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

Clomid, the Jekyll and Hyde of Medicine

June 2012

So there we were with these magic pills that are supposed to make my ovaries work. I felt like Jack with his magic beans... this will work. I knew it. It had to, right? I took them as directed. Whoa.

Now if you do your research... you will find that the risk of side effects from this medicine, especially the low dosage that I was on (25mg), is pretty low. I had all of them.

• Hot flashes. These were particularly bad at night, I would wake up drenched in sweat. It was gross and uncomfortable. Not to mention that I work in the only doctor's office in the world that is perpetually too hot. Not a good combination.
• Bloating and abdominal discomfort. Good thing I wear scrubs most days. Whoever invented that drawstring thing is a genius. The other time I would have to spend in either sweats or leggings.
• Weight gain. Yep, I gained 10+ pounds in a matter of days. That's normal right?
• Mood swings. Goodness... the mood swings. I could go from being the nicest person in the world to being the angriest in a matter of seconds. Oh and let's not forget the crying. Just one "joke" from my husband could put me in the floor in a pile of tears in no time. This would take some adjustment. We argued, I got mad at anything he would say. Oh you don't want to eat what I cooked for dinner? Welcome to World War 3. Any jokes felt like a good swift kick in the stomach. Instantly I could produce enough tears to fill a salt water swimming pool. It was awful. I didn't feel like myself. I knew my husband had to be wondering where this person came from and how he managed to marry this lunatic... the hardest part was that I couldn't help it. No one warned us that it would be this bad. For that "medicated" week, I didn't even know who I was and why I had no control over this!
• Nausea. Check.
• Dizziness. We aren't just talking a little bit. We're talking, try to lay in bed and watch the world spin around you kind of dizziness. Like after taking strong pain medicine and seeing "trails" behind things. Like drinking an entire bottle of wine and then trying to work.
• Headaches. Ugh. I have battled migraines and chronic headaches all my life. Why not take a medicine that would compound that?
• Alopecia. To pile on top of how bad I felt about myself... my hair began falling out. Fantastic.

So here I was... with this whole list of things that no one warned me about. Okay so I was warned about maybe one or two. Apparently my sister in law is the Hulk when it comes to taking medication because she barely had any side effects, if only I could be the same way!! I was very sensitive to this medication. You would think that would be a good thing right? I could take this small dose and then voila- PREGNANT!! Nope. Insert severe abdominal pain and more weight gain. Enough to make me call my GYN.

So I went in and they did an ultrasound to see what was going on. "Wow" the girl said... "there's a lot of cysts here." Boy, was there. More than 5 large ones on each ovary, and a variety of smaller ones as well. I knew that stuff was supposed to produce follicles... but that many?

Then I was taken into my Doctor's office, and she closed the door. Well this can't be good. "Are you in pain?" Yes. "How much weight have you gained?" More than I should in a matter of days. "Okay, I'm going to tell you something and it is going to upset you" ... "You shouldn't try to get pregnant this month" WHAT?!? But that's the whole point of THIS!! "You are suffering from OHSS, ovarian hyper stimulation syndrome. The risk of a great number of multiples is too high, and you are my top priority. I think it would be too much of a risk to your health if that was to happen." Tears. "I'm sorry, I know this sucks." What is the risk of this happening? "Well that's the hard part to explain, I have never in my career seen anyone get hyper stimulated from this low of a dose." Ugh. Go figure, me, the interesting case. "I'm so sorry this is happening." At least that was genuine. The thing is, if you get pregnant while suffering from OHSS, it gets worse... much worse... and lasts throughout the first trimester. She got misty eyed herself watching me take all this in. The infertile woman who is now too fertile and told she can't even try for a baby this month. It was awful. Yet another time I regretted telling my husband not to take off work to go with me to an appointment.

When I left I called him on my way home and gave him yet more bad news. I was sentenced to go home and rest. Take the next day off work. AVOID water because that can apparently make the condition worse. Load up on Gatorade and/or PowerAde. No I would NOT be able to run that fun LuvMud 5K we were looking forward to, but I could go and watch, as long as I sat most of the time, and didn't get overheated.  

It was on the way home from that 5K that the cysts began to rupture. Holy cow. It was intense. Miserable. Even with the pain medication. When I got home, all I could do was either lay in the bathtub in the hottest water I could stand or lay in bed on a heating pad... trying to manage the pain. I drank as much as I could... the thirst was indeed excessive. There would be no baby making this month.

Later I would regret agreeing not to try that month. But I would have many "if only" months ahead.

This is when I would begin a strategy to avoid falling back into my depression. I keep a list of blessings in my head. On those bad days I would go through a list of good things in my life. Sometimes it kept the depression away, sometimes it didn't. I still found myself asking many times... "God, why is this happening to me?" "Why does this have to be so hard?" I still wasn't leaning on Him like I should. I should have been casting my burdens upon Him, letting Him help me to carry them... instead I was questioning Him a lot... At least I was talking to Him. FINALLY I was talking to Him on a daily basis. Progress.

I prayed for strength to get through this. At least I didn't have to be admitted to the hospital as many women who suffer from OHSS do, I had a mild case... and if this was a mild case I sure as heck did NOT want to experience a severe one. I would be closely monitored from here on out.