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

Hi @sackofpotatoes123 hope you're ok. I know exactly how you feel. Usually my husband is very patient and comforting when I'm upset but at times he also gets a bit cross / fed up, as he says it changes my whole demeanour? I always tell him I can't help how I feel and realistically, who else can I talk to about this that will understand what I am going through apart from him?!

Dr Ramsay last time advised us against egg retrieval / fresh transfer same day as I think he didn't think it would be worth it for us given the low chance of sperm retrieval success?

@2022ttc I'm so sorry to hear this ☹️ my heart broke for you when I read your message this morning. I'm sorry if you've already said this but is your husband on the knackered knackers WhatsApp group? If he's feeling nervous about the procedure it might be useful for him to join and he can ask the other men what to expect and it may alleviate some of his worries. There's also the podcast which he may find helpful. Maybe his nerves are coming not from the procedure itself but fear around if it is unsuccessful?

Just remember that your feelings are so valid. I found during the waiting for mtese stage theres a focus on how the man is feeling but less so on the women. Whilst it's not your body, it's still your future that the outcome will be shaping and it's very scary and stressful. I also struggled with the feeling of resentment, a feeling I don't think is spoken about enough. Even when we found sperm and are having IVF this feeling occasionally rears it's ugly head. Obviously we know it isn't their fault but we are at the mercy of the outcome and I think the women's emotions can come second place in this journey and that's hard.
I do think this journey whilst it is hard all the time there's some times where it's almost unbearable and it can feel like your drowning. It sounds like you're having one of those especially hard times. Everyone copes with these differently. For me it was to invest time thinking about plan B, which for us was adoption (although we then changed our mind and felt our plan B would be donor). This made me feel hope and by researching and googling I felt less like I was drowning. However my DH was the opposite and rather than planning ahead he could only think in baby steps, so a coping mechanism for him would have been to focus on what made him feel better at that moment like going to the gym for example and just taking one day at a time. Just do what helps you to feel sane.. even if it's having a day of sad movies and crying your heart out, or screaming into a pillow. What you're going through is one of the hardest things anyone can go through and with your SILs news that's like someone punching you in the gut. so be kind to yourself and cut yourself slack, if you feel like eating an entire cake, just do it. If you feel like deleting social media and mentally telling everyone to go F themselves or ignoring your SILs updates, do that too. It doesn't mean your a bad person its just survival and coping as best you can.
Xxxx

@2022ttc sorry, just seeing your messages now. Hope you are feeling a bit brighter this morning. How you've been feeling and also how you describe your feelings following any appointments is exactly the same as me. I think it's totally normal. I wish I could give you advice on how to reframe your mind but I struggle with it too. You are a little ahead of us so not sure on % of likelihood but I think 30%-40% sounds quite promising. Is it Dr R doing the mtese if your husband agrees to it? If so, I think the mapping would be a waste as it's meant to show the most likely places to find sperm but from what I know, Dr R is the ultimate "sperm hunter" haha so if there is sperm to find, he will find it.

Keep us posted on your journey and sending you love.

@sackofpotatoes123 sorry to read your message too. It's so tough isn't it? I feel really sad and emotional about the situation too but I feel guilty about showing my emotions in front of my husband because I don't want him to feel any more pressure or sadness than he already does. However, we are a partnership and not being able to talk openly with eachother I think makes the situation even more tense. Everyone is different though. It's so so tough. Do you have a friend or close family member you can talk to as well? I have a couple of friends and my sister in law that have been rocks throughout this process too. And of course you have us, your Mumsnet family ❤️... Always here to listen. Sending you love.

Hi all

I have followed this tread for a little while. Its so lovely to know that for some, there is a happy ending.

We found out last week after 18 months of tests and waiting that my partner has Klinefelters and therefore a micro Tese has not been advised as the chance of success is so small.

The grief I currently feel is like nothing else. I hope I am not alone in this thinking but I don't know if the relationship can survive this blow. Not because we don't love each or arent generally strong as a couple. Its hard to navigate and come to terms with next steps and options. Can anyone be 100% certain when choosing donor or adoption? How do you know you won't feel resentment further down the line? What if it doesn't all work out.

I suffer with anxiety and so can only focus on the negatives.

Hoping I'm not alone in this feeling?

Hey @Infertilityshokck its so very hard, and I’m sorry you’re going through it.

We had a different diagnosis but the same news in January, and that month was horrendous. I don’t know how each person knows their sure, but we had many a walk discussing the options and our ultimate goals and needs to come to the conclusion we would pursue donor. It’s such a personal thing.

We attended a talk from Paths to Parenthood in late January with someone who was a donor child and another person who’d used donor sperm who discussed their feelings and reasoning which really helped. They’re on Instagram too sharing insights often. They discussed a book called ‘Three makes a baby’ and also how to communicate with a donor child and the path that entails.

We decided after that to pursue donor as their insights were invaluable, and that my partner would rather we go through pregnancy together if that’s possible. I don’t know my circumstances yet as I’m yet to have AMH tests etc, but it’s been a long conversation to get here.

It’s really hard to navigate, and a lot of us in this chat have had very hard conversations with our partners. But for me discussing those thoughts together have been much better than me keeping them in.

Here for any discussions etc x

Hi All,

It's been a while since my last message but was waiting to have our first NHS appointment to give an update.

In the meantime, I've been following all your messages and just to add to the previous messages, most messages I am reading resonate with me and my partner. We have our days too, this process is just so hard and frustrating but personally I am trying my best to not let our issue disrupt our lives (this is very often easier said than done..., but I am really trying!). Just can say that it really helps me reading your comments and feeling with are all on similar boats...so at least we are not alone :)

Just to recap, my husband has non obstructive azoospermia. We did all checks privately and we were referred to Royal Berkshire Hospital by our GP back in March.

We had our first appointment this morning with the fertility clinic. As expected (as some of you already explained to me how it worked for you :) ), there was an urologist and a gynecologist present in our appointment. They were very helpful and actually they told us as we have done all the prework (we did all checks privately and they agree with the diagnosis), they are now able to put us in the waiting queue for MTESE.

They have told us that the currently waiting time for MTESE in Royal Berkshire Hospital is around 6 months. While initially we were thinking of going private for MTESE and then using our NHS IVF cycle, we believe we could wait 6 months for MTESE.

They told us than once we have done the MTESE done, they would refer us for IVF and it should be quick (they said maybe 1 or 2 months). All sounds good for us but I don't want to be very hopeful given the comments I have seen from some of you about NHS messing up your initial timelines so let's see...

I just wanted to ask if anyone by any chance have done MTESE in Royal Berkshire Hospital in Reading and wouldnt mind sharing their experiences. The urologist doing MTESE is called Shafi Wardak. If you have any references about him it would really help us :)

Many thanks all in advance!

Hi @Infertilityshokck you are definately not alone in having all those thoughts. My husband has also just been diagnosed as having klinefelter's so I can totally relate. I have had similar thoughts about if and how our relationship will survive the process.

We have decided to go ahead with MTESE whether this be private or nhs as although chances are low we feel we would regret not trying everything first before deciding on another route. We have had brief discussions between us about adoption or sperm donor but neither of us are still 100% about what we would do if the MTESE doesn't work. For now to help my mental state I've decided to try and just take it one step at a time and just revisit our options if we need to and I've tried not to predict what my husbands thinking or the future and encouraged him to be honest and for me to be honest with him about how we are feeling.

The whole thing really is so difficult though. Always here if you want to chat about things xx

Hello, just wanted to put this in the group in case it reassures anyone regarding testosterone levels after micro tese.

• My husbands testosterone was 24.12 at the start of our journey.
• After his first micro tese in December 2022 it dropped to 18.59.
• He had his second micro tese in February 2024 and we just received the testosterone result and it has increased to 21.8.

All tests were done in the morning.

We are in shock as we expected it to dip by another 6 points or so and we didn't know it was possible for it to actually increase. The only thing we can think of that explains it is because he has been on a health journey with his azoo diagnosis for the past 1.5 years and has lost weight, gained muscle and been going to the gym 3 times a week, as well as eating a very healthy diet.

Just wanted to share incase it helps anybody.

Hope everyone is ok, sending love to those who are struggling. xxxx

@lemons44 , thanks for your message. I have tried numerous times to get my husband to join these groups or talk to friends / family but he says he doesn't need to and can cope with it himself. I don't agree personally, but he is different in that respect. I think he is quite worried about the procedure itself and the potential long term impact it can have esp on testosterone (thanks for your message today, I was so happy to read that and rushed to tell him all about it!). I hope he comes around.. I have been trying to nudge him daily on what he is thinking but I can tell he is struggling as he is usually such a good sleeper but since our last appt he has been feeling really anxious and having broken sleep etc.

@StarJasmine93 thank you for your message, yes it would be Dr Ramsay for either / both procedures. I completely agree with you and don't think mapping is worth it both in terms of ££ or time or energy. The MicroTESE would give a more definitive answer.

@Infertilityshokck I hope you are ok.. when I read your message, my heart broke for you and although I was thinking of you lots, I didn't know what to say that might help make you feel better. This really is such a tough journey, but I just want you to know you are not alone, and if ever you want to speak we are all here for you. I also have suffered from anxiety in the past so can really empathise with how much worse that can make an already bad situation feel worse. Sending you lots of love and prayers.

@Disco24 really pleased that you were able to find comfort in making the next decision for you, and I wish you all the best x

@Blue234 sounds like a really positive appt / update - hope it all goes to plan and schedule, 6 months wait for a Mtese is really not bad! I am afraid I don't know much about that hospital or Dr, but based on what you have said they all seem nice and helpful, hope it all goes well for you!

@Sammysquidge completely agree with you on taking one step at a time, otherwise it all feels so overwhelming. My husband and I would probably consider adoption as a plan B but it all seems so alien to us both as we have no idea where to even begin. But we both agreed that we would deal with that step if and when necessary.

Hi everyone!

Little update from me...

We had our NHS andrology appointment at Kings yesterday. A bit of a whirlwind appointment... I felt like the Dr started reeling off my OH's medical records before we even got in the door. It all felt very rushed. Anyway... As the two samples my OH did were different (1st one had no sperm and 2nd had 500K immotile sperm), they want us to do another sample now as it's been 7 months since the last one. My OH has made some lifestyle changes so perhaps it might have helped. Of course the best outcome is that he manages to produce a sample with even a few viable sperm to save him the surgery!!

Anyway, that is what is next for us. In the meantime, we have an initial appointment with Dr Ramsay next Thursday so will be good to get his opinion.

At Kings, she examined my husband and said he had a "grade 2 variococle" and so she has said an option might be to get that operated on as it may improve sperm count. The only thing is, it's about 3 months waiting list and then she said we would need about 6 months to see if it's had an impact. If it hasn't, we go to MTese.

The other option is that we go straight for MTese. However, if we had variococle operated on, this could give a better outcome for MTese. The variococle operation and MTese are only options if the sample comes back with nothing viable in it of course.

Has anyone got any experience with NOA where a variococle has been removed and then sperm has been found afterwards? My husband's FSH is super high so I have my doubts that it would have any impact but wanted to see what you all thought?!

@StarJasmine93 fingers crossed the next SA shows some sperm.

My DP had his varicocele embolised and sperm returned 3 months after. Only very small number but then our clinic stopped his anastrozole and his count returned to zero so we proceeded with micro-tese. We had 3 vials frozen from this. Not sure if the embolisation made the micro-tese any more successful but DP wanted to do everything we could to increase our chances.

Hi everyone, hope you're all keeping well. Just a little update since my last message.

Since we had our appt my husband has been really struggling mentally, he's not been sleeping and been really anxious. This morning he broke down. It was really difficult to see him so vulnerable. It basically brought up memories of all the past operations and procedures he's had from childhood and has given him anxiety.

We both agreed to cancel our Mtese scheduled next month, and put this process on pause until he feels more comfortable and onboard with it.

Not the outcome I had hoped for but his well-being means everything to me and I just want him to be happy and healthy before we decide what to do next. X

@2022ttc I am so sorry to hear things have been so tough. It sounds like it has been so hard for you both and some breathing space from the situation may be a good thing. It's good that he opened up to you and like you say, being able to recognise that his health and happiness is your priority is a step in itself in moving forward in your next steps.
I can only go with my experience when I say I do believe that the medication has really increased my husband's low mood and anxiety about it all. I've noticed a marked difference since his dose got doubled a couple of weeks back. Hopefully taking away the time constraints will really help you to come to a decision together.

Sending you love and I hope you both get the chance to focus on self care for a while xx

@2022ttc sorry things have been difficult for you both. It's great that you have been so supportive with your husband and he has felt able to open up to you. It's so tough to see them like that though. I find that such a battle sometimes, trying to be there to support my husband but also being mindful of how things are affecting my own mental health as well. Take care and maybe do something nice together if you can whilst you have some breathing space as this journey can be all too consuming sometimes.

Our update is that we saw the NHS consultant yesterday and they are applying for IVF funding for us. They want to do an ultrasound on my husband and more bloods and then if this is all ok we can go ahead with MTESE with a 30% chance of finding anything. Even though it may be another few months wait I think we are going to go down this route as privately it's going to cost us at least £6000 just for the MTESE and I feel like it's going to confuse things now the ball is rolling with the NHS. I just find the waiting game so hard to deal with more than anything

Hi all,

I hope you don't mind me joining this thread. I've followed along for a long time and have found this thread very helpful so would like to share our story. It seems like quite a few of us are at a similar stage at the moment.

After the standard 1 year or TTC, we went for investigations and found out my DH had azoospermia with 2 sperm in the first sample and none in the second. He then had the follow up tests done and we had to wait about 4 months to get all of the results back which was an agonising wait to say the least. We finally found out his hormones were fine, no chromosome issues but he is a carrier of a cystic fibrosis mutation. I then had to be tested too which was stressful but thankfully I am not a carrier (which feels like the only time we have received any good news in this process). Then a couple of months after that we finally got to see the consultant urologist in person, fully expecting my DH to be told he has missing vas. Plot twist: both vas are present and he has no visible anatomical issues. We were then told there must be an unknown obstruction somewhere as hormones are ok and some sperm have previously been found so the CF status is just a coincidence and unrelated to the infertility.

My DH had a PESA/TESA procedure done at our clinic in November. Everyone seemed cautiously optimistic about the PESA. But unfortunately neither the PESA or TESA worked. We were told this was unusual given his test results. It was even more devastating than the initial azoo diagnosis to be honest. We were then told that it must be unobstructive azoo as a result of the CF mutation causing low production issues. We hadn't realised this was a possibility and were quite blindsided to have gone from being in a position that seemed relatively simple to circumnavigate to being in a position that seems much worse.

The next plan of action is microTESE which thanks to this thread I was already aware of. The clinic hoped that the NHS wait might not be too bad as we were already a patient of the Dr who would do it. However we have waited 5 months so far and have just found out we probably won't get an appointment until the end of the year. So this is basically the same 1 year wait that others have mentioned. This week we have decided to bite the bullet and explore private as I had a low AMH when tested a year ago (and dread to think what it is by now). I will also be turning 37 this year so it feels like a now or never kind of situation. We have just booked an initial appointment for next week and I am very thankful to those of you who have mentioned different Drs names here otherwise I would have had no idea who to contact.

I hope everyone is doing as well as can be during this horrible time that I call The Endless Wait. Sending positive thoughts and vibes to all.

Hi @BlueberryStar, so sorry to hear your experience and journey so far, can resonate with how you're feeling. Sounds like a rollercoaster of emotions. The fact there were some sperm in the initial sample gives a lot of hope that the microtese could be successful and I really hope that it is.

I too turn 37 this year and feel that pressure too. We are in a state of limbo as we have cancelled our microtese which was scheduled for next month as my husband is not feeling too good about it mentally. I really hope he starts to feel better and we can reschedule as this unknown waiting part is the worst

I'm so sorry to hear your story @BlueberryStar that must have been a huge shock. Really hope your appointment worth the Dr goes well next week.

@2022ttc sending a big hug. Could it be worth your OH talking to the GP about medication to help at this difficult time? My husband went onto anti depressants and they sort of ended up being a bit of a life jacket when he felt like he was drowning. Sorry it's so difficult at the minute xx

Thank you @lemons44, the problem is that he won't look for that help. He says talking to me about it is enough and that no one else understands. I've tried explaining how much support there is out there but he just doesn't seem receptive towards it. We did speak last night and he said it's not a no/never to the Mtese and he knows we need to start planning for it again soon (mainly due to my age) he said it all just felt really rushed from Feb until now, which I understand. Am hoping talking to him about his fears and feelings will help make things easier with time.

@2022ttc I think what you are doing by talking and listening will hopefully help him to get his head around this awful situation you are both in and come to terms with next steps. Just remember that saying though 'you can't pour from an empty cup' and make sure you are being supported too, like through this group if you're having a bad day we can listen xx

Thank you @lemons44 ♥️
I'm not going to lie, I've been struggling a fair bit recently, and feel like I'm slipping into either depression or anxiety. I don't like leaving the house anymore and if I do I just want to rush back because I just want to avoid talking to anyone (not that anyone would ask about ttc anyway) it's just the feeling of sadness and not knowing when you might start crying randomly. My husband dragged me out of bed this evening told me to get dressed and said he's taking me out for dinner and a drive so we are off out now, hope you all have a lovely weekend x

Hello everyone! Hope you’re doing ok as can be! so sorry I haven’t been on for a while! It’s been an emotional rollercoaster! unfortunately the first Mtese got cancelled and had to wait 6 weeks for the next one. I also fell ill and was in hospital with thyroid problems which has now added another hurdle to the whole process. After the failed tese in Jan we kinda knew we were up against it but trying to remain positive.

We had the op last week, unfortunately it was unsuccessful. No answers, just the end of the road to have his baby. I am truly devastated, I don’t really know how to cope right now. My husband has said he wants to proceed with donor sperm which is amazing as he seemed so against before when the fertility clinic mentioned it. I just feel like I’m grieving all over again. First it was grieving the chance to conceive naturally, now it’s the loss of not being able to have his child.

He won’t really talk too much about it and I’m worried he’s holding back. I keep telling him I’m always here and that he can tell me anything even if it’s anger, upset, hurt, embarrassment anything at all. I love him dearly and I wanted nothing more but to have his children!

So I guess next steps… are there some of us on this thread that are going through donor sperm process? How did you choose? Did you see any pictures? Are you planning on telling the child early on, later, not at all?

My husband wants to keep it secret at the minute until we get further but I’m finding it hard keeping it from my family who knows everything up until now as we’re super close! Thank you everyone for all the support so far! I’m tearing up writing this but I know I’m not alone, it just feels like it right now!

Hi @RubyStar22 ! I am so sorry about the outcome of the second MTESE, I can't imagine how you must be feeling. However, looking at the bright side, it is great news that your husband is now keen on the donor sperm path.

I can't provide any advice on this process, as we are a step behind you still (we are in waiting list for MTESE).

However, the situation you are facing resonates with me. When we were waiting for the final results to conclude on our diagnosis, my husband was behaving similarly. And i was feeling sad and upset cause I didnt know how to help. He didnt want to talk about it, he didnt want to do anything... We had really hard times...

Now things are better, as our diagnosis was "better" than expected (genetics were ok, we were diagnosis with unexplained NOA), but I am really worried about the outcome of the MTESE, as being realistic, chances are really low :(

I believe (even if this is easier said than done), maybe the best is to try to give them some space until they are ready to talk about it. Even if my husband's behaviour was making feel so frustrated, I also understand that even if we are together on this, it wouldnt be the same for me if I actually was the one diagnosed with the issue. So I believe the grieve is slightly harder on their side...

I just can say that you are not alone on this! Sending you a big hug from here!

@RubyStar22 so sorry and heartbroken for you :( I can't imagine how you must be feeling, but definitely do allow yourself to feel pain, hurt, sadness etc as its natural to feel that way. Completely resonate with worrying about your husband, my husband is very similar and doesn't like talking about how he feels much. I would give him space but also let him know you are there for him, which I am sure he already knows. I can't help with the donor Q's as we will most likely be going for the adoption route if unsuccessful, but I pray and hope the next steps are smoother for you both and you're blessed with a happy and healthy family. Please know we are here for you if you ever need to talk. I can imagine this is all really painful, but in a way there is closure, which hopefully will bring some certainty and clarity.

I am so sorry @RubyStar22 ☹️ this journey is so so cruel and unfair. xx

@RubyStar22 We have gone down the Donor Sperm route and we are now 3 months pregnant. It's not ideal but it's just DNA at the end of the day. He will still be the father. After being given a 20% chance of Mtese success (even if they find sperm the chance of success is still slim with that sperm) it made sense to go the donor route in terms of ease and success rate. If your partner is okay with Donor....rather then feeling sad you should be delighted that you still have a chance and your supportive partner is on board with it. It's an exciting time for you.

We used Cryos. Paid around £200 so we could see adult pictures. Was straight forward but I'd suggest if you really like the look of a donor go for it straight away as the popular ones go quickly! The sperm cost around £1000 to be shipped from Denmark (NHS doesn't fund this part) and the IVF was then funded. Didn't like the idea of sperm from the UK as the pool is tiny.

Wishing you all the best.