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

@WhiskeyInTheJar33 thanks for your message! I have an appointment with my GP next week to check if they could refer me for IVF. I just hope they dont tell to wait until we have a full diagnosis for my husband...So I am keeping my fingers crossed. Let's see how it goes.

Hey @Blue234 thank you for sharing your story 💖

Just wanted to share our experience incase it helps. I was asked to do an initial internal scan, hormone check and BMI before my partners full diagnosis. However, the doctor said they can push the referral to the fertility clinic quicker once you have a diagnosis. So you can definitely get some pieces in place before diagnosis. Pushing the dial in the right direction at least!

Hi @Disco24! Thanks a lot for your message! That's great to know and hope they are also keen to do any checks for me before we get the full diagnosis. I actually did all my checks privately a couple of months ago and everything was looking fine, but I guess maybe NHS might want to repeat them.

Yeah we had to repeat all tests with UCLH, but I imagine that’s NHS trust dependent.

They can’t refer you for treatment until full diagnosis as that might not be the step you require. So for us, IVF isn’t our first step now, so I understand why. I was just frustrated a few weeks ago 😅

@Lily1994 - Well apart from the normal hormone tests no, there's actually been quite a development in what's happened with us over the past week or so...

We went to see a fertility urologlist who basically told us because OH had Mumps as a child, with his physical exam and blood results that microtese would be the only option forward-but that generally there would be a 20-25% chance of finding any sperm. They then said that the chance of that sperm being good enough to make an embryo that actually results in a live birth for him would again be a further 20%- meaning generally a 4% chance overall at best!

The urologist told us that finding sperm and finding sperm good enough for alive birth are two very different things. We did have a little think about if we were one of the lucky 4% how good would that DNA actually be. Anyway, we decided not to go ahead with mcirotese as the cost was going to be approx £6-7k after the genetic tests- the Urologist said looking at my OH physically he thought the karotype testing would be normal so it would only be to rule out microdeletion.

We've gone down the sperm donor route, managed to find a donor who matched my OH physically and seemed to have a similar temprament. Which now means our chances of IVF being successful for a live birth have increased massively to 50% per embryo transfer. I willl say I did not expect my OH to be so accepting of donor sperm, we read a book called "Three makes baby" by Jana M. Rupnow that I think has really been useful and had a counselling session with our fertility clinic. Also been following the "Knackered Knackers" podcast- he's a guy who has fathered children through sperm donation and has NOA himself.

My medication is now being delivered on Monday and we will be starting stims on my next cycle. It's moved quite quickly once we made the decision for donor sperm which is actually quite exciting! We did consider IUI, but the rates of success is lower than natural conception so thought in for penny, in for a pound.

Oh @pigbabe thats so exciting! So happy you’re about to kick things off.

Thanks for the book recommendation, I’m going to take a look into it. Knackered Knackers shares some great stuff, and my OH is in his WhatsApp group. I’m awaiting my fertility referral now as we’ll be donor too, so do keep us updated on how you’re getting on 💝

Hi everyone. Hope you're all doing ok. I was on here about a year ago but took a break while we waited for our referral. Basically my partner has y deletion? We went to the fertility clinic a year ago and were told we'd need ivf with icsi but they couldn't refer us as my partner needed to be with a local GP for 1 year. Not much has really been explained to us other than that so we've been a bit lost and unsure! So we've waited a year and now due to go back again to discuss our referral. It's been a very frustrating wait. I'm hoping you might have some advice for questions we can ask at the clinic...I'm terrified that after waiting a year we will be told there's another reason they can't refer us...

Hi everyone

It's my first time posting on here (and mumsnet in general). I can't tell you how useful I have found this thread.

We are 2 1/2 years into TTC and my husband has just been diagnosed with non obstructive azoospermia following an appointment with Jonathan Ramsey. Mr Ramsey was very honest with him about several factors including his weight and has also referred us to a nutritionist . He has been prescribed anastrozole and tamoxifen and we need to go back in 6 weeks to see if it has had any impact.

I'm not really sure how to feel at this moment. Hopeful that we have some answers but also aware of the hard journey ahead. My husband also doesn't want to talk about this with anyone else which is understandable but i do feel quite isolated with it.

I'm not really sure what else to say at the moment other than I'm grateful to read your experiences and wishing everyone successes in your own journeys x

@sackofpotatoes123 Sorry to hear you're going through this.

FYI it takes 3 months for sperm to regenerate so don't expect anything after just 6 weeks when you see Ramsey again...although I imagine his T levels would have risen. What's his FSH level?

Do you have a cause for the NOA diagnosis? Did he have mumps or an illness in his late teens? Or born with it?

We are going down the sperm donor route as odds in finding sperm is highly unlikely (NOA due to mumps, FSH of 56)....not ideal but the best option and one we are both happy with.

Good luck!

@donnie12 thank you so much for taking the time to reply.

Dr Ramsey thinks the cause is that he had undescended testicles as a child which wasn't corrected until later in his childhood. He thinks that this probably left his sperm count very low and that weight gain etc has reduced it to zero. His FSH is 13.9. I don't really understand this though and can't find much online other than this thread.

Congratulations for making the decision to go down the donor route. Do you mind me asking if that was a decision you came to at the same time?

Sending you love and thank you for reaching out at a lonely time ❤️

Hi ladies! I hope everyone has had a good start to their 2024.

I was on here last year and had some great support through my cycles. @lemons44 gave me the great advice to have a break and that's what we decided to do. Would love to give an update on our recent cycle though in the hope that it helps someone!

Just as a recap, dh with noa:
First round - 5 frozen eggs (13 lost in thaw) + mtese sperm = X1 fertilised and 3 day embryo transferred - failed

Second round - 10 eggs + frozen mtese sperm = 0 fertilisation

Third round - 7 eggs + tesa = 3 fertilised and X1 early embryoblast transferred - biochemical

We said we'd do just one more cycle and we weren't that happy with our clinic, so decided to go for a change.

This cycle, I ended up with 21 eggs (20 mature) and 14 fertilised through open biopsy. We were in disbelief just at that news! And then we ended up with a 5AA hatching embryoblast that was transferred 2 days ago and 8 frozen embryos. Never in a million years would we have thought this would happen. Of course, no live baby or pregnancy yet but here's hoping.

Anyway, obviously it helped that I had more eggs this time (lots more meds and triple trigger) but the biggest difference seemed to be that the FS used calcium ionosphore when fertilising the eggs.

Sending love to everyone, this journey is a tough rollercoaster of emotions ❤️

And I should add an amazing and caring FS!

Wow @pomdownunder1 what great news! Fingers crossed for you.

On the topic of you not being happy with your clinic, we are with Oxford and I'm done with them for a number of what may seem like petty reasons but its the persistence of their disorganisation that has caused so much upset throughout our 3 cycles.

Things like, forgetting to book appointments confirmed verbally I turn up and everyone's rushing around to work out what needs to be done and who can fit me in. A junior nurse told me I had a hydrosalpinx, but not to worry they will just remove my tubes and everything will be ok, nobody would speak to me about this and I went home. No further updates until my transfer day when the consultant said she couldn't see anything. Them telling me I don't need notice to start a cycle and to let them know day 1 of my next cycle only for them to tell me they can't fit me in, the same thing happened with them telling me some of my tests were out of date so we would need to postpone. It feels like there's nobody there thinking about anything other than the current day/appointment and for the money I have spent its not good enough.

Anyone else?

Thank you @Bran90!

That's so disappointing. I just think when you're spending that much money, the bare minimum is to book your appointments properly. Would you consider going somewhere else for a second opinion?

Hi @everyone

@sackofpotatoes123 sorry that you find yourself here. I can really resonate with everything you've said. Since our last appointment with dr Ramsay a few weeks ago I've been really down and depressed. He didn't tell us anything we didn't already know but for some reason it really hit home that day, the fact that we may never have our own biological children.

I've been reading everyone's messages but just not had the courage to even reply. I wish you all the best in each of your journeys but will probably be taking a break from here x

@2022ttc so sorry to hear what you are going through. Sending you a big virtual hug from here...🤗

@2022ttc I completely understand how you're feeling. Take all the time you need, we'll be here if you need anything.

I'm about a month ahead of you with the same news, and although broken I feel the grief is lifting slightly now as we begin to look at our future. We're thinking of a nice holiday in summer, and celebrating the things we CAN do without children as we have navigate what family will mean for us. I hope you can find some peace in the coming weeks too (I'm not saying it's gone, I'm just not crying everyday which feels like a huge positive right now 😅)

Hi @2022ttc

Thank you for your message. I've read back and can see your journey so far and I can really empathise. It's such a hard place isn't it?

I can totally relate with the not telling us anything we didn't know. We had my husband's first results nearly a year ago now so we knew where it was heading although we only found out it was NOA last week. I hadn't really realised that the stats were different with non obstructive. Mr Ramsey was so kind that we came away feeling relatively hopeful from the appointment and actually slept that night and then it's like the enormity hit us both over the weekend with me leaning in emotionally and him leaning away to process it in his own head.

Sending you love, take all of the time you need and check in if you want to talk when you are ready xx

Hi, sorry I haven't posted on here in a while but my husband has just been told he has klinefelter's syndrome and that's the cause of his azoospermia. I don't suppose anyone has any experience of this as our doctor wasn't very helpful with information and told us to Google the condition!! They have referred us to Guys in London but they have said it could be another 8 months or more until we are seen and we don't know if we can both mentally wait that long again. Does anyone know of any private consultants in London we might be able to contact in the meantime that might be able to help us? Xx

Hi Sammy.
almost all men with Klinefelter’s are azoospermic. Success rate for mtese with KF is 30%.
Is your partner’s testosterone low? Success rates are higher if T levels are normal. Stimulation w HCG injections can be started by an endocrinologist.
Guys hospital has a clinic as does UCLH w Pippa Sangster KFXtra clinic. Maybe ask GP to refer to both and see which comes in quicker. Your husband needs to be seen by an endocrinologist too… that wait time might be quicker whilst waiting for sperm retrieval referral.

We have decided to take Dr Ramsay's advice and change to his clinic in London, it looks like it's more expensive but I feel more confident in his advice which conflicts with Oxfords. Oxford believe in round after round without further questioning or investigation which doesn't sit right with me either.

Hi all

I’m really sorry to all the new joiners that you find yourselves here and I’m so, so sorry to those who are struggling. I haven’t posted on here for months as I was also really struggling mentally. This road is so difficult and I think it’s important to take time away from phones, social media, mumsnet etc when you feel it’s needed 💗

@pomdownunder1 I have been thinking of you a lot and I can’t tell you how happy I am for you. You’ve been through so much in a short space of time and deserved some luck thrown your way! I’m keeping everything crossed for you.

I just wanted to share my most recent update incase this helps anybody or provides any hope. We are still a long way from a baby but by some miracle we have had slightly better luck lately.

Just a reminder of my back story. Husband has obstructive azoospermia due to a hydrocele operation when he was 16. He had a micro tese on one testicle in Dec 2022 where they successfully got 4 vials of sperm. We had two rounds of ICSI last year but were unable to get any day 5 blasts, with our embryos stalling at day 3. We suspected this was due to our sperm quality.

We switched clinics to CRGH for round 3 and did a synchronised Tese with egg collection to see if we had better luck with fresh sperm. In the lead up DH made a lot of lifestyle changes such as no baths at all, lycopene, Proxceed, no protein shakes/bars, no fizzy drinks, only one caffeine a day and lowering his weight/BMI.

Last Wednesday Dr Pippa did the tese on DH whilst I had my eggs collected and this time we had it on the other testicle. To our surprise they got 12 vials of sperm (1 used and 11 frozen). The embryologist said the quality was ‘excellent for tese sperm’ which shocked us to say the least. Me and DH think it’s because of his lifestyle changes and the fact they went into the other testicle which didn’t have the hydrocele surgery on.

In the end we got 9 eggs, 5 were mature, 4 fertilised and I can't believe I'm able to say this but 2 became blasts (one on day 5, one on day 6. One is good and one is average)🥹🥹 the other two stopped developing at the morula stage so they also got further than the day 3 stall we had before. I am so very grateful to have got to this point. Both blasts have been frozen for FETs.

It is worth noting that our clinic too, used calcium ionophore like @pomdownunder1 had.
It could be a coincidence but that’s now two of us who have had better luck whilst using it with tese sperm. I know not all clinics use it as I believe it’s still considered as experimental with not enough evidence.

If anybody is in or near London I really do recommend CRGH for sperm issues. I don’t think they quite got my protocol right as I had more immature eggs than expected however I have a lot of faith and trust in their embryology team and just get a good feeling about their embryologists and lab techniques.

I hope everyone is doing ok. @IslaO I hope it's all going well! @WhiskeyInTheJar33 not sure if you have started ICSI yet but if not I'm sending you lots of luck for a smooth round.

Xx

Sorry that message was so long x

@lemons44 that is such great news! I was thinking of you the other day. Massive fingers crossed for you lovely lady, I was so hopeful CRGH would do a better job🤞🤞🤞
@pomdownunder1 definitely good to change clinic when they aren't being helpful. Massive good luck to you!

@lemons44 I was thinking about you the other day and was wondering how you are doing! Soo pleased for you, that's fantastic results.

@Sammysquidge sorry to hear about the kleinfelters diagnosis. I don't know much about it but there is meant to be a great group on Facebook for support.

@2022ttc soo sorry to hear your news! Sending you lots of hugs. Take all the time you need, we're here when you are ready.

A little update from me. Back on the rollercoaster! Started stims end of last week with egg collection planned for next week! Feels like forever to get here! Worrying now about how many eggs I'll get, will DPs sperm thaw ok. Worried after all this we'll have nothing. The anxiety is never ending!!! Trying my best not to think too far ahead and just take one step at a time.