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

Hope everyone is doing okay 💗

Thanks for the recommendation @WhiskeyInTheJar33 you sound so knowledgeable! Hope you are recovering well and are getting a bit excited for your FET.

Thanks for your reply @jaspercats, I do find comfort on the fact he has had sperm before so surely they must be able to get some more?! We just don’t understand. Still hoping it’s an obstruction somewhere as his bloods were all normal but seeing as the PESA failed maybe the obstruction is somewhere else?

Couple of Q’s:

-Does anyone know if there have been successful pregnancies from microTESE sperm or good quality embryos?

-Anyone else had a failed PESA and TESE but then had a successful microTESE?

Thanks for your input! And hope you all have a lovely weekend!

@Appl3Pips @StarJasmine93 sorry you both find yourself on here.

@Appl3Pips yes if you look at the posts from 2nd of March Nats partner had success with mtese after tese. There's a few ladies on here pregnant with surgically extracted sperm, pretty certain some were mtese, and others that have embryos from mtese sperm. Mtese has a higher success rate as they pop out the testicle and really look around rather than taking a random biopsy. If you're not screamish there's some good videos on YouTube of the surgery that really helped me understand how it works.

@StarJasmine93 when we saw JR he did request a sample on the day as he wasn't sure if our previous clinic had done centrifugation on the semen. My husband did the sample then JR told us to come back in an hour when they would have the results, so we grabbed a pizza express then went back. So it is a quick turnaround.
We did all private for the sperm side even mtese and then had NHS IVF. Contact the CCG for the funding policy that covers IVF to read all the details as it really helps.

Xx

Thank you @lemons44 - that's really helpful. Will try and read up on my CCG's funding policy.

How are you doing? I think I read you're having an FET next month? Not much longer to wait 🙏

No worries @StarJasmine93 it took me a while to find my policy. In the end I actually contacted the CCG (or ICBs as they are now called) and they sent it to me. I think it was called something like a clinical priorities policy.

Yes I am doing a preparation cycle for my FET next month, thanks for asking! I'm just trying to keep busy as otherwise it's easy to get a bit consumed with it. Watching MAFS aus, doing lots of spring cleaning and I've started sorting my garden for summer 🌸🌺 Hope you're doing ok. Can u keep ringing kings to see if they have a cancellations so your OH gets seen sooner? Xx

@lemons44 may be joining you for FET next month. Depends when I start my next cycle and if clinic get meds to me in time! Feeling a little nervous about it! It's all very real now!

@lemons44 thanks for that! I just trawled the internet and managed to find the policy for south west London ICB but I'm still not clear. It states that SSR is funded by the NHS through my ICB but not whether it impacts our ICSI NHS funding should we pursue SSR privately. I might have to call them direct to try and find out more. It's all so very confusing 😑

That's good you are keeping your mind busy. I'm struggling a bit at the moment if I'm honest. One of my friends just announced she's pregnant with twins. I'm delighted for her of course... She also had her troubles TTC so it's amazing she's now got a happy outcome but I can't help but feel left behind. I'm trying to also see it as hope though.

We've got a holiday for a couple of weeks so I plan to get onto Kings again after that to see what's what. The waiting in this whole process is what I really struggle with.

Must learn to be more patient 😂

I'm sorry to hear you're struggling @StarJasmine93 I totally relate to the feeling of being left behind. It's really tough. Especially if friends are moving onto second babies whilst we are still trying to have one. That's great you have a holiday to look forward to. Are you off anywhere nice?

@WhiskeyInTheJar33 that will be good if we are cycle buddies! Keep me updated. How are you feeling?

@StarJasmine93 sorry for the delay in responding. Our cat has been unwell again and this has taken over our lives the last couple of weeks. I've been full time cat mum, syringe feeding him. I'm sure it's harder than looking after a child!

With the SA - we just went to the GP a couple of weeks before seeing Dr Ramsay and asked could we have a referral for a third SA as it was likely that we would need it for Dr Ramsay and it had been 3 months since the first one. She just said yes. To be honest she has been a great GP and has even agreed to do my thyroid and vitamin tests just because I asked her to. It's nice when you finally find a GP who wants to help you as much as they can!

I hope you have a lovely holiday. Going anywhere sunny? We would love to go away soon but it all depends on our cat at the moment.

Even though we had our funding approved and sent to the clinic on the 13th March, we still haven't heard from the clinic. I've rang and asked them and they just say they will chase the NHS coordinator. Disappointed as I'm not sure we're going to get a cycle in now before Glastonbury which we have tickets to and I'm aware that the way my cycles fall would mean I would be stiming during the festival which i obviously cant do due to scans. Annoying as means we may have to wait until after Glastonbury to start but we're both keen to continue our plans and go to the festival as its a happy place for us both and we could do with having some fun!

@lemons44 I'm feeling ok. Recovered from OHSS now and feeling nervous about the first transfer! Do you know when your transfer is next month?

@jaspercats it's good you've had your funding approved. Hopefully you'll hear soon and can get a cycle in before you go to Glastonbury! Once you start things move very quickly!! Or at least that's how it feels given the long journey up to that point!

@pigbabe hope you've been ok during your 2ww.

@lemons44 @jaspercats off up to Scotland for a 2 week road trip. I'm Scottish so going to visit some family and friends which should be nice!! @jaspercats not particularly sunny haha!! Sorry to hear about your cat. Hope it gets better soon, poor thing!!

Update from me... Biggest surprise! We got a call from Kings on Tuesday offering us an appointment for today! Unfortunately we couldn't make it because we are away but they managed to get us in for a few weeks time! I'm so shocked. A lot quicker than the September timing the receptionist told me!! Feeling a bit lighter from this.

Hope everyone is ok.
@WhiskeyInTheJar33 good to hear you feel better after the OHSS

@WhiskeyInTheJar33 Well the TWW feels so much harder than I thought it would. My OTD was Monday and sadly it didn't take and we got a negative result. Had our follow up on Wednesday and we've been told we can have a FET on my next period in April fingers crossed(!) We are gonna opt for a natural FET but still have the progesterone pessaries. Will you be doing a medicated transfer in April?

@pigbabe I'm soo sorry it didn't work but it's good that you've had a follow up already and have a plan in place for your next transfer!

I am doing a medicated transfer. 8mg of Progynova daily, scan on day 12-14, and then progesterone pessaries.

@lemons44 thank you so much for your reply, it has made me feel a bit more positive about things. And the youtube videos are very interesting! Hope the prep for your FET is going well, I too like to distract myself with a bit if MAFS 😆

Am so grateful to gave found a group that knows exactly what I’m feeling like. Had 2 people ask me yesterday if I have kids or if I’d like kids- always a knife in the heart!

@Nats140 and @RubyStar22 hope you don’t mind me asking a few things- my husband has also had a failed PESA/TESE on one testicle and had been referred for mtese. Before the microtese were you given a % chance of success? And did they say what the issue was down to in the end? Did you think about waiting to be referred on the nhs so you didn’t have to fork out £6k? I really hope it went well for you@RubyStar22.

Also a general Q for everyone- our fertility clinic is a bit negative about us going to see Jonathan Ramsey and says to just wait for referral on nhs to a local urologist and save our money. Is it really recommend to go and see him?

@Appl3Pips sorry they asked you that ☹️ i have had people say similar to me. The worst is 'you need to get a move on and have kids' said as a joke.. that one really grinds my gears.

I think with Mr Ramsay it depends. He is very good and from what I researched on him he is literally one of the best urologists in the world. Because of this, many couples use him as a bit of a last resort. My experience of him is he is helpful but to make the most of the money it's really best to go to him having had all tests done so that he can really look at the full picture and give you advice there and then.

I think if I was in your shoes I would consider keeping the appointment as I know he is experienced at more complex cases of finding sperm so he may have a wider range of solutions for you to increase chances for an mtese such as putting your partner on medication first. Or I suppose another option could be to have the NHS appointment and go to him for a second opinion afterwards if you feel it's needed, as you may get a really good NHS urologist xx

@lemons44 ah yeah tell me about it, that one does sting too. I know people are completely naive to it and don’t mean it maliciously but it doesn’t stop it hurting.
Thanks for that 🙏 I really appreciate your input, I think we will go and see what he says, as like you say he is the top dog in the field! Ultimately having a baby is the most important thing in our life at the moment so we will do whatever we can. Xx

@Appl3Pips Sorry to say but your local NHS urologist won't have a clue about Azoospermia....you don't have to see Jonathan Ramsey though, you just need to see someone who offers microtese as only then you know they deal with Azoospermia....there are probably less then 10 urologists in the UK who offer the microtese...about 5 in London, 2 in Manchester, 1 in Wales, 1 in Cambridge and 1 in Southampton....they all pretty much the same as each other.

What type of Azoospermia has he got though? NOA or Obstructive? You will know by his FSH....if FSH is high then 99% it's NOA

@Appl3Pips i would stick with Mr Ramsey, he really is one of the best in his field. When my DP was referred to NHS urologist we were referred to 2 hospitals as the wait was soo long (one was 10 months the other nearly a year). Whilst we were waiting I researched the urologists at each hospital and none of them had a "special interest" in andrology or infertility. It made me feel like they wouldn't know how to treat NOA (or I wouldn't have the confidence in them). We decided to wait 6 months and if we hadn't heard by that point we would go private to see Mr Ramsey. I felt it was a step we needed to do to ensure we had done everything we possibly could. In the end Mr Ramsey arranged all the tests to confirm diagnosis and started DP on anastrozole. He didn't want to interfere with our NHS treatment and just wanted to get us in the best possible position before microTESE and IVF.

I liked Mr Ramsey but just found that he told us what we wanted to hear rather then the actual true reality of the success rates of NOA...also he is VERY expensive so if you see him please make sure you get your bloods (FSH, T levels repeated at least twice) and Ultrasound done elsewhere (any private clinic can do these) before seeing him as it will save you A LOT of money and time and you have something to go with. Guessing he will get you to do a y chromosome test as well so if you can get that done elsewhere before seeing him I'd recommend that too.

He is the only person in the UK to offer sperm mapping....again from what I've read elsewhere id advice against it. It's very expensive for something that doesn't actually collect any sperm, just maps it and most of the top urologists say it's a complete waste of time and money and causes more damage to the testicles then what is necessary.

I don't mean to be negative, just realist, but it helped massively for us to get our head around donor sperm and accepting that as a good option if microtese wasn't successful, mentally it helped us that we had an option in case the mtese was unsuccessful.....we spoke to Mr Ramsey and 3 other of the top urologists (1 in London, in Cambridge and 1 in Manchester) in the UK who dealt with Azoospermia and all gave us about a 30% chance of getting sperm based on how high the FSH was and the small size of the testicles (but remember that's 30% of finding just one single sperm and doesn't include if the sperm is usable or not) so it's odds upon odds and for the cost of the microtese for the little chance of success we decided donor was the best option for us and this week began IVF.

Again it depends if it is NOA or Obstructive....if Obstructive (low FSH) then a mixture of Clomid and HcG injections for 3-4 months has a good chance of success. See a good endocrinologist who can offer this.....if NOA (FSH will be high) then it's very rare for any medicine to work and microtese is the only option at this time (they are developing 3D sperm printing for Azoospermia in Australia which is in trials but at least 5 years away).

Wishing you all the best whatever you decide. It's one of the worst things we have been through when we found out but with time it gets easier. Good Luck!

Hi @donnie12 thanks for sharing that. This is all so difficult isn't it. Hope everyone is doing well. We have our appt in 2 weeks with dr Ramsay, will be the final check to see if the Anastrozole has helped or not.. if not then we have the MTesse booked in for mid May.. really trying not to think about it all but as the appt dates get closer it's hard not to think about it. Donor sperm isn't an option for us, so this procedure really feels like the be all end all for us.

@2022ttc Wishing you all the best for your appointment next week! Has your partner had any side effects from Anastrozole? Mine just had a rash on his feet but his T levels went up loads from it....any reason why donor sperm isnt for you as a potential back up option?

@donnie12 thank you so much, will keep you all posted on how it goes. Using donor sperm is just something my husband and I discussed and don't feel comfortable with. We are however happy to adopt as it's something we would have wanted to do even if we can / could have biological children. So that's always going to be an option for us, but for now our focus and efforts are on praying that this MTesse is successful..

As a side note, we had our first nhs appt with urology in January, and the follow up appt should have been in March but it was initially moved to July and now September! So nhs is pretty much out of the question now.

@donnie12 sorry you asked if my husband had any side effects apart from the fact that he's looking a lot more muscly and people keep asking if he's been working out!

Hi all.

I posted on here about 6 weeks ago when my husband had just had his diagnosis of NOA from Jonathan Ramsey.
Since then I have been following the advice on here and trying to take some time away from mumsnet and have been throwing myself into my job as a way of distraction.

Thank you for the info @donnie12 it is really useful to read all this to build a picture of what may lay ahead.

@2022ttc it sounds as though we are on the same timescale - we also have an appointment with Mr Ramsey in two weeks to see if the anastrozole and tamoxifen has worked. My husband is hopeful that it has but he would like us to accept it's not meant to be if it doesn't work out and doesn't want to consider other options. The whole thing is really overwhelming isn't it? Sending you love and thinking of you xxx

@sackofpotatoes123 can really empathise with how you're feeling, after our last appt in early Feb I completely switched off from this forum and my friends and family as I was really struggling to come to terms with what may not be.. I tried to focus on the positives in my life and work like you, but that's had its own struggles. I've got 3 members of my team out on maternity and paternity leave, all whilst my only days off are for appointments as we really can't afford to get away for a holiday because of how expensive these appts are!

My husband is similar to yours, he's very much it is what it is. In the early days of diagnosis he would have random days where he would say things like "he feels like he is holding me back", or that he would understand "if I decided to leave". How long has your husband been on the meds? We started on them in dec and had a 2 month check in Feb but it had made no difference whatsoever to the sperm count. Really really hoping that the results in 2 weeks say something different