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

@Sammysquidge I think it really depends on the specialist. Seems like everyone has their own way, I would push for fresh sperm and fresh eggs if you can though!

@lemons44 that's amazing about your dh. Mine did the same thing and he said it was like therapy with all his workmates sat around talking together.

Thank you @IslaO. Wish I had better news to report. We got positive test results but sadly ended in a big bleed and my Hcg levels dropped. We were so gutted especially because I felt pregnant and thought this time would be different but I woke up one morning and had this empty feeling. I said to dh that I'm not sure how much more I can do, taking such a toll on me emotionally, and mentally.
Everyone around us is pregnant or having young babies. I had one of them tell me that chemicals are really common and she's probably had one without even realising 🙄 I thought it was really insensitive and dismissing what I was going through. Anyway sorry to rant, I know you girls know what it's like xx

@pomdownunder1 thank you. We haven't made any decisions yet but wanted to understand our options and whether having back up donor sperm would be another option to consider if the microtese didn't work.

Sorry you are also struggling emotionally and mentally. This journey is just so cruel and unfair. I've tried to not let things some people say upset me anymore as sometimes I think they say things innocently and they just don't really get it as they haven't experienced it themselves. But I get it is so hard xx

@Sammysquidge you're so right. People don't know what to say, it's just a rubbish situation!

We had the same thoughts in terms of donor but where we are (Aus) there aren't many donors and usually about a 3-4 month wait. Plus you'd have to purchase it before hand. Rules may be different in Uk though!

Oh @pomdownunder1 I'm so so sorry ☹️ I know there are no words but I am sending you a huge hug. Maybe take some time for yourself for a while to heal and process it all? You've been through so much in such a short space of time with all the egg collections and now this loss too. This journey is just so unfair and I'm so sorry this has happened to you 💗 also your friends comment was really horrible!! Some people just have no idea what it is like to be going through all this! xx

@Sammysquidge yes I agree with Pom it depends on the consultant and situation. I think most places will do the mtese first and freeze the sperm so they don't put you through an egg collection and then they don't find any. But I suppose if you have back up donor sperm that wouldn't be as much of an issue.

With frozen sperm about 30-50% of the sperm do not survive the thaw but this is normal.

@wateringcanface I can't believe how rubbish the NHS are being with you! However I am sure the andrologist will provide some answers. I definitely think your OH needs a scan to see what's going on. Maybe consider keep ringing the andrologists to see if they have any cancellations to speed it up?

@Bran90 so glad you found the thread 😊 I would definitely push for more tests as it sounds like perhaps there's an issue with the implantation? Some clinics are very good at dealing with stuff like his, I THINK (but cannot be 100% sure) ARGC for example really focus on the women's side and getting the embryos to take. Could it be worth researching clinics and paying for a consultation? even if you don't end up using them you may get another opinion on things they could do differently or add to your treatment.

@wateringcanface I'm so sorry that you've been left to do the research for yourself and the doctors haven't given you much clarity on your husband's diagnosis.

My husband has retrograde ejaculation which is being caused by the medication he has to take. We were told by numerous doctors that his meds wouldn't affect his fertility. Turns out he's the 1.5% that have this as a side effect.

We are in our late 30's and I have low AMH, so we don't have time on our side. I was very pushy with our doctors when we were trying to determine what was causing the dry ejaculate. I had done my research and held firm whenever they were getting dismissive of our concerns. In the end, it did lead to a much quicker diagnosis and enabled us to get past a lot of the stress that comes with so much uncertainty.

It sound like your husband might not have retrograde since there is no sperm in his urine. It does sound like the issue might be from surgery which has caused an injury. Which as you suspect might be before the sperm reach the bladder neck. I would definitely opt to do some private tests to minimize the waiting time if that is an option for you.

Thank you for the info @lemons44 @pomdownunder1 I always find during appointments I concentrate so much on trying to take everything in that when I come away I then think of all these unanswered questions that I have once I've processed everything!

Hi everyone, we just went a private clinic to have my husbands hormone and genetics tests done (the hormone tests we had done from GP weren't complete annoyingly only checked testosterone). Just wanted to ask, what are we hoping to achieve from these tests? I feel so overwhelmed at times and feel like I'm guided by my own research more than doctors actually telling us what's what!

@2022ttc in my husbands case we were told the hormone tests were to determine whether his azoospermia was an obstructive cause or non-obstructive. Because his FSH levels are high they have told us that is definately a non-obstructive cause and this determines the type of SSR required I think. He is also due to have genetics tests that check for things like cystic fibrosis or other congenital causes to the azoospermia. It does feel like we are bit left to figure it all out for ourselves sometimes doesn't it. Hope that helps

@Sammysquidge thank you so much. We were told the genetic test results take a couple of weeks to come back so hopefully will be back in time for our first consultation with Dr Ramsay in December.

@pomdownunder1 so sorry to hear what you are going through! Give yourself time to decide on what your next steps are. I find people who have no idea of the journey you have gone through often say the most insensitive things to minimise what you are feeling!

@2022ttc I'm no expert, but from my research, hormones they are looking at testosterone, LH and FSH - this will identify if low testosterone is a cause and if the body is trying to produce sperm. Depending on these results, can have an indication whether it's OA or NOA (FSH tends to be high).
Genetics - I believe they are looking a chromosomal / Karyotype disorders (such as kleinfelters), CF gene carrier and for y-microdeletion. These conditions affect testosterone levels, CF carriers may be born without a vas deferens (which means the sperm has no way of getting out the testes) and for y-micro deletion there are 3 types, a & b usually do not produce any sperm and type c there a 30-50% chance of finding sperm via micro-tese.

Depending on the outcome of these tests you will have a better idea if it's obstructive or non-obstructive, whether medications (anastrozole, clomid, HCG) will help, and likelihood of finding sperm. Fingers crossed for you x

@pomdownunder1 - I am sorry to hear about your chemical. I think people say "it's so common" to give a feeling of solidarity and hope as others who have experienced it often go onto have healthy pregnancies, as opposed to trying to minimalize feelings, which I guess, statistically speaking is true, but when you factor in difficulties TTC and see a positive pregnancy test as not just a potential baby to celebrate, but a triumph as you've overcome adversity, it's a double whammy.

I am not even far enough into this process to think about positive pregnancy tests, as it is not going to be achieved with medical intervention which he (and we) has yet to have, but I already have anticipatory anxiety. While everyone is obviously and rightfully desperate for a pregnancy to stick, when relying on fertility treatment, it is not just an emotional/psychological need for it to stick, it is a physical (as the body can only take so many rounds of treatment) and financial (as if you exhaust NHS funded rounds, our purses can only take so many rounds of treatment too).

thanks @coffeelover2023

I am surprised they were so dismissive that medication could have caused the retrograde, it is listed alongside diabetes as the most common cause of retrograde. Glad you got his diagnosis sorted. What was your solution? Did the retrograde stop if he stopped medication, or where you able to get sperm from the urine?

I am very confused about this all, it is just such a weird thing to happen. Retrograde initially made some sense, as the surgery he had (removal of the rectum) involved incisions around the pelvic area which can theoretically cause nerve damage. His consultant who has been doing this surgery 15 years, has never had this happen. My OH was thinking of asking for his medical notes, to see if the surgeon got the surgery mixed up and accidently removed his prostate as well. - I said I highly doubt it. And looking at the anatomy of that area, it would be hard to do accidently.

I can just find little online about blockages causing complete dry orgasm, in most people, they produce seminal fluid, but with little to no sperm, as opposed to just nothing coming out. It is concerning me that he has just outright stopped producing anything, and that it is not a block, there is just nothing to come out!

I am trying to hold onto the positives, his hormone levels are healthy, he is healthy, and as far as we know, I am healthy (apart from this very moment where I am full of the flu).

I am still planning of tackling the subject of "what if we aren't able to you use your sperm at all" even though odds are currently in our favour for medical intervention to be successful, I want the back-up plan to be discussed. Trying to find the right time is difficult though as he's been a bit down in the dumps about the whole thing (understandably), though he is very resilient and willing to try and do anything. It's also his dads 2-year anniversary from when he passed away, so probably not good timing.

I am quite sure though we will come to the decision that doners or adoption won't be for us. While obviously we could change our mind as I am sure many people do, I just want us to know our current preferred options from the onset.

@wateringcanface Yeah, the dismissiveness over the medication was really frustrating. It could be a symptom of the fact that most fertility doctors where I am specialize in women's issues so they are just unaware. I was super annoyed because one urologist was so convinced it wasn't his meds that he suggested my husband be tested for diabetes.

Unfortunately, his medication is not the type that can just be stopped. We have tried to decrease his dose of medication and are doing another SA at the end of the month to see if we can freeze some sperm. We are also trying a drug that has been shown to contract the bladder sphincter which prevents the sperm from entering the bladder. Otherwise, we will try to extract sperm from his urine.

It wouldn't hurt to get your husband's medical notes from his surgery, the more information you can give the doctors, the better. With my husband's retro, he can produce a tiny volume, but those secretions seem to be coming from the prostate.

Definitely hold on to the positives, that's what is helping me through. Wish I could give you more advice, but hopefully knowing you're not alone helps you.

@coffeelover2023 are you trying Sudafed by any chance?

We tried that last week while we were still under the impression it was retrograde, did not work for us (which it wouldn't if it is not retrograde) but I have heard good success stories, I think it claims to reverse it in 1/3rd of men?

If you go onto the deep dark depths of some american fertility forums, I have seen a few posts of people extracting the sperm from the urine and doing an at home IUI, surprisingly, some even claiming to be successful with it. I wouldn't try that but goes to show what people are willing to do.

we will request his notes and are going to book in for a testicular and prostate ultrasound too.

thanks coffee you have given plenty of helpful advice

My social media has been all babies today, 4 people I know have had their baby in the space of 24 hours! I am not at the point yet of being jealous and upset about baby announcements, but 4 is a lot!

@wateringcanface No, we are using midodrine, but I had read about some people trying Sudafed!

Sorry the Sudafed didn't work for you guys, but it was definitely worth a shot! Our doctors were skeptical that the midodrine would work, but they said we could try as it wouldn't do any harm.

That's wild that people were extracting sperm from the urine themselves! I mean, I get it! Desperate times!

I think I'm getting to the point where social media is starting to get triggering. I was really fine for quite some time, then came the onslaught of kiddos in halloween costumes and it broke my heart. So I'm trying to be more cautious. Especially with the holidays approaching.

@coffeelover2023 I feel you.. this year my sister and sister in law both announced unplanned pregnancies. So happy for both ofcourse but it does hit you.. also at work in my team I've got 3 people currently expecting babies happily telling us about the prep and planning and scans, all while most of my absences from work are for tests tests and more tests

Hi everyone. I'm looking to speak to people in the same boat at me. My husband and I have been TTC for the past year and we finally got referred for tests last month. I was sure it was me who was the problem however all of my blood tests so far have come back normal apart from iron that was really low (haven't had a progesterone test yet). My husband had his sperm analysis done which we thought would come back as normal however last night we received the news that he has no sperm present in his sample. Even with it centrifuged. I am absolutely devastated and haven't stopped crying since finding out.

I have seen that some of you have been in this group for over a year. I don't think I can cope with this for a second longer let alone a year. How have you managed it?

Are there any success stories or hope? How long has it taken for you to go through this process? Is there any advice? Should we go private or NHS? Everything is so uncertain and I'm really struggling.

@jaspercats

Sorry you find yourself in this situation.

While any form of infertility is obviously a stressful situation that brings on anxiety regardless of the cause. From what I understand, male fertility issues are often easier to manage (theoretically) than female. I have stumbled across some mumsnet posts of very unfortunate women who are told 'unexplained infertility' and years down the line are no further forward in TTC, as there is no clear cut solution - whereas with men, though it may take a while, and you might have to fight to get the support and go through unpleasant and invasive treatment, there often is a solution.

Anyone please feel free to correct me in any of this, I am not an expert, this is just what I have pieced together through several weeks of research on the subject.

From what I understand, there are 4 causes of azoospermia, obstructive, non-obstructive and anatomical abnormalities such as being born without a van deferens. or some genetic causes.

If they do a blood test, while this is not a definite diagnosis, it can point the direction of whether it is obstructive or non-obstructive. For obstructive, hormonal blood results will be normal, for non-obstructive, they will be deranged.

For the other two, the investigations will be checking for chromosomal abnormalities, or a physical examination.

For obstructive azoospermia, there are surgeries to un-block, but some men opt not to do this and go for surgical sperm retreival

In most cases of azoospermia there are surgeries to retrieve sperm. There are a few types of this, if the nature of azoospermia is sperm production, then this surgery is more challenging as they have to search for little pockets where they hope they can find sperm being produce. For blockages, the ease and success rates are higher in finding viable sperm.

For sperm production issues before they consider a surgical sperm retreival, they will likely prescribe medication that aims to improve sperm production.

At this point, your husband needs to be referred to andrology, and you (has to be in womans name) need to get the fertility treatment funding underway as it is likely you'll need ISCI (a form of IVF where they select a singular sperm and place it into the egg to fertilise)

Unless you are absolutely swimming in cash, I would go for NHS treatment. It changes area to area, but most couples are entitled to three rounds. We considered private as we are inpatient. But I had a look at some statistics, and the success rate is higher within 6 rounds, than it is for 3, so I have considered that regardless of going NHS first, there is a possibility that I will need to pay for private treatment too. And you can't go back to NHS once you've had three rounds done privately.

I obviously don't know your area, but waiting lists where I am are not as horrific as I was anticipating, (3-6 months), still much longer than I am happy with, but I suppose for the sake of spending 10k or whatever it would be, it is best to get the free ones out of the way.

You can also ring around the clinics too to find the ones with the least waiting time, that's what I'm doing.

My advice for now, is to consider the first things the andrologist may ask, such as whether he is taking supplements, what his diet is like, does he drink, smoke etc? As this can be used as a big delaying tactic, that the doctor will highlight lifestyle changes that need to be made, and then say "try cutting back on alcohol, eating healthier, take these supplements for 3 months then come back and see if it helps" - So have that stuff underway prior.

Ok I backtrack about waiting times, I've been told 6-9 months now which is making me reevaluate things.

I might consider one private round, if that fails, wait for the 2nhs rounds at the end of the year.

🤔

@jaspercats hello, and sorry you find yourself in this situation. I joined this group in September when after 2 years of ttc we had some testing done which showed my husband has azoospermia. Btw, We had the semen testing done privately as the nhs wait was 4 months! Following the results we were devastated - I cried for a week non stop and felt so heart broken with a million thoughts going through my mind, all the what ifs.

Where are we now? I've found that GPs don't know a lot so we were left to research ourselves. My GP has referred me to the infertility department and my husbands asked his GP to refer him to urology / andrology (we did our own research and asked for UCLH hospital as I think they are specialists).

My referral is yet to come through. My husband has received an appointment letter but his appointment is for next May! So a 9 month wait.

Due to our ages, we have decided to go privately. This week we went and had his hormone and genetic tests completed and are waiting for results and we have an appointment with Dr Ramsay in December

@wateringcanface thank you so much for replying and for all of your advice. 6-9 months is so long! Is that for the IVF bit or for the sperm retrieval?

It's just shocked us both so much. In regards to lifestyle changes - he is so healthy. Doesn't smoke, only drinks occasionally at the weekend, is pretty sporty, has a healthy BMI (much lower than mine!) And eats well as I do most of the cooking!

Where we are they will only fund IVF once and will do a second transfer if more than 2 eggs were harvested during the first cycle. We would prefer to go NHS (especially as I have worked for the NHS for 11 years and feel that it would be nice if they supported me now) but we don't want to wait too long. Everyone around us is having children and it's heart breaking.

I didn't realise the fertility has to be made in the woman's name. I've asked and asked but so far they just keep saying no. My husband has a second sperm test booked for next week and hormone bloods for the weekend after. I'm hoping they will refer after that! Xx

@2022ttc thank for replying to me! I can't believe the first appointment is in May! I have heard of Dr Pipa through other posts who is at that hospital. Is that why you wanted to be referred there? Was the waiting list for Dr Ramsay as long? Perhaps it would be a good idea for us to try and get an appointment with him.

My husband is having a second sperm test next week and hormones the week after through GP but they are refusing to refer us anywhere yet. Do the genetic tests have to be done through a specialist or is a GP able to request them?

Would a fertility clinic be good enough for my husband to be referred to or should he go directly to andrology?

I completely understand the going private issue. We are both 33 so aware that age isn't on our side. I think where we are they only fund one if over 35 so we want to get it going ASAP. The criteria seems so unfair when you look at it! Xx

@jaspercats so my husbands GP did the hormone tests but he didn't test all hormones so we ended up paying £100 to do them privately. The genetics tests I believe will only be done on the nhs once you've been referred to Andrology which is why we didn't want to wait until May. The tests were very very pricey :(

Yes Dr Pippa is in UCLH which is why we asked for a referral there but didn't appreciate that it would take so long to be seen. Dr Ramsay had a bit of a wait too. We contacted his PA in September and the earliest appt was mid dec so approx 3
Month wait. The reason we paid to get the tests done privately is so that we have as much information as possible at this initial meeting and to hopefully save further time as the genetics test results we are told can take up to 4 weeks.

I am 36 and my husband is 41. My blood tests and ultrasounds all looked normal but part of me does still worry that we are focussed on my husbands azoospermia and what if I may have other issues which we don't even know about. Our age and the NHS wait is what helped us make the decision to go private.

It's really isolating what we are dealing with as my husband doesn't want me to talk to me family or friends about it and I have to respect his privacy so this forum has been a massive outlet for me x