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.

@IslaO he just doesn't believe there was something in the sample as was less than 48 hours after the previous sample, so he wasn't holding out much hope, but I keep telling him they wouldn't freeze an empty sample, that's just not what happens 🤦🏻‍♀️

He's just been to do another sample, he's much happier with this one, said there was loads 😂 (sorry tmi) so hopefully more to go in the freezer.

@WhiskeyInTheJar33 oh bless him! Hopefully that’s put his mind at ease!

hope you’re all doing okay - Christmas can be a tricky time. Sending support to you all!

Hi,

Does anyone know if we have microtese done privately does that affect NHS funding for IVF treatment (will they reject if funded privately for the operation)??. I've read the criteria and says if any previous fertility treatment done privately then will be rejected but does that mean just previous IVF or include microtese as well???

@donnie12 I'm not 100% sure, but I was looking at combining private with NHS and read that you cannot combine as it goes "against nhs core values" or something along those lines. Have you had a look at your local CCG criteria?

@WhiskeyInTheJar33 Yeah I've looked and it mentions if you have private fertility treatment (IVF) then excluded from NHS but it doesn't make it clear if that includes having microtese privately. I can't get microtese done in my area anyway so having to go private.

Has anyone else who gone through this able to have the micro-tese done privately and IVF on the NHS.with no problems??

Hi @donnie12 we have paid for private micro tese. We were preparing to pay for private IVF too but had a surprise as our first NHS consultation has just come through for 4th Jan. So at that appointment I will be able to ask them and know for certain whether we are still eligible.

However what makes me think it would be fine is that our CCG allows you to fund one private round of IVF and still be eligible for 2 x NHS rounds. Obviously we would never be able to have private IVF without a private micro-tese... so I can't understand how it could be a problem.

Does your CCG say anything about being allowed to have a private IVF round before an NHS round?

I will let you know what they say to me on 4th Jan anyway.

I did contact our CCG directly (I don't think it's called CCG anymore I think this year they changed it to integrated care boards) and asked them for the relevant policy to read, so may be worth doing that too so you have all the up to date information.

Sorry @donnie12 ignore my message as I missed that your CCG says you are excluded for private IVF.

Hi @Carla2601 hope you are ok 💗 I hope you don't mind me tagging you but @IslaO recently found out her OH has no vas and I remembered that this was what your OH had too. Your OH's wasn't caused by genetics was it? @IslaO was a bit worried this means her OH may have the CF gene but if I remember correctly your OH didn't? xx

@lemons44 you are so good putting us in contact! Thank you so much! How are you doing? Head space ok over Christmas? Looking forward to taking next steps in the new year? We are still waiting for genetic tests to come back as well as an appointment for an MRI to confirm lack of vas deferens. In my head im
hoping for IVF in April ish but that’s all pending a successful sperm retrieval which I’m so nervous about and don’t like to think too much of!!

@carla2601 I will PM you in a bit to chat- hope you don’t mind! Sounds like our OHs are in a lovely little niche group of their own 😂

@Ljp2022 and @WhiskeyInTheJar33 have you guys been ok over Christmas?

@IslaO gosh those genetic tests are taking such a long time! Do you think they will be back in the new year?

I have had a really tough few weeks but the nurse reassured me that it’s just the meds. Started on estrogen last week and feel like a new person so fingers crossed it lasts!

Hope you’re all doing okay.

@lemons44

Thanks for the reply!. The CCG criteria for my area I can find is a little out of date but I've emailed them just like you recommend. It's says the below on mine, presuming as it has IVF/ICSI in brackets then that would suggest Microtese done privately would be fine unless I'm reading it wrong:

NHS infertility treatment will not be

offered for couples who have already

undertaken any previous fertility

treatment (IVF/ICSI) for fertility problems,

regardless of whether the treatment was

funded by the NHS or privately funded

@lemons44 of course not ☺️

@IslaO ill reply here in case it helps anyone else. Firstly really sorry you’re here I know how horrible it is getting to this point! Long story short (and ask any questions you want!):

• we saw dr Ramsey who diagnosed it instantly
• we got the blood tests and he doesn’t carry cf but if he did they’d test me and then if I did it too they’d screen (so try not to worry too much for now)
• he said he was pretty certain there was lots of good quality sperm (just from looking!)
• he was right so we had lots to freeze
• I went through the egg collection process then we had Icsi
• we ended up with 10 embryos….9 are in the freezer and one is the 10 day old baby I’m feeding whilst typing….

So my key takeaways would be try not to panic too much for now. It won’t go like this for everyone of course and everyone’s experience and case is different but hopefully we can be a bit of hope at a scary, confusing, horrible time.

happy to answer any questions and help if I can in anyway x

@Carla2601 thank you so much for getting back to me- all while looking after a new born! What a woman!!

this is all so encouraging to hear. We are definitely out of the darkest days (those in between the azoospermia diagnosis and having no real answers). Our consultant here in Ireland did one little feel and was like ‘oh there we go, there’s the problem’ so like Dr Ramsay with you, he was pretty sure from the look of everything else (physical and hormonal bloods) that there is sperm there. That’s keeping me going but I also randomly get hit by a bus load of negative thoughts.

we had an appointment with dr Ramsay this week scheduled but I’ve postponed it until we get our genetic bloods back and an MRI

@IslaO dr Ramsey is amazing - what I would say is whilst it’s horrible to always need ivf to conceive at least you know and actually there’s no reason to assume you’ll have anything other than great sperm and eggs because that problem is just insurmountable without intervention so it’s not like there needs to be another issue. And if that’s the case then honestly I can say the IVF really wasn’t bad. I was expecting a tonne of side effects and a stressful time and actually none of it was anywhere near as bad as I expected.

I did get OHSS because they still have to give you the hormones but of course if you’re fine your body produces it’s own too so that wasn’t nice but otherwise I was a-ok so hopefully you would be too.

we didn’t get the diagnosis until late Jan and our baby is 12 days old (we did go private for ivf) but it all moved so quickly. From those awful days of realising no sperm to having our baby with us was under 12 months. I know it won’t be like that for everyone but I hope it will be for you and more to just make the point you can turn the corner really quickly sometimes and things can and do get better. Good luck and shout with any questions and I’ll help if I can

@Carla2601 so good to hear IVF wasn’t so bad. Now, I’ll prob eat my words and descend into full drama queen mode but I’m actually dying to just get to that point and if we’re lucky enough to, I’m going to stab my self like a warrior and just enjoy feeling more in control. It’s funny how perspective changes isn’t it? If I thought a year ago that I’d be excited to start IVF, I never would have believed it. This year has been a journey and tested strength I didn’t know I had! Really hit home when I excitedly told friends and family after our urologist appointment ‘it’s fantastic news, he has no vas deferens’ some of them thought I was being sarcastic/joking. But for me it was actually really great to know it was likely that he was making sperm but it was just trapped. First three months of 2023 are going to be focused on healthy habits and preparing both of our bodies for what we hope will be an April SSR and IVF.

can I ask (and don’t feel like you need to reply quickly- you have more important things right now!)

• was it a regular Tese for your husband (urologist said we can get any bog standard one in an IVF clinic as we don’t need a micro Tese but I’m worried)
• did dr Ramsay mention what evidence made him certain that your husband was producing sperm?
• how long between his SSR and you starting IVF?

@lemons44 you must be getting excited/nervous now?! January is a big month for you after all your waiting and being messed around with appointments. How is OH feeling about it all too?

@Ljp2022 remind me of your hoped for timeline for 2023? I know you’re giving your body a break for now but have a feeling it will all be kicking off for you soon too?

Also @Carla2601 your timeline is amazing to read. You must have been so focused with appointments and getting organised to achieve all of that before the 12 month mark- absolutely amazing!

im sure the hardship has made those new born cuddles all the sweeter!!!

@IslaO i will be 100% with you on the preparing bodies front - we can do this!

im fully recovered from OHSS now and we are hoping for our first transfer mid Jan. Have a scan next week to check to see my lining is thickening as a result of meds which is the next step. Difficult not to get ahead of ourselves but praying 2023 is a better year for us all x

@IslaO sure thing - so it was just a regular one and they got loads - enough for about 10 cycles from memory so more than you’d ever need in reality. In terms of how he knew he seemed to just look (he must have touched them for all of 30 seconds!). In terms of my egg collection they actually wanted to start me before he’d had his but I opted to wait till the cycle after so as not to tempt fate but basically the next day we could post op.

we had mr Ramsey do the op and treatment at the lister which was expensive but obviously worked well so can’t complain really!

@Carla2601 thank you again! I can only hope beyond hope that our journey continues like yours has. Really, your messages have lifted me a lot so can’t thank you enough ❤️

@Carla2601 Congratulations!!

Can I ask did your partner have NOA and had a microtese or OA so had a PESA? Did Dr Ramsey do FNA mapping before hand since he was confident there was lots of sperm?

Hey @donnie12 , from what I understand from @Carla2601 her OH has the same condition as mine which is a missing duct so no chance for sperm to travel out of the testes but good chance it’s being made. This is classed as OA so I don’t think there is a need for FNA initially with this. Usually with this, FSH, LH and testosterone are within range so it doesn’t impact hormones.

how are you doing on your journey? Have you made any appointments/have a plan of action for this month? You’re in the midlands right? My OH is from there and we are planning on travelling down to Dr Ramsay in beaconsfield directly on train from Birmingham. Would you consider this?

@IslaO Thank you for the reply. Ah makes sense then how Jonathan Ramsey knew the sperm would be easy to find.

From when we first found out about having NOA in September things feel alot calmer now although the whole thing is annoying and sad at times it could be ALOT worse. Both come to terms with the fact if the micro-tese / hormonal treatment doesn't work then we would happily go the donor sperm route (from abroad only most likely Denmark however as doesn't feel as comfortable having donor sperm from the same country).

Saw Jonathan Ramsey in November who prescribed Anastrozole. Testosterone levels have trebled in a month since taking them. Have a SA in 1 week so hopefully sperm is found if not then microtese in February/March. Going forward however think we will go to Bourne Hall in Cambridge to get the microtese done by Oliver Wiseman. Reason being as good as Jonathan Ramsey is, the prices are very expensive for Microtese at nearly £7000 whilst Bourne Hall is less then £4000 (this all includes sperm sorting/freezing) who still have a very good reputation for Microtese results if you watch the YouTube videos Wiseman has done.

Sadly there is no microtese surgeons in the Midlands. There was one guy at the Priory, Birmingham but he is off long term sick. The London clinics charge super expensive hospital fees so the cheapest is Bourne Hall, 1 in Manchester, 1 in Liverpool and 1 in Wales (all have good knowledge of micro-tese).

From never hearing about Azoospermia 4 months ago to know I feel I know more then most of the NHS urologists now on it lol. Joined a group on Reddit that looks at Azoospermia and in regards to NOA what I have found is the below:

-95% of NHS doctor's and also clinics haven't got a clue about NOA. They really don't, and male fertility in general seems to be forgotten by the NHS. Really would get a second opinion privately once diagnosed.

• If private only see a uroligist who can perform Micro-tese. Shows they know about NOA, they can actually do the operation you need and can offer hormonal treatments. Otherwise you are wasting your time and money going to private urologist who don't offer this.
• The idea (created by the NHS as an excuse not to fund microtese) FSH has an inkling to the chances of finding sperm is not true. As confirmed to me by JR, by someone with NOA having much higher FSH then another does not affect the chances of finding sperm.
• If the male had sperm previously before losing sperm the chances of finding sperm is much much greater then that of males who have never had sperm because of a genetic.condition.
• On here and Reddit seems alot more people are successful with the microtese then not which is encouraging given the pesimistic 50/50 chances of success. Also reading quite a few people with NOA regaining sperm (enough to freeze without the op) after taking clomid, hcG, Anastrozole, etc. A few people I've read also with NOA have conceived naturally after taking hormonal treatment for 3 months.

Good luck everybody.

oh wow @donnie12 you are on it! Women are amazing when they are faced with adversity!! You have ticked off so much already- didn’t realise you’d seen Dr Ramsay. The testosterone levels sound super promising! I know the repeat SA will be an anxious time for you both but regardless, you have your back up plan for feb/March. So amazing you are both so open to donor sperm. It wouldn’t bother me at all- I’d even go for donor egg if it helped my OH feel better but he is so closed off to even the idea of donor sperm right now and it really upsets/worries me. However, we are not at that bridge yet and many never need to cross it so I need to stop worrying. The best bit of advice I got from a family member who struggled with infertility on the day we got our azoo diagnosis was to focus on the next step only and not the final destination as otherwise you get hung up on the ‘what ifs’. It’s helped me so far for sure.

completely agree with you about never hearing of azoospermia to knowing more now than you ever could have imagined a few months ago. I remember on our zoom call being told there was Zero sperm and saying to the doctor ‘are you sure? There was definitely something in the pot’. Oh the ignorance!!!

have you had the basic tests done for yourself? I’ve had basic bloods and amh and from those I’m assuming all is ok on my side although the ‘what if’ thoughts do creep up on me. I have a HyCoSy booked in for Jan as a box ticking step in my IVF clinic so I’m hoping that brings a bit more peace of mind too!

@donnie12 thats right sorry we were an ‘easy’ case (didn’t feel it to us of course) so we didn’t need the extras but sounds like you’re super well informed and prepared. good luck with it all!

@IslaO any time honestly. I remember vividly the panic of this stage and the uncertainty and it’s awful so if I can help always happy to