A Year Ago Today

A year ago today, MLK Jr. Day, was Mr.E’s mTESE surgery. As you know, the surgery failed and zero sperm were retrieved. We received a diagnosis of Sertoli Cell Only. We were devastated and felt the death of lifelong dreams.

Today, we are 31w2d pregnant with boy/girl twins. We got to go to the hospital for a non stress test today and heard baby girl having hiccups 🙂 It was so cute!!

So much can happen in a year! A year ago, I thought I could never be happy again. Today, I can see so much happiness in our future. I see joy, love, family, and a stronger marriage.

I have so much gratitude for the doctors who helped us, for the love and support we’ve received from family members, for the gift of life we received from my BIL, our sperm donor. I have so much gratitude for them because of the happiness I see in Mr.E’s face. His eyes light up so often now! He says how excited he is to hold both of the babies and shows me how he’s going to coo and talk to them. And today, his eyes were so bright and full of joy when he heard baby girl’s hiccups. I hope I remember that look on his face for the rest of my life. It was priceless!

I started this blog to help people on their azoospermia journey to fulfill their dreams of having biological children. Without deviating from that goal, I want to convey that there is happiness, joy, even bliss to be found even if the ultimate goal of finding sperm is not reached. So much happiness!

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26 thoughts on “A Year Ago Today

  1. Thank you so much! You have provided information, support, encouragement, empathy. You have met your goal 🙂
    Blessings and congrats on your future family!

  2. Hey friend,

    So happy for you guys! Thanks for keeping such a helpful, amazing blog. It has seriously made things easier for me. It’s crazy how much can happen in a year. 11 days ago marked our 1 year of finding out my husband has azoospermia. It’s been a crazy year.

    I had my egg retrieval two days ago and later that day we found out the the sperm that was frozen from the microTESE, was gone. They couldn’t find any sperm. We knew there were only 3 and there was a chance it wouldn’t thaw well but we had no idea it would just disappear. Dr. Hotaling told us that there was a chance they would even find more than the three they found immediately after the surgery.

    Anyway, for now there is no way for us to have a biological child. We are both heart broken but I am so worried about my husband. I can’t imagine how much harder it is for him. Do you think you could ask your husband if he has any advice on how I could help my husband through this. I’ve asked but he says there is nothing I can do. He just keeps apologizing to me over and over again and just says he feels worthless. I know it also hasn’t helped because I’ve been in a lot of pain since the egg retrieval, I’m pretty sure I have OHSS (I have an apt tomorrow to check things out).

    Any advice would be great!

    thanks

    • Oh, Annie. Ugh. I’m so sorry. I can’t imagine having that beautiful hope sucked away at the last second. That is truly heart breaking.

      How was your retrieval? Did you freeze your eggs? OHSS is the worst. I’m sure they’ll tell you this but be sure not to lay flat, let gravity do it’s job of keeping the fluid down low away from your lungs. And drink Gatorade instead of water. And eat some crappy canned soup. The salt will help draw the fluid into your blood stream so you can pee it out.

      I showed my husband your comment. The first thing he said was, “Oh no. That’s awful.” Then I asked him if he could think of anything and he said, “Gosh I don’t know.” Men! But then as we were going to bed last night he said he had a couple ideas. I’m still working on getting him to verbalize his thoughts.

      In the meantime, I’ll tell you my ideas. It’s probably stuff you already know and do, but just in case… I would say to be sure he knows he’s still a man. He can still be the best husband in the world regardless of his sperm status. I can’t remember if I’ve written about Hannah and Peninnah from the bible. I found this on lds.org and it sums up so well how I feel about my husband and our infertility.

      “From Elkanah’s wives, Hannah and Peninnah, I learned some unexpected lessons (1 Samuel 1:1–21). I instantly empathized with Hannah because of her childlessness, but I soon realized she wasn’t the only one suffering. I was moved by Hannah’s pain in her barrenness, Elkanah’s pain in Hannah’s unhappiness, and Peninnah’s pain in her loneliness, which despite her many children must have been great as she understood she was less loved by her husband than was Hannah. From Hannah and Peninnah, I understood that we each have trials and challenges; we each have secret sorrows and pain. Was Hannah’s pain in her barrenness greater than Peninnah’s pain in her loneliness? I didn’t know. I couldn’t say. But I suddenly realized that I wouldn’t trade trials with Peninnah. For me, it was a revelation.”

      I would say to make sure your sweet husband knows without a doubt in his mind that you want HIM. That you want him more than anything else, including his sperm. That you’d rather have him spermless than some other guy with billions of sperm. Sounds obvious, but he might be doubting that if he’s continually apologizing? If your roles were reversed, would he see you differently? Would you be less of a woman or wife to him? I’m sure he’d say no if you asked him. But he might not believe you when you tell him you feel the same way. You might have to repeat it often until he believes you.

      The love you share as husband and wife is forever. Children come, then they grow up, get married and then it’s just the two of you again, growing old together. Your relationship is more important, dare I say more valuable, than children! Certainly more valuable than biological children. That perspective kind of sucks, but it’s also quite liberating.

      Those are my thoughts. I’ll get my husband to tell me his thoughts tonight.

      And of course, I think very highly of Laura Czajkowski, the reproductive psychologist. She was super helpful for me. I’m not sure if your husband would find her as helpful, but an unbiased 3rd party to put things in perspective can be very powerful.

      Oh and here’s the link to the entire article in case you want to read the entire thing: https://www.lds.org/ensign/2012/06/learning-to-cope-with-infertility?lang=eng

      Again, my heart breaks for you and your husband. I’m so sorry. I wish I had special powers to protect other couples from this gut wrenching pain. I do think time will help you both heal. Spending quality time together like you did when you were dating will help, too. Make out in the backseat of your car tomorrow night 🙂

  3. The more blogs there are about Azoo, and journeys through it, the better I think. I spent the first month after our diagnosis seeking others experiencing the same thing. I took comfort in others words and their experiences, feeling less alone than I had before.

    12 months ago we were diagnosed with Azoo. Like you I look back at how far we have come since then, to now having a complete diagnosis of the same condition, sertoli cell only. Our M-TESE failed to find any swimmers a few weeks ago, and we have since moved forward with donor. 12 months ago I would never have thought we would be where we are now. Unlike you, we haven’t yet managed to move forward into pregnancy, but a lot can happen in 12 more months. We aren’t done yet.

    I would love to still be part of your journey if you are still going to blog.

    @Annie. All the words of advice given below I would agree with. Wise words from a wise lady 😄. During our down time waiting to start our first IVF/ICSI attempt my husband had a “guest post” in my blog (I ran out of things to write about). He tried to give others advice on how men deal with Azoo (obviously from his perspective, it’s different for everyone). Maybe that can help too.

    • I’m so sorry that your mTESE failed. I remember the awful feeling I had when the Lab Director called to tell us the bad news. I’m glad to hear you’ve moved forward! It took us a long time to move forward. We were scared about any other direction. Almost like we were paralyzed with fear about making the wrong choice.

      Are you doing IUI with the donor sperm? Or had you done a simultaneous IVF cycle with the mTESE?

      I could not agree with you more about the lack of information or experience blogs about azoospermia! It is a bit tragic and I definitely felt alone at first. I do plan to keep blogging. We have 21 eggs on ice that we are saving for a medical miracle like stem cell transplant. There are so many other topics related to azoospermia i would like to research and write about. It’s just a matter of finding the time!

      • I found out there were no swimmers 5 minutes before I went in for egg retreival… It was a lot to take in. We had a donor ready and had already made peace with that outcome (as best as you can anyway). We transferred one perfect expanding blast, which unfortunately didn’t take. We have three perfect expanding blasts on ice and I am about to fly back over for our first natural FET. Fingers crossed this one wants to stay.

      • CONGRATULATIONS!!!! I’m so glad you came back to post this. Hope is such a good thing 🙂 I’m in my first FET cycle now, also a natural. So happy for you, and understand what you’ve been thru! What a miracle, praise God!

      • We decided to leave it as a surprise. We both want to know, but we don’t want to know more than we do want to know 🙂

        Thank you both for your well wishes, we are thrilled (I think that goes without saying).

        How did your FET go Ashley?

        How are your twins going?

      • FET was unsuccessful 😦 We are moving on to the next FET….so emotionally draining. I know all of you understand. I felt very strongly about doing it with absolutely zero medication (just going by my own cycle), since I have Crohn’s and the estrogen tends to cause a flare. Since it didn’t work, I think the best thing at this point is to get back on the Humira and do and estrogen/progesterone cycle (sigh). I’m trying to take care of myself the best I can, but I’m definitely willing to take this risk to have a child. Thanks for asking.

      • Woohoo!!! That’s is such fantastic news!!! You must be thrilled and terrified all at the same time. So happy for you, congratulations!!!

        Here’s to a happy and healty pregnancy x x

        We’re not far off meeting our little one, but I’m not going to talk about that right now because this is your moment.

        Congratulations!! X x

      • you are sweet 🙂 Thank you so much!! yes, I’m just having such a hard time believing it, it seems like I’m in a dream. It’s strange b/c as insanely happy as I am, I almost feel kind of numb…it could be from years of protecting my emotions? I hope it’s normal! lol.

        I am so glad we’ve had this blog to glean hope from – thanks Mrs. E and everyone who has added to the discussions. Blessings and good luck to all :))))

      • hello @society8me! Your timing is CRAZY…you must have ESP. I just had my first beta today after a single FET….positive at 490! It is absolutely surreal. All I can think is “thank you God for this miracle”. Thank you so much for thinking of me and sending best wishes. What is going on with your journey??

  4. I just want to say thank you for sharing your journey. Most people binge Netflix. I binge-read your entire blog in a matter of hours. We received our NOA diagnosis less than 2 months ago and are still trying to wrap our heads around it all. It’s been a rollercoaster of emotion and I know it’s the only beginning. I don’t know that I can convey how helpful and encouraging your blog has been for me, but you’ve given me a lot of hope and for that I am so grateful.

    • Jo, your kind words just gave me tingles. If you ever have questions or concerns or just want to rant and rave, please tell us! We’ll understand your thoughts and emotions better than anyone!

      • Thank you for the warm welcome. Well, I only have about 10,000 questions and concerns but that’s manageable, right? 🙂 We have a lot of tough decisions ahead of us. My DH had two semen analyses from different labs. Sadly, it wasn’t an error. FSH is 38, Testosterone is 610, LH 17, prolactin 14.7. Thankfully, genetic tests were all normal. We met with our local urologist, then phone consults with Turek, Schlegel and another closer to home. All but Turek recommended we go straight to MTESE with concurrent IVF/ICSI (actually the other in-state urologist said we didn’t need to do the concurrent round of IVF, but that seems to be the minority opinion) Turek recommended FNA mapping first, claiming a 65% chance of finding sperm and potentially minimizing the invasiveness of a subsequent MTESE by using the map. I think I know the answer to this question but was mapping something you and Mr. E ever considered? It seems to be somewhat controversial and not widely practiced but I can’t blame my sweet husband for hoping it might be an option before jumping straight into arguably the scariest surgery known to man.

      • Yes we did consider it! We almost did it too. But I either got scared or had a woman’s intuition moment that it wasn’t right for us. I think my fears/concerns were related to scar tissue. I wanted my husband’s testicles to be “pure” until we had the mTESE.

        The sperm mapping sounds awesome and I’m sure it’s the right first step for a lot of couples, but I got cold feet as soon as they asked for the deposit. It just didn’t feel right anymore. In science there’s a phenomenon called the Observer Effect. Basically it means that because you are observing something, the something changes it’s behavior. That’s how I felt about sperm mapping and regular TESEs. Observing the testicles that way changes them by introducing scar tissue, even in tiny amounts. Heaven forbid there be only one tiny pocket of sperm production and it gets ruined by the needle. Another thing that ruined the sperm mapping for me is that if sperm were found, we couldn’t use any of them. That sounded so tragic to me! 🙂

        The other things that made me decide that mTESE only was the right choice for us was Dr. Schlegel’s rules for mTESE after another testicular surgery: minimum 6 month wait and redo all blood work to make sure there’s no long term damage from the previous surgery. I think those were the rules. It’s been a long time! Anyway, I trust anything and everything Dr. Schlegel has to say on the subject. He really, truly knows what he’s talking about. As you make your decision, maybe send Dr. Schlegel a quick email to see what he thinks or what the rules are for mTESE post-sperm mapping.

        I think lots of couples have done the sperm mapping and been happy with their final results. Honestly I don’t think you can go wrong with with either choice. As you mentioned, it may save your hubby from a difficult and a physically and emotionally invasive surgery! And save you from doing a simultaneous IVF cycle. For us, I knew that if the mapping didn’t find a single sperm, we wouldn’t stop. We would continue moving forward and do the mTESE eventually. It just made sense to me to skip the mapping and go straight to mTESE.

        If you decide to do the sperm mapping, I would love to hear all the details! Maybe you can do guest post on here 🙂

        Now, about that prolactin result, isn’t that result high for his Tanner Stage? Actually according to Quest diagnostics, it’s too high for simply being male. The max for an adult male over age 18 is 11.
        High prolactin can be caused by prolactinoma (benign but hormone-secreting tumor) or hypothyroidism. If it’s the tumor it’s an easy fix with a pill. If it’s hypothyroidism, it’s a pretty easy fix with a pill. An MRI of the brain with and without contrast will tell you if there’s a tumor.

        High prolactin can also be caused by improper preparation for the test: get blood drawn in a low stress state, no nipple stimulation for 24hrs, get the blood drawn 3hrs after waking up (lay down and watch tv to keep stress low during the 3hr wait). You could redo the blood work before doing the MRI.

        We did Mr.E’s prolactin test 3-4 times before we got a normal result. His MRI came back clean, but we did find thyroid problems. He is the opposite of what you expect for someone with hypothyroidism. He’s super skinny (6’5 and weighs 180) and he has perfect skin, etc. we asked for the testing anyway, sure enough he has Hashimoto’s hypothyroidism. Obviously finding that and treating it didn’t find sperm for us, but I’m still so glad we did the testing. It’s so much better for his long term health to start treatment early. Here’s a link to thyroid testing you should request: http://www.stopthethyroidmadness.com/recommended-labwork/

  5. Mrs. E – Thank you for sharing your thoughts on FNA mapping. I’m having many of the same fears/concerns about the procedure. Fortunately, I think my husband agrees that it just doesn’t sound like the next step for us, so we’ve opted against it. We both seem to be on the same page about moving forward with the mTESE, but we haven’t determined if we’ll do the concurrent round of IVF or if we’ll have a donor backup. I think we’re going to see if we can find a reproductive psychologist to meet with to make sure we’ve both really thought about things.

    As for the prolactin, I didn’t realize it was outside of the normal range. I thought anything less than 18 was generally okay? I know that a full thyroid panel was next on our list, but I’ll admit I haven’t had a chance to do adequate research on that front yet. So much to read, so little time :-/ We’ve been married for two years now and were charting/temping the first year. Somehow I fooled myself into thinking our natural family planning practices were really working and completely dismissed the thought of something being wrong. During year two, my husband was traveling for work 4 days a week and my cycles are sometimes irregular so I just assumed our timing was off. Even my OBGYN suspected it was just a timing issue but suggested the SA just to be safe. Needless to say, I feel like we’re so far behind schedule and every day that passes is just more time wasted. Thank you for bringing the possible thyroid issues to my attention, I’ll definitely see what I can find out.

    • I hear ya, girlfriend! The only reason we got Mr.E tested after only 3 months of trying is because I had a “feeling.” Even then I assumed it was me who had the problem. When my tests came back normal, I was surprised! The doctor said if we wanted to test anything else to do the SA, but just for peace of mind… 🙂 we know how that turned out! Boy am I glad he suggested that.

      Yeah that’s the problem with looking at lab results, they show the general population (which includes women!) in the normal range. For men the max is 11, for women it is 18. Too bad your doctor didn’t notice it. Ours didn’t either. I had to point it out and ask for the additional testing. My mantra is, “Trust but verify… ev.er.y.thing! Cuz nobody wants us to have a baby as much as I do.”

      When it comes to thyroid results, the normal ranges are the general population, including people with sub clinical thyroid problems! So the ranges are skewed. If you don’t have time to read anything but the list of tests to request your doctor run, you can get on Facebook and join the closed group (friends won’t be able to see your posts) called “FTPO – for thyroid patients only (thyroid topics)” You can post your hubby’s labs and there are lots of people on there who can interpret them for you using the STTM protocol. I learned quite a bit from that group and reading the STTM book.

  6. Just checking in… Wondering how everything is going?? How did the birth go.. how are the babies? I have been following your blog and now my doctors have decided to do a very similar cycle to yours…

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