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

Thank you so much @TheFanciestPants and also.... I feel so so late to this news but huge congrats! i haven't been checking any of the messages and just scrolled back to see how things had been for you and saw your BFP! That's such amazing news and gives me hope 💗💗 how are you doing?
Thank you for suggesting CRGH by the way all those months ago. I am very glad we changed.
Dr Pippa really is lovely isn't she? As my DH was coming round from his tese I was in a separate bay on my own, having had my eggs collected and feeling all sorts of hormonal. She came in to see how I was and she was like 'how are you?' and I just said with a really wobbly voice 'a BiT eMoTiOnaL' and she gave me a massive hug 🥹🤣 she's great. Xx

Thanks @WhiskeyInTheJar33 and great to hear you have started ICSI. Totally understand how it's worrying at every stage. I've been the same and I doubt my worrying will stop for a good while yet. Try and keep distracted where you can, lots of good series and anything else that distracts you. I spent about £50 downloading America's Next Top model series on amazon prime 🙈🙈 honestly I binged it so much but it was a distraction at least.
Xx

Thanks all. @lemo

Sorry about the previous msg! I now can't seem to figure out how to delete it! @lemons44 I'm pleased you are having a more positive journey with CRGH. Do you mind me asking if it's a private clinic and did you just book a consultation with Dr Pippa initially? I read Dr Pippa might be a good person to see regarding the klinefelters but I'm just concerned for mine and my husbands mental health if we are told we need all investigations again before any consultations. We have been round and round in circles for the last 2 years just to get this far and a diagnosis and I just want someone who knows what they are talking about to discuss our options

Thanks @Sammysquidge and I'm so sorry for your news.

CRGH is a private clinic but Dr Pippa works independently and it's possible to book consultations with her. Her PA is a really nice man called Cecil and his email is [email protected]

If you have already been referred to Guys could it be worth pestering them a bit to see if you can get an appointment earlier from a cancellation?

I totally understand you wanting to see somebody in the meantime. I definitely don't think Dr Pippa would want you to redo any tests if you have them already. She was very mindful with us that we weren't made of money and she's recommend NHS routes where possible.

Sorry that you're having such a hard time ☹️ xx

Thank you so much @lemons44 thats really helpful. I emailed Cecil and he got straight back to me with the response I've been looking for so I really appreciate your help :) xx

Hi everyone, it's been a while! Hope everyone is doing OK. Welcome to the new members, sorry you find yourself here. It's not a club you want to be part of but the women in this group are so supportive so feel free to ask anything. The beginning bit of this process is horrendous and I know how it feels to be crying every day however it does get a bit easier with time. I've been listening to the BFN podcast and they've been discussing the different phases of grief and it completely makes sense to me as this is definitely what I've been though. Give yourself a break while you go through the worst of it. We found out back in November and it was one of the worst times of our life. I also had a lot of other things to contend with at the time (some of you may remember my dad having a heart attack and my cat being unwell) but I can say that I am now feeling more positive and I'm hoping this will continue.

A bit of an update from me. My husbands genetic tests came back normal and his US showed no obstructions, although his volume was slightly on the small side. This and his hormone levels confirmed unexplained NOA. We had our appointment with Dr Ramsay last week and he was really nice. He explained everything and confirmed what we were already thinking. He said for NOA the chance of finding sperm is 40 - 45% then if you're in that lucky group the chance of having a live pregnancy is 10%. As an overall percentage that gives 4 - 10% chance of success. He also highly recommended the FNA mapping to prevent unnecessary mTESE procedures for the unlucky 60% which in turn would prevent them from being left with the negative side effects from the procedure such as low tstosterone for no reason. On top of this he said the best chance for success would be to have a synchronised fresh mTESE and egg collection. However to have all of this done it would have to be private and all in all we wouldn't have much left from £20,000! And that's just for the first round......

We did consider whether to go down the NHS route with Dr Pippa however we just can't get past the success rates (that's the scientist in me coming out!) and we're afraid that if we spend the next 1 / 2 years trying to make it work via him and it doesn't work, we may have spent a lot of money before we even get to the donor stage and we may feel so burn out and broken that this may actually jeopardise our chance of having a child in the end. Plus we feel ready to move on now and want to start a family no matter what.

So after all of this we have decided to go with donor sperm. Today we went back to the fertility clinic to fill out the referral forms and honestly we feel like a weight has been lifted! We obviously feel very sad that this is the end of the road for my husbands chance however we are trying to look at it in a different way and that this the beginning of a road hopefully to parenthood. I've had all my tests done (not a fan of the HSG!) And we have started looking at donors and there are some that sound quite similar to my husband. We've even had a few laughs during the process. I know this isn't the road that everyone feels comfortable with and for some it may take longer to accept however I hope that my thought process may help someone reading this incase you are struggling. If you ever want to talk, just ask!

@2022ttc I'm really sorry you're having such a bad time. This road is so shit.

@lemons44 so exciting you have 2 blasts ready for FET! You have waited so long to get your happy ending, I really hope this is it.

@pigbabe your thought process seems quite similar to ours. I'm looking forward to reading more about your journey with donor. Are you going straight for IVF? I may give the 3 rounds of IUI a go on the NHS to begin with.

@Disco24 my husband is also in the knackered knackers whatsapp group! I think by this point all of our partners have joined the group - maybe we need a female version for all of us? Can anyone think of a catchy name?! On a serious note, my husband says the advice and support he gets from that group is amazing and has really helped him come to terms with donor as everyone who has a donor child in the group seems so happy and content

Sorry that was super long!

Hi all,

Dr Ramsay confirmed he thinks my partner has an obstruction issue from his genetic/hormonal results and medical history etc so we’ve booked in surgery for him for early April. He’s given us a 60% chance for success so keeping everything crossed.

If we are one of the lucky ones, we’re starting to think about next steps. What did everyone else’s journeys look like? Any recommendations on going private vs NHS? Any clinic recommendations? I’d of course love to use the NHS but anxious about waiting times and we’ve had such a bad experience with them on this journey so far. When I called the other day to try and get the referral process started, they were trying to tell me we’d need to wait for him to do another SA 4-6 weeks after the surgery.

Wishing you all well on your journeys. Also interesting to hear about those of you going down the donor routes as of course we’re also having to think about what happens if the surgery doesn’t go our way.

X

@jaspercats I got a really warm fuzzy feeling for you when reading your update. I'm so glad you both have moved onto this exciting next step. I totally understand how it must also feel sad at the same time though. Regarding what you said about looking at it in a different way, it reminded me of something I once read when looking into adoption that said you shouldn’t look at it as an adopted child or your own child, but rather an adopted child or no child. I think to some extend this applies to thinking about donor sperm. I guess it's accepting that whilst the male genetics are not at play, rather than no child it's an exciting opportunity to still have a family. I thought of this a lot when me and DH agreed to try donor sperm if his sperm doesn't work over the next two tries.

I'm sorry you've had so much in your personal life too and glad that you're feeling more positive now. Please keep us posted on when you plan to start the IVF! 💗 hopefully it all moves quickly for you.

@24b that's great you have the surgery booked and I'm keeping every crossed for you. Where are you having it done?

Could it be that the GP assume that the surgery may fix the blockage? And therefore that's why they want him to have a SA after it before referring for IVF?

X

Hi everyone, wanted to give a little update on our journey:

We've actually started stims now, started this week! I was a bit nervous about starting it as everyone talks about how rubbish you feel, but honestly I've been a bit tired from getting up a couple hours earlier to give the inejctions and I look bloated but that's really all. The injections haven't really hurt, they sting a wee bit just like any other inejction. I used an icepack, but found the cold sensation was way worse than the injections themselves so stopped that immedaitely. I had my husband give the injections as I thought that might be nice for him to feel included. We have a scan on Monday to check on follicles and potential egg collection maybe next week?

Hope everyone is doing as well as we possibly can be during our journeys and we are kind to ourselves even when it feels too hard to be!

@jaspercats We decided to go straight for IVF as we thought it might be nice to potentially have some embryos for a later date, potential siblings ( fingers crossed we are not counting our chickens before they hatch) Our fertility consultant told us that IUI has about a 10% chance on working each cycle, so they would expect 6 cycles or so to be successful. We haven't gone the NHS route, and price wise a few cycles of IUI with donor sperm is the same as doing IVF which was given as a 50% chance with each embryo.

We sound like we've had similar experiences, our Urologist also said that we would have a 4-10% chance of finding any sperm good enought to make a pregnancy!

I totally agree at looking at donors and having a laugh, feels like you are reading CVs or dating profiles in a way. We were so lucky that one of them has physical characteristics and sounds personality wise a lot like my husband- just happened to be the last profile we looked at!

@24b With regards to private vs NHS, I wanted to use NHS at first, but the waiting time in my area was 6 months to first appointment, and at that time we didn't know what was happening with urology and was told the waiting time purely for urology was 9-12 months. So, we went privately and things happened very quickly- had out first consultant appointment on 29th December a week after ringing. I think as we are using donor sperm the NHS wouldn't have funded us for IVF until we had tried IUI first, which as I've said above is something we didn't want to do. I will say that some of the clinics do a partnership scheme with financial options making it a bit cheaper- ours used access fertility where we could pay monthly, and they funded 3 rounds with a refund at the end if you don't get a live birth. You had to have a medical report written, which came back in a day or two. It was all very seamless. There were options to have meds included or pay separately as well.

@WhiskeyInTheJar33 Very excited to hear you've started stims, have you had your egg collection yet? Hope if you have that it went well.

@lemons44 thank you - we’re having it done by Mr Ramsay. Yeah I think that’s what they were thinking as don’t think they’re very similar with Azoospermia.

@pigbabe thank you, that’s so helpful. We’re thinking we probably will go down the private route too as waiting times in our area sound similar. Yes I started looking into those plans and the clinic we are thinking of using does them with access fertility. So good to hear it’s been seamless for you. Glad your stims is going well and wishing you luck for your egg collection!

@pigbabe how exciting you have started stims too! DP is also doing my morning injection as it's not very nice! I want him to feel involved in the process. Am struggling with some of the side effects so can't wait for this bit to be over! We are probably at a very similar stage. I also have a scan Monday to see how things are progressing. I will possibly trigger Monday evening for EC Wednesday.

@jaspercats how funny they’re both in it! My partner is a bit of an observer at the moment, but I’m glad to know it’s there if he needs it. Glad to hear you’ve got a plan together too and well on that road. It must feel good to be on a path.

So good to read so many of you are at treatment stage! Hoping for some positive stories in the coming months, god knows we all need it 💖

@pigbabe thank you for the breakdown of NHS vs Private. I’m awaiting my NHS fertility appointment now after my partners diagnosis, should get a date by March 11th. But we’re still thinking if it’s slow by summer we’ll move private. Good to know how quick it’s moved for everyone!

@pigbabe how did your scan go today?

@WhiskeyInTheJar33 It went well! They said there's a good number but not big enough yet to they want to rescan on Wednesday and trigger probably then for collection on Friday! How did yours go?

@pigbabe Snap! I have 22 follicles, 2-3 are big enough but at least another 10 that just need a few more days. So continuing with stims until scan Wednesday morning for possible EC Friday!

What stims are you on? And how you finding it so far?

Hi everyone. I posted a couple of weeks ago but I guess my message was a bit too vague. Also very aware of how much everyone here is going through. Its so good seeing some of you starting treatments! I was on here a year ago so as much as I'm sad to see some of you still struggling, it's also nice to see progress being made. We have just returned to the fertility clinic after waiting for a year - they wouldn't refer us for ivf until my partner had been with a local gp for a year. My partner has y deletion and also a mild hydrocele, diagnosed with azoospermia. I have to go for day 2 bloods tomorrow and pray that my fsh is still below 9 🙏 if it is then the clinic will refer us. It was 6 a year ago. My partner has his urology appointment tomorrow too...although we aren't too sure what they will do. I think this is only for the hydrocele. We've been told there will be a 3 month wait for our referral for ivf to be accepted? And then that we won't be offered treatment until we've had genetic counselling and been seen by andrology. So I guess it's still a long way off. Will then be SSR. We're going via the NHS route for now as its so expensive but we're only entitled to one round. Just feeling very overwhelmed and anxious about all the different stages to this. My partner and I are both taking proceive and he's trying to lose weight. He is eating a lot more protein and we just aren't sure of the best things to do really. We haven't had a lot of advice from specialists so far.
So sorry for the long post.

@pigbabe @WhiskeyInTheJar33 also sorry I've posted in the middle of your messages 🙈 really hoping the next few days go well for EC for you both!

@Magix86 sorry must have missed your previous message. It sounds as though you have a plan in place which is good. We have stuck with the NHS too as DP wanted to explore everything first and spending tens of thousands of pounds for it not to be successful is something he didn't want to consider.

In terms of things you can be doing, DPs consultant said take vitamins (zinc, selenium and coq10) and have a diet high in antioxidants which helps with sperm damage. He also reduced caffeine and no alcohol.

Wishing you the best of luck in your next steps x

@WhiskeyInTheJar33 ah no, not at all, I should have asked more specific questions lol! That's really helpful thanks - will look into the diet in a bit more detail. I'm guessing we'll have to continue privately anyway but will be good to get as far as we can via the NHS first of all. Taking it one hurdle at a time so for now need to be sure my fsh is below 9 and can then get the referral to the ivf clinic

Hope you're both feeling ok @WhiskeyInTheJar33 and @pigbabe and not having too many side effects x

Hi @Magix86 sorry to have missed your message too. I remember your original messages from when you first joined!

It can feel so overwhelming. What helped me was getting a pad and writing down all the appointments and tests that needed to be done, then ticking them off as they were done. It just helped get everything out of my brain so I didn't feel like I was constantly trying to remember all these things.

There's a few ladies on here now whose partners have Y microdeletion so they may have some advice specifically around that element.

Have they suggested operating on the hydrocele? I think a lot of men can have them and they don't always cause an issue, especially if it's mild.

Make sure you make a list of any questions you want to ask the urologist tomorrow so you or your partner can look at your list in the appointment if your mind goes blank xx

@Magix86 when we started on the process my ccg didn't cover non-obstructive azoospermia. We went with the NHS referral with full expectation to have to go private for the actual IVF. But we thought if we've had all the tests and procedures etc to get us in a better position then so be it. We were lucky that our CCG changed its criteria which meant we qualified just as we were ready.
Given my age and AMH we had time on our side so was in no rush. But you're right, just take each step at a time. Fingers crossed your fsh is still under 9.

@lemons44 - thank you. I'm starting to struggle now and feeling very uncomfortable now with some other manageable side effects. Can't wait to finish stims though!

How are you getting on, what's your next steps?