Mystery Diagnosis: Infertility Edition

There are two types of shows on television that I could watch all day and never tire of... cooking competition shows and medical mystery shows. No secret I'm a Grey's Anatomy fan... medical mystery and drama? Who wouldn't love that? Now on a different show... you get the same drama and medical intrigue (minus the relationship drama) in a real life setting. Mystery Diagnosis. It always features a "victim" who has some medical dilemma. In their process they are diagnosed and treated over and over again until randomly some doctor finally finds the root of the problem and FINALLY they get the treatment they needed from the very beginning... finally they get relief. 

Mystery diagnosis... Infertility edition.

You've read the story so far... first it's this... then it's that... then it's all signs point to this so let's treat it!! But has the treatment worked? Well since we have yet to conceive... you can figure that. 

So after several different tests... more lab work than I could ever dream and even more diagnostic imaging. We have a diagnosis.

Is it a progesterone deficiency? Nope. Is it anovulation? Not quite. Is it mental instability? At this point, yeah probably some of that going on. Lol. 

Ladies and gentlemen... our diagnosis? Poor ovarian reserve. 

Not super common for someone my age. Normally when you do an antral follicle count (an ultrasound where they literally count the number of follicles you have in each ovary on day 3 of your cycle) in someone my age, you would see 15-20 follicles... in each ovary. I had 5 on the left and 7 on the right. I have the ovaries of someone much older than myself. This "low reserve" was further confirmed with a lab test. I have low AMH (anti-mullerian hormone). This hormone is produced by the microscopic follicles in your ovaries, and therefore reflect the size of your remaining egg supply. Normally this decline doesn't occur until age 35 or so in a normal female. 

So why haven't we ever heard anything even mentioned about this being a possibility until now? Well. Normal gynecologists (even if they are "treating" you for infertility do not do this testing). They tested my progesterone on day 21 of every cycle. Always low. I couldn't get pregnant... so for everything they were doing... all signs pointed to "progesterone deficiency and anovulation". But that was never the problem at all.

After watching my cycle very closely. I am ovulating. This is occurring early on in my cycle, which makes my luteal phase (the phase after ovulation) normal length. No luteal phase defect. So why, if I'm ovulating couldn't I get pregnant? Even though I am releasing an egg every month, the egg is releasing early. This egg doesn't have the normal time to mature... so it is not viable for pregnancy... can't be fertilized or something along those lines. 

I wish there was some magic pill to pump up this number. Women are born with all of the eggs they will ever have in their lifetime. So... the longer we've tried getting pregnant... the longer we wait... the less eggs we will have. And in my case, sooner rather than later there won't be any good ones left. Our doctor is somewhat concerned about the quality of eggs we will be able to attain, but that cannot be determined until our eggs are harvested and he can actually look at them. One step at a time...

So what's next, you ask?

IVF!! We get to start immediately (finally some good news)! Well as soon as I start my next cycle, that is. The sooner we start... the better, as far as my eggs are concerned. 

I know it has taken a while for me to post this. Honestly I just had to have time to deal with it all. This was not fun news to hear. I mean what 28 year old wants to be told this?! No woman ever wants to hear this, but especially no woman who should be in her "fertile" years. 

First I was excited to have a plan. Then I was depressed when I processed all this new news. Then I was irritated of all of the "missed" diagnoses... then I came to terms with it. I have spent many hours in prayer... except this time it wasn't so much asking "why?" as usual... it was more asking for strength and wisdom to deal with this... as well as for direction.

I truly believe that if we were not supposed to do in vitro, everything would not have been provided to us as it has. I feel like I am in good hands. (Divinely and medically). We have lots of support. (Thank you all for that). 

Now all we can do is keep the faith... and pray. Pray without ceasing. 

It's a Marathon, Not a Sprint!

From where I'm standing, Lord, It's so hard for me to see

Where this is going and where You're leading me

I wish I knew how, all my fears and all my questions

Are going to play out, in a world I can't control

 

June to November 2012

Those six months we were on clomid were each challenging in their own way. You've seen the story of our first round, the next five were less eventful. I only ovulated three times out of the six (that count is including the first round when I was over stimulated). So, in actuality we only had two shots at conceiving out of the six. There were many times in there where we thought we were pregnant, but those symptoms were mostly due to the progesterone supplements I took on the months that I did ovulate. By now you know how sensitive I am to side effects from medication, those supplements are no different. The "tell-tell" signs of pregnancy are mimicked by my body on said hormones... nausea, vomiting, bloating, breast tenderness, extreme fatigue ... etc. etc...

 

Because of the bad reaction I had to the first low dose we took, our doctor was hesitant to increase the dosage even after I had months of anovulation. Even now it seems like those days just dragged... time stands still when you really want things to happen. Every month was the same, the side effects never got better (minus the bout of OHSS I had the first time). I became accustomed to them... so accustomed that I forgot what "normal" felt like. My days were filled by managing symptoms, charting the optimum time for us to try to conceive and putting every twinge I felt under the microscope to see if it could possibly indicate something more than what it was.

 

There were countless moments of discouragement and disappointment. Those moments were often magnified by the announcements of others which seemed to inevitably fall on the days I would have a negative test or got the blood results of failed ovulation. Some people call this Murphy's Law of Infertility. I like that... I like anything that gives me the ability to laugh through our struggle. I saw babies being born... I did ultrasounds for my best friend to tell her that her son was developing perfectly to put her worried mind at ease. I watched her belly grow just as I had watched my sister in law's grow. I am proud to say that she has a perfect son, and I love him dearly.

 

There were countless moments of tears, either through emotional outbreaks from the medicine or the disappoint of yet another failed cycle. But there were also moments of comfort and joy... after joining an online support group I found out I was not alone in my feelings and that makes all the difference. I watched my perfect nephew go through many  milestones (often wondering how my child would look if they were side by side through these milestones). Those six months were a roller coaster really. There was one time I thought I might have OHSS again, but it was a false alarm... just "normal" pains, as if any pain should be labeled as normal... my doctor never once discouraged me from calling and being checked out just to make sure there wasn't anything wrong again. I was grateful for that.

 

On the sixth round my doctor finally made the command decision to increase my dosage, I was apprehensive but anxious to keep things moving forward. It was November 2012. I ovulated that cycle, but still did not get pregnant. We got our negative pregnancy test on Thanksgiving day. It seemed no matter how hard we tried, it just wasn't happening for us. It was a hard day for me to be thankful... but we put on a happy face and made it through the day... after shedding a few tears alone in the bathroom before the festivities.

 

After my last round of clomid, I had a follow up appointment with my doctor before we could move on. She walked in and said "How are you doing?" and before I even had a chance to answer she went on to say "Let me guess, frustrated?!" Talk about hitting the nail on the head. We talked more about me that visit than anything else. That is the joy of having a doctor that talks to you like a friend, you can open up to them... you aren't afraid to tell them how you are really feeling. She offered to put me on antidepressants if I wanted them, but encouraged me to try other routes first. She then ordered more tests on me before we could move on with further treatment options.

 

On that visit she encouraged me to start doing yoga on a daily basis. (We also discussed acupuncture but the cost of the visits ultimately discouraged me from doing so.) I did some research (because, that's what I do...) and ordered a yoga DVD from Amazon. I encourage anyone who is interested to check it out. It is called Restoring Fertility: Yoga for Optimal Fertility. The developer has an entire website devoted to helping increase fertility... www.restoringfertility.com The neat thing about this workout, is that it has a different exercise for every phase of your cycle... If anything doing these exercises has helped with my anxiety level... well that and spending a lot of time in prayer, and in research. Oh, me and my researching... I find myself comforted when I can understand exactly what is going on (or not going on that SHOULD be) in my body. The exercise even helped with the muscle aches and headaches I continued to experience...

 

It was during this six month period that I realized this process, for us at least, was going to take some time. We were running a marathon... a marathon that we had not trained for. Anyone can muscle through a 5K without training... but a marathon?! No way. Every month was a struggle to keep going. But this was the path we were being led down... I had faith in my doctor and faith in myself that we were doing the right thing. I had more and more faith in our marriage... the harder our struggle got, the more we learned to cling to one another instead of pushing away. On this same note... little by little I was learning to lean more on God. Piece by piece I was handing him parts of my struggle to help me carry... it wouldn't be long before I gave him all of it, but that is a story for another day.

 

We still haven't reached the finish line... but we keep on truckin' down this rocky road. At least we are on this road together. "Together" makes all the difference.

 

From where You're standing Lord, You see a grand design

That you imagined, when You breathed me into life

And all the chaos comes together in Your hands

Like a masterpiece of Your picture perfect plan

 

One day I'll stand before You and look back on the life I've lived

I can't wait to enjoy the view and see how all the pieces fit.

 

Song: Already There by Casting Crowns

A New Start... and a Plan

Beginning of June 2012

Believe it or not, finding a doctor was an easy task. When my sister in law had her baby, I was amazed at how her doctor treated her as not only as a patient but as a caring friend, offering "suggestions" to her instead of telling her how she thought everything should go. She had urged me to go to this doctor before but I didn't want to change at that time. Now? I was ready... I was MORE than ready. I never wanted to step foot back in my regular doctor's office again! And I haven't! (well except to pick up my medical records)

So, I called her doctor... got the nicest receptionist I have ever spoken to on the phone... "I would like to make an appointment with Dr. So and So please."... "Oh, Absolutely! Have you seen her before?" "No, ma'am." "Okay well it might be a couple of weeks before we can get you in as a new patient, is that okay with you sweetie?" "Yes!" if I had anything it was time right? I got an appointment just in time to start medication for my next cycle, if that's what she wanted to do.

In the meantime, I went on a trip. A much needed trip with my mother to the beach. A few days in the sand and sun and outlet malls. I thought of our baby so much on that trip, I spent a lot of time deep in thought, scared of what was to come, going over and over what had brought us here in the first place... but by the end of it I was really missing my husband and ready to start our "infertility journey"

 

 



My first appointment at the new office had finally arrived. I was ready. Scared but ready. I waited all of about 10 minutes before I was taken back to a room. Already an improvement from the hour and a half long waits at the previous office. Once they did my vitals, I waited for the doctor, who was in the room before I knew it. She introduced herself then asked me a few questions... then suddenly she stopped and looked at me and said "you look so familiar, have we met?" Wow yeah once. "We met when you delivered my nephew, 'the mom' is my sister in law." "Yes! I knew I recognized you!" Even more progress. Talking to her was like talking to a friend I had known forever. There was no intimidation, there was no talking down to me, there was only her talking me like I was a person that she cared about!! Talk about PROGRESS!! We went over everything that had been done so far. What my labs were, what they should be, what isn't working. The she asked how I wanted to go about this.

She gave me a list of options:

• We could keep trying naturally for a while.
• We could try clomid.
• We could try naturally and then add progesterone later.
• We could try clomid and progesterone supplements together.

Then she gave me her recommendation... first she asked how badly we were ready to get pregnant? I had told her about her first pregnancy and all my feelings, etc. I told her we were ready to be parents yesterday. She giggled and then said, "okay then. If we are going to do this, I think we should give it all we've got! Here's what I think we should do to give you your best shot..." So there was a plan. I would take clomid on days 5-9 of my cycle. We would start taking ovulation tests on day 9 until I got a positive one and then a negative one. We would start progesterone supplements 3 days after a positive ovulation test and continue them until I either started my period or through the first trimester if we were to be pregnant. She also recommended that we continue charting using the basal body temperature thermometer. She also wanted me to have a sonohysterogram (an ultrasound guided test where your uterus is filled with saline and the interior of the uterus- the endometrial cavity- is evaluated). I left feeling confident... confident about our plan and confident that she REALLY wanted to help us. Just the fact that she cared brought me so much comfort. I was so grateful that she had come into our lives! I remember thinking on the way home... "Okay God, I'm ready... let's do this!" I'm always comforted when there is a plan of action, a direction to head that I can focus on.

I was not prepared for how my body would react to that first round of medication...
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If you are starting your infertility journey, the first thing I would ask you is... How do you feel about your doctor? If you have a good relationship, fantastic! If you are iffy... LOOK AROUND! So many doctors these days treat you like just another patient. This is a journey where you need your doctor to be an advocate for you! If you feel like you aren't being treated as well as you should... then that very well might be the case. I know it can be hard making a transition to a different doctor, especially if you have been going to the same one forever. Find someone who has been in your situation, ask them about their doctor, the tests they've done etc... Do research on what should or should not be done in your situation, ask questions... LOTS of questions. Write them down so you don't forget them. Don't be afraid to asks for tests to be done. BE YOUR OWN ADVOCATE TOO.

Second... This process is overwhelming! You are going to need a 'sister' to lean on through this that completely understands what you are going through. Find a support group or someone you can call, text or e-mail when you have questions or thoughts or just need to vent! I understand no one wants to be a member of the 'sisterhood' of women who have lost babies and/or are infertile, but I can tell you that you won't find a better friend than someone who has walked in your shoes. If you are in need of a support group I can recommend one to you. If you need a friend... I'll be your friend. I am here to answer anything you want. thejewells319@gmail.com

You always think the only thing you need to get pregnant is a man... but in our case, we need a doctor too... and a WHOLE lot of faith... and a WHOLE lot of support!!

May

I had my blood drawn in May 2012 and was told that they would have the results in a day or two. I waited... no call... I called, left a message... no call... waited again... no call... Called AGAIN, left another message... no call... After over a week of trying to get the results to ONE blood test, I was angry. I was beyond frustrated with how that office had treated me with my miscarriage, now they won't even tell me about a simple blood test?! So I called again, insisting on speaking with SOMEONE. So I get my doctor's nurse. I told her I had been trying for over a week to get the results to my progesterone test. Her response was, "well the doctor is too busy to look at your results." "Too busy? After a week?! Can't you tell me anything?" after a very loud obnoxious huff... she says, "fine, it's low" "What do you mean low?" "I mean, low... abnormal" "Okay... so I'm not ovulating?" another huff "Probably not" ... "When will I hear from the doctor?" "Whenever she has time to look at your results." "Well, since she is so busy, when will that be?" "I don't know!" "Okay, well she had talked to me about getting on clomid if I wasn't ovulating. Will that be called in?" "No... you'll have to see her first." "Well when can I see her?" another huff then she gives me an appointment.

This all transgressed on the day my beautiful nephew was born. I was angry about the call. I was upset that my body wasn't working. I was overwhelmed about my nephew's birth. So I found a place to go cry quietly alone for a few minutes. *breathe Stephi, you've gotta get through this day* So I would hold most of it in until I got home. That day wasn't about me. It was about my beautiful sister in law and my amazing brother and the birth of their child. Medication worked for her... maybe it would work for me too. Ethan's birth gave me hope.

My nephew was perfect. Beautiful. Ethan James was in the world. My first thought was, I wish I was holding my baby. But I was overwhelmed with joy for my brother and his wife. So I held him and cried. He was perfect and healthy. It was such a long happy sad emotional day.

I would let it all out when I got home.

 

Soon, it was time for my appointment. This would be my last appointment at this office. After being tossed around during our loss then the fiasco to even get lab results... I was fit to be tied... then there was the straw that broke the camel's back. The doctor that I had been seeing for nearly 10 years, since I was 17 walks in and says. "Hello Stephanie, I'm dr. so and so, I hear your having trouble getting pregnant and want to get on clomid?" Hold on... you're introducing yourself to me as if you've never seen me? "Uhm, I was in here a few weeks ago, you did my yearly checkup, I've been seeing you since I was a teenager... and YOU were the one who wanted to prescribe me the clomid..." She had this deer in headlights look, looks through my chart... and then gives a half hearted... "Oh yeah..." I got my prescription and left. I stopped at the front desk and immediately told them I would need a copy of my records and wouldn't be back, I was finding another doctor. Getting those records was the best $25 I ever spent, of course they were 'too busy' to get them right then, I would have to come back to pick them up in a week or so.

I had done as much research as I could do on progesterone deficiencies and annovulation, they all had the same conclusion... infertility. I hated the idea of that 9 letter word... I-N-F-E-R-T-I-L-E. It made me feel like a disgrace. Like I hadn't felt like that enough when we lost our baby. Now suddenly, me saying "I'm not worried about getting pregnant" to my mother seemed ludicrous. How did I not know there was something wrong with me? First I had a new mission. I was finding a doctor that actually wanted to help me. Not just a careless office that herds you through the doors like cattle.

Then I went home... thinking the same thing I had thought a thousand times prior, but now it was more compounded... "God, why is this happening to me?"

I told my husband everything... at this point I fully expected him to want to trade me in for a newer better model of a woman, one who could carry his babies... one who was capable of giving him babies. I had never felt more like a failure. His response? "We will do whatever we have to do"... there he goes again with the "we"... never laying the blame on me, taking some of the burden upon himself instead. He was also tested that month, and passed his test with flying colors. Even though he had no issues himself, he would still help me carry this burden.

There was some good news that month, however... our sweet Sophia was getting better. Although our vet warned us that she could go up and down for a long time... for this time, she was better... and she became a light of hope in our broken world. This little puppy was living evidence of answered prayers and miracles...