Waiting for first NHS appt male factor

[NCS88]

Hi all.. 4 months down. Just under 1 month to go til our first NHS appt! As per previous posts we have had private testing during the wait due to my husband’s azoospermia and think we have a diagnosis of CBAVD due to being a CF carrier.

We have the first infertility appt with the local NHS hospital and hope they will be able to refer us for IVF with this information.

Any other male factor couples out there who can advise what happens on this initial appt with the consultant?

We also booked an NHS urologist to take a look next week not sure if we should go or not as the private one has already looked and tested. But they may be able to advise more?

Wish there wasn’t so much waiting and unknown steps but grateful there is an NHS route out there for first go at least in my area.

Thanks for reading x

[EmGLA]

Hello

My friend and her husband have had a similar story to yours. Her husband had the same diagnosis except it turns out he should have full-blown CF and he has no symptoms (they are looking at his DNA as a potential cure/drug target). Due to the risk of it being transferred to their biological children they decided to go down the donor route. They went through IVF with a donor egg and sperm. They decided they didn't want the baby to only be half related to them. They had their daughter earlier this year.

Although personally I have a different cause of my infertility (PCOS)I can completely commiserate with how long everything feels and the frustration it brings. I hope this happy story leaves you feeling a little more positive.

Good luck!

xxx

[NCS88 in reply to EmGLA]

Thanks Emma, that definitely helps and thanks for your empathy too. We are also a bit confused with my husband's diagnosis and don't know where to turn for advice. Hopefully we will have a better idea over the next few weeks. I don't suppose you have more details of your friend's husband's CF status and what tests they had to determine this do you? If she wouldn't mind sharing, would love if you could DM me this. Thank you xxx

[DianeArnold]

Hi NCS. I can email you a list of questions to have a look through if you want. My emails are confidential, just through to me. I am at [e-mail] if you want them. Diane

[NCS88 in reply to DianeArnold]

Thank you so much Diane, I'm pretty sure you may have already emailed these to me so I will try and dig them out x

[DianeArnold in reply to NCS88]

OK. Hope all goes well. Diane

[Thejourneyofyou]

Hi thank you for your message on my post. Have you had your nhs appointment yet? Xx

[NCS88 in reply to Thejourneyofyou]

Hi there - it’s next Thursday xx

[Thejourneyofyou in reply to NCS88]

And have you had to complete a list of tests prior to that? Xx

[NCS88 in reply to Thejourneyofyou]

Sorry for the delay - I had to have a chlamidya screen and rubella immunity blood test. I think I had already had the other hormonal ones. I am not sure if they will test for HIV / Hep on the day, or if I Will have to wait again. xx

[cache_cache]

Hi NCS88,

My husband has the same diagnosis, but we did all the tests on NHS. We had a few consultations mainly to discuss the results. Most of them were very brief and we had to research a lot afterwards . When we found out that my husband is CF carrier I had to do the genetic test myself which took another couple of months. Fortunately, my results came negative and we were given a green light to apply for the IVF funding. When we got the approval we were referred for sperm retrieval. We had the consultation with the urologist a few weeks ago and we are currently awaiting for the actual treatment date. I am not sure how long is the waiting time in the different areas, but in mine everything is very slow. We have been in this process for more than an year and we are not even close to the end.

Good luck!

[StaffyMummy87]

Hi my husband and I are in the same boat.

We found out after he handed in semen sample to his GP for testing that it had zero count. Urology appt then came three weeks later and they confirmed diagnosis of CBAVD (without an ultrasound, which I was not impressed about). We then had bloods taken to check for carrier status for CF gene which came back a week later with confirmation that my husband was a carrier.

The IVF suitability criteria is very strict. I had a lot of weight to loose before we would be considered suitable despite having no fertility issues myself. The guidelines state both man and woman must have BMI of 30 or less. My husband is slim so he was fine, I was not so it has been a long road to loose all this weight, 5 stone and still going to get under target. So over the past two years we have seen genetic counsellor a few times where they talk about your family tree and any pre-existing conditions. They took my blood to check I am not a carrier for CF which I’m not so that’s fine. It’s been months in between appts with the NHS we are just shy of two years into this and no treatment has been given it’s all been preliminary testing

Out last appt was November 2019 and they weighed me and told me I’m 3 BMI points off target.

They advised us my husband will be put forward for sperm retrieval surgery in the new year, they did not say when. I am awaiting an ultrasound appt to check everything is normal for me, then when he has his surgery we will find out if ivf is still ok. They will weigh me again, god knows when, and if all targets are hit we go on the actual treatment waiting list which is around 6 to 7 months the consultant said!

So hopefully 2020 will be the year treatment starts for us. Fingers crossed

Keep us updated on your journey I know from experience it can be so difficult and long. Utilise the online supports

Xx