for a couple of weeks?

@TheFanciestPants fingers crossed everything is OK!! I did a AMH test privately last month which showed my AMH level to be 23pmol/L. I was told that’s normal so hopefully that’s ok for the ivf criteria. It’s always scary to get results, I still need to do my day 3 and 28 blood tests, hoping everything is fine. 10 weeks wait isn’t too bad!

Hi all, just a little update. Unfortunately I got the call to say that the blood test was negative. Still processing it. A stark reminder that no steps of this journey are easy 😢

Oh @pomdownunder1 I am so sorry to hear that. Take some time to process, after the journey you have been on it does seem especially cruel.
I guess the good news is that there are sperm and you can make embryos so there is hope.

Oh @pomdownunder1 I am so so sorry ☹️☹️ there are no words. Please just be kind to yourself and give yourself time to grieve. We are all here for you xxxxx