MFI only

[AnonymousXXIX]

Hi everyone,

I thought I would try a new thread (on the recommendation of @ForeverAintEnough) as I have a bit more info now. We found out this year that DH has oligoasthenoteratozoospermia (OAT) i.e. low sperm count, motility and morphology (but not non-existent fortunately).

He is totally healthy and has no complaints at all; his blood tests came back basically perfect; and an ultrasound revealed no varicocele or anything like that. It did show some calcification though which the internet tells me is v bad but the ultrasound technician insisted is normal so that is a bit of a questionmark. Basically we are both totally healthy and have no idea what is going on.

While we are meant to worship the NHS of course, our experience has not been so great so far. Cancelled appointments, letters sent to wrong addresses, etc. culminating in an appointment with a specialist for which we had to wait 2 months only to have it cancelled without anyone telling us! It is now almost Christmas and we are nowhere near closer to knowing a) what the issue is or b) what we can do about it. And that is going to make for some very tough conversations with family over the holiday (where are the grandchildren?! We have no idea!).

I mainly want to know if anyone else has dealt exclusively with MFI without any lifestyle factors... And also, can we ask to be put on an IVF list before seeing a specialist, as we do have the OAT 'diagnosis'? Because this is going to take months it looks like, and if the conclusion is IVF+ICSI then I would have liked to be put on that waiting list 2 months ago tbh!

I feel some pressure to get on with it because we are both 31 now but obvs the longer this takes then age is going to play a role as well. And yes if no one on the NHS will see us before Christmas I might try and make a private appointment for the specialists, but since we qualify for NHS IVF I would really rather not start throwing money at private IVF right now only because they keep messing up the appointments!

Feeling very alone right now : (

Hi @AnonymousXXIX my DH has the same issues as your DH also healthy lifestyle etc nothing in his medical history at all - never mind something to do with male fertility. He’s a perfect weight never smoked or did drugs barely drinks etc. They said it’s just genetics and bad luck really.

For my DH they did find a varicoele which when embolized greatly improved his DNA fragmentation but his count did not improve enough to remove the OAT classification.

Unfortunately it can just happen with no outward or medical reason. I would recommend you get a DNA fragmentation test as this is important to find out about the quality of the sperm - if the dna frag is high I would consider TESE to get better quality sperm. I would also get your DH a blood test for cystic fibrosis as when a man is otherwise healthy and has low sperm count it can be as he is a carrier. My DH test came back negative but our consultant said it’s important to rule it out.

The good news is if you only have male factor issues you have a good chance of success with ivf - ICSI but you will need to do it to get pregnant (unless you get very lucky which can happen but I wouldn’t be waiting years to find out if you will get lucky as in the meantime your own fertility would be declining. So definitely try get on a list for that.

I would say and I don’t mean this in a unkind way but there is a tendency here that because you might get something free on NHS that you wait forever to do things. I am in Ireland and have to pay for everything so we just find the money through cutting back or loans to get the DNA frag tests and to get seen by private consultants. I am not saying to go private for ivf (although I would ask what the wait list is) but if they won’t do DNA frag then just pay for it yourself.

You can also start both getting on supplements to improve your health. For you proceive woman and 200 ubiquinol plus omega 3 for him proceive max for men, 200 ubiquinol, high dose of omega 3, no or very low amounts of caffeine or alcohol (maybe start after Christmas!) eat nuts as snacks particularly Brazil nuts, no baths, no laptop on knee or phone in pocket cut out junk food.

Hope this helps.

Hi @AnonymousXXIX we are also dealing with male factor, my husband has azoospermia. We also both lead very healthy lifestyles, and after speaking to our clinic and doing research online have tried every diet and supplement under the sun over the last few years and still nothing worked! My husbands FSH is ever so slightly raised and that is the only cause they can find, although they don't know whether this has always been raised or something that happened over a few years.
With our issue, the only option was MicroTese (surgical sperm extraction) which had a 9 month wait list so we did not have to wait for IVF afterwards, they just froze what they found and we moved straight on to IVF which didn't work unfortunately. After the failed IVF we found a specialist called Mr Ramsay in London, he has been brilliant, he has really listened to us and has ended up prescribing my husband clomid to see whether that can boost anything, he has had one blood test since and the results showed that something is happening but he needs to take them a while longer to see if it is working.
It might be worth looking at a private specialist if you can, the urologist at our IVF clinic was not very helpful and if we had found the private specialist first we would have tried the medication before wasting our one round of funded IVF. I believe you can still see a private specialist and still continue with the funded IVF, I'm not 100% sure on that but I can't see any reason why that would be an issue.
Hopefully that helps in some way

Thanks both that's really helpful and (strangely?) reassuring. Do you think we can ask the NHS to put us on the list for IVF while we seek out a private specialist to continue looking into it at the same time? It seems very likely that the outcome of seeing further specialists will be IVF+ICSI anyway, just perhaps with more of a reason why, so I don't see a point in waiting.

We did indeed introduce more exercise, no laptop in lap, supplements, nuts, fish, etc. but tbh he was doing really great on all that already. Just feels like the only thing we can really 'do' atm so it mostly combats the feeling of helplessness! And it won't make it worse anyway so who knows.

A massive issue we have with appointments btw is that we don't have a car and currently travel by train is not recommended, and as we basically live in a field that makes getting to specific places very hard! (And it makes unexpectedly cancelled appointments extra hard because it takes us ages to get to them! Fuming...)

@AnonymousXXIX I would travel by train regardless. Fertility is important and a medical condition. I actually flew to the U.K. to do a round of ivf during lockdown in both Ireland and the U.K.

You should definitely be on the ivf wait list. Seeing specialists will just help hopefully a quicker time to ivf success (ie if you find out fragmentation is high and then ask for TESE rather than doing one round, it doesn’t work, you do the test then find out you need TESE). Unfortunately with a low sperm count it’s ivf or get lucky. The dietary things and supplements won’t help you fix the issue but should improve chances of success at ivf. Well we have found we have better rounds and sperm look better since we improved diet and supplements even past what was already healthy.

I know what you mean about reassuring, it can feel like a very lonely journey sometimes can't it, finding others who are going through something similar can be helpful.
I don't know for certain but personally I can't see an issue with going on the wait list and at the same time speaking to a private specialist, we were at no point ever asked if we had been speaking to anyone else / any other company about treatment, and the private specialist we saw didn't need any details of our IVF clinic.
We have found that since COVID we haven't had any face to face consultations at all, they have all been over the phone so that could make things easier transport wise for you. Prescriptions have been posted to us for medication for my husband and when my husband needed blood tests the specialist phoned our gp and arranged for these to be carried out there instead of travelling about which has made things much easier

My DH has azoospermia - slightly high FSH but everything else with bloods/genes/scans totally normal. He went on clomid for a few months which didn't make a difference to his test. Went in for a microTESE right before covid lockdown and were shocked on the day to be able to do PESA instead. The clinic found loads of sperm, so I assume there is an invisible blockage somewhere. We did a freeze all ICSI round and now waiting on doing an FET this month hopefully.

My advice if you stick with NHS is always to double check and chase any appointments to make sure they are with the correct clinic! We might have been finished this whole process a year ago if it wasn't for mis-referrals. I get the impression that it's not always obvious where to refer patients for MFI (after months of waiting we ended up at a fertility clinic where they sort of shrugged and said "we don't do urology here, you need to get another referral").

If you've got the funds, it might be worth going straight to private. The emotional strain of waiting around for everything (as I'm sure you know already) is awful. However, there is a sense of "well I've paid for the NHS through my taxes so I should get my allotted round first!" which I get. I'm very thankful to have gotten our embryos without paying anything except tax!

Just food for thought, we were not entitled to NHS as we already have a child. But, with a reasonable amount of pushing, we did manage to get some initial tests on the NHS - basic bloods, pelvic USS and sperm analysis. These took about 6 months to get done, GP didn’t seemed that clued up on interpreting the sperm analysis so we we took the results to a private clinic and we decided to go for IVF through them.

Probably a bit quicker as we had done the initial tests already, but we signed up in May 2020 and I was starting the process of meds by my next period in June.

Going private right now may not be right for you right now but it is worth looking at NHS wait times and considering whether you’re happy with that. I would say you are less likely to get poor admin going private.

Wishing you well in your journey x

Thanks all, that is really useful advice. I am so angry we did not go to a private specialist straight away two months ago! Such a waste of time. But hindsight, right. Will not be making that mistake again though, I want to know our plan of action before facing the family at Christmas! (Side-note: we are doing a strict two-week quarantine; don't worry.)

@mayihavesomecakeplease DH did also have ever so slightly above average FSH, but no other values were affected (e.g. LSH and testosterone totally fine) so GP read nothing into that? I am not sure if the GP has any clue though. DH asked him 'can I ever have children?' and over the phone the man goes 'well I am not sure'.

We did do all the other tests on the NHS by now, SA, ultrasound (both of us), blood tests (both); but it has taken since early summer. And I think you are right @ForeverAintEnough, taking some supplements may make it marginally less bad for IVF, but it doesn't look like it is ever going to be good enough to conceive naturally. DH had a count of 2 million (8 million total), motility ranging between average and none, and morphology of zero (not enough to count). Without any blockages or hormone issues and no medical history I doubt that is ever suddenly going to jump to being fantastic. (Waste of contraception all these years!)

@AnonymousXXIX it is just bad luck unfortunately. My DH has similar stats but his did improve to around 6 million once they got rid of his varicoele.

I would get DNA frag test, cystic fibrosis test and push forward for IVF. They only need like max 20 sperm say if you had 20 eggs which would be a lot so there is plenty there for that and if DNA frag is fine you could get lucky and it’ll work quickly. So all hope is not lost. Good luck!

Thanks I will look into getting those tests!

Just found out the reason they cancelled the appointment this week is because they rescheduled it for the beginning of November! But no one ever told us!!! I could scream.

@AnonymousXXIX it’s so so hard.
My DH also has azoospermia. His scan and blood tests all came back normal (he did have an op as a child though). They removed sperm through TESE.

We had ICSI and it was successful (after 3 fresh and a frozen transfer). We will be using our last frozen embryo in feb/ March.

Sorry to hear that you’ve had a stressful time so far. Really not good about them not updating you with your new appointment

Hi @AnonymousXXIX, I'm sorry you are going through this, you are not alone. My DH's results are very similar to yours though we saw improvement in motility after starting supplements. We had an appointment with the fertility clinic and they basically said we'll need ICSI. My DH was referred to a urologist a couple of months ago (still waiting for an appointment) but our fertility specialist said that this is separate to the IVF process. I take this to mean that the urologist won't be able to do much anyway...

Hi ladies! I wholeheartedly agree with you all re probing as much as possible, we’re MFI severely low count and no investigations were offered by our NHS clinic, after asking for his test results I could see elevated FSH and normal levels for everything else and pushed for a physical examination, they said his left testicle is a little smaller but nothing to worry about.

We then went to Mr Ramsey after seeing recommendations on here and within a few seconds he diagnosed a large varicocele and a scan confirmed it. We’d still be scratching our heads now wondering what the issue is had we not have gone to him!

@ForeverAintEnough May I please ask which type of surgery to remove the varicocele he had and if it was 3 months later is results improved? X

Sending you all lots of positivity and good luck, it’s so tough learning the art of patience and trusting it will happen!

@2021Hope he had the varicoele embolized.
www.guysandstthomas.nhs.uk/resources/patient-information/radiology/having-a-testicular-embolisation.pdf

3 months later his dna frag had gone from 52% to 23% and count from 2 mil to around 10 mil

@ForeverAintEnough Thank you, that’s an amazing improvement!!!

@2021Hope did he have al ultrasound before seeing the specialist? Because DH did and they said there was no sign of anything on that, so not holding out 'hope' that a specialist will find an explanation at this stage...

In others news we have had a series of misadventures with the NHS involving cancelled appointments and wrong referrals and basically we have been told to wait another two months to see a specialist now. Trying to push the GP to get us a referral for IVF in the meantime anyway because omg what!!!

What are your timelines ladies? From initial investigations, to bad SA results, to seeing a specialist, to finally doing IVF?

@AnonymousXXIX No he hadn’t had an ultrasound but there are so many tests available including infection screening, so much more than what a standard sperm test can pick up.

I honestly can’t recommend going to Mr Ramsey enough we had all tests done on the same day (we haven’t even told our NHS clinic as they’re not bothered and have never asked!). We took the train down to London and although it’s expensive when everything’s added up for the peace of mind of potentially finding answers it’s priceless. It was doing us more damage wondering why the results are as they are.

We have our first round in Jan after initially going to the doctors for a referral last December, but Covid has had a big part to play in delays so hopefully you won’t have to wait anywhere near aslong.

Mr Ramsey recommend proceeding with this round and if we don’t get many good blasts then we know the varicocele needs removing. X

For us it was 3 months from seeing the GP to referral and then 3 months from referral to initial consultation at the fertility clinic. During this time I had 2 blood tests and DH had 2 SAs, a blood test and ultrasound. I need to do some more blood tests and an ultrasound before we can start IVF so it will probably take a few more months.

Hi OP

My OH and I are in the same boat with Oligoasthenoteratozoospermia. I am 35 with only 7 or 8 follicles in last AFC, so its all looking bleak. May I ask what happened with you guys please if you dont mind sharing an update? Thanks

@CDiamond we got a call over Christmas 2020 that we had been referred to a fertility clinic. This was a whole saga because it was not one near us, so then they had to switch us to a different one, and all our info got lost, and .................. Anyway in March 2021 they had re-tested everything and recommended us for full funding for three rounds of ICSI. It took like what felt forever, and we got approval at the end of April with a letter saying to contact the consultant at the new fertility clinic once I got my period. This caused me to realise I was actually late (very unusual because I had regular 21-23 day cycles) and lo and behold I was pregnant...?!! We tried to follow up with the clinic to find out how this was possible, but no one has been able to explain. We're very grateful for our miracle baby, but also left with a lot of questions.

Health wise, the tests for me showed no irregularities; average (to slightly below average) egg supply and no explanation for my short cycles (no PCO/PCOS). The tests for DH continued to show low count on everything, albeit very slightly improved the last time we tested (up from 1 million to 7 million, but still all slowly swimming backward etc). They had him come back twice for ultrasounds and investigations in case it could be linked to anything like cancer, but have since told him they will stop monitoring it because they are no longer concerned. If I can convince him I would like to get him re-tested again this March to see if anything has changed the past year.

Bright side? I am never going back on the pill because that seems unnecessary lol. Downside? We have no idea if we will still need to spend a small fortune on a potential sibling for the baby, because we won't be eligible for ICSI funding any more now.

Ah thank you for the update. A bit reassuring that you do have a child now. We are just getting started on our journey.. fingers crossed.