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Old 06-19-2008, 11:46 PM - Thread Starter
 
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It's been a long two and a half months since I posted this. After a second zero sperm analysis result, the urologist found a lump on his left testicle. Turns out it was testicular cancer. After freaking out, I was able to find a surgeon who would combine TESE (testicular sperm extraction) with the orchiectomy (testicle removal). Basically they removed the cancerous testicle and were able to harvest thousands of sperm straight from it! They're now frozen up at Cornell waiting for us. DH starts chemo a week from today and then they have to decide if he has to have the right testicle removed as well - an ultrasound showed suspicious results. That could mean that the TESE was our only chance at ever conceiving our biological child. The prognosis is very good at this point, over 90% I think. I'm just ready for him to get the "All Clear, " you know?

So in a way TTC may have lead to saving his life. The remainder of this year is focused on him healing, but we will start thinking about IVF with ICSI next year at some point once he's better. A lot to look forward to during the trying days we have ahead of us.

Just wanted to touch base again since I disappeared in the madness of it all. I'll really need a lot of advice on the IVF front when the time comes - it's all new to me. It's great to be back.


DH found out this afternoon. His testosterone is also low. They did a CT scan and more bloodwork. He's supposed to call back tomorrow to schedule an ultrasound. The doctor really focused on his lymph nodes, so of course thinking about potential cancer is scary. He went to the urologist in the first place because his routine annual physical showed low testosterone and a small amount of blood in his urine.

So we're heartbroken. It explains the last twelve months and it makes all the months of hoping and chart scrutiny so pointless. I also think back to all the years of trying to prevent - hormonal bc for five years then a copper IUD.

I've heard of low sperm counts before but not zero. He said the doctor was really clear about it. He's only 33 and in seemingly good health otherwise. No major illnesses or injuries. I just don't know what to think or do. My eyes are on fire from crying so much. I felt my stomach just fall when he told me.

Anyone have experience with something like this? Or any advice? I'm definitely going with him to his next appointment so I can ask more questions.

I just feel robbed.

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Old 06-20-2008, 12:33 AM
 
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I'm sorry you have to be here. That is a really hard thing to hear. But try to remember that sperm counts are very fluid, and just because he had none today doesn't necessarily mean he had none yesterday, or that he will always be at zero. I found a chart years ago - and of course haven't been able to find the link since - that tracked the sperm count of a healthy man and showed the count fluctuating from normal to zero. And my dh's count has been down to zero in times of extreme stress.

My dh has unexplained low count and poor morphology. Motility ain't so great either. Not the trifecta I ever wanted to win. We thought for awhile that his testosterone was low, but it turned out we were at a urologist who didn't know diddly squat about male IF (the old men in the waiting room should have been my first clue) and gave him the wrong test. : So the clomid that he was prescribed did its job and raised his testosterone. Which killed off even more sperm.

BUT, if your dh really does have low testosterone, clomid can be very effective. There may be other treatments by now too - our experience is several years old.

Also, there may be immature sperm in his testes that can be extracted and your eggs fertilized through IVF with ICSI. It is a surgical procedure for him, but, from what I understand, fairly routine.

All this is by way of saying there is a lot of reason to hope. IVF with ICSI worked for us - twice - and it was worth every penny and every bit of heartache.

Wife to Thomas, WAH mama to Sofia Rose 8/04, Ellen Marie 10/07, her twin sister Amalie Joy lost 7/07 , and Maya Grace and Hannah Miriam 4/10
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Old 06-20-2008, 06:13 AM
 
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First, for you and your DH. I'm not in the same boat, although we do have a different male-factor issue, but I wanted to respond because there are a few people here that I know of who have had that same experience (I imagine they'll jump in here). There are 2 who have DHs who have congenital bilateral absence of the vas deferens -- which is often, but not always related to being a carrier of one of the cystic fibrosis genes. It's a fairly rare condition, but something to have ruled in or out. In the case of CBAVD, immature sperm may be extracted (as Dena mentioned) and used in conjunction with IVF with ICSI. I hope that the doctors are able to find some answers for you both .
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Old 06-20-2008, 09:39 AM
 
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big huge hugs for you...
I'm so sorry about this diagnosis. I don't have anything to add, the PPs added what I could think of already, but I still wanted to post my support for you and your DH.
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Old 06-20-2008, 10:20 AM
 
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I'm so sorry to hear this....

I understand all too well about the wasting of time... DH tried to convince me to get the testing started some 6 months before I was willing... I just kept charting, OPKing, bding, you get the point. He knew it would be him (something he was born with and had surgery for at 5 called cryptochordism), but I just didn't want to hear it, and I wished afterwords that I had just listened to him as it made it worse thinking that we wasted all that time.

As PP's said, IVF with ICSI is still an option if they can get some immatures out, or if on a follow up SA they find he has some (even if minimal). Depending on the reason his count is so low, they may be able to do something to help bring it up too. For us we can't get dh's numbers up, he has what he has, period. But, jumping to IVF with ICSI has been good and bad for us, it's the last stop for a bio, but you're no longer going through a bunch of attempts that just won't work for you and your situation.

I'm praying for you that you can figure out why his #'s are nonexistent, and then hopefully do something to pull them up, or at least find some surgically. There's still hope, just remember that. In the toughest of times, we all hang onto that slim hope that we can do it with whatever means we have available, and get that bio child that we all so desperately want.

::


Me: 34, DH: 36, DD born 7/25/10 After 4 years of trying and failed IVF treatments (missing my angels).  IVF/ICSI worked this time! DS born 1/8/13!



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Old 06-20-2008, 12:26 PM
 
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Just want to post a big for you and your DH, bungalowmama. I'm so sorry this is happening. We are hear for you, please keep us updated. Sending calm, peaceful : to you

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Old 06-20-2008, 12:49 PM - Thread Starter
 
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Thanks for the support everyone. I'm feeling a lot calmer today. Last night was just the first time I ever considered the possibility of not being able to have a baby that is part me and part DH. Like so many people, I've always imagined what our babies would look like together and what personality traits they would have. I still have hope it may happen, but thinking about the possibility that it may not was hard to deal with, too.

I forgot to mention that the reason for the lymph node checks, ultrasound, etc. was because the doctor felt something on his left testicle - I think at the top back of it. He's never had any pain down there so I'm hoping to God it's not cancer. That's the scariest possibility. We were both sad about the sperm issues last night, but I reminded him that having him healthy is the number one priority. Babies are second right now. It's a painful thought.

I'd never heard of CBVAD before so I'm definitely researching it and will bring it up with the doctor. I guess the only way to diagnose that is to test for the CF gene mutation? And I'm sorry for being clueless, but what is ICSI? I'm familiar with the concept of IVF but that part is new to me. I didn't know that it was possible to harvest sperm, so that's incredibly encouraging.

From the research I was doing last night it sounds like it might be a varicocele. It's normally on the left side (which is where the doctor found something) and not painful and it looks like the upcoming ultrasound would be able to diagnose it for sure. It sounds like it can be a factor in sperm issues and testosterone and that surgery might help. Of course this is pure speculation without a diagnosis. The really scary thing is that my insurance doesn't cover infertility, so if this is the problem I'm not sure that they would pay. Time will tell I guess.

I just wanted to thank all of you so much for being here for support even though I'm so new to this community. It really means so much and I strive to offer the same to all of you.


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Old 06-20-2008, 01:12 PM
 
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So sorry about the dx. And many prayers that cancer isn't an issue at all.

But the good news is that a zero sperm count doesn't always mean zero sperm. Here are 2 books that I recommend: How to Get Pregnant by Sherman J Silber, MD. I hate the title, but it does have a lot of good info, esp for male infertility and successful treatment. The Male Biological Clock by Harry Fisch, MD is also very good. It talks about a lot of tests that urologist don't always perform that can solve many male fertility issues.

When my husband saw an infertility urologist last month, he also felt something and the u/s found out that it was a cyst and that it will most likely go away on its own. He has a varicocele and we're meeting with a radiologist on Thursday to discuss embolization.

Good luck and best wishes on the upcoming appointments
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Old 06-20-2008, 02:52 PM
 
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Do you have a urologist specializing in male IF? Because if not, I would definitely see one. The first urologist we saw completely missed dh's varicocle - told us he didn't have one when he did - and yes, it was large, because the second urologist saw it from across the room.

A doctor seeing a lump and not being able to rule out something simple and fairly common like a varicocle concerns me.

BTW, dh's varicocle surgery did help his count and motility, but did bupkis for his morphology, which is why we still needed to do IVF/ICSI. BUT, we still feel the surgery was worth it, as it did give the lab folks much more sperm to choose from.

Wife to Thomas, WAH mama to Sofia Rose 8/04, Ellen Marie 10/07, her twin sister Amalie Joy lost 7/07 , and Maya Grace and Hannah Miriam 4/10
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Old 06-20-2008, 03:08 PM - Thread Starter
 
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I don't think this urologist specializes in IF, but he seems to have been very proactive so far. The ultrasound should be scheduled soon and I'm going with DH to that appointment to ask questions. I'm going to give him the benefit of the doubt at this point, considering my insurance doesn't cover IF and might be more likely to pay for a regular urologist than one specializing in IF.

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Old 06-20-2008, 11:39 PM
 
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I would talk to the urologist then about how they are coding things. They might be able to get your insurance to pay. For instance, my RE treats my PCOS, not my IF. Semantics, but it makes all the difference to the insurance.
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Old 06-22-2008, 03:17 PM
 
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My dh ended up having testicular cancer so I know how awful the waiting can be. He is fine now, but we are dealing with the infertility side effects of chemo. He'll be starting acupuncture next week to raise his sperm counts. I hope it works. Sending positive thoughts your way!
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Old 06-24-2008, 02:15 PM
 
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Lots of hugs and positive thoughts your way. I empathize with your emotional roller coaster. We've been on it for months as well due to low sperm count (under 1 million...so dh isn't at zero, but close to it) and low testosterone. It can be an overwhelming experience as it seems it's a challenge to find information about male factor infertility. I know it can seem like a waste of lots of time and money to have used contraception for years, then focused on your fertility for months, only to find out it's a whole other situation. The positive thing is that you now know specifically what the issue is and so there's no more "stabs in the dark" trying to make things work.
I don't have a ton of info to share, as we're still very new on this journey ourselves. But I wanted to let you know that you are not alone and to keep searching for a solution!! I have read the Male Biological Clock, with was such a tremendous help to us in helping us understand what's happening. It doesn't go into great detail in terms of treatment, but it at least gave us information about what's happened. The book recommends clomid for infertility when testosterone levels are low. My dh has been through an interesting experience will all of this. He approached his Dr with a recommendation from our naturopath for clomid. His Dr refused to prescribe it since it isn't approved for use with men (that's his explanation anyway. I know that lots of docs prescribe it to men). dh is still waiting for an appointment with a urologist that specializes in infertility. We've been waiting 6 months...not sure when we'll see him. In the meantime, he was dealing with the not so pleasant side effects of low testosterone. My Dr agreed to quietly see my dh. He also did not prescribe clomid, instead gave him androgel (testosterone lotion he applies to his skin). this medication has no guarantee of increasing his sperm count, but at least it has given him back some energy, a more positive outlook on life and a desire to at least try to conceive a child. I don't know if will help with his sperm count, but for now, it's making life a whole lot easier for him. He sees an endocrinologist this summer, who can hopefully consider other options. I have heard of meds that provide HCG (they stimulate the testicles to release hormones, instead of just adding hormones to the body) to the body. On other forums, people report some success. This is what I hope he will be prescribed eventually. I don't think my Dr knows much about this, and the info online says it should be prescribed and monitored by qualified interfility specialists. This seems promising to me.
keep hoping and educating yourselves about this. Please share any information you discover. It seems that low testosterone is not overly common as the cause of infertility. So anyway we can help each other out, the better for us all!

married to DH, mother to two amazing little boys born May 18/2010 and May 20/2013!

Infertility has been part of this journey - no more littles for us, but so grateful we have two happy healthy boys and we can now begin to heal from that experience

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Old 06-24-2008, 10:12 PM
 
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Hi there! I wanted to first of all send hugs b/c i was in your shoes at the beginning of this year. MY DH has CBAVD d/t being a carrier for cystic fibrosis. He has no family history of CF as far as we can tell. He had no swimmers in his sperm either and never will.

He went through a TESE in apr 2008...a type of surgery to remove some sperm from the testes. They got enough so that we could have 4 attempts at IVF before a new surgery would be required. B/c of this particular diagnosis, IVF w/ ICSI is the only option for bio babies.

WE went through IVF in apr/may of this year and did not do very well. I did not like my clinic or RE and my response was poor. WE are with a new clinic now and they think our odds are much greater than what we were given at the other clinic.

Ok, so that is a lot of info for you. But first things first...like another pp said you need to find a urologist who specializes in male IF b/c should your dh need the TESE, you want someone highly experienced doing it. And my dh had a varicocele also but they weren't even slightly concerned about that. And our insurance did not pay for any of the visits or treatment with the urologist b/c we have no benefits for infertility diagnosis or treatment.

When do you guys get test results back??
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Old 09-02-2008, 03:14 AM - Thread Starter
 
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My dh ended up having testicular cancer so I know how awful the waiting can be. He is fine now, but we are dealing with the infertility side effects of chemo. He'll be starting acupuncture next week to raise his sperm counts. I hope it works. Sending positive thoughts your way!

Turns out it was testicular cancer for my husband, too. What chemo regimen did your husband do? Mine is about to start 3xBEP since it's spread to his lymph nodes.

Bump for updates.

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Old 09-02-2008, 05:47 AM
 
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I don't think there's a hug smilie big enough for you and your DH. I'm so sorry to hear that it ended up being cancer and so sorry for all the stuff that haunts you in hindsight (the year of TTC, all of the trying to prevent before that). SUPER BIG to both of you and : that the cancer treatment goes well.
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Old 09-02-2008, 11:18 AM
 
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I don't have much to say, I just wanted to give you some hope. My sister's BIL had testicular cancer in his late 20's. He ended up with a clean bill of health and went on to have a baby without the frozen sperm!
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Old 09-02-2008, 12:38 PM - Thread Starter
 
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I don't have much to say, I just wanted to give you some hope. My sister's BIL had testicular cancer in his late 20's. He ended up with a clean bill of health and went on to have a baby without the frozen sperm!
I would love if this happened, but they may have to remove his other testicle as well - the ultrasound showed a suspicious area. Hopefully not, but it's a very real risk. The doctor also said that zero sperm was uncommon even with testicular cancer, so we were probably dealing with an underlying issue all along. Who knows? Thanks for sharing your story - the clean bill of health is so inspiring!

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Old 09-04-2008, 10:39 PM
 
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Turns out it was testicular cancer for my husband, too. What chemo regimen did your husband do? Mine is about to start 3xBEP since it's spread to his lymph nodes.

Bump for updates.
My dh did four cycles of cisplatin and etopocide (not sure of the spelling). He had the chemo for five days in a row and then a two week break (times four). Good luck...and there is light (and life) at the end of this dark tunnel.
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Old 09-05-2008, 01:34 AM
 
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I am so so sorry for his diagnosis, but heartened to hear that you were able to harvest sperm through TESE. I know several women who have gotten pg that way. Hoping that you have your "all clear," that his right testicle is spared, and that you can move forward soon!

Wife to Thomas, WAH mama to Sofia Rose 8/04, Ellen Marie 10/07, her twin sister Amalie Joy lost 7/07 , and Maya Grace and Hannah Miriam 4/10
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Old 09-06-2008, 11:30 PM
 
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cancer sucks... dh is a testicular cancer survivor and has been totally healthy since his retroperitoneal lymph node dissection in october of 2004. his cancer had spread to the lymph nodes, left lung, right kidney, and liver. he had 4 cycles of BEP which he tolerated very well, just had some fatigue and hair loss (fortunately i think he's pretty hot when bald). we've just recently started a fertility work up for him which has found that he had zero sperm in his semen analysis, but a retrograde ejaculation test found that there were some sperm in his urine... so now we just have to figure out how to get that where we want it (either with meds to reverse the retrograde, or having the RE process the sperm from the bladder so it can be used for IUI or IVF).

please feel free to ask any questions about our experience or you can pm me if you just want to chat.

take care,
rachel
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Old 09-06-2008, 11:43 PM
 
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Tricia, married to DH. 2MC's & 4 yrs ttc...finally mom to Andrew6/06 and Benjamin 10/09. Adopted bro & sis 2002. My 2 fav. words: Spay and Neuter! I'm an Ultimate Viewer, 2010!

 

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Old 09-12-2008, 02:16 AM
 
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I just wanted to bump this thread and say I'm sorry to hear about what you and your DH are going through. I know the feeling!

Last fall my fiancé was diagnosed with testicular cancer, and when he went to bank sperm for our future family, he had zero sperm count. They performed the orchiectomy, and checked the offending testicle for sperm, but there was none at all. After he healed from the procedure, he tried banking again and there was nothing. The remaining testicle (which has a varicocele!) is just not doing anything. He can try to keep it pretty cool down there, or he can have a surgery to remove the extra veins, but he's a SERIOUS phobe when it comes to surgeries, needles, and all that. I dunno what to do.

We have yet to get a fertility check since his completion of radiation therapy because he's afraid of the same results. Unfortunately, he's probably right, but we're going to try naturally for a few months before we give up and go in for further analysis. We've already discussed using a sperm donor and even adopting, so we're very sad but at least mostly over the "omg, we can't have our own" lump.

We were very lucky that his cancer was a stage 1 seminoma, and so not yet spread beyond the testicle itself. I'm so sorry for everyone who has had to go through such stressful times fighting metastasis

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IUI#4 success! Welcome Guy V 11/14/12
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