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Silent Infertility.

(You get a special prize if the title of this blog post made you think of this song.)

For two years, we wanted a baby.

When I first started lurking on infertility websites and forums, the acronyms were confusing.  I knew that TTC was “trying to conceive” but all of the other bits seemed as if someone poured out a box of Alphabits cereal on the floor and then let a strong breeze blow through.  The terms did not make sense.

But then, sadly suddenly, they did.

After a few months, I started tracking ovulation using at-home tests, and “OPK” (ovulation predictor kit) and “DPO” (days past ovulation) became common in our home.  Several more months gave way to an understanding of what “TWW” (two week wait) and “BFN on a HPT” (big fat negative on a home pregnancy test) meant.  The term “AMA” (advanced maternal age) came into play after a year.  I learned that Clomid tastes horrible and does crazy things to my blood sugars; Letrozole did not. After two years, I knew what an HSG was (hysterosalpingogram), had experienced IUIs (intrauterine insemination) and discussions about IVF (in vitro fertilization) were marked in my file, alongside “unexplained secondary infertility.”  Our insurance did not cover any of these treatments.  The stress on my family was tremendous.  The depression that came about as a result of this process was hard to describe but effortless to immerse myself in.

Last summer, I was pregnant, the result of an IUI. It was awesome, but briefly so. The baby wasn’t able to stay, for whatever reason, so they left when I was in the middle of a conference. Despite having friends to lean on and my family a phone call away, it was violently isolating.

I felt like my body had failed me.  Again, and this time in a way I had not expected. Not making insulin is standard fare after decades with type 1 diabetes, but not being able to make a baby broke my heart in a way that diabetes never could. Maybe it’s because I’m used to diabetes. Maybe it’s because the journey of having my daughter was almost effortless, by comparison. Maybe it’s because the miscarriage question couldn’t be answered, instead with doctors and friends alike only able to say they were sorry.

I feel guilty that I’m only sharing this now, with my growing belly as a comfort. Fifteen weeks pregnant with my second child and I’m still paranoid about every doctor’s appointment and ultrasound, still checking for blood every time I use the bathroom.  I wasn’t brave enough to talk about infertility and pregnancy loss over the last two years, and that makes me feel like a crumb because I should have been open about it then.  I wish I had been open about it then, because I would have benefitted from the support of friends and family. My mother and my best friends knew, but outside of that circle, this was an experience my family went through in silence.

People would ask, with kind intentions, if we were ever going to give Birdy a sibling and we should “Hurry up!”  Or they’d look at our independent five year old and say, “Aren’t you glad the days of diapers are behind you?”  And I became used to that feeling of my face settling into an expression of shielded pain, where I tried to make them feel more comfortable for asking.

It’s awkward to talk about, or at least it is for me.  Diabetes is something I am very comfortable sharing and discussing, but infertility was a shrugged-off, silent weight we carried, one we pretended wasn’t happening except every morning and every evening I documented this strange sadness on a spreadsheet that I brought to the doctor’s office with me every few weeks.

I’m sharing this experience now, despite still feeling vulnerable and nervous about my current pregnancy, because I found a lot of comfort in reading other people’s stories and raising my hand in a, “Me, too,” even if I did it in silence.  I never felt better that other people were experiencing a similar journey, but I did feel comforted, knowing I was not the only one.

I didn’t feel jealous when I saw pregnant women, because I had only recently learned what kind of struggle it can take to arrive at that moment.  And I would have shared this story whether I ended up pregnant or not, because the loneliness of infertility was suffocating.  I’m sorry I didn’t say anything sooner.  I wish I had, in case you were reading.  You, the one dealing with this, too.  I’ve been where you are, or at least my version of that experience.  I have no idea what any of our futures hold, but I know you’re not alone.

You are not the only one. You are not alone.

38 Comments Post a comment
  1. Molly #

    If only having diabetes meant we were immune to other health issues! Rooting for you and your family to make it through this pregnancy as easily as possible.

    03/10/16; 11:53 am
  2. B #

    We struggled and were diagnosed with “unexplained infertility” (one of the most frustrating things to call it! I want an explanation!!) the first time around. Heart break and that feeling of my body failing me, again. With help, we got lucky. Second time around, we were told we would need help… Yet nobody would help me because I was still breastfeeding and I could not choose one child’s needs over another and “cut her off” so I could get help in order to get pregnant… It broke my heart every day that I might have to make that choice, and that I might have to start the next heart breaking months ahead while trying “with help.”
    I was so blessed, somehow, I was able to defy the Drs this time and get pregnant without help and while breastfeeding like I was told would “never happen” for me. For ONCE I felt like my body didn’t fail me. But it still doesn’t feel real, and each appointment brings fear because “something has to go wrong”… It was too easy this time… (Well, not too easy, still took a LONG time as heartache, but no medical intervention…). 12 weeks and trying to settle in and trust my body that carried my first kiddo and produced the best thing in my life.
    I never told anyone but my sister and husband about what we were going through. I suffered alone every day. But the stories shared online were so comforting, so, thank you so much for putting this out there.
    And CONGRATULATIONS!!!!!!

    03/10/16; 12:21 pm
  3. I am so sorry you went through all of this. Wishing you the very best with this pregnancy.

    03/10/16; 12:23 pm
  4. Jessie #

    Kerri, I’m so sorry that you have had to go through this. I have been a silent reader of your blog for some time and your words tend to help me to find a “me too” in this diabetes realm, thank you for sharing this aspect as well, even though it is difficult.

    I had a few miscarriages and a pregnancy related health scare before finally having my daughter. Like you, each doctors appointment with my daughter was terrifying wondering if this was all too good to be true this time. One of the things that I really struggled with, whether justified or not, was the thought of how much harder I had it compared to some non-diabetic friends who told everyone as soon as they took a positive pregnancy test since I had to manage near perfect blood sugars all while silently going through this heartbreak. It took me a while to realize that more people quietly work through these issues than you ever realize.

    Glad you have started to be able to hope again and I am wishing you and your family positive things!

    03/10/16; 12:51 pm
  5. illlap #

    After some pretty devastating test results (and learning many of the these acronyms over the last month, including DE for donor egg and POF for premature ovarian failure), I finally came across a 2001 study with this line: “We hypothesize that an earlier menopause, which resulted in a 17% decrease in reproductive years, is a major unstudied complication of type 1 diabetes.”

    http://www.ncbi.nlm.nih.gov/pubmed/11473049

    I haven’t found any follow-up on this, or really anyone else talking about it.

    I don’t want to blame one more thing on diabetes, but it’s hard to explain the feeling of a new complication that no one ever discussed, at least with me.

    03/10/16; 1:03 pm
  6. I so wish you would have reached out earlier, and to me!! We had primary infertility (anovulation), that we “beat” fairly easily, but Oscar and Bella were born/died at 17w6d gestation. When Gus was about 2.5y, we went back to the fertility clinic thinking we knew what would work to conceive again; not so much. We now had secondary infertility with an added male-factor issue. Now, at the end of our family-building, we’ve had 6 cycles with IUI’s, 4 pregnancies, 2 kids on earth and 4 in Heaven. I can so totally understand the feelings of having my body be a complete and utter failure, as well as the fear that accompanies a pregnancy after loss.

    03/10/16; 2:06 pm
  7. Kat #

    I’ve been there. The meds. HSG. Miscarriage. Shots. Eight IUIs. Sciencing-ing the shit out of having a baby. And then when it finally, finally happened, spending my entire pregnancy braced for the worst. The best description I’ve heard of infertility is disenfranchised grief, and it seems so apt. No one talks about it, although that is starting to change, finally. I’m so sorry you had to go through it, and I’m glad you got your miracle.

    03/10/16; 2:06 pm
    • “Science-ing the shit out of having a baby” is the best description ever. xo

      03/10/16; 2:54 pm
  8. Angie #

    Reading this is both heart breaking and giving me hope at the same time. We’re currently going though this – over two years of trying, all the tests, clomid, three miscarriages, more tests. I found out I had PCOS while we were trying (and failing) to get pregnant, so at least I knew what was causing my issues, but it still hurts. The last round of tests have suggested I may have a clotting issue, so at least I know there’s possibly an explanation for the losses, and hope, but it’s still terrifying. There are so few pople that know about about what we’re going through, because it’s such a hard and presonal thing to talk about. I’m so pleased and happy for you, and I hope the rest of your pregnancy goes well!

    03/10/16; 3:40 pm
  9. Emily. #

    I’m really glad you posted this and am so happy to hear about your current pregnancy.

    We’re on this path after a recent PCOS diagnosis. I just got a bfn after my first IUI. Almost nobody knows and it’s the hardest. I feel like I don’t want to talk about it and at the same time it’s all I want to talk about. I’m on metformin for my insulin resistance, letrazole didn’t work and we switched to injectables. Unfortunately we can’t afford too many tries since our insurance doesn’t cover any of it either.

    -mom of a pwd

    03/10/16; 3:52 pm
    • Judith #

      My son and I are type 1. My daughter has PCOS and is in Metformin. I had 2 beautiful overweight babies and the first my son, I didn’t even tell my parents until I was 5 months pregnant.

      I’m concerned for my daughter and would like more info if anyone has a few good sources.

      03/11/16; 7:56 am
  10. Alyssa #

    My mother couldn’t have children for seven years (she and my dad married when she was 31, she had me when she was 38 and my sister when she was 39). She went through it alone and in silence, too, and she once told me that they spent over $50,000 on fertility treatments because insurance wouldn’t cover them. I don’t know what else they did, but I do know that she had three IVF procedures, none of which took, and then both my sister and I were conceived naturally.

    As the “miracle child,” though, I must say that this story makes me feel incredibly wanted and loved. I am so sincerely thankful that my parents went though all that they did in order to have just me. One day, when you tell your miracle child that you did all that to make sure they became a part of your life, they will feel wanted, loved, and thankful, too.

    03/10/16; 5:01 pm
  11. Lisa #

    I’m so sorry you had to go through this. Nobody talks about infertility. It is the loneliest feeling out there, I think. I think people feel like there is something wrong with them. And that people look at them differently. I know that’s how I felt.. I was lucky in that my SIL went through it (now has adopted 2 beautiful little girls) and she talked to me and let me vent and knew how I felt. I actually told a girl I worked with. She was going through the EXACT same thing but never said a word, until she finally got pregnant!!
    It took us over a year to get pregnant so I made an appt with a specialist. All the test were done. No real reason. Just unexplained. Lots of meds, lots of shots (luckily, we T1s have lots of practice!!!)…We got lucky with an IUI. And it stuck. Even though I never had a miscarriage (thankfully), my mom had 7 and I was so scared that I would follow her. Until I held her in my arms, I kind of held that scary thought in the corner of my mind.
    The infertility (with my age,39, and T1) is one of the reasons we are one and done. I don’t have the strength to go through it all again. It takes alot of strength to go through it all and deal with all the emotions, coupled with pokes and prods and stresses to your body and relationships.
    I’m sorry you had to go through this. But know you are not alone. And I think it makes you more “aware” of things that could be going on with people that you might not know about. Wishing you a happy and healthy baby!!!!

    03/10/16; 5:46 pm
  12. Firstly, thank you. Secondly, you ARE brave. Very very brave. I have not written about this on my blog, and I don’t know when and how I will but to make a long story short exactly a month ago I was staring at “Pregant 1-2” in an almost incomprehensible mixture of disbelief and excitement. It was my first pregnancy, a very much wanted one, and sadly it ended before February was up. Me too. It’s so hard not to blame myself from the diabetes angle no matter how counterproductive, and I am working through it and looking hopefully towards the future now. I found great comfort allowing myself to cry reading other women’s stories of miscarriage. We are not alone. Me too. And thank you. <3

    03/10/16; 7:10 pm
  13. Ana #

    I know exactly what you’re talking about. My children were born 7 years apart (3 miscarriages for me) and it is indeed a lonely road, but only because we keep it private. I wish I had been brave enough to share my feelings openly twenty odd years ago (pre diabetes so definitely unrelated, at least in my case)… Each child is special and unique, regardless of everything one might go through to hold them in our arms.
    Carpe Diem! And enjoy your joy!

    03/10/16; 8:01 pm
  14. Wendy #

    I have been there too, and yes Clomid does taste awful. It took almost 3 years before I got pregnant with my now 5 year old. It was a long and lonely journey. I went to a counselor and therapist and eventually had to be medicated. About one month before my scheduled IVF I got pregnant on my own. My fertility doctor was stunned.
    To me it was a miracle. A beautiful little girl with type 1.
    Thank you for sharing because I know how difficult it was. I wish you and your family much happiness and joy.

    03/10/16; 8:13 pm
  15. Wow. Just wow. You are brave beyond words for “raising your hand” to say me too. I’m so sorry you had to have this experience. Thank you for your blog and the writing that you do. I’ll offer the only thing i can, a prayer for you and your family.

    03/10/16; 9:09 pm
  16. Carly #

    Thank you once again for sharing so honestly. I followed your first pregnancy with bated breath, wondering if I would ever have the chance to have a healthly pregnancy with type 1. Now I sit here, my beautiful one year old daughter sleeping upstairs.

    I’m so sorry you had to struggle to get to this baby. But very excited for your family and wishing you fantastic blood sugars and mind-easing doctor appointments all the way through your pregnancy

    03/10/16; 9:28 pm
  17. Missy #

    Congratulations on the new baby! Although I have to say that I’m not sure if I talked myself into not being mommy material or I just refuse to have a Diabetic child( I am the daughter of a type 1 myself.) I hope that women out there would also consider this and try adopting instead… I know that’s it’s a manageable disease as I’ve been dealing with it for 30 yrs but I think I would be heartbroken to willingly chance the idea of having a small child deal with the stress, aggravation and sick days. For all of the women out there already Diabetic and pregnant, I wish ur babies a normal blood sugar always and forever!!

    03/10/16; 9:37 pm
  18. Hey Kerri, I have no idea if you’ll remember this… but you retweeted my husband about two years ago when he was asking people on Twitter to share our IVF fundraiser. I thought that was so sweet… sounds like it may have been right about at the beginning of your struggles, too. <3 Treatment worked (surprised the heck outta me that it didn't mess with my BGs at all!), and we have 9mo twins now! A son and a daughter <3 I hate that infertility is one more thing we have in common, but it DOES feel comforting in a way, seeing another hand raised. And oh how I can relate to the feelings that your body has betrayed you… I feel like way too many of my systems throw tantrums way too often!! I also know that fear of pregnancy after a loss or struggle… I was terrified right up until delivery! And now I'm terrified to ever try again. We got lucky this time… you know? Sigh. Sorry for my "emotions vomit" up there… just, lots of emotions! I'll be praying for you and this sweet boy, that you'll both be healthy and safe and happy! Hugs!

    03/11/16; 9:48 am
  19. Alison #

    This really resonated. Currently 36wks pregnant with baby #1 after 6yrs, 4 rounds of IVF and 3 failed transfers. As we approach the finish line people keep trying to reassure me about the birth process by saying helpful things like “Trust your body – it knows what to do”. HAH! Since when?!

    03/11/16; 2:30 pm
  20. Vicki #

    Baby! Yeah! So happy for you !!! Congratulations !!!

    03/11/16; 2:49 pm
  21. M #

    Hi Keri, I’m a Type 1 (25 years and counting!) living in the UK and have two little ones, I’ve lurked on your website loads but never commented until now … thank you for sharing your story, We experienced infertility with both our children and were lucky enough to get pregnant with my son on our first round of IVF. Once we started trying for our second child I had a miscarriage at 8 weeks and it completely devastated me in ways I didn’t realise would be possible … I became completely obsessed with having another, living child and when I eventually did get pregnant with my daughter I was a complete nervous wreck throughout the entire pregnancy (having T1 obviously didn’t help!!). We spent thousands of pounds on extra ultrasounds, extra doctor’s visits, CTGs etc as I was so anxious the whole time that something would go wrong again. Anyway, I guess I am trying to say is that I totally hear you and can relate to so much of what you have said. I wish you lots of strength as you go through this pregnancy.

    03/12/16; 6:16 am
  22. M #

    oops, sorry, I meant Kerri, not Keri!

    03/12/16; 6:22 am
  23. Devorah #

    Congratulations Kerri!! I’m so sorry to hear about your infertility and miscarriage. As a surviver of a miscarriage, you are definitely not alone. May you and your baby have a healthy pregnancy and delivery!!!

    03/13/16; 5:41 pm
  24. Amber #

    Thank you for sharing this with us. I was just recently diagnosed with type 1 diabetes in December this past year at 22. My husband and I had just found out in October that we were going to have a baby. The pregnancy was rough with weight loss, sleeping all the time and other strange symptoms that I assumed were typical. At 10 weeks, I had a miscarriage and we lost our angel baby. It was the next week that I was diagnosed with T1D and realized that those strange symptoms were my body telling me something else was going on. It has been the hardest thing to cope with and we are still trying to piece everything back together. Your blog has helped me seek comfort and has given me so much hope. Thank you for sharing and I’m praying for your family and your health.

    03/15/16; 4:50 pm
  25. Congratulations Kerri & Chris! Birdy is still the Cutest Kid Ever, but #2 will give her a run for her money I’m sure 🙂

    Kids were/are out of the question for many reasons for DH and I. But the silent sadness feels familiar, and I’m so sorry to read you went through it. Try not to worry. You have a lot of DOC peeps out here near & far rooting for you all <3

    03/18/16; 9:46 am
  26. Dani #

    I, too, have Type 1 for 30 years. Have a 5-year-old little girl and tackled that pregnancy with this disease head on. I remember searching and searching for anything at all that gave me hope back in 2010 and I found your blog. So, I feel like we are old friends. You just didn’t know we were friends. Thank you so much for all that you blogged about. It was a great comfort in such an unknown, hopeless time since I was always warned of having babies…or not being able to, is more like it. Like you, I had issues getting pregnant the second time around. Two miscarriages which were both around 6-8 weeks along, and then those were followed by about 9 months of all-consuming anxiety that took over my life. It was such a rough time, something I’d never do again by my choice, but glad I went through because I learned soooo much and grew too.

    Alllll this to say, I am writing today because I can say that I relate to all of this. The pain, loss, feeling alone and secluded. I am telling you though, there is hope! I got pregnant a third time and was blessed by a baby boy myself. He was a different pregnancy as well. Blood sugars were typical in pregnancy, but the third trimester was almost “easy” to maintain my numbers compared to the first time. So much so that I kept asking the sonographer to check the health of my placenta! But it was healthy. He gave me stretch marks and plantar fasciitis. And made me gain 42 lbs, was breach and threatened my blood pressure. And when he came, he came out at 11 lbs 4 oz! Kid you not. And my A1C’s with him were as good or better than my daughter (although she was 9 lbs!)! My doctor loved the fact he got to deliver a linebacker.

    Keri, you will have a healthy baby boy! I know you worry, but try to enjoy this too. It’s what I wish I did more of. My OB was amazing (different than my first pregnancy too – total God thing) and had a wife that had miscarriages and he was so encouraging and hopeful! I’m sure you know this but by the time you hit 12 weeks, you are 99.something% in the clear!!! You will have a healthy pregnancy. You are going to do amazing! I’m so excited for you and will be covering you in prayer along the way!

    Dani

    03/18/16; 1:49 pm
  27. MrsCorn #

    I was diagnosed “unexplained infertility” after 2 perfect pregnancies, 4 years of ttc 🙂 and then 2 miscarriages in 9 months. I was incredibly sick, mentally, physically and emotionally for a solid year. Every single test my doctor could think of was ran. Endless vials of blood drawn, my veins burst, I was passing out at nearly every blood draw. I went to the urgent care for what i thought was dehydration. That doctor sent me straight to the hospital where they diagnosed me as type 1. My world crumbled once again. They said probably never get pregnant, high probability of miscarriage if i did. I i can’t even begin tk explain. That was june 13, 2013. I had just turned 31. A few months later, I was pregnant. I lived in denial, till i was 20 weeks along. I didn’t have an endocrinologist because we couldn’t afford one, and the closest one was an hour away. I finally realized that a real, living baby was literally growing inside me and my insulin needs were out of my range of understanding. I finally made an appointment with an obgyn, who got me set up with the endocrinologist, and luckily, baby and I were both absolutely perfect. We welcomed her march 25, 2014. she is now 2, and i still look around and go ” wow! what the heck just happened! ?!?!” Lol.

    04/28/16; 12:56 am
  28. Amy B #

    I am going through a similar experience as a T1D. I think there is a correlation between type one and infertility or ovulation issues. I really feel like this needs to be addressed because it probably affects many more people than we know.

    05/31/16; 4:05 pm

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