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
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
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
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
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
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
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!
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!
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...
Yes i will message you xx
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
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
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.
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
Hi Bella,
I know exactly how you feel for you and your partner. My partner has non obstructive Azoospermia also and was diagnosed back in 2020. My partner had extreme rounds of chemotherapy when he was a teenager and unfortunately killed all of his sperm cells. We still remained hopeful and he had a micro tese operation the following year to no success. Before he had the op he was put on clomid for 3 months and his testerone went up from 7 to 27. I believe with these results this was the reason they went forth with the op but we knew he only had a 10% chance. It is such a difficult thing to accept. The following year I was still not able to accept this was it so I too contacted Dr Ramsay regarding sperm mapping. I explained that my partner was treated at UCLH by a renowned and highly skilled urologist and he kindly reached out to her as they were close peers. In discussing the op she performed he let us down gently that she was the best in her field and that on this occasion he didn’t think he could help. My partner’s urologist also said we would be wasting our money 😔. It’s been a hard pill to swallow, my partner was given the devasting news at the age of 32 at the time. We ended up going down the donor route but unfortunately so far have had 2 failed ivf cycles. We now have 2 embryos created with a new donor who looks exactly like my partner it’s quite scary. I’ll be doing a transfer this year so fingers crossed. In the back of my mind I still battle with the thought of miracles and search the internet from time to time if there’s been any miraculous stories of sperm production returning to diagnosed Azoospermia patients. I would say exhaust all options like we did, but also have a plan b and speak about what you both would want as a family. My partner always said that he would want 1 of us biologically related to our children if that was our last resort than none of us if we can. Good luck and feel free to reach out if you have any other questions xx
Hi Ree
Thank you for this. I understand the torment very well- its extremely hard for our partners to accept as well. I'm sorry you have had 2 failed cycles- you think your onto something to get that far then it doesn't work out. Sending lots of positive wishes for your next transfer❤️ We plan to see Dr Ramsey and explore all options and be absolutely sure that there is no chance before we could accept that there is no hope. I am in the angry at the world stage at min!! Its so cruel for us all.
But completely 100% agree about preparing for plan B... we are concious of my age too and while my eggs may be ok now according to tests, time isn't on a womans side! I have tried to talk to my partner about sperm donor but he's struggling with it at min.. i suppose my main worries are, do you tell the child or keep it secret? i know lots of moral feelings around this but we are so scared we would tell them and they would hate us or reject my partner as their father etc. Other fears are around will they look like him, how do you get a match so good, is there a certain place/website to use?!
Its a mindfield that none of us ever expect to go through 😭 xx
Awww yes we went through all of your questions. I understand how cruel and unfair life is 😔 At one point I was blaming my partner’s parents as they never pushed to bank sperm or retrieve it for his future. They attempted once but with him being an adolescent/ teen at the time how can you really ask a pre-teen to retrieve sperm if they haven’t reached puberty. I don’t think it’s anything for you to think of now but for us we had to have the conversation of using a donor and luckily my partner was receptive to it very early. When you have IVF on the NHS and you’re using donor sperm it’s compulsory you both have joint counselling before you can proceed. You go through the feelings of having a child that may not be both genetically linked, what is conversations are recommended with the child when they are donor conceived. It’s highly recommended that the child is aware and knows how they were conceived from a young age and that it shouldn’t be a secret. The story of mum and dad wanting and loving them before they were even born and that they tried everything before seeking a helper to have them ❤️. In this day in age families are created in so many ways (donor sperm, donor eggs, donor embryos) and you never think you’d have to have a family in an unconventional way.
When you think of families or a person that has a biological mother or father and they may not think of them as such because they were not loved or they were never present in their lives. Then you have people that stepped in to a mum or dad role that are not genetically linked but they are the best parents you could imagine and seen as such by their step or adopted children. It makes you think people may have the genetic title of mother and father but they don’t actually have the real title of being mum and dad. I don’t believe a child that was deliberately wanted and made would resent their parents for making that choice, being honest and loving them unconditionally. As I say all discussions to have but ultimately a decision that requires time, patience agreement and understanding for the both of you xx
Thank you for sharing that lovely way of looking at things. I actually don't believe at all biological status is what makes a parent, or a sibling. Its the love and experiences and support someone provides that is worth more than DNA.
Its just harder for my partner in his family/culture and that's why we would feel we would have to keep it secret.. for his sake and a child's to be accepted. I suppose the other fear would be them finding out but then how could they. Its just a head wreck, Massive life decisions to be made and nothing is straight forward or easy!! xx
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