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

@HR01 Amazing to read! Great news

@springflowers2023 Congratulations! Think we will have to go through the sperm donor process ourselves in the coming months....was the process pretty straightforward in terms of purchasing the sperm etc? Have you told friends and family and how have they reacted?

Think we are both okay with the sperm donor thing except for telling the family which we are both extremely nervous about.

Hope everyone is doing well. @wateringcanface I completely understand wanting to discuss different options. There are just some many unknowns in this process and no guarantee that we will end up with success at the end of it. I did also try raising the option of donor sperm with my DH before his procedure but he said he didn’t know how he would feel about it until that became the only option, which I can understand. It’s hard to talk about hypotheticals. He did mention feeling strange though that I would be biologically connected to the child but he wouldn’t, so it seems he would almost prefer adoption or a double donation.

My advice is just to take each step as it comes and try not to think too much about all the various possibilities.

@lemons44 good to hear you have a plan for progressing. If it provides any comfort, our specialist felt that using fresh sperm was slightly better than frozen, although it was more of his gut feel. We originally used fresh sperm and my frozen eggs, but now we are doing the reverse this cycle as we have enough frozen sperm to work with.

Thanks @Runner77 💗 how are you doing?

Just want to share this today with you all as I know you will understand why this makes me so happy. Yesterday out the blue, my husband told three of his work colleagues about his azoospermia. We've told our family but I didn't think he'd ever get to the point of telling anyone else. I am just so, so proud of him.🥹 I've always said there's nothing to be ashamed or embarrassed about, we are just good people with bad luck. But he's always been so embarrassed. So this feels like a big step today xx

@lemons44 that's so lovely, I'm really happy for him and you both - being able to open up about it is a huge milestone and it's not an easy conversation so well done to him!

Hi all sorry I haven't posted on here for a while or been keeping up to date with all the posts as been struggling alot mentally. We have just been told my husbands azoospermia is non-obstructive and the consultant was quite negative about SSR and almost trying to put us off because of the low chance of it working with his FSH levels. We are devestated as we were feeling quite positive about SSR and now we need to make a decision as to whether to go ahead with it or go down the donor route. We are devestated and have no idea what to do and I'm so scared we will both have different opinions on what is best

@lemons44 thats so good that he has opened up. I found when my husband started telling people he felt alot better and I've felt more able to tell people as always felt like if he doesn't want to share it's not my thing to share but at the same time felt I needed to talk about it

So sorry @Sammysquidge that you had such a negative appointment. Did the consultant give you an estimated percentage of chance of finding sperm? When the consultant was talking about surgical sperm retrieval was they talking about microtese?

I think the key thing to remember is you don't need to rush to make any decisions. Maybe both of you need to sleep on it for a few nights before you both talk as both your minds are probably very overwhelmed right now.

xx

@lemons44 he didn't say if it would be microtese as they don't actually offer any SSR at our local hospital so we would need to be referred to London if we choose that route. He said they say its about a 20% chance of it working but in his opinion the chances will be alot lower based on my husbands results.
He said he wouldn't personally recommend SSR but that it's our decision what we choose. We have a follow up in 3 months so we have a bit of time to process and decide but we have had so many issues along the way and been waiting over a year now just to have his diagnosis explained that it's taken it's toll on both of us xxx

@Sammysquidge so sorry your consultant has been negative about SSR. What are your DPs FSH levels? Are his other hormones normal?

@lemons44 so happy your DP is telling people! It's soo hard for our other halves and it's nothing to be ashamed or embarrassed about. My DP has been open about his diagnosis with 3 of his work colleagues and immediate family only. When he had his micro-tese and they found sperm, he said to me he might start telling more people. It was like a big weight had been lifted and he felt more manly again 😢

This is amazing you have just given me hope and thank you for sharing and congratulations on your success!

May i ask which hospital. You did your treatment at?

Hi All! Found this thread last weekend and its been so helpfull to hear all your stories.

I have been going through a simmilar situation for about 2.5 years now. And as a lot of you have said it has been mentally and physically draining.

My story so far in the hope it helps some of you!

After a year of trying my partner was actually the one who felt there was something wrong and went and got tested first! I remember the day we got his results and went into shock, something you don't expect would happen to you. The results actually did find some sperm but it was borderline azoospermia. Too low to do any tests on.
We were referred to Chelsea and Westminster for IVF treatment! After further tests by NHS urology team my partners infertility was deemed unexplained so they just told him to bank his sperm prior to starting IVF so that we would have enough and were told it only takes 1 sperm.

Egg collection day was a bit of a desaster, the pain medication was slow to react on me so i practically felt the whole procedure and remember screaming with pain! Dispite this my partners fresh sample showed up 0 sperm and so they went to use the back up sperm he had collected.

On the 2nd day when we received the call we could have not been more devastated. Out of 14 eggs collected, 11 of them mature we only had 1 egg fertilised. We were advised to come in for a 3 day transfer to give the one embrio the best chance. Unfortunately it didn't work! This was last year January.

In our follow up appointment i was advised we had possible egg quality issues as upon injecting the eggs with the sperm a lot of eggs had desolved.
I am now on 600mg of Coq10 to help with this and have started Accupuncture.

We decided to take a break and seek further advise as we were quite unprepared for such terrible results and were really unhappy with the Urology side of things where we were.

We came upon several threads mentioning Dr Ramsey so we made an appointment with him to get a 2nd opinion.

We brought all our results to him which was so informative!

1st he mentioned that his hormone levels were not actually normal dispite the previous urologist saing they were.

2nd he found a Varicocele despite the previous Urology team no detecting it even through ultrasound (this resulted in a furthe ultrasound which found a small varicocele but were told its unlikely it would change anything if we were to remove it)

3rd after further conversations he belived that because myself and my partner were really ill with high temperature (possibly covid) during christmas that this would have had a negative effect on sperm and egg quality.

4th He requested Y chromosome tests which came back negative.

He also prescribed my partner with Anastrozole and said he had really high hopes for us.

Leaving his appointment we felt we had a new lease of hope and felt like something could be done.

My partner was on Anastrozole for 3 months, i read a few of you asked if their partners had any side effects. Mine definatelly did. He suffered from depression, low moods, sore joints, tierednes, loss of sex drive and lost hair on his head which he is managing to recover now. Dispite this his sperm sample after 3 months came back with no sperm and so Urologist expedited a micro tese operation as our last option.

Even though he has Non Obstructive Azoospermia doctors were hopefull as he has had sperm previously in his ejaculate.
Micro Tese went ok and we have 4 vials in the freezer. We are still waiting to hear what this really means.

We arranged a telephone consultation with Dr Ramsay to get his advise and he advised for embriologists to use all 4 vials for best quality sperm and to have back up sperm donor in case not enough sperm are found or they are not of good quality.

We have spoken about donors before and we are now at a place where we are open to it as we just want this nightmare to end. Our issue is that my partner is black affrican and the amount of sperm donors out there that fit this profile is very low so that is another problem. We at least want our child to have simmilar features etc. Feels like it is one hurdle after another!

So thats my story up until now. It is going to be 1 year since our 1st failed IVF treatment and we are looking to start again in January with renewed hope.
One thing i have learned from all of this the NHS are very underdeveloped when it comes to treating our sort of cases and it seems that unless you don't ask the right questions no one is prepared to give you advise or answers freely! We feel like our only free IVF round was waisted due to the lack fo information provided by specialists and it is so frustrating.

I really wish you all the best in whatever stage of the treatment you are.

That’s brilliant @lemons44! It certainly seems to be harder for men to open up to each other and talk about MFI. I hope he is feeling a little lighter for sharing his situation. I’ve found that my DH doesn’t really want to talk to me about it, or about the IVF in general, but has mentioned it to a few mates. Interestingly one friend confided that he only has one testicle, and another told him they had to do IVF.

I’m doing well thanks, feeling fine but looking forward to an end to the injections. EC will hopefully be Wed or Friday.

@Sammysquidge sorry to hear, that sounds really disappointing. Are you able to get a second opinion perhaps?

Sorry to hear you have had such a tough time with it.

I completely agree about the nhs. They are great for emergency situations, but anything that requires a bit of problem solving and thinking outside the box? Nope.

Sorry if this is patronising and you've already considered, but if you are having difficulties getting doners to match your profile in the UK. Are you able to get them from other countries ? Like America perhaps

It is C (which I believe is the ‘best’ deletion to have) but yes the waiting is horrible. I feel like the last two years have just been one long wait - but I’m sure it’ll all be worth it in the end 🤞

I’m nearly 32 and my other half is 34. I think at our next appointment (which is a phone appointment) a TESE will be discussed - does anybody have any idea on the wait on this? This is NHS ☺️

@Nilu17 thanks for sharing your story. All the best at January

@hjg17 DH has the same deletion. I’ve only had one NHS appointment this month, and we had sent them all the results prior to the appt. The appt was pointless as he said we needed to book an appt with the andrologist, which is booked for next month. Based on the research I’ve done, MTESE would be better than a TESE in our case. Me and DH are 29

Thank you so much to Lemons44 for directing me to this group. I have just read all of your messages and I'm so sorry that you are experiencing this but also so grateful you are sharing your stories.

My partner was diagnosed with obstructive azoospermia last year. We got tested after 6 months of trying because he had surgery as a child and only had 1 functioning testicle. This is something he has found difficult to come to terms with his whole life and has only ever shared with serious partners. None of his friends or family know outside of his parents and as a result he doesn't want to share our IVF journey with those close to us either.

After his first test result showing zero sperm it took 10 months for the NHS to get him booked in for SSR. This is with us paying private for all the tests and consultations. However we were lucky we got 9 Straws and the clinic tells us they are not struggling to find good looking sperm however we haven't been successful as yet.

Is it worth speaking with another urologist to see if the obstruction is possibly fixable? Has anyone ever heard of this before?

My history is:
Cycle 1 (January 23) - 13 eggs collected, 12 mature, 4 fertilised. 2 made it to day 5 they were borderline C quality and they advised us to transfer both which we did. Negative test.

Cycle 2 (April 23) - 12 eggs collected, 11 mature, 6 fertilised. This time I asked more questions and found out on day 3 I had 3X6 cell, 2X5 cell and 1X 4 cell. Day 5 we were so hopeful we found out we had 1 A grade and 1 C grade for the freezer. Negative test.We did a non medicated FET after that. Negative Test

Cycle 3 (October 23) - We increased the drug dosage to try and increase egg collection numbers. But I did have 2 cysts that month 1 internal and one external. Ended up with 12 eggs collected, 11 mature. Again 6 fertilised. Day 3 we had a 4, 5, 6, 7, 8 and 9 cell. So I was again hopeful as that seemed better than last time. But on day 5 we had 1 embryo (The 4 cell had made it) it was a C grade. Day 6 they decided to freeze another C grade that was a bit slow. Negative test.

We have our day 6 C left to transfer which I would like to do this year.I have always had very painful periods and suspected something is wrong with me, and perhaps that's why nothing is sticking. But the clinic doesn't feel I should do any more testing or anything just to keep trying.

@wateringcanface

Thanks for your message. I have been looking online at sites abroad and in America but it is a bit of a minefield. If you know of any places id be very greatfull. A lot of places have viles available for IUI but not for IVF. Anyone know if they can be used also? Otherwise the options for us get even smaller.

@Bran90

Thanks for sharing your story. I don't know how you managed to go through all of that in 1 year! Did you ever manage to do any genetic tests on the embrios prior to freezing? I wonder if that would help to rule out that side of things.

I think a 2nd opinion never hurt anyone! I know a 2nd opinion did us a world of good so even just going through your history and results with someone else might come up with some things you could do.

Hope everyone is enjoying the weekend. @Bran90 thanks for sharing. We have a few similarities with your situation, my DH has a similar medical history to yours and was also coy with talking about it. You have certainly been through a lot, the negative tests must have been gutting. Did your clinic provide any insights as to what might be going on? We had a big drop in numbers from day 3 to day 5 and our consultant mentioned something about surgically extracted sperm having a more difficult time.

@Nats140 this thread is nearly full. Come and join us on the new thread:

Azoospermia support - Part 2 www.mumsnet.com/Talk/infertility/4925174-azoospermia-support-part-2

@Nilu17* * Sorry I have no specific recommendations. I only knew it was an option as I remember stumbling across a Mumsnet thread about it, someone who had a similar issue that UK based sperm doners did not match the ethnicity. I often use the search function of Mumsnet to find solutions to things 😆

I have been off work the last week with the flu which has not helped me keep my thoughts at bay regarding this whole fertility ordeal. I'm actually keen to start work just so I do something other than google and mumsnet search.

It has crossed my mind that instead of retrograde ejaculation, he has had such a severe blockage that it has prevented the flow of any semen from coming out, which would explain why the semen isn't going into his urine, which is what typically happens with retrograde.

When he had his surgery (proctocolectomy) he complained that the catheter did not feel right and was painful (he had been catheterised before) he had difficulties with the flow of urine for several weeks after and suffered a blood clot after the surgery which turned into a PE. As well as the retrograde, he has said something in general doesn't feel the same down there. He even described a sensation of feeling like there is some kind of obstruction, but said it is a difficult sensation to articulate as it is so unfamiliar and mild.

If it is an obstruction, this is good in one way, as it means that there may be surgical intervention that means we can try naturally. However, this also worries me, as from the time it will take them to investigate, to operate, to recover and to give us a window to TTC naturally, this could add several months of waiting.

I obviously hope there is a cure, as that could mean that that for any future conceptions we could try naturally (I know, I'm getting ahead of myself) but at this point, I hope they don't use the potential for a cure as a delaying tactic for fertility treatment, as I would honestly rather go through IVF than wait several months for the potential of natural conception.

@wateringcanface Sounds like he needs an ultrasound scan if not already if you think it's a blockage. If you can afford it I'd go private as you will be waiting ages for NHS. I believe it's around £250-£400. Worth it imo.

Has he had his hormones tested? If so what's his FSH?

Hi @donnie12 Most of this has been us speculating. The nhs has far given us no diagnosis, or no interest in finding or even suggesting a possible diagnosis. We have only got as far as getting an andrology referral as we have pestered and directly told doctors that they should be investigating/referring.

We initially thought it was retrograde ejaculation, as it was after a surgery and one of the only explanations that came up for dry orgasms when we researched. The surgeon that did his proctocolectomy was surprised as he had never in his many years of doing this surgery has had this happen as a result of a proctocolectomy.

With retrograde ejaculation, the ejaculate is meant to go into the bladder. He had to give a urine sample after climax, but they found no sperm in his urine. Which made us worry that he had both azoo and retrograde. Now we are considering that the semen is not even making it far enough to reach the bladder neck and there's a block further down that's blocking the flow of any semen/ejaculate...but then I wonder where its going 🤔.

We are willing to pay privately for some investigations, though he's due to be seen by andrology in Jan. I guess if we sort this part ourselves it saves them a job?

His results where as follows

Testosterone 23.3

Fsh 5

Lh 8

Does anyone know if my husband decided to have microtese will they freeze his sperm if they find any viable sperm or prepare me for IVF and then fertilise my eggs with the fresh sperm straight away? Or does it depend on consultants and situations etc we are trying to figure out how all this works so we can make a decision about going ahead with it all 🤯