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

Hiya, new here and wanted to introduce myself! We are right at the start of our fertility journey and still finding our feet.
My OH has azoospermia- non obstructive. Currently waiting to see the urologist to plan our TESE and then go for ER after, . We've talked about sperm donor and OH is on board with this if needed. Silver lining is that all my tests have all come back fine so far. Whilst this has naturally been a massive shock to us I had always had an inkling something was wrong and am glad to have some answers and progress.
Have been lurking reading all the posts on here for a few days, I'm thankful that spaces like this exist as I personally don't know anyone else going through the same thing as us.

Hi @pigbabe

You seem pretty far along your journey. Very healthy that you've had the discussion on back up options if the TESE is unsuccessful and you are both on board. How long had you been trying till you got the diagnosis?

@wateringcanface Well, I feel silly about this, but we haven't actually been TTC as we had always planned to start this January/ February 2024. It was a complete fluke that my OH had some bloods for something else and they said " we'll just check your hormones whilst we are here" which set a chain of events into action. Obviously I am really grateful that we have found out before any heart break of TTC with no chance of any success naturally, but it does feel a bit whirlwindy.

Oh, well I guess that is kind of lucky (I mean it would be even more lucky if you weren't in this situation at all - but you know what I mean). We are in a similar boat, we never got to TTC as our difficulty was evident after my OH had surgery beginning of last year, we had planned to start TTC October 2023 originally, but never had that opportunity.

It sounds as if you have managed to move quickly though, it's taken us about 9 months to even get our first appointment about fertility.

Our first appointment is next week! My OH stated a preference to just wait for NHS now rather than considering a private round while we wait, he would be swayed to do a private round if I wanted. I'll have to wait and see next week what they tell us the proposed time scales are, I am guessing we will be looking at October/November. It just seems so far away.

@wateringcanface Oh wow we are in very similar boats then. Best of luck for your appointment next week, has your GP been able to do any of the preliminary bits and bobs to speed things up?
I don't know what area you are in but from what I hear from others things can speed up a little once you have that first appointment in certains places.

@pigbabe

Our gp did Fertility bloods at the beginning of last year for us both, both were fine but are probably outdated now. I had a private Fertility MOT, everything fine apart from a fibroid. I was told that shouldn't effect Fertility but may make egg retrieval tricky as its covering left ovary. There's no other investigations my OH can have.

We have been told a 6-9 month waiting list for ivf. but I don't imagine they'll put us on waiting list after first appointment unfortunately. I'm hoping I'm wrong and they don't delay with any pointless interventions when it's inevitable we'll need ivf.

@wateringcanface Wow 6-9 months seems like a long time to wait! Yes I hope they don't make you repeat investigations that seem needless. Let me know how your appointment goes, fingers crossed for you!

@pigbabe sorry you find yourself here. Has your DH done any further tests to find the reason for the NOA?

@WhiskeyInTheJar33 any update with your IVF funding/ start date?

DH has been on Anastrozole for a few months and MTESE is scheduled for April (nervous!!) Does anyone know at what point he needs to stop taking the medication prior to surgery?

@Lily1994 hello! Just read your message. My husband has been on Anastrozole for 6 weeks now, and he had some blood and semen tests this week. We go to see dr Ramsay next week to get the results to see if they've improved anything I.e. if there's any sperm in the sample (he did tell us there's only a 10% chance so it's unlikely), then he will need to continue it for a few months. If not then he said we would be looking for an Microtesse for April time too.

@Lily1994 my DP was on anastrozole prior to microtese and was told to stay on it right up until the procedure. He stopped after the procedure so they could monitor testosterone levels without medication.

I am just waiting for AF to arrive in feb and will hopefully be starting 😬

@2022ttc we are also going to see him next week, but we’re thinking twice as the prices have increased 😬 are you looking to do your MTESE privately or via nhs

@WhiskeyInTheJar33 ooo exciting, hope it all goes well!

@Lily1994 have the prices increased? Do you know what the microtesse charges are? We are still undecided.. our nhs referral is with uclh so we have that as an option too. It's all so overwhelming!

Hi all,

We found out my partner has azoospermia at the end of 2023. We just saw Dr Ramsay for our first appointment and he said he has a gut feeling it is an obstruction issue as hormonal and genetic tests all ok. We’re just waiting for some updated blood test results to come back and then we’ll have a follow up appointment to discuss next steps and a plan which seems likely to be surgery!
has anyone else been in a similar situation? How long was your wait until the surgery?
Thanks all for sharing your stories - so nice to not feel so alone on this journey!

@2022ttc yeah it’s now £350 for each consultation (previously £300). Based on previous posts I think the MTESE is around £5-6k. We’ve decided to do the surgery at Kings as it a lot of money to spend!

@24b seems like things are moving fast for you which is good. What tests are you waiting for?

Yes it’s so nice to feel like we’re starting to make some progress after trying to figure out why’d been struggling ttc! I think the blood tests we’re waiting on are just some hormonal ones that he wanted him to repeat that had previously been done on NHS

Hello, it's been a while since I posted but I have been reading everyone's updates.

Thought I would post as we had an appointment with Dr Ramsay today and I feel it was definitely worth the money to finally speak to someone who doesn't repeatedly tell us to have round after round of IVF without doing any further investigation.

His suggestion was moving to the lister hospital for our next round of IVF so that fresh sperm can be aspirated on the day of my egg collection which will hopefully give better quality results, at the same time he is hoping to do some reconstruction surgery to bypass the obstruction which we believe is in the epi. We are having a sperm fragmentation test and a biome test (both of us) and have a follow up in 6 weeks time to agree a plan.

like @24b I'm also keen to hear from anyone else who had this type of surgery?

@2022ttc Re Microtesse you can have this done on the NHS fairly quickly, your partner can be referred by his GP (We were referred to the Churchill hospital in Oxford) and booked in for MicroTesse however we requested they try PESA first as less invasive and were successful. I believe we waited 3 months including 1 postponement due to strikes.

Hello all. Have been watching this thread for ages and finally ready to join. OH had mumps as a teenager which went on to trash his testicles. Not much was done about it at the time, jump forward 10 years and he was diagnosed with non obstructive azoospermia and slightly low testosterone. We were messed around for ages on the NHS and eventually went to see Dr Pippa Sangster at King Edwards hospital in London after lots of good reviews and reading about her on twitter. She runs a big NHS practice and has lots of surgery and endocrinology experience. She and her team were all so kind and professional (Cecil in particular was amazing) and she filled us with complete confidence. Her costs were also slightly less than some of the other names and it really felt like she was trying to save us money without lots of unnecessary tests or follow ups. She treated OH with clomiphene first to improve testosterone, though it didn't help to get sperm into the ejaculate unfortunately it did make him feel stronger and better. He then had a microTESE a few months ago - all went well with fairly straightforward recovery although he was obviously a bit sore for a week, but nothing awful. But amazing news, although she said his testicles were very unhealthy, they were able to find a few pockets of very healthy looking sperm and 7 vials of tissue were frozen - should be enough for at least 5 or 6 ICSI cycles!! about to get going with the first cycle and feeling very optimistic after an awful few years. Good luck to you all out there

@Bran90 both dr Ramsay and the nhs doctors we met with both said microtesse would be the only viable option for us.

@lulu899 tomorrow we go to see dr Ramsay and will find out if the Anastrozole helped my husband at all. We both are feeling really nervous as we know that if it hasn't then the next and what seems like final option is the microtesse and we are both so, so worried that if that results in nothing then we have reached the end of the journey.

Reading your story filled me with so much hope as my husband has had a difficult medical past as a child and teen so we are really worried it's cause permanent damage. I'm soooo pleased for you and your outcome and pray that you continue to have a successful journey that leads to a happy and healthy pregnancy

Hi @everyone
Yesterday we went to see Dr Ramsay. Although the Anastrozole helped improve my husbands hormones and testosterone, it unfortunately didn't help produce any sperm in his SA. We knew the odds were low but nevertheless we're hopeful. Dr Ramsay said the next step would be to schedule in the MicroTESE in May, with Anastrozole to be taken until then. However he did want to manage our expectations. He said whilst for some it would be a 50% chance of finding sperm, for us it would be significantly lower because of the tumour and chemotherapy my husband had as a child - it seems has caused a lot of damage. He said even if they find sperm, it needs to be able to survive the freeze / thaw process and then also wanted to make sure that we understood my age may be a factor in how successful ivf could be. Overall, we left very upset, disappointed and lost. I spent the entire evening crying because I feel like there's very little hope for us. That being said we need to figure out whether with the low chance of success, we want to fork out this much money and proceed with Dr Ramsay or whether we continue the journey on nhs with UCLH

@2022TTC its a difficult decision and I'm sorry you are feeling low right now.

@2022ttc sorry to hear that.. it’s a difficult decision. We decided to go with NHS because if it was unsuccessful then at least we haven’t wasted our money. UCHL is very good for MTESE and I recall Pippa Sangster works there - she was trained by Ramsey and is just as good (so I’ve heard).

Hi All!

I have been watching this thread since we learned that my husband has zero sperm count and it's been so helpful to learn about your journeys. I am so glad I found this thread just when we got these devastating news for us.. It has really makes us feel that were not alone in our journey. So I just can say thank you all for sharing your experiences!

We are still at a quite early stage. We don't have the full diagnosis yet, but everything seems to indicate that we have non-obstructive azoospermia. We are doing soon some genetics test to determine whether we could do MTESE.

We are currently doing all tests privately but we are also trying to progress with NHS in parallel (even if really slow so far as expected, we haven't even done a sperm test yet via NHS...)

@Lily1994 would you mind sharing how much waiting time you had with NHS since you were referred by your GP until you had the MTESE done?

Many thanks in advance!

@2022ttc So sorry to hear this. Thought I'd give you our experience to help you with the decision.

Like you given less then 50% chance (30% chance due to NOA caused by the mumps) so had to decide if it was worth it financially to go through the microtese as it is over £5k.

Without being pessimistic, although they might say 50% the odds are actually lower....that's 50% chance of finding just 1 single sperm. If they find just 1 sperm they class that as a success even though it isn't....if they find say 1000 sperm (but they are all useless) they class that as a success, if you get my drift....it's just odds on top of odds making the success rate smaller then what they claim.

Is your partner open to donor sperm? Would be the easiest, most successful and quickest option for you....after we looked at the odds of microtese success we went donor sperm. My partner is okay about in all honesty and just wants to go through the baby process. Much preferred getting the donor sperm from Denmark as you get to see adult pictures and there is a lot more choice then the UK banks.

It sucks Azoospermia it really does but it does get easier with time. Wishing you all the best.

@2022ttc really sorry to hear that you are feeling deflated. This is such a very unfair situation.

I wanted to add my two cents in case it will be helpful to you. My partner was given a 50-50 chance of a successful micro-tese but our sense was that the doctors were very unsure as to the result. My partner has a long and complicated medical history so we were not very hopeful and I was bracing myself for the worst. The procedure did find sperm, which was amazing! I still haven’t really processed it. We decided to time our cycle so that I would do an ER a few months before hand so we could use his fresh sperm (if any were found) and my frozen eggs. This was to give the fresh sperm the very best chance.

Ultimately you need to consider if you and your DH want to try everything, even if it may not be successful. If that’s the case then the next question is whether you want to expedite things by going private, or if you are ok to wait a little longer with the NHS.

Please reach out if you have any questions that I can help with.

@2022ttc sorry to hear this. Like you my DP was given a 50:50 chance of successful micro-tese and we decided to persevere with NHS. My DP didn't like the idea of donor sperm and didn't want to waste our savings on the procedure if it wasn't successful. Our clinic said we have time on our side with my AMH being good. So I was happy to go with what he wanted. His surgery was successful and we have 3 vials frozen. Am not sure on the quality but have been told it's good enough for multiple cycles. I am about to start stims in the next couple of weeks. So will soon find out how the frozen sperm thaw and I just hope it's good enough to get some day 5 embryos.

@Blue234 sorry you find yourself here but this group has been a great support. We like you did all our tests privately for DP as the waiting list for NHS urology is 9 months in our area, so we saw Mr Ramsey. In the meantime I was referred for IVF on NHS and timings worked out ok.