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.

Hi @Flumps75
Sorry that you find yourself in this thread too - it is such a tough journey.
I'm sorry I don't have any experience either, although I am doing some research on micro tese incase we need it.
Hope you're doing ok
x

@lemons44 We are November 2021 so now marks a year for TTC and it’s very emotionally hard as I have a real head for dates and remembering my naïvety this time last year is tough. I’m thinking back in particular to a meal with 3 friends when I told them I’d pass on the wine as we were in our first tww. Fast forward a year and all three of them are pregnant and I’m in the middle of a shit storm!

we are both 34- what about you guys?

also- when you went to Dr Ramsay, what information did you go with? We will just have blood tests and an old (2020) ultrasound that found the varicocele.

@IslaO I know what you mean. We started TTC and in that time one of my colleagues announced she was pregnant, had her baby, had her years maternity leave and is now back at work whilst we still have never had a BFP! it's so cruel how unfair it all is!

I'm 34 and DH is 38.

We had:

• DH's semen analysis results (both of them)
• his hormone blood results
• genetic blood results
• the letter from our previous clinic that stated our azoospermia diagnosis.

I also included my AMH result just for info, as I know this is an important factor for IVF.

Make sure you send any info to Mr Ramsay's PA Alison before the appointment as she passes it on to him and he will read it before he sees you.

I did also print everything and keep it in a folder too so I had that at the appointment incase he needed it (which he didn't as he had read the files we had sent to Alison). I have everything in this folder and it has grown! It now includes things like my cervical screening result, and I even made a contents page so it's easy for any Dr to find the right thing 😂😂 I just did it so I feel more in control I think!

When is it you have the appointment?

@lemons44 love your organisation! Someone on here recommended a folder early on in on diagnosis (maybe you!?) and I have taken this advice and it really helps me feel more in control.

OH’s bloods came back normal (LH, testosterone and FSH) so I’m hoping this is a good sign. The varicocele and epididymis cysts are my big question for Dr R. Have you seen this interview on Instagram with him? Interesting!

www.instagram.com/tv/CTSmOdrA8QB/?igshid=YmMyMTA2M2Y=

I have my Amh results (18- not sure if that’s good bad or what?! As I was blindsided in the meeting after hearing ‘zero sperm’ moments before 😭), getting a smear this week and have all my bloods too. Raging that genetic bloods in our local clinic take 6 weeks so I wouldn’t be guaranteed the results in time for our appt on 6th Jan so think I’ll just leave it to Dr R to do.

how is your OH coping?

Hi ladies,

Hope it's ok to join! Husband got the news of zero sperm last week, and we were obviously devastated. We've just booked in our first ivf appointment and feeling a bit better about things. The first gp just told him over the phone very insensitively, so he's going back to a new gp to have some questions answered etc. Is it worth getting blood tests now or do we wait for fertility specialist to organise? Trying to get the ball rolling on things. Thank you!

Hi @IslaO that interview is so interesting, thanks for sharing. I didn't know that about the blood flow.

so I was told the kareotype blood test takes 4 weeks in a lab because they basically look at a strand of DNA develop over time? How weird is that. So that's why that one takes time. I think our Y chromosome and cystic fibrosis only took 3 weeks.

I think that's a really good sign about your OHs bloods being normal.

I think that AMH is good too. Mine is 14 and I was told this was normal and not a concern. If the AMH is too high it can cause some issues in IVF as the ovaries can produce too many eggs and over stimulate

My DH is not coping well to be honest. He's just gone into anti anxiety medication from the GP as this is causing him so much stress ☹️ how about yours?

Hi @pomdownunder1 of course you can join although I'm sorry you find yourself in this situation too.

That's terrible that your GP was so insensitive! How horrible for your husband to find out like that.

I am guessing from your username you're not in the UK? I was going to suggest getting hormone blood tests through the GP as these are quick and a way to save costs.

Hi @lemons44, yes we're in Australia but the second gp had him to another SA, urine and blood test so just waiting on those results and at least we can take them to the ivf appointment.

Reading lots about Mr Ramsey haha wish we could go to him!

Hi @pomdownunder1 thats good that he has had some more tests done and this GP is being more proactive!

Were the urine and blood tests for STIs? My DH had to have these as I think sometimes an underlying infection can be a cause of azoospermia. They also won't do a surgical sperm extraction unless he has had HIV and Hep B and C tests (I know this as my husband is being made to do these for a second time before his surgical extraction next week!).

I think the main tests for azoospermia to narrow down the causes are: hormone blood tests, genetic blood tests, physical exam and ultrasound.
I would imagine your fertility clinic will do the physical exam and ultrasound? So might just be worth double checking your GP has done or will do the hormone blood test.

How are you feeling about it all? I had a bit of a tough day yesterday and went down a google rabbit hole looking things up again (for the billionth time!) x

@lemons44 Yes to the STIs and testosterone plus some other letters I didn't understand haha. Is that the hormone one or is that something different?

I'm feeling a little bit better about things knowing we've got the ball rolling but I'm sure I'll be stressing again after the initial consultation.

Do you have a date for sperm retrieval yet? How is your husband feeling about it?

@lemons44 sorry just reread it's next week! Fingers crossed for you it goes well 🤞🏻

@pomdownunder1 the other letters were probably LH and FSH which are other hormones.

Yep our surgical sperm retrieval is next Thursday and I'm extremely nervous! My DH is also very nervous and stressed about it. Just want it to hurry up and I'm keeping everything crossed they do find sperm.

When is your consultation with the fertility clinic?

@lemons44 oh gosh, it's like torture isn't it. I read Dr Ramsey gave you an 80% chance of sperm which sounds like good odds to me but still so stressful for you both.
So glad to have found others going through this.

Hey all,
Been keeping up with this thread but no post from me for a while as been waiting for an apt,
So my hubby had hormone tests and we got the results back yesterday that they are all normal which we are really pleased about, its now going for the genetic testing which they said will take about 6 weeks and then see where we go from there, everything just feels so long doesnt it?

@HR01 that's good news all the hormone tests are normal. Hopefully all the other tests come back ok too. It's such a long waiting game! DP has been undergoing tests for the last 15 months!!! Feels like forever!

@lemons44 hope the sperm retrieval goes ok this week. Where is he having it done if you don't mind me asking?

DP has his repeat SA tomorrow, 3 months post varicocele embolisation to see if anything has returned. Feeling a little nervous about the results. If still azoospermia then will look at clinics to have micro TESE and then ICSI.

@HR01 thats really positive! Waiting for results of genetic testing feels like an age but once that is back, I felt like things moved quicker.
good luck this week @lemons44
hope you’re feeling okay @WhiskeyInTheJar33 x

@WhiskeyInTheJar33 bahhhh it’s tomorrow!!! How are you feeling? A bag of nerves or hardened to all of this madness by now? if he has sperm there but very very little- what will your course of action be?

@lemons44 hope you’re ok and your OH is alright too. This time next week it will be all over and hopefully you will have had some great news.

@HR01 im at the same point in the journey as you are! Bloods done, next genetic but not until early December and then more waiting!

@IslaO feeling anxious about it but in a way if it still shows nothing then it's no different to the news we've had before, so don't think we'll be upset by it. If this is the case then will start looking for a private clinic and DP will have micro-TESE. If there are small numbers of sperm then will hopefully qualify for NHS funded treatment (once we've lowered our bmi slightly). Although in a way I think I'm more inclined to go private now as I'm fed up of waiting, Will be 35 next year and don't want to wait much longer! If we have 1 private cycle, the nhs will fund 1 additional cycle rather than the original 2 cycles So may just try privately if there is of course some sperm tomorrow 🤞🏻

Big week for both of us @WhiskeyInTheJar33
I will be keeping everything crossed for you. Will you get the SA results quickly?

He is having the retrieval done at the Lister hospital in London. We have to have it done in a hospital setting as my DH is higher risk under anaesthetic.

Just feel sick with nerves to be honest and it's not until the end of the week so I still have a few days yet. If it fails for us we will also be looking at a micro-tese although I would imagine DH would need time to recover physically before they do another Op.

Thank you @Ljp2022

@HR01 that's great news about the blood results

@lemons44 good luck, hope all goes well.
We have an appointment with the consultant 30 mins after his sample to get the results straight away and to discuss onward plan. Thought we'd have to wait for results but glad we won't have to.

Hi,

Does anybody know if the micro-tese is done privately and it's successful, are we then entitled to IVF on the NHS who will use that frozen sperm from the successful private microtese if we pay for it to be transported to the hospital where the NHS IVF treatment would be done?

If it's not successful, are we entitled to IVF on the NHS using donor sperm we have imported ourselves from the European sperm bank rather then using donor sperm they provide??

Not sure what the rules are as think I read somewhere if there is no sperm then the NHS won't provide the IVF. Not sure if that's true or not. I hope it's not true.

Also any recommendations of private surgeons who do micro-tese for Azoospermia?? There is surpringly non in the West Midlands... obviously you have Mr Ramsey, Suki Minhas, Tet Yap, etc in London but the problem with going to London is the hospital fees are really expensive....are there any surgeons in Manchester, Bristol, etc who do micro-tese as struggling to find any.

@donnie12 We went to Mr. Steven Bromage who was recommended via Manchester fertility. Really liked him and my partner's TESE was successful. Can't remember exactly what we paid but I think it was around £2500. We had visited Mr Ramsay as well but it was such a long way to travel and extremely expensive. Best of luck with it, it's such a hard time.

Thank you @WhiskeyInTheJar33 good luck for you and your OH today 🍀

Hi @donnie12 not sure if this comment from further in the thread helps