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

Congrats @Magix86

We had a successful Mtese in July. Started isci in Oct. We had a very low day 5 rate which they said was normal for surgically retrieved sperm. But we were very lucky to get our bfp first go.

The process for male fertility is a mind field. No one knew what to do to us. In the end we contacted a andrologist ourselves as the gp and urologist didn't know what they were doing. The andrologists secretary advised us on the exact directions to give to the urologist to make the referral. Once we were under the care of the andrologist and fertility clinics it was fairly smooth sailing, but getting there was a pain.

Good luck everyone and have a lovely Christmas x

Congratulations @wateringcanface that's great news! 💖

Congratulations @Magix86 & @wateringcanface. Great news and pleased for you both! Some more wins for the Azoo club!!! Wishing you a happy & healthy 9 months ahead!!

@Magix86 @wateringcanface congratulations both! This is amazing news🥳😍

Wow so much good news today, is there something in the water this month???Congratulations. @Magix86 and @wateringcanface Virgo babies incoming!

@Bran90 I missed your earlier message but huge congrats to you too!! Brilliant news 💖

Hello! Looking for some advice re an Azoospermia diagnosis if possible:

November/December 2024 - I did all fertility blood tests via GP after 1+ year of trying
January 2025 - I did US PELVIS TRANSVAGINAL ultrasound - one ovary is polycystic (over 20 follicles) but they are not worried as no additional symptoms of PCOS and they confirmed ovulation
January 2025 - Husbands sperm sample (NHS) came back as 0 with Azoospermia
January 2025 - Husbands private blood test showed raised FSH (15.6), normal LH (7) and normal testosterone (15.2)
February 2025 - had joint GP appointment (husband and I) with my GP. She told us to get husband to go back to his GP to seek urology (andrology) clinic referral for Ix of azoospermia and then as we were moving house / location we had to wait until we move to new GP for fertility clinic referral as best if new GP does this. My husband’s GP sadly wouldn’t do this referral which was frustrating and then once we had changed doctors they had found the correct person but it was too late as we had changed doctors so that has now been lost.
February 2025 - booked/attended a private appointment with urologist who has said it is non obstructive (as expected) - no need for an ultrasound. Sent for an additional sperm analysis and the genetic tests. She said his blood test is promising re FSH.
February 2025 - results back for one genetic test - no Y chromosome deletion. Results back for semen analysis showed 0 again. Now just waiting for Klinefelter result.
March 2025 - finally moved house / location and signed up to new GP. I just had an appointment about being referred to fertility which they are going do do however, they saying it needs to go via fertility and not urology and that the wait is going to be at least one year for the first appointment. This is really disheartening as I was expecting around 6 months as this is what has been indicated to me previously.

I just wondered if anyone has any further advice on what to say to the GP / anything else I can do? I just realise that once I have this appointment (in one year) then it’s going to be an even longer wait for the further treatment and how do we get things moving re the male side. We have had the diagnosis tests done privately as it was hard waiting without knowing the cause but if we have to wait for a year for a fertility referral there isn’t much point doing anything further privately?

Hi @SillyBlueSnake hope you are well. I was quite active on this thread last year when we had our initial diagnosis but in October 2024 my husband had a FNA mapping procedure done privately (with Dr Ramsay) and unfortunately the results were negative and confirmed that despite the medications and our best efforts, there is no sperm. We were completely devastated, and I had to take a break from these forums as my mental health plummeted. I’m still struggling a lot but I wanted to come on and reply to you as I know how hard this is.

we ended up doing everything privately from the sperm analysis all the way through to the procedure as despite being referred to UCLH andrology (in September 2023) the only appointment we had was in January 2024 and nothing since then - the whole way the Male infertility process is dealt with by the NHS is appalling. If you can afford to go private I would definitely recommend it as waiting on the NHS is painful.

We did a number of tests ahead of our appt with Dr Ramsay to try and fast track things (ultrasound to check for blockages, genetic testing etc). It was pricey but the we were keen to get results because of my age (I was 36 at the time).

None of this is easy or fair and it can feel really isolating so if you have any questions do let me know.

Wish you all the best x

@sackofpotatoes123 how are you?

Hi @SillyBlueSnake thanks for sharing your journey and sorry you’re here.

I’ll shorten our story, but my husband had his first zero count in April 2023 in a private test, we then went through GP, and he was referred to UCLH where we got his genetic results back in January 2024 as an AZFa deletion. I was then referred to fertility in my name by my GP, so we had his diagnosis before my referral.

I got an appointment for October but called every week for cancellations, and ended up being seen in June 2024. I then went through more investigations, we had a month long honeymoon and started IUI with donor in December 2024.

Unfortunately, one round was cancelled and then two unsuccessful so we’re moving to IVF which I’ve had a further 6 week wait for a consultation, and is later this month.

My recommendation would be if your referral is in, to keep calling the clinic / hospital you’ve been referred to and chase your husbands diagnosis. You’ll be much more equipped going into your appointment with his aide understood.

let me know if you need anything else, it’s such a long process, and emotionally very challenging 💖

I hope you’re okay @2022ttc i remember your messages last year when we were all a bit more active x

Hey everyone haven't posted for a while as been struggling a bit and lots going on. Just looking for any advice about how to prepare for Mtese? My husband is finally scheduled to have this at the end of next month and we are both just feeling a bit anxious about it. We are just looking into maybe booking a hotel to stay in London for 2 nights as we have nearly a 2 hour train ride to get there for the op so we figured to help our stress levels we will stay the day before and day after. Hope everyone is well xx

Hi @2022ttc thank you for reaching out. So sorry regarding your situation. It is so hard and unfair.

With your NHS appointment that you had in January 2024 - have they just literally done nothing for you since then.

My husband has seen Dr Pippa Sangster for all the tests privately and is now at the point with her where we can pay for the MTESE. We haven’t done this yet as I was told my wait for a fertility appt was going to be about year and while happy to pay for the MTESE I do want to get the round/s of IVF on the NHS as I know it can take quite a few so would like to save the money in that sense.

My husband has also been referred but like you say everyone just gets very confused by it. Waiting for the doctor will to ring him Monday for a further update.

Thank you @Disco24 sorry to hear re your cancellation but sending support for your IVF.

My referral is now officially in and it says the average wait time is 17 weeks. I am going away soon for a couple of weeks but will start calling when I am back.

It is all so confusing - need to find out what is going on with my husband’s referral as no one knew what to do.

Hi, I don't know if anyone can help me that's been in a similar situation. My husband was referred to London guys hospital for SSR which he had and it was unfortunately unsuccessful. We now want to go down the donor route but Guys are saying because we live in East Sussex they think we will need to go there for the donor route rather than in London. Has anyone had a similar experience and does this mean we will need to be referred back to east Sussex? I cannot bear the thought of more waiting as it's taken us a few years just to get to this point 😭 why is nothing ever straight forward, it's so infuriating xx

Hi @Sammysquidge so sorry to hear your SSR was unsuccessful. But positive you both have decided your next step.

The whole waiting and being passed back and forth is so painful, I’m sorry there’s another blocker. Can I ask, have you been referred to fertility already? When my husband got his diagnosis, which took a year, I then had to be referred by my GP as we were moving forward with donor. But they couldn’t refer me before as my stats were fine, so we had to have his diagnosis, don’t know if it’s similar. Apologies I’ve not experienced the location issue though. x

Hi @Sammysquidge I'm sorry to hear this. It might be worth checking out your local ICB and their eligibility/funding criteria - in my area it was clearly documented that with a diagnosis of azoospermia the couple should not be waiting for treatment, so hopefully this should be the same for you and even if you do need to move to your local area there should be an argument to be seen and offered treatment straight away. The longest wait for us was for initial appointments, confirming his diagnosis and then waiting for the SSR. Once that was all done things moved pretty quickly. I hope that helps a little, good luck.

@SillyBlueSnake Hi, sorry I missed this. So since Jan 24, we just got a text now for an appt end of June - a whole 18 month wait! Have ofcourse cancelled and let them know to remove us from the waiting list as we went private (and judging by the wait time I am so glad we did).

I hope everyone here is doing well. I have had a challenging 8 months after our unsuccessful SSR. Am slowly, slowly, trying to find myself again and do anything I can to feel more like who I was before all of this.

I hope everyone is doing well, none of this is easy. @sackofpotatoes123 are you ok?

Thank you all for your replies. @Disco24 I was the one referred initially to the fertility clinic in our local hospital so I've already had tests and they then also found my husband's azoospermia. It then took me fighting quite alot and seeing someone privately to get my husband diagnosed with klinefelters syndrome. It was because of this diagnosis and us deciding to try SSR that we then got referred to guys hospital for the specialist clinic and surgery. So now as I have been throughout this process, am still so confused as to what the next step is and as usual even the consultant doesn't even have the answer.
@Magix86 thank you I may contact the ICB. I made lots of contact with them in the beginning regarding our initial referral as we got lost in the system so they are probably fed up with me now 😅 I just hate constantly having to chase people for answers

Hi! I posted in this forum a long time ago but a lot has changed since then…

My partner had a microtese last year and it was confirmed he has obstructive azoospermia. They retrieved and froze some sperm but also did a reconstruction to the blocked tubes and gave us a 30% chance this would be successful.

He’s just been for an updated test and now has a count of 47 million. We actually can’t believe it, from 0 to 47 million! However, the motility and morphology still does not look great.

We will be having a consultation with our urologist to discuss results but in the meantime would love to hear if anyone else has also experienced this? If so, were you able to conceive naturally or did you have to do IVF? Also any recommendations for vitamins etc to improve things would be much appreciated.

i should say we are already extremely lucky to have a little one via IVF from the sperm they extracted whilst we waited to see if the surgery had worked. We don’t have any more embryos frozen though as we only ended up with one genetically normal so if possible would love to try and not have to go through it all again

Hello, I'm new to mumsnet! Not sure if people are still using this thread? But, we found out last year that my husband has azoospermia. We still don't know if it's obstructive or non-obstructive as we are waiting for the NHS. But we are thinking of maybe getting a private andrologist. Did anyone else go down that route? Just wondering how that would work if it turns out it could be treated and would we then end up paying for everything privately or could we get back into the NHS? We just really would like to know whether it's going to be potentially treatable or not!

@problematicpenguinsorry about your husbands diagnosis. The 2 can definitely go side by side and Going private would speed things up. DP’s GP just did the initial semen analysis and ultrasound and referred to urology which was a 9 month wait. We saw Mr Ramsey privately in London instead. He repeated the semen analysis and arranged further bloods to look at hormone levels, genetics, y-chromosome micro deletion. Mr Ramsey diagnosed NOA. He also had a varicocele. Mr Ramsey started DP on anastrozole.

Once we got the diagnosis confirmed, our GP referred us for IVF at Guys hospital in London. having gone private for the initial investigations, meant the remaining process was a little quicker. DP had the varicocele embolised and had micro-tese to retrieve sperm on the NHS and then we qualified for NHS funded IVF.

Please feel free to DM me if you want to chat more or have any questions, as this thread is quiet these days with many of us having success or exploring alternatives such as donors etc.

Hi all,

I first posted on the azoospermia thread (the first one) in July 2022.

I just wanted to update that after almost 4 years since I first posted, 2 surgical sperm retrievals, 4 egg collections, 3 frozen cycles and 6 embryos transferred, I am finally cuddling my 3 week old baby boy 💙

This journey is brutal. A marathon and not a sprint. I wanted to update to hopefully provide some hope for those still in the midst of this journey that it can take time.

I hope everyone is doing ok. Would love to hear how you are all doing.

Sending love x

Congratulations @lemons44! I often wondered how your journey was going. That's amazing news you got your baby boy. Such a long, drawn out process for you. Sending you lots of love xx

Huge congratulations @lemons44 !!!
I also kept thinking about you and am so happy to see this update 💞
Enjoy the newborn bubble with your boy, it goes so quickly 🥹
Xx

@lemons44 congratulations that's amazing! This gives me hope. Our journey has been just as long. We are soon going to be having our second round of IUI with donor sperm and if IUI fails then IVF. It definitely is a very brutal journey but hearing this gives me courage to keep going! xx

@lemons44 I have often thought about you, so it's wonderful to have your update. Thank you for being so lovely to me when I was really struggling.
Absolutely massive congratulations, that is the most wonderful news, I am so so happy for you. Enjoy those newborn snuggles they go so fast.

@lemons44 congratulations! So happy to see this message! it was such a long but worth journey 🙏🏼🙏🏼enjoy your baby boy🤗🤗