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

@Magix86 I'm so sorry you've found this out. With your number being so close to 9 I would definitely ask for it to be repeated as FSH level can fluctuate quite a lot! Also check the CGC criteria as sometimes if your FSH level is too high but your AMH is in range then they accept that instead.

@jaspercats thank you ☺️ I'm pleased with our results as I know how hard it is with NOA to get good quality day 5/6 embryos. DP is a little upset and was hoping for more (more so because I've been unwell and he doesn't want me to have to go through this again).

Good luck with your next steps too x

@WhiskeyInTheJar33 I can understand why he may be upset but on the flip side, you have two good chances now. Did they mange to keep some sperm in the freezer for another go? Sorry you weren't well. Hope you're feeling better now.

@jaspercats that's how I see it. 2 chances and if we have to go through it again then we will (maybe a lower dose of stims!)

DP forgot to ask if there was any vials left, I'm going to try and ask at some point.

I'm still feeling pretty rubbish. I'm borderline as so whether I need to be admitted to hospital. My blood is soo thick they are worried about clots so am on fragmin injections to thin my blood and drinking 3-4L of water daily. Im going in for daily scans and tests which is a bit of a pain but it's for the best! Hoping the withdrawal bleed comes soon as that should help!

@RubyStar22 welcome to the group and sorry you find yourself here. You're not the only one who struggles with hearing about friends and relatives getting pregnant. This journey is definitely not fair. I hope your husbands mTese went well .

For those wondering about NHS wait vs private. Definutely check in your local area as it can be very different. We have gone down NHS route and so far things have moved relatively quickly. The longest wait was for the genetic tests and HSG. We first saw our GP in October then got referred for fertility assessment in November. Had our first appointment there in Dec and then had to wait until Feb for our results. In Feb we saw Dr Ramsay privately and decided to go straight for donor because of the success rates. Once this decision was made we got referred for treatment which was sent off on the 27th Feb and I found out yesterday that this has been approved! So the funding step was really quick. Now we wait for our first appointment in clinic which should be in two weeks and then we've been told there's no waiting list but we will have to do genetic counselling and choose donor etc first. So once you get in the system it can move quite quickly I believe but completely depends on your area. Such a postcode lottery unfortunately.

@WhiskeyInTheJar33 I'm soo happy for you. Honestly I kept thinking of you over the last few days and literally felt sick with nerves on your behalf, just like how I felt when waiting for my own update! That 5 day wait is so horrible. But you have two chances now and hopefully this is all you need! Do you know when you will transfer? Sorry you've been so unwell with OHSS. How are you feeling now?

@Disco24 I really hope the wait for funding will be quick for you! Mine was super quick I had the initial appointment then a few weeks later the funding appointment where they check you meet the criteria then funding came through in about 3/4 weeks. So hopefully this is the same for you.

@Blue234 when you hear something by the end of April can you query about Mtese waiting times? End of April isn't too far away so fingers crossed it goes quick for you and then you can get a better idea and plan next steps.

Aww @Sammysquidge I'm so happy for you that the appointment went well 🥹 there's so many rubbish doctors out there that it's such a relief when we find one that's good and actually cares! Keep us posted about your appointment in April.

@Magix86 gosh I'm so sorry 😞 is it possible that FSH changes slightly depending on your cycle and time of day etc and you can retest?
What is their rationale around not accepting you because your FSH is high? Does it impact how IVF will work?

Not much to update on my end. We are doing a FET in April so I'm doing preparations this cycle. Had a dummy embryo transfer yesterday because I had real difficulty with my first transfer and unfortunately yesterday was just awful as well because my anatomy down below just makes it really hard. My cervix likes to hide and the doctors need to be flipping Sherlock holmes to find the dang thing Xx

Hi. Gosh there's a lot to catch up on! So grateful for everyone sharing their stories. @WhiskeyInTheJar33 I'm so sorry to hear how rubbish you're feeling. But amazing to know you have 2 chances after all this! Hopefully you'll be feeling better very soon.
@lemons44 @jaspercats after looking at the ccg criteria it does say you must have EITHER fsh below 9 OR AMH above 5.4. It's so incredibly difficult to get through to our clinic to ask any questions but I'm hoping to ask for both a repeat of fsh and an amh test.
I've also looked at any ways I can improve these results....off to buy some wheatgrass and omega 3 lol! Already taking proceive max but if there's somehow a way of quickly reducing my fsh for the next month if they can repeat this then I need to try anything possible.

I've requested a consultation with CRGH in the meantime. Had a very difficult night after discussing donor sperm with my partner and he doesn't know that he could accept this. I'm just aware of how expensive this is all going to be and the likelihood of finding any sperm with SSR.

I see many of you have had contact with Dr pippa and I'd like to arrange a consultation with her. Is this through CRGH? Or is there a different process?

Hi @lemons44 ! Sorry to hear yesterday appointment didn't go as expected. Keeping finger crossed for you! April is just some weeks apart :)

Re - our situation - yeah, we hope to get an estimation on what's the waiting time for MTESE and then make a decision. However, we are really considering anyway to proceed with Dr Pippa for MTESE, as we have heard she is one of the best for this surgery. But we want to wait to have at least the first appointment with the urologist via NHS and see what they tell us, then we will decide next steps.

Also not sure if anyone could help here, as I am very unsure how the process works on these cases as we need MTESE + IVF.

Does it make any different in the waiting list for IVF whether we proceed privately with MTESE or wait for an MTESE via NHS? Or are the waiting lists for IVR and Urology not linked between them and running in parallel?

My point is really:
-Would they put as more down in the waiting list for IVF if we go MTESE via NHS (as I really expected waiting time will be considerably long)?
-Or our place in waiting queue would be same, but they would just hold on until we hopefully get sperm via MTESE and then proceed with IVF?

Sorry I hope my message is not very confusing! tried my best to explain :)

Many thanks in advance for your help!

Hi @Magix86 ! I completely understand you :( we are hopefully for the MTESE but also very aware that its very likely that it will fail. So we are trying to figure out how we feel about sperm donor. I am open to it and my husband seems to be as well, but we are not 100% sure. However I would love us to have a plan B should MTESE fail. So also we will have to have very difficult conversations in the next months.

Re-seeing Dr Pippa, we have seen her in King's Edward Hospital. As someone mentioned recently her PA Cecil is very responsive and Pippa is just lovely.

She is a consultant as well in CRGH, but you can't see her there unless you are being treated there and they require her advice (or this is what CRGH told me when I contacted them)

@WhiskeyInTheJar33 blimey I didn't realise you could get so ill from it! Bless you. I hope you start to feel better soon. A good excuse to binge watch TV I think!

@lemons44 your sherlock Holmes comment made me laugh! I think this will be me too! When I had my HSG the Dr said to me (whilst she was trying to put the catheter in) "how tall are you?" I said, "5ft3 why?" To which she said "your cervix is so far up there I would have thought you were much taller. I'm struggling to reach it". You can imagine what was going through my head as she was trying to locate it! Go-go gadget arms or something...

@Magix86 great that you've spotted the and/or bit in the criteria. I would ask for a repeat and yes, take supliments. I take so many I rattle these days!

@Blue234@Magix86 yes, the expense was part of our decision too although my husband was open to donor from the beginning so different circumstances. Some men need to go through the process to finally know whether they can find sperm first before being able to accept an alternative. This is really common on the azoo whatsapp group run by knackered knackers. Most of these guys only accepted donor once they had got to the end of their SSR journey. My husband is very stats driven so struggled to see past the success rates and he didn't want to spend loads of money, time and effort on something that statistically won't work when we could be moving forward to our ultimate aim of having a child. This is only our thought process however and for a lucky 4-10% of NOA patients with our diagnosis they do have a baby from the process! Worth remembering I think. It took us time to come to the decision and the weekend before we finally said yes to donor was extremely hard and full of tears but once we made this decision we felt so much lighter and now feel that we are making some progress.

As for doing the mTese alongside the IVF referral. We originally thought about doing this however we were told that we had to either have sperm in the freezer from a SSR or sign to say we're going donor before we could be referred for assisted conception in our area. They wouldn't allow us to continue with both simultaneously and said the process of IVF is the same after referral no matter how long you've waited for SSR. Also you have to use your NHS IVF round within 1 year of the referral letter. That's why when we were thinking about having the SSR, we thought we would pay private for this bit to speed it up. Its done weird here, first you get referred for fertility assessment then once they agree you need help and only after you've had your tests and SSR they refer you for assisted conception which includes IUI and IVF. Don't know if that's the same where you are?

@jaspercats thanks a lot for your message!

I am bit lost on how it exactly works in my area (but my guess is that it should be same everywhere). Maybe they still need to contact me to discuss the details you are referring to (no clue honestly!). So thanks a lot for giving me an idea on what potentially our next steps with NHS would look like :)

All what i can tell you is that at the moment NHS app says:
-For my husband -> Urology "referral in review". Due to be reviewed by end of April
-For me -> Gynecology "referral in review". Due to be reviewed by end of April. They gave me a call a couple of days ago asking for my husband details and they told me they might reach out for additional questions

That's all the info I got for now.

@Blue234 do you know whether the gynae referral is the same as the fertility referral. You should be able to find somewhere on Google the referral process that GPs in your area use. So for example for bristol if you type in remedy BNSSG you can get all the info and criteria for IVF (and other referrals) in this area. If you can find yours then that should give you loads of information. I basically studied each bit to make sure anything I could do to speed things up, such as getting certain bloods done in the GP, I did before they got to it. Also, don't be afraid to chase or ask for a cancellation as that definitely helps with speeding up.

@jaspercats yes I think it is the same! I have been referred to the fertility unit in Royal Berkshire Hospital (I am in Berkshire area). Thanks a lot for your advice! This really helps as you can see I am quite lost! I will do some research to see if I can find the same info for my area.

@Blue234 thank you. Some very difficult conversations to be had, but very necessary. I'm hoping we can do everything we can first before going to donor sperm, but I'm with you on wanting to have some kind of plan B if needed.
It sounds like we can't request Dr pippa for our initial consultation with CRGH? If that's the case then I wonder if we just go via Cecil to see her instead. Just frustrating to have to pay for the consultation with CRGH if we are now going privately, but then also pay for her at King Edwards!
I do agree with advice to keep asking for cancellations to try and speed things up for you.

@jaspercats thank you for sharing how you came to your decision. We have a lot more to go through yet but this helps. Can I ask what supplements you are taking? I've been on proceive max and as of today will add omega 3 plus wheatgrass. I'm just really hoping to try and reduce fsh/raise amh so our nhs referral can go through!
The fertility clinic actually called me back earlier and said our referral is on a waiting list and we can repeat my fsh test next cycle or can pay to have an amh test, in the hope that either might then meet the criteria for referral. I've chosen to do both so will have fsh done and pay for the amh test. I've heard amh might be higher in the first week of your cycle so will probably hold off for a couple of weeks and get them done together.

Completely forgot to add - I've booked an acupuncture session for Monday too! I feel like I've lost it but trying to throw everything at this. Never had acupuncture but hopefully it can't do any harm and is at least worth a try. Literally just need my fsh to go down by 0.3 lol!! And then on to all the other hurdles afterwards 😆

@Magix86 yes it hasn't got to go down by much so fingers crossed for you! Well...supplement wise I'm taking a lot! I have no idea if they're actually helping but I thought why not?! I read it starts with the egg and based it off that. I'm taking - pregnacare conception (not max), B12 1000ug, and a ubiquinol 200mg in the morning. Then in the evening I'm taking another ubiquinol 200mg, vit E 200IU, vit D3 and K2 2000IU, omega 3 500mg, selenium 200ug, vit C 500mg and methylfolate 400ug. How much omega 3 do you take and what is wheatgrass?

Anyone else taking suppliments? Feel free to suggest something different or tell me I'm doing something wrong.

@Magix86 we contacted Cecil directly for Dr Pippa and he is lovely and really helpful with all the questions I asked him when I emailed. We then saw Dr Pippa at King Edward vii hospital and she was very supportive and encouraged us to get us much done on the NHS as possible to reduce costs if we do decide to go privately with her. I really hope you have some luck with the NHS funding. Also I've had the same difficult conversation about sperm donors with my husband and we never really came to a decision but I'm the same and want to have a plan b. Dr Pippa helped by discussing it at our appointment though and like she said if the SSR doesn't work then we may feel completely different about a sperm donor so just taking it one step at a time.

@lemons44 wishing you all the best and luck for your FET in April xx

Also interested to hear any vitamin advice for males/females to improve our chances

@Magix86 Dr Pippa works independently but she consults with some clinics like CRGH. This is her PA Cecil's email address: [email protected] and you can email him to book appointments. He is really nice!

@Magix86 sorry sent too soon earlier. How it worked for us is we had our initial consultation at CRGH (google their about us page and the different doctors as you pick which one you want) then at that CRGH consultation our dr got his PA to send us Cecil's email so we could book with Dr Pippa and have a consultation with her (we did have to pay for this). Then after seeing Dr Pippa we had to have a follow up with our CRGH dr again and then we started treatment x

Hope you're all ok today. I know Mother's Day can be hard.
I'm spending it having cuddles with my dog and treating myself to guilt free chocolate whilst catching up with married at first sight Australia. Hope you're all being kind to yourselves also xx

Hi @everyone, taken a break from here for a few weeks as was going through a difficult time mentally. Feeling much better as been trying to focus on the good around me and look after myself. Mother's Day is always difficult but I am always spoiled by my nieces who will always go out of their way to give the "worlds best aunty" a Mother's Day treat 😀, bless them.. hope you're all well. Will try and catch up with all the posts but wishing you all the best x

So would I 100% it's so close to the threshold!

The 1 year rule isn't true, we had an extension as our SSR got postponed!

Has anyone here has the vaginal bacterial swab done? Dr Ramsay suggested I get it done through Melanie Brown. I'm very surprised to see 2/3 of the good bacteria on my results is virtually 0! I have now been suggested a whole treatment plan of antibiotics and probiotics and wondering if anyone has been through this.

@jaspercats I think a lot of what you're taking is in the proceive max so probably quite similar. I've added the 1000mg omega 3. I read somewhere that wheatgrass could help reduce fsh - no idea if it's true though! I just got a powder that I add to a smoothie every day. I guess time will tell.
@Sammysquidge sounds like Dr pippa is quite thorough in her consultation. I'm going to email Cecil this week and book an appointment, thank you.
@lemons44 - dog cuddles, chocolate and mafs sounds like a great day for yesterday! Hope you're doing OK.
@2022ttc sorry to hear you've had a hard time recently. This group is great for picking people up again and offering support 🙂
@Bran90 I haven't heard of that at all!