My husband got given an initial diagnosis of azoospermia in March this year (we’re sure it’s not the blockage version as he can see from his results he has extremely high FSH levels and some other stuff that’s too medical for me to understand). Nobody has talked to us about the diagnosis, he’s just been referred to male fertility in the meantime by his GP. We’ve been trying to stay off google, but it’s been difficult when we’ve been left in the lurch with no medical professional to ask questions to and no understanding of what his diagnosis means for him/us, just a diagnosis and some test results uploaded to his NHS app. The GP won’t tell us what his results mean as I can understand he’s not a specialist.
The referral was put through right at the end of March and he’s only just had confirmation yesterday of an appointment with a urologist in 6m time in mid November. This seems like such a long wait just for an initial consult (let alone any potential treatment options). We’re both early 30s, no children and struggling with just the beginning part of this journey. We discussed the potential of going private but does anybody know how/if this affects our current referral? There is nobody to ask and we can’t wait until November just to have a conversation. He doesn’t know if he is completely infertile or if there will be treatment options available to us.
He’s going to ring to ask if he can be put on a cancellations list, but otherwise, does anybody know what this journey looks like if they’ve had a similar experience (in terms of appointments/treatment options if it’s the rarest form of azoospermia/will going private mess up our current place on the NHS wait list/how much we’re even looking at as a ball park figure for private for this specific issue)?
I think the most difficult part at the moment is the not knowing anything about what this means for us (can we even have biological children?) All we were told is that it’s highly unlikely we will ever conceive naturally but the doctor didn’t want to divulge any more than that. We just need to know is it an option and waiting almost a year from when we initially went to the doctor feels too long to wait for answers.
Thank you
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MPum
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It would be worthwhile phoning and asking to go on the cancellation list as this may bring the waiting time for appointment down . Due to advanced medical treatment men with this condition do not have to give up there hopes of conceiving a child . Depending on the type of azoospermia , it may be surgically treatable with a return of ejaculated sperm or it may require sperm retrieval and IVF to achieve pregnancy . For information take a look at our website fertilitynetworkuk.org click on menu - fertility factsheets - and you will be able to access information on sperm retrieval techniques - lifestyle fertility issues for men -male fertility problems etc . This will also be a very stressful time for you both -on the website you will also find support groups that may be of benefit to you both . As for seeing a private urologist -would it effect your NHS waiting time- I would check with your GP or you local CCG [Clinical Commissioning Group] regarding this .
Another source of info that may also be helpful is hfea.gov.uk [UK fertility regulator]
I'm so sorry to hear this. What an incredibly stressful situation to find out about the azoospermia and then not be able to even speak to someone about it for 9 months. 😟
Personally, I would recommend paying privately for a consult with Dr Jonathan Ramsay who is one of only a few urologists that specialise in male fertility. When we did a consult with him last year it was £280, but he's great - super informative and we found it absolutely worth it. If he recommends doing further tests on the spot then that will cost extra, so you'll need to balance what you can afford with how long you're willing to wait for things on the NHS. If you can afford it though, I would move quickly and do as much as you can. You're still young and being younger will make things easier if you do end up needing IVF in the end...
I don't think paying for a private consult will affect your place on the NHS list...but if you're worried I just wouldn't mention it to them. Staying on the NHS waiting list but starting the process of going private simultaneously is probably your best bet.
Hi so sorry to hear of your stressful situation. We were in a similar situation at the start of our journey, too complicated to go into but ultimately we didn't get anywhere until we'd seen an amazing andrologist, an area of the medical world we didn't know existed. This was at Liverpool women's hospital before COVID-19 however it hit in the middle of waiting to be referred again. To speed things up we went private with the recommended consultant and were finally able to get answers and a way forward which ended up being donor sperm. We asked to be referred back into the NHS and there were no additional delays. I know it's essentially queue jumping and some may disapprove but I wouldn't hesitate to do it again to move things forward. On another note in your early 30s time is on your hands do please try not to stress about that bit at least. Wishing you all the luck x
Also, I had asked for a dual referral, one to andrology the other to the donor clinic. During that initial time I also asked to have all tests and investigations to me so we were good to go once we knew where we stood with my husband. This was all NHS. for your partner should he need it, there's an online support group called himfertility. There's a monthly zoom and support available all the time. My husband has found it has made such a difference to him.
So sorry to hear this, it's devastating news to receive and awful to have to wait so long before speaking to a specialist. I'd make sure you are also referred to your local fertility clinic at the same time to move things forward. We paid privately to see an andrologist locally who was fantastic and talked us through everything on the male side. He arranged investigations that could be done on the NHS (via our GP) so I think it is totally worth doing as that will mean by the time you see them on the NHS all the relevant tests will be done and they can get cracking sooner. Also, our andrologist also works for the NHS and he does the sperm retrievals, so you may be lucky and see the specialist you are always waiting to see.For non-obstructive azoospermia there are options to retrieve sperm from the testis and fertilize the eggs via IVF/ICSI. Good luck with it all, the waiting for everything is the hardest part of all of this for me xxx
Hi MPum, I was also diagnosed with azoospermia. It turned out my vas deferens was blocked. I was referred to an Andrology team at a London hospital who performed sperm retrieval surgery. It only took approx 10 mins and because of the anaesthetic I couldn't feel a thing. Thankfully they were able to find healthy looking, mobile, sperm, which was then frozen, ready for ICSI. This was successfully used to create embryos. This was all on the NHS.
This must have come as a shock and it's scary but don't give up hope.
Firstly just wanted to say, I'm so sorry you are going through this. I know how stressful the waiting is when you are looking for answers.
Like soccerkt6, we too ended up seeing Dr Jonathan Ramsay who was amazing (happy to discuss more with you in direct message if you like). After around 10 months of trying we decided to get some tests done privately and was then referred to Dr Ramsay by our clinic. We kind of fell down the private path but I'm glad we did because around 5 months after our first consultation we had a diagnosis and knew what our options were.
Around the same time as this I asked my GP to refer us for IVF on the NHS. We were just about to try IUI privately when all of a sudden we were told we could start our free cycle of IVF in a couple of months time so decided to wait for that instead.
Personally, if you can afford to and if the waiting is causing you a lot of stress and anxiety, I would move forward privately with the investigations and then ask for an IVF referral on the NHS maybe once you have a little more information? If this isn't an option, although hard, maybe try to fill the time between now and November with stuff you both enjoy doing, go on holiday, have some nice days out etc. I think having things in the diary will help the time to pass by quicker!
Happy to chat more, any questions you have just let me know xx
Hi so sorry to hear you are going through this, it's so isolating and the months long waits for information so difficult to face. We were in a similar position last March. My husband was found to have zero sperm in sample and NHS told us approx 12-18 months for urology referral (in Scotland and during covid). We went private, where wait was 8 months (again, in Scotland. I spoke to other consultants down south and could have been seen much faster). I would definitely recommend private for initial consultation so you at least know what your options are and if there's a wait get yourself on the cancellation list. Our private consultation was brought forward by 6 months thanks to a cancellation.
Double check if going private will impact your NHS treatment. For us it didn't and we were able to mix and match so NHS did some of the genetic testing saving £££. In the end we did mostly private and were able to get SSR and start ICSI within 4 months of urology consultation. It would probably be faster now as we had to wait 3 months for private hospital to reopen as they were an overspill for NHS hospitals during covid. Actually got a letter from NHS this week saying we could proceed to SSR and ICSI in July (15 months from initial azoospermia diagnosis) but I am currently 19 weeks pregnant from private treatment.
Not sure if you have Instagram but definitely worth connecting with people on there who are dealing with azoospermia. There are women documenting their journey through both SSR and donor to IVF/ICSI and it helped me feel a lot less alone.
I am so sorry you and your husband are going through this. It is a tough diagnosis. We also have azoospermia. We did all the investigations on the NHS. It took a long time but I think it was partly because it was in 2020, during lockdown. Ours looked something like this:
Azoospermia diagnosis from GP
Referral to urologist - confirmed nonobstructive azoospermia
Scan to see if it could be varicocele - thought is probably was
Scan and examination from urologist at our clinic - said it definitely wasn't varicocele
Genetic testing - for us all came back normal
MicroTese surgery (surgical sperm retrieval) - sadly for us unsuccessful
ICSI with donor sperm
We started investigations in Jan 2020 and did our first round of ICSI with donor sperm in April 2021.
I hope this is helpful in terms of timeline. The waiting is very hard with fertility treatments but unfortunately it is all such a long process. We haven't had success yet but are still trying. xx
My husband has male factor azoospermia and so we have used a donor. It took a while jumping lots of hoops and having samples and scans to discover what was wrong. I’d had most of my tests done before they’d even begun to consider my husband as a factor.
It ultimately came down to the last test they bothered with for him- blood test- which showed it was genetic and nothing to be done.
If this wasn’t done with the hormone tests (my husbands wasn’t) maybe check in with the gp to get that done.
We were a similar age when we started this. It took a while to decide what to do but we’ve used a sperm donor (again nhs through our hospital) and it absolutely feels right.
You still have time on your side, even if it doesn’t feel like it right now.
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