Page 9 | Azoospermia support, stories and timelines

Ljp2022 · 2022-05-29T18:40:23+00:00

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.

donnie12 · 02/01/2023 10:12

@IslaO Just had bloods done so far. Been referred by the GP last month for IVF. Because it's due to Azoospermia you should get referred straight away without further tests. Have you been referred and do you know long the wait is at the minute from referral to IVF?

What type of Azoospermia does your partner have is it OA or NOA?

IslaO · 02/01/2023 11:36

@donnie12 unfortunately here in Ireland IVF is entirely private- our health system is one of only a few in Europe that doesn’t cover it. I think it’s due to come in in 2023/24 but I don’t want to wait! We are lucky that we have some savings that we can use for it. However, I would rather get a baby for free like other people do but with zero sperm that isn’t likely to happen 😂

we think it’s OA at this point. Waiting 3 months for an appt with irelands equivalent of Dr Ramsay and I went in with a list of questions targetted around my partners varicocele (small one in one testicle). Doctor told me to hold fire with the questions, did a quick physical examination and told us he couldn’t find any vas deferens which is the road the sperm take out of the testicles. Sounds mad but I was so happy to finally have an answer after three months of googling, waiting, catastrophising etc.

sounds like me and you are pretty similar in terms of timeline! Shitty journey to be on and bitter sweet to know there are others on the same one!

lemons44 · 04/01/2023 20:16

Hi all, have just caught up!

Sorry I've been quiet I've been manic and also had the dreaded cold everyone has 🫠

@donnie12 that's bloody amazing to hear about the testosterone trebling! I am keeping everything crossed for the next SA for you.
Interesting what you said about the FSH levels as I was also very confused about FSH levels when I looked it up because there are a lot of conflicting studies. It's so good you have a plan in place, you sound like you are really on top of it all.

@IslaO how are you feeling? I saw you are hoping to get the SSR done in April, do you know when your MRI will be? We saw a consultant today and he mentioned a hycosy and I was like... surely i don't need that being as my husbands sperm will never travel up my tubes? 🧐 it's confusing! I hope you're feeling a bit less stress now you know the cause. I know that stress won't totally go away but you're in a good position. This might make you laugh but for ages I was pronouncing vas deferens in a way that rhymes with 'Rastafarians' 🇯🇲 .. it was ages before my husband pointed that out to me.

I can't remember the last update I gave so sorry if I'm repeating myself!

We had a private consultation for IVF and then applied for the Access Fertility funding package for 2 cycles 50% refund. As we were waiting for Access Fertility to do the medical review, we got a call from the GP to say our NHS referral was finally ready to be made.

She made the referral and the next day the fertility team at the hospital rang and offered me an appointment for 5 working days time! (With Xmas in the middle). I was so shocked so we paused on the private funding until we knew about NHS funding.

We then had the NHS consultation today and the doctor couldn't say or do much to be honest because we've already had all the tests. He said the only thing they have not done is investigate my tubes (hycosy) but he didn't book me in on anything. He just booked us in with the nurse team for 20th Jan to do our funding application for NHS ICSI. They said this application takes up to 3 weeks then we can still have IVF in our original clinic (the one we paid for the private consultation) but use our NHS funding. He said he thinks we can start treatment in about three months so about March/April time.

I think we are both in a bit of shock. We had such bad luck with our private treatment and it took so long and now we are finally in the NHS system it seems to be moving quickly!

In the meantime we are paying to have our sperm transported from London to the clinic closer to us.

@Ljp2022 sorry to hear you had some tough weeks. The hormonal/mood aspect is what I am most worried about IVF as I've experienced some low mood and depression in the past and I'm scared it will creep back in because it's not nice. Sorry if you've said this but have you told your work you are having IVF?

lemons44 · 04/01/2023 20:16

Argh sorry that was such an essay! 😨

lemons44 · 04/01/2023 20:17

P.s I hope you all had a good Xmas and new year x

Original poster

Ljp2022 · 04/01/2023 20:24

@lemons44 wow that is amazing!! I am so impressed at the speed of nhs!! It took us 6 months from referral to a telephone triage which is why we went private in the end but fantastic news for you! Fingers crossed this will save you some money!! What will the next steps for treatment be in the spring for you both?

For the egg retrieval, the meds did make a little more tearful but in general, I was functioning pretty well. I won’t lie to you, this round has been much tougher and I couldn’t work out what was medication and what was appropriate feelings if that makes sense? But as soon as I started the oestrogen my emotions really balanced out and I’m feeling much better now. I think it’s normal to have concerns that old depression my creep back in but please be reassured that you are not alone and whilst the hormones do mess with your emotions, it will pass when you start on the next load of meds. I’ve also found some really good podcasts which I found have helped - Big Fat Negative (uses a good amount of humour) and the books - His and Hers Survival Guide to IVF (Get a Life) and the Trying Game. It’s been so good to hear other views and people talking through their emotions and experiences. Really helps to know you’re not alone 💕

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lemons44 · 05/01/2023 08:54

@Ljp2022 I know I am really surprised with NHS! We did originally go to our GP for the referral about July time so it did take our GP about 6 months to actually process our referral and do the required tests on me (day 3 and 21 bloods, chlamydia test). So the GP side was crazy slow and in hindsight I should have chased them but I didn't realise they were sitting on our referral for so long, I just assumed it had been made. This also happened to somebody else in one of the other threads I'm on so my advice for any new people reading this thread in the future is to CHASE YOUR GP 😅

Thanks for the podcast recommendations. I am going to start one of them! I've been trying to do more walking to help with blood flow in preparation for IVF and I was thinking I need a good podcast to listen to and these sound perfect.

Thanks for the honest account of your journey too. It seems like a bit of lottery as to how the drugs and stages affect different people. Because I'm mindful that I may struggle with the hormonal/emotional side I have decided to take up a hobby that will hopefully keep my mind distracted so I've bought a knitting for beginners kit 🤣🤣 out of all the things we do for this TTC journey, the tests, countless vitamins, googling everything... buying a knitting kit is by far the weirdest I've done so far. Oh to be able to just have sex and have a baby the normal way! 🙄

Original poster

Ljp2022 · 05/01/2023 12:47

@lemons44 yes I think that is by far the best advice about chasing GP!!

I think you’re right, it’s about finding something to keep you occupied so you have protected time for you and (try) not to let your world become all about IVF. Hahaha yes if only!!

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pomdownunder1 · 08/01/2023 10:52

Hi ladies, how is everyone? Just wanted to talk to others going through the same thing. How do you all deal with pregnancy announcements from loved ones around you? Finding it difficult at the moment and can't help but feel like we're being left behind.
We have our next appointment with ivf clinic tomorrow to hopefully find out next steps and whether we can do tesa or microtese. Hope everyone is well!

lemons44 · 08/01/2023 11:58

Hi @pomdownunder1
I think for me what really helped was knowing that actually it's a lot more common than you think for people to for example skip baby showers, avoid conversations or family meet ups etc to cope with their fertility struggles.

I've been in the situation where I've felt real envy, anger and resentment and at first I felt ashamed for these feelings and like I was an awful person. Then after talking to others on mumsnet, reading about 'pregnancy envy' and seeing posts about infertility on Instagram, I realised two things:

That I'm not alone and so many other ladies and men are feeling the same as me.
That it's ok. I'm not a bad person, I'm going through a difficult time and it's ok to put myself first.

My best friend had a baby a week before we got our azoospermia diagnosis. I'm really lucky that she understood how seeing her baby was hard for me and never put pressure on me to do it. I actually didn't see her baby for about 7 months. It took a long time for me to even ask much about her baby but I'm very lucky as she was so lovely about it. She even suggested meetings in public places rather than her house so I wasn't surrounded by baby toys etc. But she has also experienced a miscarriage previously and I know after that she had to see other pregnant ladies so I think she gets it.

I also know what you mean about feeling like we're 'falling behind'. Can you try and see it like you just have a bit of a longer wait and try and turn it into a positive like if there's any hobbies you want to take up before having a baby or that would be hard to do with a baby, you can do them now. Or take on an extra work project that you wouldn't want to do once being a mum because it would be too much to juggle. Me and DH even looked at an adult only cruise and a trip to vegas 🤣

I know it's hard, so hard ☹️ keep talking to us ❤️

Original poster

Ljp2022 · 08/01/2023 14:24

@pomdownunder1 welcome to the ivf crowd 💕 I totally agree with the previous post, I think it’s much more understood now that it’s okay to not go to every baby shower etc. My best friend recently told me she was pregnant and I was just honest with her - I’m really happy for you but I’m just very sad for me at the moment but that doesn’t mean our friendship will change.

Remember you’re not alone, we all feel the same and are with you. It’s also okay to not be okay and it’s also okay to tell people that.

You can get through this but it’s going to be an emotional rollercoaster. Good luck with your first appointment, here if you need a chat and just keep talking 💕

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pomdownunder1 · 09/01/2023 01:44

Thank you for your replies @lemons44 @Ljp2022 💕 really appreciate your time and definitely going to put those tips into practise. I'll update you with our news because no doubt I'll need your advice 😂

lemons44 · 09/01/2023 07:58

Let us know how the appointment goes @pomdownunder1 x

lemons44 · 09/01/2023 09:27

@Ljp2022 just want to pick your brains this morning as I'm having a bit of anxiety.
We got our sperm report from the lab as I requested it to help with our NHS referral.

It says '1 twitching sperm in 5ul + immotile sperm'.

I remembered you saying something about only some sperm having a wiggly tail because they are undeveloped when extracted surgically? I am assuming it's therefore normal for the majority of it to be immotile? I know 5ul is a really small measurement (0.001 of a ml) so there's hopefully more twitchy ones but I think it's just made me panic.

Did your clinic tell you they can also inject the immotile ones during ICSI?

I'm just feeling so stressed about it as our clinic also didn't do a test thaw and I'm so scared it's all going to die when defrosted.

Original poster

Ljp2022 · 09/01/2023 12:42

@lemons44 its hard isn’t it because you don’t think to ask questions like that until the letter comes through and you have time to process!

Dont worry about twitching and imotile - my husband had exactly the same!

Twitching means their tails have a slight twitch but not strong enough for them to swim. This is completely common with azoospermia which is why they do icsi instead of regular ivf because the sperm can’t swim to the egg. Immobile is really common too. Essentially, when sperm are taken directly from the testes, they are immature and don’t fully develop and this is completely normal in azoospermia, so you don’t get fully developed sperm, you get immobile or twitching. From what I understand, they can inject any type of sperm into an egg but they will chose the best ones, aka the twitchers! Remember, they only need a certain number of sperm based on how many eggs you produce. If the average woman produces 12 eggs, they only need to select 12 twitching sperm. We had 18 eggs all of which had a twitching sperm, 14 got fertilised and 7 made to blastocysts.

you have nothing to worry about as you are having icsi so they don’t need to swim to sperm. Hope this helps? 😁

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pomdownunder1 · 09/01/2023 20:38

Hi ladies,