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

Thanks so much for reaching out. It feels such a lonely time doesn't it? I've also shut myself off from friends and family. It's really hard because I was so open about trying to conceive (naively) and I've always been open about going to get advice etc. Now I'm a bit stuck with what to say and still respect my husband's wishes so I've just found myself avoiding meet ups etc.

Totally agree about work! I'm off work (teacher) and can't afford to go anywhere. In fact my husband has a big birthday next week and we've had to agree to scale any celebrations right back because we have these appointments to pay for.

We've had the same comments. That I should leave, that I would be better off without him etc. He hasn't said things like that for a while but he definitely has spells of being distant; has slept in the spare room a lot etc. It's hard to know if it's because he is processing it all or if it's the side effects of the meds. How is your husband doing now?

He's only been on the medication for 6 weeks so may be too early. Made me laugh when you said about the muscles though! My husband has been loosing weight but sure he would love someone to ask if he has been working out!

Is the microtese booked in with Jonathan Ramsey himself? Hopefully you won't get to need it but it is good you have it scheduled in if needed. The whole thought of scheduling it in and basing ourselves in London for it feels like a logistical nightmare.

Sorry for the long post, been good to actually speak about it! x

@Appl3Pips we were given a 60% chance of it working. So glad that it did 🙂. My husband had a undescended teste when he was younger and had surgery. They said that it may have been that.

We didn't want to wait for the NHS as we had already been trying for years at this point. I am 37 this year and we wanted to get started on IVF as soon as possible.

@donnie12 3D sperm printing?! 😱 that sounds crazy. I did read a while ago about some Chinese scientists who had turned a normal cell into a sperm cell which I thought was pretty cool. Really glad you've started IVF now. I know it's been a long journey for u to get to this point.

@2022ttc @sackofpotatoes123 sending love to you both. Wishing you both luck with the next appointments with JR xx

@donnie12 thank you for your advice, appreciate it. I’m pleased that things are moving forward for you. Was it a massive relief once you decided to go down the donor route? My husband most likely has obstructive azo as his fsh and bloods were all normal plus he has previously had sperm in his ejaculate. Die to this am I right in thinking that they are more likely to find sperm in a microtese?

@WhiskeyInTheJar33 thanks for the recommendation! So he put your other half on meds but you had the microtese procedure through nhs?

@Nats140 thanks for your reply, so pleased it worked for you. Did you have a long wait before actually having the surgery? And was your partner given any medication prior?

It’s just a bit daunting to fork out £6k for the surgery, and this money could be used on IVF if our 1st nhs round fails (if we are lucky enough to get sperm that is). My brain is a mess 😫 how did you guys manage the money side, any tips?

@Appl3Pips Okay that's good that your partner has normal hormones and OA rather than NOA. You certainly have a much higher chance of success.

I'd strongly recommend you get in touch with https://www.imperialreproductiveendocrinology.com/ as your partner has OA then it can potentially be solved with medicine alone and if you read the attached he would prescribe your husband a course of Clomid and HcG which could bring sperm back without a microtese. He used to work for Mr Ramsey actually.

Of the 5 Azoospermia urologists I spoke to i liked this guy Channa the best. He was more 'realistic' with our chances of success then the others and was honest that even if they found sperm after a microtese the chances of success was 1 in 10 compared to a 1 in 2 chance with Donor Sperm.... however as your partner has OA then there is a chance the medicine alone would work.... Anastrozole which Dr Ramsey provides is for High FSH (NOA) so wouldn't work for your partner. I'd seriously give Channa a try, don't need to go to clinic either, as long as have results can do it on zoom or phone.

@Appl3Pips Yes Mr Ramsey started DP on anastrozole in Feb 2022. April 2022 we had initial appointment with our clinic who put DP forward for varicocele embolisation so he carried on with anastrozole until 3 months post embolisation when repeat SA showed sperm in the ejaculate. Our clinic stopped the anastrozole but DPs count returned to 0 a month later. I booked a follow up with consultant after and asked if DP could go back on anastrozole prior to mTESE. My clinic has previously told us they don't prescribe anastrozole (which is why it was stopped). Luckily we saw a consultant who works with Mr Ramsey and he re-prescribed anastrozole.

@Appl3Pips we waited six weeks for the surgery and my husband was told to take clomid and proxseed. Proxseed every day and clomid every other day. The side effects were horrible. He did feel really low on them. We were so happy that the surgery was a success. The urologist confirmed that it was good quality too.

We used credit cards to pay for it as we don't have any other savings. We are working hard to pay everything off before starting IVF. Its all so expensive 😒.

Hope that everything is good with you and that you find success.

Thanks so much @donnie12 I will definitely look into that. So kind of you to pass on your knowledge! I’m a bit confused though, if his hormones are normal why would they give him medication? 🤔

Gosh @WhiskeyInTheJar33 it’s such a back and forth isn’t it! So pleased it worked for you!

Oh wow @Nats140 that’s so good that it’s good quality! My husband had an undescended testicle too so we’re sure that is the reason. Were your partner’s hormones/genetics normal? Just wondering if they would put my husband on clomid if his bloods were all fine. I hope you don’t mind all the questions 🙈 just so good to be able to talk to people that have been through it.

@Appl3Pips yes genetics were normal. FSH was 7.5, LH was 7.6 and testosterone 23.9.

Absolutely no problem with all the questions. More than Happy to help 🙂. X

@Nats140 thanks for that- so am I right in thinking he had an obstruction somewhere if bloods were normal? We are in a very similar situation as our PESA/TESE failed too, did you find it hard to be optimistic after that? So pleased it turned out for you xx

@Appl3Pips The hormones for OA help restart the sperm creating process. Has he had an ultrasound though? That could potentially show the blockage......also has he taken Testosterone / Steroids before as that could be the reason as well.

Hi everyone, hope you're all doing OK! So grateful for everyone sharing their stories and advice.
Little update from me - we repeated my fsh last week and it was 7.5 - so they were able to complete our referral to bourn hall 😀 they called me today to say they've accepted and funding has all been confirmed. They have us on a waiting list for an appointment with Dr wiseman for andrology, and said this is hopefully going to be in May.
We've also had contact from genetic counselling to say we should be seen next month. I'm so relieved things finally seem to be moving after such a long wait.

I'm hoping you all might help with some questions I have since seeing these recent posts!
We haven't completed any forms so I'm confused as to how funding has been agreed! Is this normal?

Regarding OA / NOA - my partner has a "complete deletion of the y chromosomes in the AFZc region". His FSH was 6.3, LH was 2.3 and testosterone was 8.6. We were told all of these were in the normal range - is that right? I was under the impression that he has NOA based on the y deletion issue but I don't think his FSH is high (or low?!)....he also had 12 sperm in his first sample, but then zero on the following 2. Would medication work in his case? I'm really confused about all of this and it's hard to know where to go to find out any info.
His SSR will be done at bourn hall but I'm not sure if they do mtese there. It does sound like this is the most successful procedure for SSR so I do hope so

Amazing news @Magix86 !!

Do you mean Bourn in Cambridge? Yes they do mtese as we considered having ours done there. It's also on their price list under andrology.

www.bournhall.co.uk/wp-content/uploads/2023/11/Bourn-Hall-Financial-Information-for-Patients-November2023.pdf

xx

@Magix86 Yes Bourne Hall do Mtese and Oliver Wiseman is one of the best in the UK.

Your husband will most likely have OA as his FSH is normal...however his T levels are really low and that is not normal (ignore what the NHS tell you)....anything below 12 is very low, they just say it's not low as they don't want to prescribe T-Replacement (which after his mtese he will need as his T levels will drop even further and they are dangerously low now. Low T leads to an increase in likelihood of cancer, decreased bone density not to mention general tiredness). I'd be tempted to contact the endocrinologist I sent a link too a few posts up as they can look at possible medicine such as HcG and Clomid combined to start sperm reproduction again.....however it might be more tricky as of there is a chromosome missing seems it's something he has been born with but worth speaking to an endocrinologist along with Wiseman as well.

Good Luck!! As I said once all this is done your partner should demand he gets testosterone replacement and not let them fob him off. Which they did with us but that endocrinologist I mentioned above gave us a private referral meaning the NHS had to give us testosterone replacement..,although be mindful once you start taking T replacement then that leads to infertility so would take it after the mtese.

@Magix86 on my husband's results the 'normal' range for testosterone was classed as 8.64 - 29. I don't know much about what @donnie12 said but I do know low testosterone can cause low energy/mood.

My husband was 24.12 and after his mtese it went down 18.59, so it has dropped. This is because they essentially take part of the testicle out. We haven't yet had it tested after his second mtese, and are anticipating it's dropped further. This is the reason they don't recommended too many mtese, and check testosterone after each one.

@donnie12 has your partner seen any benefits to being on testosterone? Or any bad side effects?

@lemons44 Yeah this is the NHS guidelines which is an absolute disgrace really. It's so they don't have to prescribe anyone Testosterone Replacement....Anything below 12 is basically the T levels of an 80 year old man.

Thanks @lemons44!! Thanks for sharing re. Bourn Hall - yes it is the one in Cambridge. I wonder if they do mtese for nhs referrals, or if they only do this privately? I'm assuming they will suggest other options first, given that mtese is so much more expensive?!
Do you mind me asking why you had 2 mtese done? Was the first unsuccessful?

@donnie12 thanks so much - great to hear good things about Dr wiseman 😊 will certainly ask him about medication options, although I wonder if they do agree medication then it might then delay SSR while they give it a chance to work...

My partner definitely struggles with tiredness and low mood!! I think we'll need to ask about testosterone replacement for sure. From a quick search now, most of what I'm reading says above 8 is OK but it's not something I know anything about!

@donnie12 my husband said the NHS keep lowering it. What was your OH's T levels for him to get it prescribed? Has it helped him?

That’s great news @Magix86 so glad you have some movement in the right direction 💖

@Appl3Pips we didn't actually get confirmation. They did mention an obstruction early on though.

Yes, last year was so challenging! It's really been hard and has really affected me and my husband mentally. We were just so determined to try everything we could to get healthy sperm for ICSI IVF. After the TESE failed, we were devastated and had to push to be referred to a urologist in London for a consultation and the surgery. Its such a hard journey and it's been so hard, but we are optimistic about our next stage.

We are just getting ourselves in the best position financially before applying for a loan for IVF. I really hope that everything turns out okay for you both. X

@Magix86 I'm not sure about the mtese for NHS referrals. I would think they would but it might be worth querying it with them. If they have accepted you referral for NHS funding I would think they would do the mtese on NHS.

So we had two mtese because ours was a bit of a weird case. My husband had an mtese in December 2022 on one testicle and they did find 4 vials of sperm. Unfortunately we think there was a bit of an issue with the quality because once we started IVF none of our embryos progressed past day 3 .. normally if the embryo stops developing in the first 3 days it's an egg issue and if it's after 3 days it's a sperm issue as that's when the sperm has a bigger part to play in the embryo development.

So after 2 failed rounds of IVF we switched clinics and we decided to try another mtese on the other testicle and got more sperm and this time we managed to get two embryos reach day 5. If we hadn't have got these 2 day 5s we would have moved to donor sperm.

My husbands azoo is obstructive as he has lots of scar tissue in his testicles from a hydrocele surgery and it stops the sperm coming out. The first mtese took sperm from the testicle that we think was more damaged with scar tissue so it could be that this time by doing it on the other testicle it was a bit more healthy and so we had more healthy sperm. My husband made a lot of lifestyle changes before the second mtese which probably helped too such as losing weight, no fizzy drinks, limited caffeine, no alcohol etc.

Xx

@sackofpotatoes123 don't apologise! Feel free to message me anytime, I've been through everything you've said so totally, I'm here anytime x

@everyone hope you're all well and sending you all love and patience and prayers ♥️

Hey guys.

Not posted for a while but been lurking.

In January we had our appointment with the andrologist.

We are getting very irritated by the process. The appointment went at lightning speed, all we got from it was that we would need SSR (which we knew) and isci (which we knew). They then advised we would join a waiting list which is 5-6 months.

We left, thinking we were on ivf waiting list. A few weeks later it occurred to us we received no letters or anything confirming it, no questionnaires etc. So I rang, they said it's 5-6 months waiting list for the ssr, not ivf. And after that, you join waiting list. We were miffed, but not too fussed at this point as we have various house/business plans etc, so decided a little bit extra of a wait isn't too bad.

Last week, i thought I would check to see how the surgery waiting list is coming along, as by the timeline they initially said it was looking at may / June. They informed us it's now looking like "end of the year", and they can't be more specific. And on top of that, it would still be looking at 6 months after that for ivf.

It's ridiculous, we've been let down every step of the way, we first started seeking nhs help for male infertility after it was obvious my husbands abdominal surgery had complications in April 2023, and the surgeon, urologist etc everyone involved offered absolutely 0 support, despite knowing we wanted to start a family. Its now over a year later and we still haven't made it to the waiting list!!

We have decided to consider private for the sperm retrieval.

I know it'll differ all over country but what are peoples experiences of waiting lists privately?

Hi @wateringcanface really sorry to hear of your experience. We also had an initial andrology appointment jn January and were meant to have a follow up in March but the appointment has been moved to end of august! We decided to go private and since we met with Dr Ramsay in Feb, he scheduled in the Mtesse for May (to allow 3 months more on the Anastrozole)