u/Heavy_Possibility298

Follow-up on my main thread : https://www.reddit.com/r/maleinfertility/s/M0L15zHflb

I owe this community an update because a lot of you have followed my journey, answered questions, shared your own experiences, challenged me when I was going down rabbit holes, and honestly kept me going when things looked pretty bad.
Quick background for anyone new:
37M, NOA, biopsy-confirmed Sertoli-cell-only syndrome. Prior conventional TESE/biopsy found no sperm and no germ cells. Repeated semen analyses were azoospermic. My FSH has been very high, testosterone relatively preserved, and my recent inhibin B was <10. I also did an ESSM with Maze and they found nothing in two extensively searched samples.
Based on all of that, I went into today’s bilateral micro-TESE at Stanford with Dr. Michael Eisenberg knowing the odds were not great.
Today they sampled extensively from both testes. The right side was negative. On the left side they found a very small focal area and confirmed 5 sperm.
Five.
I know that is not a huge number,
Dr. Eisenberg told me the sperm heads looked somewhat abnormal, so I still have a lot of questions about morphology and usability. The sample containing the sperm has been frozen. He also explained that when the frozen testicular sample is later processed/thawed, sometimes the embryology team can identify additional sperm that were not seen during the initial search.
Separate biopsies from both testes were also sent to pathology. That report should come back in about a week and may give us a better idea of what is actually happening inside the tissue and how focal the spermatogenesis is. I will keep everyone posted

Five sperm is a very limited retrieval, and we still need to know how many are viable/usable after thaw, whether more are found in the stored tissue, and ultimately whether we can get fertilization and embryos.

For anyone with NOA/SCOS reading this after getting a negative semen analysis, negative ESSM, high FSH, very low inhibin B, or even a prior biopsy showing SCOS, my result does not mean micro-TESE will work for everyone. I do not want to give anyone false hope.
But it does show why a negative ejaculate search or a previous biopsy cannot always tell you what is happening in every microscopic area of the testis.
Thank you to everyone here who has supported me through this. I know I have asked a ridiculous number of questions over the last year. A lot of you told me to come back and update the group after surgery, so here I am.
Micro-TESE positive. 5 abnormal sperm confirmed. Left testis only. Frozen. Pathology pending. IVF/ICSI next.
I will update again when the pathology and embryology details come back

I had my ESSM appointment at Maze Labs’ Westchester location today. My appointment was scheduled for 8:00 a.m., and I arrived a few minutes early.
They normally perform collections on Mondays, but because of Labor Day, they arranged a special Sunday collection. I flew in Saturday night, provided my first sample at 8:00 a.m., grabbed a small coffee and a snack, and then provided the second sample about an hour later.
Overall, the process was straightforward. I’m happy to answer any questions about the appointment. The staff was very helpful !

For anyone who has had ESSM done at Maze Labs, how soon did you receive your results? I haven’t received an email, phone call, voicemail, or website update yet. since it’s a holiday weekend and I’ll have to wait until Tuesday for results.

Also, how detailed is the final report? Does it show the full search findings, numbers, motility, and anything else they observed?

i still remember the day i found out i had scos noa and felt like it was end of everything and had no1 to talk too, after a day or 2 or reading i did my first comment about my situation and got so much support from the community ! i have alot of respect for everyone and everything this community is doing for each other .

Mods: I wanted to suggest something that I think could make this sub even more helpfull, especially for those of us dealing with NOA/azoospermia and looking beyond the standard semen analysis → mTESE pathway.
I’ve spent a lot of time going through old posts here, and there is some incredibly valuable information and firsthand experience buried across years of separate threads. Unfortunately, a lot of it eventually gets lost in the sauce.

Would you consider maintaining three dedicated megathreads?
1. Extended Sperm Search / ESSM / STAR / Similar Techniques
A central thread for people who have undergone advanced/extended searches for rare sperm in the ejaculate.
People could share:
• Lab/clinic and country
• Technique used — ESSM, STAR, extended microscopic search, etc.
• Diagnosis and previous semen-analysis results
• Whether they had a previous failed TESE/mTESE
• Whether sperm were found
• Motile vs. non-motile sperm and whether anything was frozen
• Number of attempts/samples required
• IVF/ICSI outcomes, where applicable
• Preparation, collection and logistical tips
• Costs and insurance experiences
• Questions for others considering it
I’ve been surprised by the number of stories I’ve found here from people who had sperm discovered through an extended search, including some people who previously had unsuccessful surgical retrievals. Obviously anecdotes aren’t evidence that it will work for everyone, but these experiences seem important enough that they shouldn’t disappear into old Reddit posts.
It would also give us somewhere to keep track of the different techniques and labs offering them rather than having everyone rediscover the same information independently.

2. mTESE Megathread — Before, During & After
mTESE is probably one of the biggest and most stressful decisions many men with NOA face.
It would be incredibly useful to have one long-running thread covering:
• Who performed your mTESE / where
• Diagnosis, hormones, genetics and histology
• Preparation or medical treatment beforehand
• Surgical experience
• Recovery and pain
• Sperm retrieval result
• Pathology/histology results
• Freezing and IVF/ICSI experience
• Testosterone before/after
• Failed mTESE experiences and what people did next
• Repeat mTESE experiences
• Questions people wish they had asked beforehand
Right now, there are fantastic individual posts about these things, but you have to search through years of posts to piece everything together.

3. Male Infertility Research / Clinical Trials / Experimental Approaches
This one would need a very clear disclaimer because much of this area is experimental and should absolutely not be interpreted as medical advice or proof that something works.
But I think there is value in having a place to discuss and track legitimate research such as:
• Recruiting NIH/university clinical studies
• Experimental drug research
• Isotretinoin research
• PRP
• Stem cells / MSC research
• Spermatogonial stem-cell research
• In-vitro spermatogenesis
• New sperm-retrieval/search technologies
• Published studies and ongoing clinical trials
I’ve gone through a lot of these studies myself and have enrolled in a few research studies. One thing I’ve learned is that clinical studies can sometimes give patients access to researchers and emerging approaches that most of us would otherwise never even know existed.
Obviously, this would be the most speculative thread of the three. Ideally there could be rules requiring people to distinguish between published evidence, registered clinical trials, personal experiences, and pure speculation, so we don’t accidentally turn it into a thread promoting unproven treatments.

I know Reddit only gives mods so much pinned space, so these don’t necessarily all have to be permanently pinned individually. Maybe there could be one pinned “Male Infertility Resources & Megathreads” index linking to them.
I just think collectively documenting these experiences could become an incredibly valuable resource. Male infertility — particularly NOA — is already an area where patients often have to do a huge amount of research themselves. It would be great if the knowledge accumulated by this community didn’t disappear as older posts get buried.
Would the mods/community be interested in something like this?

this is a continuation post to a how i just keep winning the lottery on everything going agains me .
parent post : https://www.reddit.com/r/maleinfertility/s/e1jNXL985A

Hi everyone,
I’m trying to understand a genetic finding from my infertility workup and would especially appreciate input from anyone with experience in male infertility, reproductive genetics, AMH mutations, or Persistent Müllerian Duct Syndrome (PMDS).

I have non-obstructive azoospermia (NOA) and previously had a testicular biopsy showing Sertoli-cell-only syndrome (SCOS) seminiferous tubules containing Sertoli cells but no germ cells identified in the sampled tissue.

My hormonal picture includes:
FSH: ~30 mIU/mL (elevated)
Testosterone: ~710 ng/dL
AMH: previously 1.46 and 2.18 ng/mL
Inhibin B: previously ~202 pg/mL

I recently had whole-exome sequencing. No established genetic cause for my NOA/SCOS was identified, but it found a heterozygous likely-pathogenic AMH variant:
AMH NM_000479.4:c.476dup
p.(Glu160Argfs*14)

This is a frameshift/predicted loss-of-function variant.
My understanding is that pathogenic AMH variants classically cause Persistent Müllerian Duct Syndrome type 1 (PMDS1), which is autosomal recessive. Since only one pathogenic AMH allele was identified, I would normally be considered a carrier rather than someone with PMDS.

What I’m trying to understand is whether there is any evidence that heterozygous AMH loss-of-function variants can affect adult Sertoli-cell function or spermatogenesis, even when they aren’t sufficient to cause classic PMDS.

In particular, I’m curious whether anyone has encountered:
Heterozygous AMH mutations in men with NOA or SCOS.
Evidence that partial AMH loss/haploinsufficiency affects germ-cell development or maintenance.

Men with AMH/AMHR2 abnormalities who had normal testosterone but severe spermatogenic failure.
Cases where WES initially found one AMH variant and later WGS/other testing identified a second variant.
Any evidence that AMH variants influence micro-TESE sperm retrieval.

I’m not assuming the AMH mutation caused my azoospermia. My genetics report itself categorized it as a gene possibly associated with my phenotype rather than an established explanation. I’m mainly trying to determine whether this is likely an incidental carrier finding or whether there is emerging evidence connecting heterozygous AMH loss-of-function to severe spermatogenic failure.

I am repeating AMH and inhibin B now and also undergoing additional genetic testing.
Would particularly appreciate papers, case reports, or experiences with a similar genotype/phenotype.

thanks

Hi everyone,
My wife and I are currently prepping for an IVF cycle involving a fresh egg retrieval and an mTESE for my NOA (Non-Obstructive Azoospermia). The clinic is planning to time our procedures on the same day.
We are running into a logistical hurdle: we don’t have a family member or friend available to act as our "designated companion" on the day of the procedure. We live about an hour away from the fertility center, and I’m looking for advice from those who have been through this.
A few specific questions:
 Transportation: I know clinics usually have strict "no rideshare" policies for post-anesthesia discharge. Since we are an hour away, what has been your experience? Did you use a professional medical transport service, or did your clinic allow a medical courier?
 Waiting at the clinic: After the mTESE, is it generally possible to stay at the facility to wait for my wife’s retrieval to finish so we can head home together, or do they require you to leave as soon as you are cleared from recovery?
 Managing the recovery: Given the hour-long drive, any tips on making that trip home more comfortable post-procedure?
Any advice, feedback, or "lessons learned" from those who have navigated this solo (or without a personal driver) would be incredibly appreciated. Thanks in advance.