Non obstructive Azoospermia- advice p... - Fertility Network UK

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Non obstructive Azoospermia- advice please!

Bella123321 profile image
16 Replies

Hi everyone, any advice welcome!

My partner was diagnosed with Non obstructive Azoospermia with no genetic causes (blood tests clear) and one failed sperm retrieval procedure. His testosterone is low and FSH is high (17.4). We have been told to use donor sperm.

Surely this isn't it? There is bound to be other things which can be done, does anyone have any recommendations for UK specialist who have successfully helped them in similar circumstances?

Thank you

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16 Replies
CyclingAddict profile image
CyclingAddict

We haven't been in exactly the same boat as my husband was producing sperm, but his count was extremely low. He took loads of supplements and made lifestyle changes and it massively improved his sperm count (from 1 mill to 10 mill). I'm not sure if your partner doing a similar thing might help prior to future treatments (if he hasn't already started taking supplements and making lifestyle changes).

I'm sure others can help with specialists who might be able to help.

Good luck x

Bella123321 profile image
Bella123321 in reply toCyclingAddict

Hi , he is on lots of supplements and we would be generally active eat reasonably well (odd weekend takeaway) we don't drink (unless at wedding or something) and neither of us smoke. Just feels so cruel!! xx

CyclingAddict profile image
CyclingAddict in reply toBella123321

It is cruel. I feel like there's often less support for couples who are going through ivf due to male factor infertility. I mean up until recently it wasn't really thought that men could be infertile. I think treating male infertility is still in its infancy. We now have a lovely 13 week old son through ICSI-IVF, but it wasn't after a lot of heartbreak X

Bella123321 profile image
Bella123321 in reply toCyclingAddict

I agree, its still not a thing in society and so difficult for the man as well. i just pray to God that someone can help us.

Congratulations on your baby son im sure you are over the moon to finally have him here 🩵 x

Has your husband been prescribed any medication? We have extreme male factor (as in a few, not a million!) and my husband has been prescribed clomid, we’re still waiting for the situation to improve but I would guess if your husband’s testosterone is low it’s worth increasing it and then seeing what happens? We are seeing Dr Ramsey in London who everyone is very positive about. I always get frustrated when people mention lifestyle and supplements because in extreme situations it might not make an impact but it’s always worth a shot if these are things you haven’t already explored. Wishing you lots of luck, I’m sure you have a shot xx

Bella123321 profile image
Bella123321 in reply toRicecrispies2024

He is on every supplement going zinc etc with no impact as of yet. Actual Medication has never been mentioned which I'm so confused about so we are seeking a 2nd opinion. I have read about clomid and while his bloods imply testicular issues with production of sperm; i have read of men with worse bloods (higher fsh and lower testosterone ) who found sperm through retrival. I have read a few threads about Dr Ramsey in London so I think this is our sign to bite the bullet and contact him! Thank you for your reply xx

He is meant to be the best, so at least you won’t be going on a wild goose chase once you’ve spoken to him! He does have a waiting list but you may as well be on it. It’s such a painful and heartbreaking experience, but we have to stay positive :) really wishing you all the best xx

He is meant to be the best, so at least you won’t be going on a wild goose chase once you’ve spoken to him! He does have a waiting list but you may as well be on it. It’s such a painful and heartbreaking experience, but we have to stay positive :) really wishing you all the best xx

Anonimatoz profile image
Anonimatoz

Hi! Our diagnosis is also azoospermia, although it is obstructive. We did have a "successful" sperm retrieval with very poor results over 2 IVF/ICSI cycles.We have changed clinics and are now with Dr. Ramsey, who has given us renewed hope when we were about to give up on parenthood completely. He has told us that it is common that obstructive azoospermia causes some non-obstructive factors and I ended up learning a bit of non-obstructive in the process too.

First thing: which retrieval technique was used? TESE? MicroTESE? Regular TESE is unlikely to work with non-obstructive azoospermia.

Second, was his testosterone always low? The low Testosterone with high FSH may not be a bad thing, specially after a surgical retrieval, it signal the body is trying to recover to produce more testosterone. My husband's testosterone went down a good bit after the surgery (although still at the normal range) and thr FSH went high. Dr. Ramsey prescribed Anastrazole and testosterone doubled in a month, the FSH kept going high but Dr. Ramsey said this is normal and an excellent result.

Thirdly, do not rush on another retrieval and cycle. Very few clinics know how to deal with male infertility. Finding sperm is just the beginning of the journey. You need a good team and embryologists that know how to deal with azoospermia cases. Don't end up at shite clinic like us where we had 10 vials of sperm wasted, 6 going straight to the bin because they didn't have the technology to deal with it!

Bella123321 profile image
Bella123321 in reply toAnonimatoz

Hi Anonimatoz

Thank you. Our hearts are broken, its all such a shock and we just feel like nobody has a clue- nearly like donar sperm is the answer every appointment but we never want to do that and this has all only came to light in recent months after a year of TTC. So how can that be the answer when so much has not yet been explored!!

The retrieval technique was regular tese not micro, tissue cut from each testicle and examined showed no sperm. Bloods were only done when we commenced fertility investigations, and that was 3 months before the procedure. Bloods were found to show testosterone was low (7) and FSH high (17.4) but have never been rechecked and no interventions such as medication, then procedure done.

No medication such as Clomid was ever suggested - when i asked was told it wouldn't work?! And procedure went ahead with no sperm found. My partner is over 6ft , naturally well built etc there are no signs mentally or physically of low testosterone in any way!

We have never got as far as even starting a IVF cycle, as we hoped to find sperm and freeze it then commence a cycle. Dr Ramsey name keeps coming up and i have emailed today to try get an appointment, we will have to travel but i don't care we will do anything. Even just to have one child of our own we would be fulfilled. I'm sorry to hear you had such a bad experience- when eggs and sperm are more precious to us than gold its devastating to have it misused and wasted!

Anonimatoz profile image
Anonimatoz in reply toBella123321

It is a terrible diagnosis... I know well. I think I have accepted it now after 3 years, but my husband just told this week me he has not fully accepted it.He is also very healthy, his bloods actually came perfect, much better than mine when we started this. I had low vitamin D, mild anemia, etc... I couldn't believe it was male infertility.

It has nothing to do with how healthy a man is and it is also not his fault he has this medical condition.

It sounds like you were rushed into the surgery...

Dr. Ramsey is quite expensive and doing all exams there could add up, so best thing you can do while waiting for an appointment is to get these done for your husband, if not done yet:

- Testicle ultrasound (Ramsey could ask this to be repeated if the report is not great);

- Complete blood with hormones, vitamin levels and Thyroid function;

- Genetic tests (Karyotype, Microdeletion and Cystic Fibrosis)

Feel free to direct message me. I have researched a lot on these 3 years...

Bella123321 profile image
Bella123321 in reply toAnonimatoz

Yes i will message you xx

GranolaHippo profile image
GranolaHippo

Hi,

I don't have specific knowledge of azoospermia, but as a reminder, you can seek a second opinion within the NHS, if there are urologists or fertility doctors you think might be helpful.

Each hospital and clinic will have a different approach.

Our first investigations (we have recurrent miscarriage, so totally different, but the systems you work within are the same) were very, very basic and just told us to 'keep trying'. Second opinion led to a lot more support, options and guidance.

So, they can be worth getting. Worth checking NICE guidelines to see what gold standard care in NHS is considered to be (you may have reached it, you may not) and also worth re-checking you ICB funding offering and criteria -these do change and might've improved (ours changed in July and improved).

Apologies it's not more specific, but I found knowing how to work within the system helpful.

We also paid for private investigations etc, and most doctors are happy to take info from NHS or private sector, even if they work in the other.

Wishing you all the best and I hope you're also managing to take some time to do fun things together -it's really important when you get this kind of news, I've found. xx

Bella123321 profile image
Bella123321 in reply toGranolaHippo

Hi GranolaHippo, thanks for your reply. We went private after being brushed off by GP multiple times told "it will just happen". We have also been referred to NHS now and accepted by the private clinic, however told due to waiting lists could be 2 years before we are seen!!!! So we are willing to pay private to speed this all up as it is torture.. Sorry to hear about your miscarriages, i hope you are being well supported xx

GranolaHippo profile image
GranolaHippo in reply toBella123321

Oy vey!! If I had a £1 for every bit of 'it'll just happen' advice...

Yes, we got a bit fed up too! Definitely worth getting a second opinion if you're already in the private sector.

Bella123321 profile image
Bella123321 in reply toGranolaHippo

Yes you are right, going to pursue a 2nd opinion with Dr Ramsey i have seen him mentioned on lots of forums as specialist in this area. Yes - if i hear "any word of a baby" one more time!! Its so painful going through this and people asking thoughtless entitled questions. xx

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