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

@WhiskeyInTheJar33 fingers crossed for a Friday egg collection for you. It can get uncomfortable towards the end. Will you be doing a freeze all?

Not too much to update on from my end, we are mainly recovering from this last round. My first two rounds I didn't really have any hormonal side effects but this round my hormones were really crazy and I felt really anxious and depressed. My period has started now so I'm hoping I finally start to feel back to normal as my hormones level out. Poor DH has taken longer to recover too as this is obviously his second mtese. We have a consultation next week to discuss next steps.

Xx

@WhiskeyInTheJar33 Wow, that's so exciting it'll be nice to have a transfer buddy ( fingers crossed of course). I'm on gonal f 225 and then from day 5 they added in ganirelix 0.25mg on top of. Last week I had no real symptoms but over the last few days I've had a bit of a headache, my jeans don't fit- although I don't really feel bloated, just look it! What about you?

@Magix86 I think the thign that I find difficult about this whole journey is the not knowing where you stand until you have appointments. I don't know about you, but I'm a very goal orientated person so the unknown feels scary and anxiety producing. I hope you and your other half's appointments today go well and you get the answers you are looking for!

@lemons44 Thank you very much! So far so good, hope you are well as well, where are you up to with your journey now?

@lemons44 interesting how it's affected you differently this time round! Hopefully you'll start feeling more yourself soon and hope your consultation goes well next week.

My clinic have said any more than 20 follicles will be a freeze all, had 18 at baseline and 22 yesterday so looking more likely now.

@pigbabe not sure if I'll be doing a transfer. I'm looking at doing a freeze all due to risk of OHSS. We are on exactly the same stims and dosage too! I'm really uncomfortable today, struggling to sit upright! I've had a range of symptoms - headache, fatigue, insomnia, bloating, constipation and nausea. Hoping tomorrow is the last scan and injection!

@WhiskeyInTheJar33 ahhh I get understand, I don't think I'm high risk of OHSS so if they say it's okay will go for a fresh transfer. Wow you really are having all the symptoms, poor you! Good luck for the scan tomorrow, let me know how you get on!

@lemons44 yes I remember your messages too! I see you also took a break from here for a while. Its so lovely to see you have 2 blasts ready for FET 🥰
Definitely good advice to write everything down. Managed to tick off the bloods at least lol....unfortunately we went to the urology appointment today to be told they'd cancelled it because of the strike 😔 so now we wait again for another slot!! I'm so mad.

@WhiskeyInTheJar33 how lucky the CCG changed criteria at the right time for you!! I think if we have to wait too long we might find out if there are parts to this process we could fund privately - like urology perhaps, and still have the ICSI via the NHS.
I'm sorry to see about all your symptoms - finger's crossed for your scan tomorrow!

@pigbabe thank you. Yes it's exactly how I feel!! I'm so grateful for this thread as it really helps understand all the processes and helps to be in touch with others that get what your going through.

@WhiskeyInTheJar33 How was it today? They've scheduled me for Friday egg collection with trigger tonight!

@pigbabe me too!!! It feels good to be doing one last injection!!!

@Magix86 thank you. Gosh I can't believe that!! What a mess up! You would think they could have let you know more in advance. Did you manage to get another slot? Hopefully you don't have to wait too long.

@WhiskeyInTheJar33 @pigbabe hope your triggers went ok.

xx

@lemons44 they said we needed to call to rearrange, have given my partner all the numbers. Hoping it won't be long, they'd already cancelled this appointment once prior to this one too!
I've been reading the referral info online for our ivf and see we might have a choice of where to go. Our doctor has suggested bourn hall in Cambridge, but CRGH and also Guys are listed as available clinics. I've seen you've had a good experience with CRGH! I don't really know how we'd choose a clinic when we haven't had experience with any yet, so perhaps we just go with what's been suggested and then move if we have to...

@lemons44 thank you so much for your kind wishes. We are at 20 weeks now and we still can't believe our luck. We had the same results, a day 5 (did fresh transfer as OHSS isn't a thing when you have low AMH 🤣) and a day 6 frozen from our cycle so I have got everything crossed that this will be the cycle for you!
I hope you feel better soon and I am so glad Dr Pippa looked after you. She was basically one of the few people that were hopeful of our chances and at the time that meant so much to us. She suggested my husband to fertility preservation so we have 10 vials of sperm keeping our frostie company.
I have everything crossed for your next steps xx
@WhiskeyInTheJar33 and @pigbabe massive good luck for tomorrow and hope you get lots of lovely eggs. I think a Friday egg collection is nice as you have the weekend to rest and recooperate.
@Magix86 we were told that CRGH or Kings have the best MFI embryology departments (better technology and techniques etc). We went to Kings for our cycle (had a minor tussle with the GP practice manager who gave in when I explained why we needed a Kings referral as MFI specialist clinics have better outcomes for ourcircumstances etc). They didn't have an NHS waiting list so we started IVF asap as got the urology side done privately in advance. Good luck with whichever clinic you choose.

Hi everyone! Hope you are all doing ok! (As can be) I’ve finally managed to pluck up the courage to post in here thanks to @WhiskeyInTheJar33
for letting me know about this group, so firstly thank you for that ☺️

A bit of background:
My husband and I (both 33) have been trying to conceive since 2020. I’ve had all tests and everything is fine and all womanly aspects in line with my age etc. My husband unfortunately had 0 sperm in all SA’s.

All his blood tests and scans showed no blockages or reasons as to why! The only thing was his thyroid was slightly high and been on medication for approx 8 months and that’s all fine now. He is also type 1 diabetic.
Now we’re in year 4 of trying and he finally had PESA and TESE in Jan, unfortunately they found no sperm at all!

We’ve now been referred to have a microtese at the listed hospital in Chelsea next week! We only had the consultation with the specialist yesterday morning! He said in his words.. I’m confident I can find sperm, the success rates are higher than pesa/tese BUT.. we might not find sperm! It’s always that positivity speal followed by that realistic devastating blow.

Does anyone have any success stories with this or advice after failed PESA/TESE and then success with microtese? He's been on clomid for 5 weeks.

I am trying to remain positive but after 4 years (last 1 and 1/2 years on the private route, we’ve already spent so much ££££’s on everything) I am really struggling with it all and all of my friends have all babies. My sister even had 2 babies in the time I’ve been trying! I’m also finding that I’m now being excluded from chats and events too!

The difficult thing is that my husband doesn’t want anyone to know about this, so I guess everyone is somewhat tiptoeing around me/us because we were vocal about starting trying 4 years ago and people have obviously put 2 & 2 together and must know something is not right! (I wish we hadn't mentioned it now) And one friend is messaging me like every week asking how we’re getting on?! How do you all cope with this?

Sorry long post! Believe it or not, I’ve tried to reduce it about 10 times! sending lots of love to you all! it's nice to not feel so alone, but I'm incredibly sad to find us all here! :(

Hello, little update form our egg collection this morning, it was honestly not bad at all, i chatted some absolute rubbish after they put the sedation in- felt like I had drank half a bottle wine in under ten minutes and then i fell straight asleep. Afterwards no real pain, just a bit of period like cramps! They thought they would get about 8 eggs based on the ultrasound on Wednesday, they ended up getting 17 (!)- 14 mature, so now just a waiting game on how many fertilise. @WhiskeyInTheJar33 Hope yours went well today!

@RubyStar22 Hiya, welcome and well done for the brave post. I can only imagine how hard it must be for you having not told any of your friends/family but them asking you for updates. We also had multiple SA with 0 sperm- we were told that our only hope would be microtese due to NOA ,but with a success rate of 4% for a live birth we were worried about getting hopes up and being let down so went straight for donor sperm. I can't give you advice or raise your hopes about that procedure unfortunately, but I can say, that if things pan out that it is unsuccessful that there is light and other options. It wasn't an easy decision to make to go directly to donor sperm, but actually, now it feels just like a little part of our story and has become a new normal. I've mentioned this in earlier posts, but the one thing that really helped us to get to grips with using donor sperm was a book called "Three makes baby" by Jana Rupnow. Something that I've really realised is that prior to telling people we worried about judgement and felt slightly ashamed about our situation. However once my partner told a few people we were absolutely shocked at the amount of people we knew who had done/doing IVF, or were going through male factor infertility. I think it feels very lonely at first, but there are lots of us out there and you have the support of our little group.

@Magix86 have a little look online at success rates for clinics. Due to the natures of what we are all going through (aka surgically extracted sperm) I would also be looking at the embryology descriptions on their websites and what technology and techniques they use. For our first two cycles we actually used Bourn Hall but the one in Wickford. Honestly they were really good in some areas! However there was also quite a few negatives for us and I wouldn't go back. I believe the Cambridge branch has really good reviews though, and I believe they have urology connected to the Cambridge branch so I think they can also do sperm extraction (they couldn't in my branch as my branch was quite small). I am really happy with CRGH so far.

@TheFanciestPants thank you so much 💗 20 weeks my goodness 😱 where has the time gone! I hope you're feeling ok and enjoying every second. So happy for you xx

So sorry you find yourself here @RubyStar22 ☹️ I believe @Nats140 partner has unsuccessful Tese followed by a successful micro tese.
That's amazing they are getting you in so quickly! My DH was the same about not wanting people to know. However eventually he did start to feel more comfortable telling people. I think a part of that was being on the knackered knackers WhatsApp group (I know some other ladies on here have partners on it too). It can be quiet at times but I know my husband has spoken to the men on there about donor sperm and just the process and feelings of having azoospermia and I think it's helped him feel less alone and not ashamed. He also listens to the knackered knackers podcast which has helped too. When my husband did open up to some work friends one of them had also had IVF! So I think he was surprised that actually there's other couples struggling too.

That must be tough your friend asking how you were getting on. I had a similar situation with a friend who knew we were trying. In the end I made an excuse and said we had paused TTC. I got away with it as I'd had a bereavement at the time and so said I wasn't in the right head space. Perhaps there's an excuse you can give to imply it's not something you're focussing on at the minute such as wanting to save some money or consider looking for a new job etc. so she backs off a bit. It is hard though ☹️ it makes me feel like I'm falling behind when I see all my friends with their families.

Never apologise for long posts! I am the queen of long posts 👑

@pigbabe 14 mature is AMAZING. Keeping everything crossed for good news today xx

@RubyStar22 my husband had a Tese procedure at our clinic in September last year and they found very few sperm and not enough for ICSI. We were then referred to Dr Kalsi who said that the next step was the Microtese. It was a huge decision to make as it cost £6 k. We decided to give it a shot as it our last chance.

My husband had the microtese in December last year and they manged to find 5 vials of sperm. This was completed at the Lister hospital in Chelsea. We had it shipped to our clinic and starting IVF in July. We have felt really stressed and needed a break. We also need to get money together as ICSI for 2 rounds Will cost £13k. We were so nervous with his microtese and know how fortunate we are. Its one step closer.
My husband took clomid and proxseeed for 6 weeks prior to the Microtese. Any questions, feel free to ask

@RubyStar22 glad you found the courage to post. It certainly can feel lonely at times and this group as been a godsend!

@TheFanciestPants can't believe you are 20 weeks now!!! Hope you're doing ok.

@pigbabe @lemons44 egg collection yesterday didn't for as well as expected in the sense I was really poorly afterwards and had to be kept in for several hours! DPs frozen mTESE sperm also wasn't twitching as it had done before freezing so they couldn't tell it was still alive. They added something to it to try and "wake" it up and said they would keep searching and thawing more vials until they found enough. DP was soo down yesterday as I don't think he realised that would be a thing.

We got the call this morning. 16 eggs collected, 14 mature and 8 fertilised!!! Such a relief. Now to hoping they make it to day 5!!!

@pigbabe@WhiskeyInTheJar33 so happy for you both your collections were successful! 💖 Although @WhiskeyInTheJar33 your experience sounds less than ideal, hope you’re resting up today and having lots of self care.

Keep us updated on your next steps!

I’ve just had confirmation I’m officially on the NHS waiting list for my referral to UCLH gynaecology. It’s estimating an appointment in June. Does anyone know what that first appointment is? Just as a reminder, my husband has NOA Y deletion so we’ll be using donor. I’ve had my ultrasound and hormone tests, but no AMH checks etc.

Any knowledge of what comes next would be wonderful!

@Disco24 how are you feeling about the next steps?

So sorry you had a bad egg collection experience @WhiskeyInTheJar33 and hope you're feeling better now. Keeping everything crossed for you and @pigbabe xx

Thanks for checking in @lemons44 💖 I’m really happy we’re at the next step, and I’ve read after this appointment funding can be as quick as 6 weeks so just really hoping by the end of the year something has happened.

It feels so far, but then in the next breath it’s like oh we’re doing this 😅

Still feels strange looking at donor sites, but I’m unsure that will ever feel normal I guess. We went to a webinar last week from PathtoParenthood which definitely helped us think through some donor bits.

How are you? X

Hey there,

I have been quite for a while but watching all your updates :)

@WhiskeyInTheJar33 so happy for your great news!

@Disco24 glad to hear you are making progress with NHS.

A bit of an update from our side, we just got the full results and as expected it was confirmed that we have NOA. We are feeling somehow relieved that Dr Pippa confirmed that the genetic tests came back normal, so there is still some hope for us with MTESE.

We are not very sure whether we are going to go private or wait for NHS for the MTESE. Good news is that our referral to urologist and gynecologist is currently under review and we should hear something by end of April. So let's see how things move on from our side.

Thank you so much for the recommendation @lemons44 we saw Dr Pippa today and her and Cecil made us both feel so at ease and restored my faith that there are doctors out there who do care 🥰 we actually had our NHS appointment come through today aswell saying we have an appointment end of April so we will see what happens at that and then take it from there as to whether we go nhs or private. I definately recommend Dr Pippa to anyone though, particularly if you have klinefelter's

@Disco24 @Blue234 @lemons44 thank you. Sorry haven't responded sooner. I've been quite unwell with OHSS but starting to feel slightly better now!
Just had an update from the embryologist out of the 8 fertilised, 1 very good quality blast was frozen on day 5. The other 7 were given an extra day to see if they improved and have a second frozen. The other 6 they didn't think were good enough quality to freeze. Once I've recovered from OHSS I'll be doing a FET but pleased we have 2 chances 😊

@Disco24 and @Blue234 glad you're both starting to progress now and seem to have your next steps in place.

@pigbabe been thinking about you. Hope you're well and doing ok?

@lemons44 thanks for the advice re. CRGH and Bourn hall. Also @TheFanciestPants - congratulations, really happy to hear of your succes.

Unfortunately I've just called the fertility clinic as I hadn't heard anything. We were told my fsh needed to be below 9 for a referral for ivf. Just been told its 9.2. It was 6 just a year ago and we've been waiting all this time just because the criteria said my partner needed to be with a local gp for 1 year.
Feeling completely devastated that we've wasted a whole year for nothing 😭
Now we will have to go privately I guess, but we could have started this so much sooner.

Sorry for the delay in replying. @lemons44 this was exactly our thought process. We would rather than a donor child (who would still be my husbands child) than no child at all and I'm not sure how well we would have coped with all the unknowns and waiting if we went ahead with the Mtese for such a low chance of success. My husband said if he had obstructive then he definitely would have done the SSR but that just wasn't our path unfortunately. We definitely feel that we've made the right decision and are looking forward to starting the IVF process soon. How have you been doing? Are you doing another round soon?

@WhiskeyInTheJar33 and @pigbabe It's been so nice to read your messages about your stims and egg collection. How funny that you were doing it on the same day?! Sounds really posititive and @whiskey you now have 2 good chances to settle into over the summer. You must be pleased. @pigbabe I hope you're doing well too. I'm definitely going to read that book that you mentioned for donor. We feel so much clearer now that we've made the decision to go with donor and are looking forward to starting IVF soon.