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

@2022ttc yes, it really helps talking to others who understand. It must be so hard to not talk to any friends or family. My husband has said I can tell my parents and a couple of friends who have also struggled with fertility which helps. Have you got any friends who have struggled who may understand?

Ok, good to know. We will ring Dr Ramsay on Monday morning to get an appointment booked in! And will try to push for a referral to andrology. I have no idea what the wait is in our area though!

I honestly thought I would be the one with abnormal results. I've always thought I may have PCOS as I have top end testosterone and have hair on my face and neck and generally very hairy however that all came back within limits. Do you mind me asking what what your FSH was? Mine came back as 8.4 and over 8.8 was abnormal so I am concerned that this is the top end of the normal range. I'm worried that it may go up above the required range by the time we get round to IVF. Don't feel that you have to answer if you would prefer not to.

@jaspercats all my friends seemed to have got pregnant without trying but who really knows? Maybe they did have issues but didn't talk about them.. I think my husband is slowly warming up to the idea of telling family but I'm not pressurising him as it's a lot for us to deal with and come to terms with let alone dealing with Qs we don't have the answers too yet. Really happy that you're able to talk to family and friends - it will really help on the not so good days.

So I checked my results and on my day 3 test, my FSH was 5.9. I think it varies depending on where you are in cycle. Was yours also a day 3 test?

@jaspercats

You are welcome.

From what I understand, surgical sperm retrieval is a different funding body to IVF, so I am not 100% how the waiting lists work and intertwine for this. Private facilities can do both.

Me and OH are going to have a talk tonight about our plans. Last time we rang the clinic they said 3-6 months, and now it is 6-9 months. I went out with a friend last night who after 18 months TTC had her first IVF appointment, they declined treatment until they tried naturally for a further 6 months. (She fell pregnant naturally the month all her IVF medication arrived!). She also said the gaps between appointments were painfully slow, like 6-8 weeks. So, 6-9 months is the time it takes to be seen, but it could be a few months after that treatment commences.

Does anyone on here have any insight into this? Such as the average time from first appointment to treatment?

What I'm thinking for us, is that my OH gets his private ultrasound (booked for Wednesday), if there is a blockage, we take that back to GP and ask to be referred to urology (or whoever the relevant speciality is) and we enquire about surgical options to unblock. If there is a tiny bit of hope that there is a surgical option for us that means we can try naturally for a while, we are happy to wait till the end of next year for the IVF referral, because at least that way, there is a small hope of it happening naturally.

If from the ultrasound, there is no obvious reason for my OH's dry orgasm, and it is a complete mystery, then we will consider privately funding one round of surgical sperm retreival and ISCI. And then wait for the end of the year for the two funded NHS rounds.

My advice on stages for you would be to get his bloods done, if his LH and FSH levels are normal, that would suggest a block, which there could be surgical options for, and if fixed you could have an opportunity to try naturally. And if able, pay for a private pelvic ultrasound which could show the block or what is happening. The NHS can take ages to get these scans organised, so I would get them done yourself. Get the IVF funding application going simultaneously.

Its difficult, because it would be a shame for you to lose your one round of NHS funded treatment. But I guess it depends on how well you would cope with a potentially long wait for NHS treatment?

I'm very fixed in my ways, once I decided I'm ready, I'm ready. I have lost all passion for work, and I feel like everything I am planning now is just filling time, I am not depressed by any stretch, just...restless? I think my OH is in the same boat too.

I beleive it would feel very different for me if we could try TTC even if odds were low, as that way we feel like we are doing something, but as we know there is 0% chance of natural conception, it's very frustrating that we are completely in the hands of others and have to wait.

So yes, we will have a discussion, 10k for a shot at getting preggers early in the year vs what may feel like a wasted year waiting for treatment - what is worth more to us?

Sorry I feel like im clogging the thread with my long posts, I just find it really helpful to type out my thoughts, even if no one reads them 😂

Personally I would go private for the male fertility part. 90% of the NHS don't have a clue about male fertility....if issues are Azoospermia then you need to see a urologist who specializes in m-tese (there isn't many 1 in Manchester, 1 in Wales, 1 in Southampton, 1 in Oxford and all the rest are London) and then you know they fully understand Azoospermia as they are very few urologists who do.

Trust me you will wait absolutely ages for the NHS and you need that sorted before start processing the IVF part.

@2022ttc mine was taken on day 3 as well. Makes me so nervous as mine is quite high compared to others and so close to being too high for NHS funding. Really hope it doesn't go any higher over the next year!

It sounds like your husband is really struggling with the diagnosis. It's so bloody awful isn't it. All you can do is keep supporting him and it sounds like you're doing an amazing job at that already! My husband joined a WhatsApp group for azoospermia men, don't know whether that could be beneficial?

@wateringcanface it sounds like you have a solid plan that you are following and one that completely makes sense. I rang the clinic that we will be being referred to (once they sort the referral out) today to ask about time frames. They said once the referral comes in they can book an initial appointment within a week or 2 then further appointments for any tests. There are no waiting lists apparently (husband got referred for a second SA on Thursday and they rang up Friday to book him in for next Thursday). They said usually that anyone who will be having IVF will not have to wait too long as once they have all the results and funding they can proceed to IVF as soon as period comes. However he did say the SSR can take a few weeks as they like to perform about 3 in one day to make it worth booking the theatre for so maybe that it the bit that takes the longest. I have no idea, it all seems to depend on where you are and the clinic you're in. I also have no idea about how you even go about organising funding?! It's a minefield. Don't worry about clogging up the thread - you're really helping me!

@donnie12 we might ring up the one in Southampton on Monday to ask about this. I think we will go private at first originally as we want my husband to have his genetic tests and ultrasound booked ASAP. We were thinking about just going to a private andrology here first to get that then possibly to somewhere else like Dr Ramsay or Southampton later when we can get an appointment for a second opinion. There is a private andrology clinic where we live that says they also do NHS referrals and usually appointment are within 2 weeks of referral so maybe just maybe that might work? So much to organise!

Hello

Hope that you are well

Does anyone have any Good experiences with Dr Jas Kalsi and the Microtese? We have an estimated date of 7 December.

@jaspercats the WhatsApp group sounds amazing, how can he join

@2022ttc the WhatsApp group has been set up by the guy who runs knackered knackers. If you go on his page in the about me section there is a link to it. Hope this helps.

@jaspercats sorry you find yourself here. You've had a lot of good advice so far! I'm not sure I have much to add.

We were similar to you in that our NHS appointment in my name for IVF didn't have a wait time. However we did get all my husbands tests and sperm retrieved privately so when we went to the NHS for IVF we basically had done everything ourselves. All they had to do was compile the results and apply for our funding. Sadly both our IVF rounds failed so we are paying privately now anyway. For your IVF referral you will need your day 3/21 bloods, up to date smear test and my NHS also makes your have a Chlamydia test too, then there is some sort of vaccination that has to be up to date although I can't remember which. Maybe you can get these tests done in preparation?

Wateringcan had good advice about him starting lifestyle changes now (supplements etc) so these are underway. You say your partner is sporty - not sure if he cycles but that's one thing the urologist will ask him to stop. Same with hot baths, tight underwear.. basically anything that can heat up the testicles is a big no no as it will impact the sperm.

Thank for letting us knowing about the WhatsApp group. I have told my DH about it. Do you know if there's many people in it? Has your OH found it helpful?

One last thing, if you haven't already I would really advise you to contact your local CCG/ICB for a copy of their IVF funding policy and give it a good read so you are aware of the criteria and conditions.

@wateringcanface have you looked into Access Fertility funding packages? They do funding for multiple rounds which can work out cheaper. Something to consider if you don't want to wait for the NHS.

xx

@wateringcanface access fertility offer 2 cycles for £10,900 on finance

@Nats140 I think the access fertility funding packages do differ depending what clinic you are with as the package for CRGH is different to what it would have been had we stayed with our previous, non London clinic.
@wateringcanface if you know what clinic you want to use then contact Access and ask for the price list for that clinic.

Hi all. So my husbands hormones came back. He has an FSH of 17.2 and testosterone of 18.9. LH hasn't come back yet. That means he has non-obstructive doesn't it? We went to the GP yesterday who agreed to start getting all the paperwork together to refer us to fertility and we came back home a bit more positive but now I feel like I've gone back a step. The chances of finding sperm with NOA are lower aren't they?

The WhatsApp group has lots of men in it but apparently nobody has written anything since my husband joined.

@jaspercats Sorry to hear you're in the same boat. Yes with FSH that high it will mean NOA however his T is pretty high which is good....any ideas if he had mumps or something to cause NOA?

The male fertility page on Reddit by far the best source of info and regular posters on there. IMO if you can afford it I'd go see a private urologist (one who offers microtese only as otherwise they might not fully understand NOA) as the NHS haven't got a clue with NOA and if you are lucky to find someone who has a clue the waiting list takes ages....wishing you all the best. We found out in September last year. Was the worst 6 weeks ever but trust me when I say it does get easier / better with time.

Hi @jaspercats @donnie12 hope you're both well. Sorry that the results were not better than expected, but hopefully this means you can get the ball rolling with next steps.

I've just had a massive crying session. This process is so so so difficult. My husband went for hormone tests with his GP as I mentioned previously but they only tested testosterone and nothing else so we paid privately and went last Tuesday. Took day off work paid to go in to London etc and the large fee for the blood tests, only for them to call back and say "we didn't take enough blood come back again". I'm so angry upset and annoyed given this was PRIVATE, and you expect excellent service. Who can afford to keep taking time off work and travelling in to London for them to make mistakes? They also should have given the results of the hormone tests back by now and yet we have nothing. It just feels like no matter what we do or try there are obstacles after obstacles and it's just so disheartening. I know it's a very minor thing but when you're going through this, and pour everything you have into it, including money, and things like this happen you just want to cry

@donnie12 does him having a high testosterone make the high FSH not as awful? Just trying to get my head around it all. Honestly, we've had one of the worst weekends ever. I just can't seem to stop crying and I'm at work trying to do work but cannot concentrate at all. We will definitely pay privately to see a specialist. Husband has rang round most of them and likes the sound of Dr Pippa. We thought we would try and get his genetic tests done by our local fertility clinic first however as apparently they are quick with appointments once referred and Dr Pippas private waiting list is only 2 weeks. I work in pathology so the thought of his sample coming to the place I work in comforts me slightly as well. We are hoping to maybe has an appointment with a specialist early Jan if we can get all the tests done. How does that sound? The only thing I can think of however is the medication. Should he be seen earlier to start medication so that we have a good chance of having the surgery not a million years later? He's never had mumps or anything that he or parents can think of. I'll check out reddit. Are there any success stories from this thread of NOA which has lead to pregnancy? I really need to hear some good news.

@2022ttc in so sorry that you've been crying. So have I so that makes two of us! I completely understand where you are coming from. I think I'm still in shock as we only found out last week. I'm wondering when or if I will start to feel better.

That is so bad regarding your bloods. I work in pathology so unfortunately see this kind of thing often. Have you got the NHS app? Once test results have been commented on, they should be uploaded relatively quickly on there. GPs should be able to order these hormone tests pretty quickly and once the bloods are received in the lab they are usually reported on within 1/2 days unless its genetic or viral which can take longer. I would keep ringing and hassling them until they pull their finger out!

Are there any success stories from this thread of NOA which has lead to pregnancy? I really need to hear some good news.

@jaspercats @2022ttc I'm so sorry you're both having these awful days and crying. I really do empathise (we once waited 6 weeks for a TESE, booked annual leave etc. then they rang us the day before to tell us they wouldn't do it for us and I will never forget how much I sobbed that day).

@2022ttc that's so frustrating!! Is it possible to go back to the GP and ask for them to do the full bloods and ask for a refund from the private place? Could it be your GP surgery did take the full bloods but only sent you the testosterone? Worth checking maybe.

@jaspercats I know it must feel like the end of the world and I might not be the best or most knowledgable person to comment as our case is obstructive (although with suspicions it may also be the start of NOA too) but try not to lose hope. I've definitely read a good few stories of people having success with NOA. Even in the most extreme case (maturation arrest) it is possible in some people to find some small pockets producing sperm. However I think to manage your expectations I would ask the specialist for what they think the success rate of finding sperm will be. This way you can get your heads round it more and the likelihood of success and how you might feel about other options. I'm really sorry it isn't the news you had hoped - this whole journey is SO FRIGGIN HARD. We honestly all deserve medals for managing to actually get up every morning and function.

The genetic tests do take a while, the karyotype one takes about 4 weeks I think as the watch a strand of DNA over time, so maybe see if you can book that before you see Dr Pippa.

Sending you both big hugs. Xx

@jaspercats sorry just saw you work in pathology! So you probably know a lot more about the genetic tests and how they work than me xx

Thanks for the advice about access fertility guys, I didn't know that payment packages like that existed. I rang the clinic again, just to clarify about waiting list, they said it was 6 months to start treatment, not 6 months for consultation. I think I can handle 6 months. I've got GP appointment tonight about the IVF funding referral. While I am inpatient, for the sake of 6 months, is it worth losing my free NHS rounds? Probably not.

Sorry to hear people having been struggling so much, I think the awful weather adds to the doom and gloom. I am not into false positivity, and all this "just be patient, and you will soon have your baby in your arms" is BS, not that I've seen it on here much, but have come across it on Instagram and American based forums. I think it is important to consider that this isn't about attitude and positivity, it's about science and biology.

What I do find reassuring is that I have seen plenty more success stories, than those who weren't successful. If you have a money, intelligence to explore options, resilience, are willing to be pushy and fight against any dismissiveness, then odds are in your favour. (That is not to say that those who were not able to get there in the end lacked those things)

OH has a private ultrasound scan tomorrow, he had to have a private GP appointment first. GP was astounded that my OH has been left to do this on his own, and that urology did not arrange any scans. When my OH went to urology with the complaint of mild ED and not having any ejaculate, he just felt his testicles and said, "everything feels ok" and told him to contact an andrologist - from my knowledge, a physical examination like that can only diagnose varicocele, and cannot detect nerve damage or blocks.

GP was quite upfront on the limitations of an ultrasound, said that it would only be able to detect obvious obstructions, and only if the obstructions are in or just outside of the testicles, it wouldn't be able to show much further up. They advised it's a CT scan he needs. We are still going ahead with ultrasound regardless.

From my further research into this, I am leaning against it being a block, it is rare a block causes complete dry orgasm, as the block usually occurs before the prostate, meaning that semen comes out, but sperm doesn't.

I think it is most likely nerve damage from his proctocolectomy surgery, and that the nerves that perform the reflex action to propel the semen out are not working. When you look into this, it mostly comes up with spinal cord injuries, apparently using a penile vibratory stimulator can get something like 80% of men with spinal cord injuries to ejaculate. While he has not got a spinal cord injury, the dysfunction must be somewhat similar if it is nerve damage? that is my thinking anyway.

I tried looking for places in the UK that do this (the vibratory device to collect semen) but cannot find anything, as a long shot, I have ordered quite an elaborate looking cock ring, my google search history is very 😳right now.

I am quite hopeful that surgical extraction will be successful, therefore we can go onto have ISCI, but in the 6-7 month or whatever wait till that gets underway, if there is anything we can do to give us at least a small shot of trying naturally, I am willing to try it.

Ok...GP said she needs to have a consultation with OH before she puts a referral through for fertility treatment she said give it 6 weeks and if they haven't been in touch to ring up 🙄

Same practice told OH they need to have a consultation with me to do a referral.

The e consult specified it was for Fertility referral. Why not just tell us to come in together or do a telephone consultation rather than waste my time.

Why it never straight forward?

And like hell we will wait 6 weeks, he'll ring tomorrow.

That's interesting I heard really bad things about arg on other forums do you/others have positive feedback?

Hi all, how's everyone doing?

@wateringcanface we've just started the process for our Access Fertility package. I didn't realise this but you can also get them on finance which is very useful! How did the ultrasound go? Your search history about vibrating devices must look very funny 🤣🤣

@Bran90 I haven't used them personally as for me they are too intense, but i have seen some success stories with them.

Little update from me. We have started the ball rolling with IVF round 3. We are sorting the finances for a 2 cycle package and doing consent forms at the weekend. Hopefully starting prep medication next month for a January egg collection and synchronised micro tese.

DH has been mentioning sperm donors on and off. He hasn't said it outright but I get the impression he is mentally starting to accept that if the next two rounds with his sperm fail, then exploring donor sperm may be our next option. To be honest I feel I am also starting to mentally feel more positive about donor sperm. Mainly because of the success stories on here from springflowers and others xx

Not sure if this has been mentioned but knackered knackers recently started a podcast - just sharing in case anyone's partners find it useful

podcasts.apple.com/gb/podcast/the-male-fertility-podcast/id1713514767?i=1000632555897

@lemons44

Ultrasound was cancelled as sonographer was sick, rearranged for this Wednesday. That along with the gp telling me my OH needs an appointment not just me for ivf referral which has probably added a few weeks in delays has made for a frustrating week. - it was on the econsult what the appointment was about, why not just tell us over the phone rather than bringing me in for a pointless appointment 🙄

On a brigher note, my motivation for work seems to be coming back, and I'm looking forward to the festive season, I've got lots of social plans lined up for next couple of months. While things are out of my control and there's nothing i can do but wait, I'm just trying to my best to live life like I did pre desperation for a baby 🤣 and enjoy lots of wine, sleep ins, Jacuzzis, spontaneous trips, all things that can't be done when preggers or have a little baby.

If he's bringing up donors unprompted that definitely suggests to me he is feeling OK about that as a next step. I've been reading into donor experiences, and I'm so impressed with men who are happy with that choice, it really shows their desire to be a good father, and raise a child is a priority to them over everything.

We aren't at the point of discussing that yet. But I'd find it nice to know he would consider it, even if we decide its not the path we'll take.

OH has not tried the cock ring yet, we have an agreement that if i suggest any weird and wonderful methods of retrieving sperm, he'll give them a go, i'm just not allowed to ask about it and he'll only feedback if there is anything worthwhile to feed back on 😆

@lemons44 brilliant update, how are you feeling about the upcoming cycle? It will be nice for you to enjoy the Christmas period and a few drinks before starting stims.

@wateringcanface nice to hear that you are feeling more positive and looking forward to the silly season. It’s so important to have some normality and do things that make you happy during this process.

An update from me. I had a transfer of a 5D blastocyst on Monday so currently in the 2WW. This time we used my fresh eggs and my DHs frozen sperm, which seemed to yield slightly better results. We also have 1 in the freezer from this round, and 2 from the previous round. I’m trying to enjoy the 2WW but the thoughts of doom keep entertaining my mind. I really thought it would be smooth sailing if we found sperm, but of course nothing in this journey is easy or straightforward!

@Runner77 I still don't fully understand the ivf process, but if they've found sperm, and it's made it to 5 day blast, the precarious bit is over relating to the mfi, and now it's just an odds game of will it stick?

As if the sperm wasn't good enough, it wouldn't of made it to day 5? Meaning that bodes well if (hopefully not) any future cycles are needed?

Just trying to put a positive spin, that it's now just about odds, and odds are on your side.

Try not to symptom track, I have done that this month even though there's 0 chance I can be pregnant, unless I accidentally got semen in me elsewhere without knowing. The thought of a miracle conception keeps creeping in my mind, that somehow, despite no visible evidence of semen, one solitary sperm found its way out 😂.