Azoospermia support - Part 2

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@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

Just need to vent. I'm so upset and depressed. We were meant to be starting meds tomorrow for our first IVF round but I got Covid last week so had to postpone.

The clinic said they recommend waiting 3 months as it can affect the sperm and egg but obviously we're not using my husbands sperm! Some clinics also only say to wait 1 month or 4 weeks so I don't understand how they can all have different opinions. I literally had no symptoms and only tested as my husband said he felt unwell and ended up being positive.

We're going to push it back until next month so will end up having 8 weeks between testing negative and starting STIMS (long protocol). I can't put this off anymore. I'm loosing my mind and this is really affecting our relationship. I just need to feel that we are moving forward!

Another 4 weeks to wait until starting the down reg now. It will soon be a year since we went to the doctors and I don't feel that we've made any progress. Really struggling with life today. Sorry for the rant.

@jaspercats so sorry to hear that and can understand how upsetting it must be. Am no where near that stage so can't offer much more advice but just want to let you know I am here if you want to talk x

Sorry to hear this @jaspercats 😞. This whole process is just shit. As if we don't have enough to deal with!

Hopefully the next month goes quickly for you. Try to plan some nice things for you and your partner to do so you have some nice things to look forward to ❤️.

Sending you lots of hugs xx

@jaspercats sorry to hear this :( this process is just so unpredictable.

Update from us: we had MTESE done and unfortunately they didnt find any sperm. Not the best news but I am glad that we are feeling "better" than expected as we have had months to process our issue and , even if we had still a bit of hope, we already knew most likely this would be the outcome...

We had already discussed option B before surgery and we are both keen on going via donor route. We did MTESE via NHS so they have told us we need to notify the NHS fertility clinic our decision of using donor sperm and they will let us know next steps to follow. If anyone has gone through the same process any advice would be really appreciated!🙏 Many thanks in advance!

Sorry to hear they didn't find sperm @Blue234 . Good that you and your partner already sort of processed this outcome and decided on your plan B. This is exactly what my husband and I are doing. Our MTese is in a few weeks 🤞.

It's just a different path to parenthood going down the donor route. I guess now at least you sort of have closure on that part of the journey. That's my way of thinking anyway.

If you scroll back and look at some of the comments on the two previous pages, @jaspercats and @Disco24 shared their experiences going down the donor route which was really useful.

As you know NHS timelines are long so I'd push them to let you know the sperm banks they work with so you can start your own research in the meantime.

Good luck and let us know how you get on. Sending lots of love x

So sorry to hear this @Blue234 that must be really hard to process. it's good to hear you have Plan B sorted though and I get what you mean about feeling better than you thought. The anticipation in itself is so intense isn't it?

We had an appointment with Mr Ramsey last week which confirmed that the medication hasn't worked. We've ended up booking an FNA in with him.

Has anyone on here had an FNA prior to the MTese? Also, for those who had the MTese on the NHS, are you London based? I didn't even know this was a possibility.

Hope you are doing ok @2022ttc . Sorry I haven't reached out in a while. My only way of coping was to put this fertility journey in a box whilst nothing was happening on our end. How are you both getting on? xx

@Blue234 sorry to hear that the MTESE was unsuccessful but so pleased to hear that you have a plan and are coping with it all so well. I hope the next steps go smoothly for you.

@sackofpotatoes123 I am ok, I too have put all of this at the back of my mind as I feel so helpless. Have had a busy summer so managed to keep myself distracted but we have an appt with Dr R next week to discuss what our plan is. To recap you, we cancelled our MTESE scheduled for May in April as my husband was not ready. I took the step to book an appt as I need to know from him either way whether or not we have a chance of having our own biological child or whether we need to explore other options.

My husband wants the FNA as he feels its less invasive.. I would much rather he have the MTESE. @sackofpotatoes123 do you have a date booked in? Also, did Dr R recommend the FNA mapping or is this something you asked for?

Thanks

@2022ttc so glad to hear that you have been able to distract yourself. It can become all consuming if we let it, can't it?

So essential Dr Ramsey believes that if we do find anything then it probably won't freeze too well and wants us to do a synchronised egg collection. He said it is too costly and devastating to set all of that up and not find sperm. So he feels that an MTese with donor sperm as a back up or an FNA ahead of an MTese are our two options. It was all suggested by him.

He described the FNA not as a sperm retrieval so can't be used as a substitute but will be able to tell us if there is sperm and exactly where it is so that we can decide whether to proceed with an MTese. He also said that if we do then go ahead with the MTese then there will be a direct route to find sperm which reduces the risk of long term further damage to T levels. My husband feels much better with that idea and we managed to get a cancellation for next week. He did have dates in September and October so hopefully it shouldn't be too long if that is the route you choose to go down.

It's such a tough time isn't it. Obviously I'm praying it will work but there is a part of us that just really wants to know if there is anything there so we can close the chapter either way.
Sending love xx happy to answer any questions as I learn xx

@StarJasmine93 thanks a lot! I wish you all the best with MTESE. Keeping fingers crossed for you.

Everyone is different, but I think for us it was key that we discuss the plan B in advance. We were very keen on trying all what we could but we knew from the beginning the success rate on NOA were really low...But I cant lie, i was really worried on how we would feel if we got the bad news...Specially how my partner would be. However mentally he seems ok.

Obviously Option B is no one's preferred option but at least there is an option to move forward and I am quite keen to push NHS asap. I am 34 at the moment and my AMH is normal but slightly lower than average for my age, and this is what worries me a bit atm. So lets hope we get soon some news from NHS on next steps.

@jaspercats @Disco24 I will check your posts and might reach out to you privately at some point if you dont mind!

@sackofpotatoes123 thanks a lot! the mental work before surgery has been quite intense yes...Being honest I even feel bad of not feeling devastated at the moment, while some members of our families are ...But for us its been months of crying, thinking, researching and discussing what we wanted to do. So either we have accepted it or we are currently in shock. I really hope its the first one.

On a second note, I am sorry to hear that the medication didn't work. All the best with the FNA. Keeping fingers crossed for you.

@2022ttc thanks a lot for your kind words!🤗

Oh @jaspercats im sorry it was postponed! The waves just keep coming sometimes, you’re well within your right to vent!

@Blue234 I’m sorry they didn’t find anything but it sounds like you’re both coping well, I know you’d said in advance you’d discussed option B so I think like us you’d already started grieving parts of it before. It’s an awful process but I’m glad doing so has protected you a little bit. Please reach out with any questions once you’ve caught up as you say. We’re doing donor through the NHS, our donor sperm arrived at UCLH this week! We have our counselling next week, and my hycosy the end of September then we wait to kick it all off so happy to go through those steps with you.

Really sorry to hear this @jaspercats there are so many hurdles and delays with this process, it's really hard to get through it all.
Also very sorry to hear about the mtese results @Blue234 . It's great to already be thinking of a plan B, it took us a while to agree on a plan B but I'm glad we know where we stand if it doesn't work for us.

@sackofpotatoes123 just to answer your question, we are having mtese via the NHS. We aren't based in London, we're going to Cambridge for this.

I'm terrified of next steps now it's all coming up so soon after a very long wait. I have a hysteroscopy next week and an AMH blood test. I'm so scared of the results of this as it's never been tested and my fsh was quite high in February this year. I'm also 37. OH is then having an SA next week to see if 3 months of clomid has had any effect, and then an mtese booked in for 2 weeks after that.
I feel so anxious about all the results and what it may mean for us.

Thank you all for your kind words. I feel a bit better than last week and am just going to try and keep myself busy for the next month. It's just such a frustrating journey. I'm usually a massive planner, even having our holidays planned for 2 years in advance and have diaries to keep track of everything so I'm finding this lack of control really hard. I need to not be such a control freak!

@Blue234 I'm sorry your mTese outcome wasn't better. It bloody sucks, these cards we've been dealt. But donor is still a good option and although it's hard at the beginning, it soon gets easier and then you don't think of that bit at all anymore. We are both concentrating on the next bit now and in some way just feel like all the other couples going through IVF now and glad that there was another option to have a family. Of course, reach out whenever you're ready and I'll do my best to help.

@Disco24 exciting that your sperm has arrived!

@jaspercats I’m glad you’re feeling a bit better this week. I can really resonate with being a planner and that making it so much harder! I’m trying to control short terms plans to help and give me some order, but I have friends discussing holidays next year and I just don’t know what to do! Don’t want to put life on hold either.

Quick question on having a HyCoSy. Has anyone else had one? They say not to have intercourse after your period and before the procedure, but I’m going to be on my honeymoon 😅. I assume this is so you don’t get pregnant but there is zero chance of that, so I assume I don’t need to follow that rule. Anyone know of any other reason they state that?

thank youuuu x

3 months on clomid and my partner now has around 100 sperm in his sample! Not sure if it's the clomid or anything else he's been doing, including acupuncture etc. They are not mobile though and so we're proceeding with his mtese next week but I'm taking this as a sign of hope for sperm being found during the mtese.
My hysteroscopy was also fine. Waiting for results of my AMH test now and have our next clinic appointment in October to agree a treatment plan for me.
Taking the small wins as we go along 😊

@Magix86 that's fantastic news!!

My hubby actually went in to give a sample today as we are two weeks away from MTese and he had 3 months of anastrozole but haven't heard any results yet. Expecting the same as usual though...

@Disco24 I also had a HyCoSy and had to abide by the rules of no sex 😅. I can't be too sure if there are any other reasons as to why you don't have sex aside from falling pregnant. Sorry that's not much help!

@Magix86 , thats amazing! Really positive, hopefully thats a good indication of how the MTESE will go :)

@Disco24 , I had the HyCoSy, and also was asked to follow the 'rules' irrespective of our situation.. pregnancy is the only reason I can think of. They do a pregnancy test before the procedure anyway.. I asked the nurses if they had come across anyone who had a positive pregnancy test show up when they turn up for the procedure but they said nope!

@StarJasmine93 I was honestly thrilled. I wasn't expecting an update so soon but they apparently called him while he was on the drive back home!
Really hoping you have positive news. It sounds like we are on the exact same timings!! Our mtese is in 2 weeks also (my previous message was wrong)

@Magix86 yes previously they have been back in touch really quickly so not sure why we haven't heard anything yet. Will chase tomorrow lunch time if we haven't heard anything.

Ah! Hope the MTese goes well for you!! You've had some positive indicators at least 😊

Yayyy @Magix86 that’s great news! So happy you got a positive step.

Thank you @2022ttc and @StarJasmine93 for sharing. In the grand scheme of things it’s nothing, and worth following the rules but thought it was worth checking nonetheless.

Good luck too @StarJasmine93 keep us updated!

Hi all, I have been absent for a while as I needed a break from everything. Delighted to read the good news stories and also very sorry to hear of the sad news/bumps in the road for others, I hope everyone is staying positive.

To summarise our previous journey my partner has obstructive azoospermia following surgery as a child. We had an NHS PESA aspiration 2 years ago and found lots of sperm. Following this 3 rounds of ICSI failed all with a similar pattern, 12 eggs, 50% fertilisation 2 C grade day 5 embryos each time (6 failed transfers)

We sought Ramsay's guidance at the start of this year to understand what to do next, we both did microbiome tests and treatment and are currently doing a new ICSI cycle at the Lister timed with a fresh sperm collection. We managed to get 18 eggs (although I do now have mild OHSS) and an amazing 15 have fertilised, a huge improvement on our previous cycles. Ramsay also conducted surgery at the same time to bypass the obstruction which he told us was successful (obviously pending later tests)

Next steps are wait to see what day 3 and 5 bring, all being well we will be doing PGT testing for the first time and we plan to freeze all pending results and some recovery time, possibly we might look at further tests for me to see if there are reasons for RIF, what tests have you guys looked at for this if any?

Hi @Bran90 , hope you are well. I hope that the coming weeks/months bring you some good news.

@sackofpotatoes123 - we went to see dr ramsay today and have booked in our FNA Mapping. Feels like a relief having that booked in and hope it means we are one step closer to getting some closure and certainty. How are you? Your FNA mapping date isn't far off is it?

Hi everyone,

I have been looking at the chats for a while and finally found the courage to post here. So sorry for everyone in here but happy to find you <3

DH and I have been ttc for ~2 years now. After 6 months of ttc, we decided to do some prelim tests privately to see if anything was wrong. DH SA came back with low count and low motility (200k sp/ml and 8% motility). We were devastated but decided to get ourselves seen by a NHS fertility clinic, which was at the Homerton hospital in London.

We managed to get a few tests done there which all came back normal according to the clinic:

• Genetics (y-deletion and karyotype): No issue
• LH: 2.4 U/L and FSH: 2.8 U/L (apparently in the normal range but on the low end)
• Testosterone: 13.9 nmol/L
• Testicular ultrasound: No varicocele, no sign of obstruction, only calcification and cysts in one epididymis

To our bad luck, the Homerton Clinic got their license suspended and after a few months of wait, we were transferred to Kings Fertility Clinic where we did some repeat tests including a Semen Analysis which came back with azoospermia... We were shocked as we thought we at least some had sperm to work with, but its no longer the case. Also very annoyed that NHS didn't suggest freezing sperm as back-up.

Kings now told us we have to see an Andrologist to evaluate next steps, which will be most likely SSR, but they have no idea on timeline of appointment except that it would be in 2025... They said Andro needs to opine before assessing NHS eligibility.
We are thinking of seeing Dr. Ramsay for an expert opinion and potentially get the SSR done with him to speed things up but we have sooooo many questions and we are struggling to get answers.

• We have no idea if the Azoospermia is NOA or OA. Thinking NOA as US didn't show any obstruction and DH has very good volume, but all hormones and genetics are fine.... Anyone had similar results to DH?
• We also have no idea of how long it could take to get to IVF with NHS.. I assume it could be nearly a year from now given that we need to get seen by Andro, then agree on next steps, do SSR (potentially multiple), if successful SSR apply for IVF funded, then do IVF. There are so many roadblocks and unknown and sounds so scary
• We also don't know if we do the SSR privately, does it prevent us from benefiting from NHS funded IVF cycles? Anyone has done this?

Sorry for the long message, but I don't know where else to go and would appreciate any tips / guidance.

Hey @2022ttc so pleased to hear you have got it booked in. That is a big step. My husband had his yesterday. I remember you saying yours is really nervous about procedures and mine was too. He got himself really worked up beforehand but it really was fine. He has the op done and was through recovery and back in his room in an hour and a half and we were out a couple of hours later. He hasn't been too sore today either and we've been out and about as normal so honestly please take some comfort in it not being too bad. Mr Ramsey was also fantastic. He met us at the door and sat on the bed chatting to us on a level. I always feel really nervous around him like he is a celebrity 🤣
Just remember to take some food for yourself as there wasn't anywhere around to buy anything. Having not really used a private hospital before, I was clearly unprepared for the lack of cafe or vending machine 😉

Just the wait now! It's wierd because I was starting to believe that I had really grieved and processed it and was ready to accept the outcome and now I am just petrified. We can't really agree on donor thing and I don't think it's a topic that can be forced so a negative outcome of this will be the end of the road for us. How are you both feeling about it? xx

Hey @happyface19 so sorry to read your post. It sounds like a really frustratingly drawn out journey to this point. I'm sure people will have better advice than me but regarding Mr Ramsey. I have read that people seem to book onto him for advice alongside NHS referrals etc and he doesn't have to manage the whole situation. It sounds like you've been on a really stressful journey to get to this stage. Sending you love xx

@happyface19 His FSH and T levels are pretty normal which suggests he has OA not NOA.

Has he ever taken TRT or steroids or anything?

As he has low FSH ( most likely OA) then hormonal treatments have a lot more success then if his FSH was high (almost zero chance of success with hormone treatment if NOA)........if you go on the male reddit forum then HcG with Clomid has proved to be very successful treatment for low FSH.

I know Ramsey is lauded (rightly) on here.....BUT I personally don't think he is that clued up on the latest hormonal treatments. Channa Jayasena actually learned mtese alongside Ramsey but he is more of an endocrinologist guy and is much more versed on this subject in terms of Hormonal Treatment.... certainly an option to take rather then going straight to an Mtese (which is expensive).

https://www.imperialreproductiveendocrinology.com/

Thank you for the kind words.
@donnie12 , no he has never been on TRT / steroids. The ultrasound didn’t show any obstruction, can it still be OA instead of NOA? I understand the changes of finding sperm are higher with OA.
I will defo research further about Channa Jeyasana and more broadly about hormone treatment, thanks.