Friday, July 5, 2013

The day I was diagnosed with DOR

I was browsing fellow DOR/POF blogs this morning and was inspired by a guest blogger post written by Jane, a medical professional over at No Good Eggs: Diagnosing Patients with POF. It was really interesting reading about such a devastating diagnosis from a medical professional's perspective. This post was very moving for me because it reminded me of the day I was handed the world-crushing diagnosis of severe diminished ovarian reserve. I wish my RE at the time had put a little more thought and compassion into delivering the news to me. I decided today's post would be recounting that fateful day where my world was turned upside down. Maybe it will help someone else who is in the trenches of a recent diagnosis.

It does get easier.

In the Summer of 2011, I had been to my OB/Gyn who did basic CD3/7 DPO blood work and discovered abnormal testosterone and blood glucose levels. Despite the fact I had normal cycles and was ovulating based on basal body temps, on the blood work alone she confidently diagnosed me with PCOS and told me that I'd certainly be pregnant in three months on Metformin. If not, she'd put me on Clomid and that would definitely do it. At that appointment, I asked my OB/Gyn about the possibility of going to an RE, and she laughed and assured me I didn't need to. REs were for the "difficult cases" and I was definitely not one of those. Well, I wasn't pregnant after three months, yet I wasn't prepared to blindly go on Clomid unmonitored as she had proposed. So despite my OB/Gyn's recommendation to stick with her, I made an appointment with the RE. It was one of the best decisions I have ever made.

I was extremely pleased with the RE at our initial consult. Kevin and I both had a great feeling and were very optimistic. One of the first things she did at that appointment was an ultrasound to look at my ovaries. We fully expected to see signs of polycystic ovaries, or a "string of pearls" on the ultrasound. But my OB/Gyn had never done an ultrasound so this was the first time they had been looked at. I was surprised when the RE said  "You don't have PCOS. Your ovaries are inconsistent with that diagnosis but we will keep you on the Metformin for the insulin resistance, so no harm done there."

Ooooooohkay. That was a shock since my OB/Gyn had been so certain. But I was going with the flow since I trusted this RE and knew she was an expert in this field.

We decided to move forward with an unmedicated IUI cycle right away because I had a little IUI insurance coverage which would be expiring at the end of the month and we all agreed it was at least worth a try. I was excited to be actually undergoing a fertility treatment that gave us what I felt was a real chance for our baby!  And at that point, IVF seemed like something "other people" had to do, but not us. I was sure we wouldn't be one of them. The right pill would be the trick, or an IUI cycle would be all we'd need. In hindsight, I was so laughably naive.

In the meantime, my RE decided to re-run my thyroid blood work and add AMH in the mix to ensure she had all of her typical panels done. The only thing on the table she had mentioned was the potential of putting me on Synthroid since my TSH was within normal range, but could still be improved for a women attempting to become pregnant. It was minor and I wasn't worried in the least. And I had no idea what AMH was but was too focused on our upcoming IUI to care.

We did the IUI on December 2nd, 2011. A few days later on December 6th, my RE's nurse called me while I was driving to work. I answered as I was pulling onto a freeway on-ramp.

Nurse: "We received the results of your blood work. Your AMH results came back as undetectable."

Me: "Huh? What does that mean?" (I was thinking it would be something simple to treat, something minor. This had to be minor since I had never heard of it before, right?)

Nurse: "It is indicative of diminished ovarian reserve. We are very concerned about your response to an IVF cycle, and you will likely need a very high dose of medication in order to have a chance of achieving pregnancy using your own eggs."

Her voice started to sound muffled.  I think she mentioned the words "early menopause" as she continued to talk but I couldn't hear her anymore. My mind was racing. Why was she using the term IVF? Why was she saying "your own eggs"? What other eggs were there?? None of this made sense. My IUI was going to work, and if not, we'd try IUI again. That would be that.

Me: "How long do I have until...well, until its....too late?"

Nurse: "We recommend you do IVF, like, yesterday."

She apologized and the call ended after that.

My first paranoid thought was that this was some kind of ploy to move us to IVF quickly so the clinic could squeeze as much money out of us as they could. There was no way this was really happening. Doctors had told me on other occasions in my life that I should have no problem getting pregnant because I ovulate regularly and have regular cycles.  The nurse had to be wrong. I was instantly in denial.

I remember finishing my drive to work like a zombie. I didn't even cry because I was stunned.

We had a company Christmas party that afternoon that my manager had strongly asked that I attend so I couldn't go home and decompress. But I had no idea how I was going to be attending a Christmas party when I could feel a piece of me starting to die inside.

I couldn't focus on work. I spent time researching the diagnosis and with every new forum post and webpage I read on the topic, the truth became more and more real. I had to start to accept that IVF was our only chance, and it wasn't even a real chance with undetectable AMH. I had to face that the nearly $20k price tag associated with a maximum-med cycle would be 100% out of pocket. I had to try to accept the idea of premature menopause at the age of 29. I had to face the fact that I would likely never have a genetic child. Ever.

After holding it together at work for about five hours, I headed out to the company Christmas party at the restaurant which was about 10 minutes away. On my drive there I got a short three-word text from my sister in law who was pregnant with her first child.

"It's a boy."

She had no idea what news I had received that morning. She couldn't have known. But to get this text on such a critically devastating day of my life, to this day, I can't help but wonder if at that moment God was trying to push me to my brink for reasons I'll never understand. I was so angry at Him.

I lost it. I absolutely lost it. I couldn't hold it together anymore. I arrived at the restaurant parking lot and tears exploded. My first thought was to call my mom because she had always been my source of comfort and if ever there was a time I needed it, this was the time. I told her the test results. She too, of course, had never heard of DOR, but somehow found the right words to say to comfort me. She cried with me as I sat in that parking lot alone. She told me she would do whatever she could do to help. She didn't know what that would look like, but she'd do it. I felt terrible laying this at her feet because she was in the late stages of cancer, but I couldn't deal with this at that moment alone.

As I talked to her, crying, I started getting flooded with texts from coworkers asking me where I was and why I hadn't arrived at the party. I pulled it together the best I could, and put on the mask of a woman who had not just had her world destroyed.

Inevitably, a few days later I was crushed to learned that our IUI was a failure while on a trip to Utah saying my final goodbyes to my Mom as cancer killed her. And sadly, she died just a few days after that. To this day it's a wonder I didn't require institutionalization over the course of those few weeks due to a nervous breakdown. I still recall those few weeks in December and shudder.

But the good news is that with time I have accepted this diagnosis. Our failed maximum-med IVF attempt the following Summer gave a major sense of closure. I knew beyond a shadow of a doubt that my ovaries were broken and nothing modern science had to offer could bring them back to life. That door was completely closed, and there was something refreshing about no longer being left to cling to hope or wonder "what if?"

I can honestly tell you that today not only have I been able to accept this diagnosis, but I've embraced the path of embryo adoption that it has led me to. Words cannot adequately describe the feeling I had the day I learned that embryo adoption was an option for women like me. It felt like a warm ray of light shined through my tunnel of immense darkness. And even today, that ray of light grows brighter with each step closer to getting our embryos to Texas and our FET planned.

Of course there will still be days where things are extra difficult and I will say "why me?" But time has healed so much. I know that the children who will be sent to us will be the ones who were meant to be ours all along, no matter how their bodies were genetically made. And I already love them with every ounce of my being. Love makes a family, and love has nothing to do with genes.

I still do have flashbacks almost two years later whenever I approach the freeway on-ramp where I was when the nurse called me. I don't know if I'll ever shake that.

Thanks for reading this exceptionally long post. It was very cathartic to finally get it out in writing and share it with you all.

I'd like to hear stories about how you were handed your diagnosis, whatever it might be, if you're willing to share. Was it in person? Over the phone? Obviously no one ever wants to get an IF diagnosis, but were you at least okay with how it was approached?


  1. Your story is similar to mine. The doctors told me I had PCOS and put me on clomid. We did three rounds of IUIs and had to cancel the last one because I had 3 golf ball size cyst. I was ready to move on to IVF. The funny thing was I was so nervous about OHSS that it never occurred to me I would have the opposite problem. During IVF I only had 5 eggs and one embryo that was a day behind. It was until we did a follow up appointment that I was given the POF diagnosis. My husband and I had decided we wanted to do another round of IVF - something went wrong with this cycle. But here the doctor was telling me about menopause and my eggs were terrible quality and I would need an egg donor. I was 27 years old... menopause? I had no idea what he was talking about. Of course when I get home I consulted with Dr. Google and found out just how devastating this news was. I lost it. It was the time we had to truly grieve the loss of our biological child.

    1. That is very similar. I am so sorry you had to go through so much to finally find the answers needed to move forward. :(

  2. Wow! Just wow! I 'knew' your story, but here I 'felt' your story. I am sorry that it all happened the way that it did but so thankful that EA is an option for couples like us. I am going to share my story in a blog post and link up to your blog.

    1. Jess, this means a lot to me! Yes, I read your blog post and felt the same way. It's crazy how you can have friends in the IF circle and know their story, but not really know all of the details. It was helpful to read yours and I am so sorry you went through so much before getting to where you are. I teared up when you wrote about learning about EA and how it was like birthdays and Christmas all rolled into one. That's how I felt too. :)

  3. Wow what a story! Crazy stuff. I can't imagine a PHONE CALL like that, you'd think they'd have you come in or something. I agree with the above, I really "felt" this as I read this. Continued prayers that your little ice-babies bring your dream come true.

    1. Yeah, I had no idea what had hit me at the time. But in hindsight, I really wish it would have been approached differently. Thank you so much for your constant support and prayers!

  4. My path to POF started slow, then ended with a bang. The first RE did an ultrasound and told me that I had an AFC of 3. Which she described as "a bit low." Then she tested my AMH. It came back undetectable and she said this isn't a problem as long as it is on the high end of the undetectable. All in all I felt very confident going starting a max stim IVF. But then I saw a new RE how was doing the ultrasounds the morning of my appointment. I had 0 eggs after 7 days of stim. He told me I would never have a genetic child. He kept repeating it over and over. "don't try any more treatments, they won't work for you. You will never have a genetic child." then, starting the talk about early menopause which he described as saying that my ovaries were 20 years older then they should be. And the sentance that still confuses me to this day. He then added "this does not necessarily imply that the rest of your internal organs are aginng 2x faster than they should." Clearly this RE had a belief that it was his job in life to stop people from spending money on fertility treatments that had a low chance of success. But why when you are also telling a women she is infertile, do you also have ot make her worried that other parts of her health are also failing? I did some research and switched clinics.

    1. Thank you for sharing your story. I am so incredibly sorry about your diagnosis and how it happened for you. And I am really sorry for the implication that your internal organs also might be affected. I am glad you switched clinics!

  5. I wanted you to know that I follow your story and really identify with your heartache and loss. I'm so so sorry. Its devastating diagnosis. I was 30 when I got my DX of a chromosomal translocation, but I still hung onto the hope that IVF was the answer - my RE, the genetic counselors, everyone told me that it was. Then came the cycle...and I remember my RE coming to tell me. We were staying in a hotel because the IVF center was 4 hours from home, the RE called and asked to come over and see us and I felt "something is wrong". She arrived 5 minutes later and sat down with the words "I have some bad news." Then I remember her telling me that all my eggs were abnormal, so abnormal they didn't even try to fertilize them. Telling me that I would never have a genetic child. She told us that it happens in some translocation cases but that there were still options for us - donor egg and embryo. I was still stuck on those words "never have a genetic child." I just laid in bed and cried, I cried for hours. I don't remember the RE leaving, I know she gave DH a prescription for me for some Klonopin and I know he left at some point and came back with some food and the prescription. But I was just so devastated.

    At the same time this was all happening, my Dad was deteriorating rapidly from pulmonary fibrosis. By my Dad's demand, my family hid his real condition from me during my cycle. Unfortunately, the same day I got my devastating news from the RE, my Dad was bad enough that I needed to go say goodbye or I wouldn't have a chance to. My Dad passed away the next day. That March - I don't know how I survived.... I really don't. Its kind of a blur of just overwhelming grief.
    It took therapy and work to try and get back to a good spot, although I struggle far more with my Dad's loss then for the idea of "genetic children" We moved forward with donor eggs and we did delay our round of DE IVF by a week so it wouldn't fall on the anniversaries of the worst days of my life. But I think I would have been ok anyway because now more then ever I see love and caring as what makes a family, not genetics.
    So much love and prayers for you! I know you'll be such a terrific mom.

    1. I have to tell you I read your comment with tears running down my face. I completely identify with your story, and no wonder you identify with mine too. I am so very sorry for how it all went down for you, and that you had to learn after retrieval in the way that you did. And to lose your dad the next day....words can't describe how sorry I am that this happened.

      I am soooo past the need to have a genetic child. I just want our child - no matter his/her genetic makeup. Just like you said, love is what makes a family. I'm 100% at this point as well! Thank you for the kind words, I appreciate you sharing your story. These kinds of things help me not feel so alone. I'm not sure who you are (anonymous) but I'd love to hear from you often, if you're up to commenting! :) Do you have a blog?

    2. No blog, actually, your blog is the first time I've ever commented on a blog! Hence, why I just figured out how to not comment as "anonymous." I follow (okay, stalk) you on TB.

      I'm so glad you share your struggle and story so openly, it does help to know that other people feel the same way I've felt (so I'm not crazy for the way I feel!) and I also have to say how inspiring you are with your constant hope and optimism. I know it may not feel that way to you, but your attitude is inspiring.

    3. This means more to me than you will ever know. Sometimes I don't know if I come across negative all the time, or if anyone is even being helped by my story. I'm so grateful for your kind words. :)

  6. Thank you for sharing your story. I also have DOR. My diagnosis was not near as dramatic, as it was a long time in coming from 13 years ttc. I keep my fingers crossed you you and your embabies all the time and pray that you will get to one day share your love with them.