Azoospermia support - Part 2

[WhiskeyInTheJar33]

@2022ttc
@Ljp2022
@lemons44
@IslaO
@Carla2601
@TheFanciestPants
@HoustG
@Sleeter0893
@Creatingspace
@Nats140
@pomdownunder1
@Annies1992
@Lily1994

As the old thread is almost full, I thought I'd start up a part 2 so that we can all continue our journeys together!
Apologies if I have missed anyone x

World Childless Week

Hey @2022ttc hope you are well. Have you had your FNA yet? I remember you saying it was about now? Sending love and thinking about you xx

@sackofpotatoes123 hello, how are you? I'm ok, been feeling a bit down lately. We have the FNA middle of October so a few weeks to go yet. Hope you are well, hope you don't mind me asking but how did the FNA results go for you? Xx

So sorry to hear this but know that it is completely normal. It's such a hard, lonely path isn't it? Plus the long waits don't help.

We've had the results and it was successful which is great news. My husband is thrilled as it's the first lead we have had in the journey so far. We were both braced for the end of the road.

I'm not sure what is normal from an FNA for NOA but they found nothing at all in one testicle and the other they found small amounts of sperm production in 3 out of 18 biopsies so likely to be enough for one or maybe two rounds max. With that in mind he's predicted a 20% live birth chance taking account of my stats too so there is a lot for us to consider given that the MTESE and synchronised ICSI are likely to cost in the region of £20k plus a stay in London.
I am sure we will continue as we have come so far but we are having to make some tough decisions on finances at the moment.

How is your husband feeling about things? Really praying it goes well for you in October xx

@sackofpotatoes123 that's amazing news!! Really pleased for you! I mentioned this to my husband too and he got really happy as well. I hope the rest of the process goes just as well for you. I understood from dr Ramsay that the MTese has to be after a couple of months gap?

We are both ok, I have to admit my husband is a lot more positive and stronger now than before and I've become the opposite. I turn 37 in a few weeks and I know it shouldn't but the clock ticking is getting to me

I know it feels like allot of money and we had the same apprehension but given the results we had (appreciate different circumstances) but we are glad we went ahead.

Thank you so much. That was such a lovely thing to say . These forums have been a breath of fresh air for talking to people who really get it xx

Mr Ramsey wants to schedule for Jan/Feb - a bit longer than he originally said but it's to give my husband time to shift more weight. He's always struggled with weight although throughout this process, he has discovered that it will have been made immensely harder by the very low T levels that he has probably always had.
I was hoping to get started sooner but it gives me time to try and improve my own egg quality a bit more as I have been told I have a reduced egg reserve for my age and AFC. I am also turning 37.

Really sorry to hear you are struggling. I do think that the wait is that hardest part isn't it? Do you have family and friends to talk to for support?
I really think it's hard to explain to people isn't it? Especially when you are glossing over the finer details to protect your partner. I have had some counselling sessions and it has really helped me to try and work out what I can and can't control in the process. Would really recommend it and it's been good to speak about it aloud to someone not connected to the situation.
Sending love and always happy to lend an ear xxx

Thanks so much @Bran90 really
appreciate your thoughts. I've scrolled back to read your story and am thrilled with the success for you. Congratulations! How are you getting on?

We have agreed to go for it and proceed as it is what we really want. We also know that if it doesn't work out, we can look back and say we gave it everything and hopefully that will help us to get some closure.
Really appreciate you reaching out xxx

Wishing you the best of luck!

We did PGT testing on 6 of the 12 embryos and 5 are normal. At long last we have hope we might be successful.

We were hoping to do a natural cycle this month but with everything that has been going on we haven't had a holiday this year and are both pretty tired. Given how our work schedules and my cycle has fallen we have decided to prioritise a holiday, but hoping to give these embryos a chance soon.

We both have demanding jobs that haven't slowed down despite treatment. However on the plus side I did convince my HR department to write an IVF policy so fingers crossed it helps someone else.

My partner seems to have recovered well from the procedure and is now back to the gym and business as usual, we will do a test to see if the blockage has been removed in a few months time.

@sackofpotatoes123 hi how are you? I'm feeling really anxious and down lately. Don't feel like doing anything. I keep thinking about the FNA mapping in a few weeks and keep thinking lots of what ifs, like what if the results mean it's the end of the road for us. It's been probably the longest and most difficult 12 months, as I'm sure it has been for most of us here on this forum. I just feel so mentally drained now. How long did you have to wait for your results? And how were they given to you? Phone call or email etc?

Hi @2022ttc so sorry I completely missed this. I've only come on to see how you are getting on and how the FNA went?
To answer your questions, it took about a month for the results but I think that may have been a little longer as Mr Ramsey was on holiday. It was initially said to be about 2-3 weeks and he gave us the results on the phone. I really hope you are both ok and it went smoothly xx

Hi @sackofpotatoes123 hope you're well. The procedure went well thanks, and my husband has recovered well. Now just the wait for the results and I've tried to forget about it and enjoy this period of unknown but it's always at the back of my mind. I hope you don't mind but I've sent you a private message to ask you something x

Morning

I just want some comfort and reassurance.

We had 2 cycles of ICSI IVF, but both failed 😔. I feel absolutely devastated and we had such high hopes. We are now going to take a break, save for the next couple of rounds and try donor sperm. Has anyone used donor sperm at all??

We are heartbroken that it didn't work with my husbands sperm, but it's another £7k for a microtese with no guarantee of sperm. It's so hard that you also have to think of the financial side of things.

Natalie

@Nats140 so sorry to hear what you are going through :( sending you a big hug from here🤗
We have a separate thread for some of us in the azo journey that decided to go via sperm donor in case it helps!
Azoospermia - Donor Route Support

@Nats140 sending you all the love and hugs ❤️. My husband had a failed microtese and so we are heading down the donor route.

I was also going to share our other thread as @Blue234 has done above. It's really useful!!

Quoting on my last update for ease of reading for anyone else in the future.

We ended up with 12 top grade embryos AA-AC/CA grade. We PGTA tested 6, 5 were normal.

After a break of a few months we had our transfer last week of a 5AA embryo and i'm getting a faint but visible second line! Obviously super early but we have never in 6 prior transfers seen a double line so even if this one doesn't work out we feel so hopeful about where we are.

Hope everyone else is going on ok?

Ah congratulations @Bran90! Hope the lines continue to get stronger and you have a healthy and happy pregnancy. What an amazing early Xmas present and a great amount to have in the freezer! X

Hi everyone. I am hoping to get some guidance from this group. Looking at some people's stories have been so helpful to read.
My partner is a CF gene carrier and I am not. He is unable to conceive naturally due to congenital absence of vas deferent, we had that confirmed several years ago.
We have now approached our GPs for fertility support. I went to an initial appt at our NHS fertility clinic and they then told me that it was a joint appointment even though the letter was just to me and done through GP so sadly we did not realise. I have since had all initial tests done and they asked us to chase arranging a sperm sample with GP.

This is where its got difficult. GP says they don't know how to arrange surgical sperm retrieval and to speak to fertility clinic, fertility clinic say go back to GP. We have been back and forth several times but both keep directing us to the other and seem to not know much of the procedure. We spoke to urology who said also to speak with GP but again GP said referral would be from fertility and to speak to PALs for a resolution. That is as far as we have got, the next fertility appointment is next month but only a phone call.

I wonder if people could share how they were able to get the surgical sperm retrieval arranged or referred for and at what point it was done. Any advice would be a great help. Thank you.

This is such good news @Bran90 !!! Fingers crossed that line gets darker and what a good number to have in the freezer.

It's been quiet here these last few months and been wondering how everyone is getting on. I know some of you were waiting for m-tese and others were proceeding with donor sperm.
It's such a difficult time of year for some going through infertility but I hope you're all doing ok x

@Aprildove sorry you find yourself in this situation. It's soo frustrating when you are passed from pillar to post!

If I remember rightly, DP was referred to urology and I was referred to a gynae/fertility service at my local hospital (although they did not do IVf there). DP didn't see urology in the end (long story but we ended up going private). From my referral to gynae/fertility clinic we were referred to Guys Hospital for IVF who then applied for funding an arranged for the m-tese etc.

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

the male partner needs to be seen by a urologist with a fertility interest (NOT the gynaecologist in the IVF unit). There are now several in the UK depending on where you live (London- UCLH: Pippa Sangster, Guys hospital; Maj Shabbir Kings Maria Satchi, Manchester Mr Modgil, Newcastle Kevin Mceleny, Southampton, Cambridge and so on). Make sure they have access to a lab that deals with testicle sperm. You can actually be referred to any one of the above, it doesn’t matter where you live. The funding comes from NHS England not your GP (unlike IVF where there female partner must be referred into the local unit) so in general if you know the same of someone appropriate, the GP should just refer your husband in asap.
@Aprildove where do you live vaguely?

look up knackered_knackers on instagram

It may be different depending on where you live but our route was GP appointment for me -> Referral to hospital for female fertility tests ordered by gyno consultant -> Once all good -> Referral to Urology for my partner (Done by my consultant) -> Kick started IVF funding process (Also done by my consultant) -> Referral to IVF clinic

The process for me was frustrating. I gave feedback to say a flow chart would be helpful to understand the steps and timings... make sure to get to know your consultants secretary as they are the gatekeepers of appointments and paperwork

Hope this helps!

Thank you all for your replies and sharing your information.

We are based in Bedfordshire. It seems to feel like at this point that both the fertility clinic and the GP are completely unfamiliar with his condition and just don't know what processes they themselves need to follow. The last message from the GP when we asked for a urology referral was 'your GP truly does not need to be involved'.

Hearing your paths is helpful and I will be able to raise further questions at the next fertility appointment. Thank you again.

@Aprildove so sorry to hear of all the confusion, it can be so frustrating! We are also in Bedfordshire. We were referred to our local fertility clinic by our GP. The fertility clinic then referred us to the ivf clinic and arranged funding for surgical sperm retrieval. Our first appointment with the ivf clinic was with andrology and they did the mtese there. I imagine it differs depending on where you are seen but I think it should be the fertility clinic organising this for you. Our GP did nothing but the initial fertility referral. Hope it all works out for you

I was also wondering how everyone was getting on here.
My partner had a diagnosis of azoospermia 2 years ago, with AZFc deletion. He tried clomid for 3 months and then had an mtese in September but it sadly didn't work - they didn't find any sperm.
We chose to go down the donor route and had IVF with ICSI this month. We had 16 eggs collected, 11 fertilised but only 2 blastocysts made it to day 5. Very happy to share that it's OTD today and we have our BFP after our first fresh transfer 💖
Really wishing everyone else here the best of luck! This thread has been such a support x