Azoospermia support - Part 2

[WhiskeyInTheJar33]

@2022ttc
@Ljp2022
@lemons44
@IslaO
@Carla2601
@TheFanciestPants
@HoustG
@Sleeter0893
@Creatingspace
@Nats140
@pomdownunder1
@Annies1992
@Lily1994

As the old thread is almost full, I thought I'd start up a part 2 so that we can all continue our journeys together!
Apologies if I have missed anyone x

Hi please can someone advise what the pathway is for ivf i'm getting so frustrated.

GP told me that I can't be referred for ivf as its male factor and has to be in oh's name.

Gp rang my OH today, said as he's been accepted to andrology he doesn't need ivf referral.

This really doesn't seem right?

@wateringcanface my husband had a referral for andrology. I took my husbands results to my GP and she referred us for the infertility clinic / ivf through me. I believe that's how it should work?

@wateringcanface Can't be referred for IVF until the issue on the male side is confirmed...that's why it's much easier / quicker going private for the male side first so once you have a letter explaining the issue to give to your GP you can be referred for IVF quicker.

@2022ttc
@donnie12

Thank you for getting back so quick. So frustrated I feel like crying.

So we have to wait 3 months for an appointment with an andrologist that confirms he can't ejaculate to then be put on a waiting list for the ivf?

The urologist could confirm this, could we not ask him to do the referral?

I worry this could add several months, as I imagine the andrologist won't go ahead and do the referral straight away, he'll want to do various lengthy tests.

Also, just confirming the referral is through me, not oh? As gp suggested that andrology is the referral for ivf which seems very wrong

@wateringcanface - despite having the referral (since September) I don't even have n appointment yet. I keep chasing and they said I need to wait 3-6 months. It's so upsetting so I feel your pain

@2022ttc

It's awful.

Sorry is that 3-6 months for andrology or ivf ?

@wateringcanface 3-6 months for my referral for the infertility/ivf clinic. My husbands andrology referral is 9 months!! But we have gone private instead as with those timelines I think I will go insane waiting around

@2022ttc

Thank you.

9 months is ridiculous!

Definitely the best move to go private in your case. I'm gonna have to have a think, at this rate if we cant get referral till after the andrology appointment its September next year minimum on the nhs which seems too long to wait

@lemons44 that's great news about starting IVF again. I have no idea how this part works. What is the access fertility thing you mentioned? I think we will want to do a synced mtese and ivf at the same time if this is an option. We have also been talking about donors and I think we will have a backup donor just in case. Husband has actually been pretty accepting of this. He's been talking to other men with azoospermia who have donor children and this has really helped.

@wateringcanface your recent experience of GPs is so different to ours. I can't understand how the pathways are so different. Husband had his first SA with azoospermia 2 weeks ago. GPs then asked for a second SA from the fertility clinic straight away and he had this done this week 2 weeks after the first (also shows azoospermia as expected). In the meantime since his first SA the GP had requested all the necessary tests for myself (hormone bloods and chlamydia test) and my husband (hormone bloods) for referral and primed the secretaries to start prepping the paperwork. We were told not to bother getting referred to andrology or urology as the waiting list is too long and that fertility can do an ultrasound and request the genetic bloods then by that point if we want we could go privately while they still look into anything I may need doing for IVF. The clinic do tese but not mtese and we have rang round the specialists who do mtese and the waiting lists for NHS are way too long so would definitely be going private for this bit. We were also told that as soon as the paperwork for referral has been sent off it should be accepted within 2 weeks and then we can get an appointment with the fertility services pretty soon after that (they called the day after referral to book my husband in for a SA so we're hoping they will be quick again but no idea on this). I'm just waiting for a progesterone test and chlamydia test on Monday then the week after an oestradiol test as they forgot to request that originally and then the GPs will send the referral off apparently. All of this has happened through a lot of hassling on my part. They have always said yes to whatever I've requested them to do but sometimes I had to push them such as with OHs hormone tests. I also ring up and email occasionally just to check what's happening. I've now got a lovely secretary who is in charge of our referral and she has been amazing so far squeezing me in for bloods.

Of course this hasn't all happened yet so it may not work in this way however that's what we've been told so far. Do you need to be referred to andrology or are you planning to go private for this bit? If you are, does your fertility clinic deal with genetics and ultrasound? I'm not sure how it works in your area but this is how it seems to work here. I can let you know if this happens as and when it does!

Does this pathway seem similar to anyone else in the group? Did anyone have an mtese on the NHS or just private? Husband likes the sound of Dr Pippa and said her secretary was really nice on the phone.

@wateringcanface I imagine every area is different. DP and I are registered with different GP surgeries. DP was referred to urology (9 month wait - so we went private with Mr Ramsey). My GP referred us both to the "infertility clinic" at our local hospital (they don't do IVF but they are the ones that refer). At my initial appointment they just reviewed my bloods but as I explained we were awaiting the results of the genetic tests for DP they booked another appointment for when I'd have those results. The follow up appointment (over the phone) 4 weeks later, I advised them of DP diagnosis and my gynae consultant replied "well that's why you're not getting pregnant, you need ivf with donor sperm, so you'll have to arrange that yourself". I was flabbergasted at his response!!! So i responded... "with all due respect, you're just a gynaecologist who clearly had very little knowledge of azoospermia. I suggest you read the IVF criteria and refer us for ICSI and SSR". Consultant continued to argue that DP had no sperm , I just kept cutting him off 🤦🏻‍♀️ we'd been given a 50% chance of successful micro-tese. Consultant agreed to refer if I could get this in writing from Mr Ramsey. Once referred for IVF, our clinic has tried everything to improve our chances so it's been a long process (2 years) but DP wants to try everything on the NHS before going private.

@Runner77 fingers cross for you!

@lemons44 good luck for your upcoming cycle! Be interested to hear how you get on with access packages. Have looked into these if our nhs funded cycles don't work.

@jaspercats

Hi Jasper, it seems like you are really on the ball and on top of things. Nagging seems to be working well for you, keep at it!

Our timeline so far has been.

-OH had surgery in February (proctocolectomy), we planned to start ttc pretty much when he was recovered which we hoped would be in the summer.

-He was unwell for a while afterwards and developed pneumonia and a pulmonary embolism, as he was temporarily on deaths door, we put baby making plans aside.

-April, he was starting to feel better, and that's when he bought up the no ejaculation issue and mild ED. This timed roughly when he had his review with the surgeon, the surgeon referred him to urology.

-April, this is when we went to the GP told them of our issue and how we want to TTC, GP ran our fertility blood tests, but did not make a referral.

-May, we had a private consultation, they did an ultrasound, health check with me, they did not do anything for OH. Private doctor said to wait for urology before making any treatment plans, and also strongly advised against going private as we would meet NHS criteria.

-June, had his urology appointment, they prodded at him, gave him a pill to help with ED, and did not address fertility issue. Few weeks later, we rang back and asked them to do a sperm/urine analysis, this happened in July. (luckily the ED has sorted itself out)

-July, got the results back, said no sperm was found in urine, they offered no further insight or recommendations. OH said in person, the urologist mentioned andrology. I rang around clinics near us, was told there is only one andrologist and he'll need to be seen by him. OH wrote to the urologist, said we were wanting to have fertility treatment and can he refer to the andrologist. Urologist did so, and we got a letter from andrology for an appointment in Jan.

At this point, we thought this was the IVF referral was underway too as we specified we were wanting fertility treatment.

Put it aside for a bit, as had a very busy September and October

In October, came on Mumsnet, and was advised that we probably weren't on the IVF waitlist, as andrology is separate. I rang fertility clinics, and they told me I would need a referral for me as Id be the one receiving the treatment.

Made GP appointment, I got seen this week, they told me they cannot refer me as it's a MF issue and told me to tell my OH to make an appointment, so he did. GP rang my OH and said "you would not have been accepted for andrology if you did not meet fertility treatment criteria" - annoyed at OH as he didn't question that. But I've pointed out how would andrology know that? They don't know me, they don't know if I've already got kids, or if I am over the BMI? If I smoke? etc.

So here we are, several months down the line and not even worked out how to get an IVF referral yet 🙄

we are limited in what we can get privately because of where we are in the country, the nearest private andrologist to us is 3 hours away.

No idea about genetic testing, I'm hoping we don't have to bother as his infertility is an acquired issue from surgery complications.

I'm going to ring the fertility clinics on Monday and clarify, I'm sure the GP has got it wrong, and that andrology is just diagnostic and trialing some potential treatment options, but them themselves do not provide the IVF.

Sorry, my posts are very self-indulgent, I just want to get to the bottom of this issue as I feel so lost, and I'm generally fairly good at problem solving, but this just seems like I'm being given so many conflicting messages!

Has anyone had any success with Dr Kalsi and the microtese?

@WhiskeyInTheJar33 😮that is awful from the Gyno, I hate it when people say things so flippantly like "oh you'll just have to get a donor". This is my problem with the NHS, absolutely no thinking outside of the box or problem solving.

@wateringcanface my GP said the exact same thing when I took my husbands SA results to her. She said going down the donor route is probably your best option to which cried I replied saying no, actually there are other routes to explore! I was so upset and annoyed and really felt like with this diagnosis you are left to fend for yourself

There was never any point we have only ever had 2 to freeze in 3 cycles so the advice was not to bother

@2022ttc awful. I think it's really minimalizing to men, that the importance of them having their own genetic children and their contribution to growing a family is reduced to "ah, easier just to use someone else?" - Obviously, it's amazing that there is the option for donors, but it is not a flippant choice to make.

Speaking of donors. Does anyone have any thoughts on egg sharing? You can get a round of IVF free, you just have to pay for the icsi bit and a contribution towards medication. We would also obviously have to pay for the SSR.

I have trialled through Mumsnet on it, and there has been some threads discussing the ethics of it, likening it to organ selling, even prostitution and it being coercion and exploitation of vulnerable poor women etc. I imagine most of the comments come from people who have not required assisted reproduction.

I am quite tempted because.

1. I looked into egg donation a few years ago for fully altruistic reasons, only reason I didn't go ahead is I was put off by how time consuming and invasive the process was, but since I must go through the process anyway, I may as well benefit from it financially?
2. When I first saw the information about egg sharing, my first thought wasn't "oh wow that is cheap", it was "that sounds really nice that I could help someone". We can afford the full cost of private treatment so don't feel as if we are being exploited. But obviously the reduced cost is very appealing.
3. I think if it came to it, and I couldn't use my eggs, I would want a donor's eggs, so it seems a bit strange to be morally against donating my own eggs, but happy to take someone else's?

I have contacted create fertility, we obviously need to find out more, and discuss the implications but so far, I think it may be a good shout. We have discussed doing one round with possible egg sharing, if that is unsuccessful, we will then use the two NHS rounds end of next year.

How much were people paying for private SSR and what are the waiting lists like private? The two closest to me are £2500 and £1500, don't why there is such a price difference. Going to ring around tomorrow.

@wateringcanface What's your partners FSH again?? If it's high suggests testicle failure then he needs microtese not a standard tese....microtese is a minimum £5k+ and only a few urologists offer this in the UK (less then 10).

If his FSH is normal then it would most likely be OA suggesting a blockage so normal tese would be fine.

@donnie12

Fsh is normal, we don't think he has testicle failure or a blockage, his issue (we think) is that he had nerve damage that prevents him from ejaculating. So we are assuming his sperm production is ok (hopefully). So we think standard Microtese should be fine for us.

Hi @wateringcanface yes you are correct. We have been incredibly lucky in passing through the biggest obstacle. Now we are just like any other couple going through IVF really. This fact hasn’t been lost on me. I remember praying to the universe that I would get to use the progesterone pessaries last cycle as that would have meant we found sperm and were progressing. Strange wish isn’t it!

Good advice re symptom spotting. I’ve been trying to keep busy and not obsess about it too much. Only a day to go until OTD, so nervous.

@WhiskeyInTheJar33 thank you! Hope you are doing well.

Sending lots of hugs out to all of you. So many tough journeys that you and your partners have been through.

Keeping everything crossed for you @Runner77 xx

@wateringcanface I think you considering egg sharing is lovely 💗 I haven't considered it myself but that's because we haven't managed to get any day 5 embryos yet.

Just putting this email below from access fertility for information. It's useful to know they do finance options.

Has anyone had any success with Microtese. Husband is on clomid and proxseed and has his operation on 21 December at the Lister Hospital

@Nats140 my DP had successful microtese in August. 3 vials of sperm found and frozen. He had been on anastrozole.

A little update from me. Had my initial consultation to start IVF and am now on the wait list and should hear in January. Will be doing short protocol with a freeze all due to being at risk of OHSS. My AMH is 28pmol/L and AFC 22 (not many follicles on my left ovary as they think there's lots of scar tissue - not sure where from). Will have to wait 2-3 months between egg collection and an FET. Felt a bit disappointed about this which surprised me considering I'm not mentally ready yet! But keep telling myself the break in between will give me some time to prepare.

Quick question to those that have had a cycle already - what was your AMH/AFC and how many eggs did you get?

@lemons44

thanks for sharing. It is good they offer payment arrangements; I imagine paying later though would be feel like a big blow if you were unsuccessful. But it is all a bit of a gamble I guess.

@WhiskeyInTheJar33

Good that you have your plan in place, do you mean you should hear to start in Jan, or hear where you are in the waiting list in Jan? I am also confused about why they would need to do a freeze all, can they not just wait to see if you do have OHSS before committing to a freeze all?

Update with us - OH had his ultrasound, they found "thinning of his ball tubes" (his words), basically thinning of the epididymis/vas deferens, there are no blocks or other abnormalities. They cannot diagnose, but they suggested that the thinning is likely due to sperm not being released from the testicle. Which supports that it is nerve damage and that the reflexes involved in ejaculation have been damaged.

They suggested again we really should have had a CT scan from the urologist. I rang the urologist's secretary, and she was so rude. I said that we have been advised by other medical professionals that for his symptoms which were urinary flow issues, ED and dry ejaculation, that one physical assessment (feeling his testicles and penis) isn't adequate to have even the slightest clue of what is going on, and he should have had some sort of scan, and she said "well that is you telling a doctor how to do their job" - it's just common sense isn't it? They just gave him stiffy tablets and sent him on his way. She said, if you want him to be seen by a urologist again, go to your GP with new symptoms and on-going complaints, but you can't say you need a scan as that's a doctor's job to decide.

The urologist didn't even refer to andrology until we wrote to the secretary and told him the name of the andrologist and why he needs referred.

I am assuming the andrologist will arrange a scan (and I'm assuming they'll be annoyed that one has not already been done by urology). I am optimistic for the clinic we are seeing the andrologist at as every time I have rang they have been very helpful.