Friday, August 16, 2013

Testing, testing, 1-2-tee-tee

I went in to this weekend with no firm plans, but the intent to go and do whatever in the world I pleased. I now have plans, and I am planning to be at home. 

Today I went to en endocrinologist for a follow up from my pituitary adenoma diagnosis earlier in the week. I saw an endocrinologist I had previously seen for PCOS follow up and he is a really great doctor. My reproductive endocrinologist had checked labs on the pituitary hormones that fall under his scope of care and that included FSH, LH and prolactin. My medical endocrinologist needs to check my Adrenocorticotropic hormone, which we will call ACTH from this point on because typing it out hurts my fingers.

I know I have probably complained in the past about fasting labs. I abhor fasting labs. I can deal with not having food in the morning; it's the coffee deprivation that makes me cranky. Anyway, the positive thing about the blood draw for ACTH is that it does not have to be done while fasting. The negative? It is preceded by a 2 day urine collection. The neutral? I will also be doing a saliva sample as part of the testing.

Lily is pretty excited about the urine collection. As soon as she walked in the door, she began going through my urine collecting swag bags. The shovel is her left hand is not in any way connected to this urine collection.

Despite Lily's excitement about the supplies, there are a couple of drawbacks for me.

1) The urine must stay cold. I repeat, the urine must stay cold. I will be storing the urine in my refrigerator. Now, I am not perfect housekeeper. There is actually a cake in a Pyrex dish in my refrigerator right now that has been growing the next miracle drug/mold for longer than I would like to admit. That being said, there is something about storing urine in my refrigerator that really grosses me out. I am that person who flushes the commode with my foot and touches no fixtures in a public restroom. My grandmother taught me to cover toilet seats with paper when I was 3. I am going to have urine in my fridge, right next to the coconut milk. Yuck.

2) I can't really go anywhere. I will be doing two separate urine collections, each for 24 hours. I am planning to pack a cooler for church so I can bring my urine with me. That sounds so sick and wrong. I do want to note that my cooler will be in the car, not sitting next to my purse and Bible. Anyway, being confined to my house for a weekend is huge for me. In case anyone has not met me, I am an extrovert. The last time I did a personality test, I was considered an extreme extrovert. I will do my best to stay home, but if you see me walking through the outlet mall carrying a little igloo cooler, don't judge.

Did I mention that I don't have to fast for the blood draw? 

I am looking forward to knowing more about my pituitary function and am thankful for amazing doctors! If nothing too crazy shows up in these tests, it looks like we will be able to start injectable FSH and LH next month in hopes of giving Lily a sibling who can share in her excitement of urine collection jugs.

I will leave myself with one last thought:

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."
Philippians 4:6 

Wednesday, August 14, 2013

And the MRI Results Are In....

When my doctor's office called on Thursday and told me my MRI results were in, I was beyond ready to find out what they were. They did not tell me the results over the phone, as they usually do when a result is completely normal, so I figured there must have been something found. On the other hand, they did not ask me to immediately come in for a consultation, so I figured my brain would not be exploding at any given moment. They scheduled me to come in the next Tuesday, which happened to be today, so I went home and began the feverishly searching Google for updates on my demise.

My doctor probably thought I was pretty smart, because today I was pretty much an expert in the pituitary gland and its role in the endocrine system. I have slept thousands and thousands of times since my last biology class, so the free Google refresher course was pretty helpful. Of course, Google has a way of leading a person to health message boards, which are notorious for people who thrive on sharing their peculiar medical conditions. Sure, I read about a few average cases, but who isn't intrigued by the pituitary tumor wrapped around the carotid artery or the woman who became blind when a pituitary tumor pressed on her optic nerve?

So anyway, on to the results. Today I found out that I have a 6x6x7mm tumor on my pituitary gland. It is an adenoma, benign, and there is no way to know how long it has been there. The gland itself is about 1 cm in diameter, the size of a pea, so my 6mm tumor is a little more than half the size of the gland. My tumor is not perfectly round, but it has what seems to be a very awesome tail to keep things more interesting. I am thinking of the tail as a mullet of sorts, just to keep a little party in the back. The symptoms associated with it have been with me for at least 15 years, but it seems it is medically impossible to conceive a child with a pituitary adenoma large enough to inhibit FSH and LH production. Since I did conceive a pretty awesome child 4.5 years ago, it would make perfect scientific sense for this tumor to have formed after Lily was conceived. We'll never really know, but I have dealt with amenorrhea and an annovulatory system since I was about 20 years old. Figuring that in, there is no "logical" explanation for how we got Lily, but I am so glad we did.

It might sound a little crazy to be thankful for a tumor diagnosis, but I am actually pretty pleased with it. No, I am not a hypochondriac. I generally have to be convinced I am sick. I have thrown up in some very public places in attempts to convince myself and those around me that I was perfectly well.

Really, though, finding what is actually going on is a wonderful thing, and here are a few of the reasons why:
  1. I will not be having my ovaries drilled. As excited as I was about marching into the surgery center wearing a "Drill, Baby Drill!" t-shirt and carrying a "Let My People Drill" poster, I am pretty relieved that I will not be undergoing surgery. I am bummed that I won't be getting those days of relaxation that follow the surgery, but avoiding anesthesia and the pain of recovery is a pretty good trade off.
  2. I found out this pituitary adenoma has affected my prolactin levels, making them very low. This might sound dramatic, but one of things that caused me the most anguish was breastfeeding. I had read hundreds of pages in books, spent an entire Saturday in a pricey breastfeeding class, went through three lactation consultants, rented a hospital grade pump and tried every home remedy known to man. I just did not produce much milk. Instead of sleeping while my baby slept, I was pumping away to no avail. To be honest, I had always been able to achieve pretty much everything in life I had worked for, and there had been few things in life I was willing to work as hard for as breastfeeding. I kept trying and trying and prayed that no soul would ask me how it was going. According to my medical records, my prolactin levels have been off for a long time. I am finally letting myself off the hook on my breastfeeding failure, and it is pretty cathartic.
  3. The size of my tumor is pretty significant, but not so much that they will be cutting through any tissue to take it out. It is large enough to cause some major hormonal upheaval, but small enough that I won't need surgery. Every time I dodge the surgery bullet I am pretty happy camper.
  4. I finally know why I don't ovulate. That is huge. Knowing the "why" provides a path to the "how." My physician has a laid out some great options for us. After I follow up with an endocrinologist (my genius doctor is a reproductive endocrinologist), I will receive injectable gonadotropins to induce ovulation. My condition is rare, but my doctor has a 100% success rate in dealing with it.  
Most importantly, I have answers and I am so thankful for them. I have spent a lot of time in prayer during this time of trying to conceive a second child, and prayer naturally leads me to scripture. I have had the "barren" women of the Bible on my mind and heart and have found such empathy with them. Even as a child, reading their stories gave me a heavy heart, but during this time in my life I have begun identifying with them in even greater ways. I can feel their sadness, but most of all I can understand their unanswered questions. Even when I was vaguely diagnosed with PCOS, I knew there were some answers to be found in modern science. I could see my ovaries on an ultrasound screen. I could hope to benefit from modern medicine. I had answers and understanding of the complex reproductive system, while women like Sarah and Rachel and Hannah had to rely solely on the unseen. Because I have the blessing of modern medical science, I suppose I will never know how I would have handled my infertility journey without it. Of course, I do know one thing; my faith has made all the difference in my outlook and for that I am eternally grateful. I don't know what the future holds, but I know God's will is perfect. Tonight I take comfort in knowing that and in reflecting on a scripture that has led me through the best and worst of times.

"For I know the plans that I have for you,’ declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope."
Jeremiah 29:11

Thursday, August 8, 2013

Pray, Love: If I were an MRI, where would I be?

I learned a few new things on Monday.

1) I can be still for 30 minutes.
2) I am not claustrophobic.
3) The MRI machine was not quite relaxing enough for that nap I've been wanting.

I went in on Monday morning for the MRI of my pituitary gland. Depending on the results, I will either undergo my ovarian drilling (most likely outcome) or treat the pituitary issue before the ovarian drilling. All in all, it was the normal medical procedure experience.  I had the eccentric waiting room people, the daytime TV exposure and had to go to the bathroom several times despite fasting.

There was a guy listening to various covers of "Seven Spanish Angels" at a very high volume in the waiting area. I still prefer Willie and Ray to anyone else. I did make eye contact with the wrong person during the Elvis Presley version and we did, indeed, laugh out loud. As would be expected, the guy with the music was oblivious.

Everyone was so friendly, but each reminder that this was a brain MRI was a lite disturbing. It sounds much better when you say we are "scanning the pituitary gland". They all worked very efficiently, so much so that I only caught part of The Price Is Right in the final waiting area. I don't see a lot of daytime TV because my job does not really allow that so this might not be news to anyone, but Drew Carey is skinny! 

Before I went in for the MRI, I had to run to the restroom. It would seem like having no food or drink that morning would have kept me from needing that potty trip, but I am thinking the gallons of water I consumed the night before was catching up to me. They directed me to the restroom and, seriously, give a girl a warning that when she turns the corner there will be 3 completely sedated people on gurneys in the hallway. I almost didn't need the restroom. Freeeeaaaky.

The gentleman doing my MRI was awesome, so much that I took down his name so I could pass along the compliment. It was not a bad experience at all and I never pressed the panic button. Most importantly, I was completely still for 30 minutes. This is a huge accomplishment.

I waited 24 hours for the results, then 48 before calling for results.

Oh, wait, they can't find my MRI. 

I am guessing this huge brain of mine completely baffled the machine. The other possibility is that someone was using the computer to  play on social media and deleted my MRI to make room for some of those dirty bathroom mirror self portraits. There is also the possibility that they will find it tomorrow. 

Tomorrow we shall see. If they don't find it, I will schedule a new on ASAP. Once we have results, I can go in for my surgery and get the ball rolling. Let's get to that ovarian drilling!

All in all, it comes down to the perfect will and timing of God, and perfect works for me.

"Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord." 
Psalms 27:14 NASB

Friday, August 2, 2013

Pray, Love: Slight Change of Plans

What a change a day can make! I will still be undergoing in the ovarian diathermy, but it looks like we will be waiting 2 weeks.

I have always worked to be a bit of an overachiever, but sometimes I really outdo myself. I met with my OB/GYN/RE today and he had spent a lot of time studying my labs. He found that my luteinizing hormone (LH) and my follicle stimulating hormone (FSH) are very low and based on these findings, it seems that we will be taking a slightly different approach.

Basically, PCOS can originate from two different factors. In the end, you have much of the same result as far as the effect on the ovaries and reproductive system. Because the factors causing the PCOS differ, the ways of treating the two types will differ also. About 95% of women with PCOS have peripheral factor PCOS, where the syndrome is ovarian in origin. The other 5% have central PCOS, where the amenorrhea originates from a central endocrine problem triggered by the hypothalamus and/or pituitary gland. My labs reflect a central origin and I will need to have an MRI to take a look at my hypothalamus and pituitary gland before I have the ovarian diathermy.

We will still move forward with the diathermy and injections in two weeks unless something really crazy shows up on the MRI. It will set things back a couple of weeks, but all in all it does not have a huge effect on our timeline.

Here are a few things I learned today:
  1. Although the central factor PCOS is much more rare, my doctor actually has a higher success rate in helping couples dealing with this type of infertility.
  2. I won't be getting that nap.  
  3. I am a little resentful that I had to do a pre-op phone call and tell someone how much I weigh. I have to do the call again in two weeks and will have to utter my weight again. Not cool.
  4. People in waiting rooms are annoying. I was sitting in the waiting room with a couple obnoxiously speaking in a high volume whisper tone. My very loud 3 year-old's inside voice is quieter than the whispers these people were letting out and I had to work hard to maintain my composure. Suppressing your laughter for 30 minutes is very difficult. They got up and were replaced by gum popping couple. It was sort of like a SNL sketch, but much, much longer.
  5. My new injection regimen will consist of FSH and LH, increasing the chance of multiples. Fortunately, my doctor will scan me daily during the injections to make sure we aren't getting too productive.
  6. With the new likely diagnosis, my doctor is even more baffled that we have Lily. I am not sure how it can be scientifically explained that I ovulated for what might have been the only time in a 15 year period. I do know that I was earnestly praying and that she came at a time when we had significant loss in our family and she was a perfectly bright spot. What a special girl!
Thanks again to everyone for the prayers. That means more than you can ever know! I really struggled with the idea of making our infertility struggles public because I have never been the type to freely share my burdens with others. I had a couple of reasons for sharing. First of all, people naturally want to know if you are wanting another child or trying to have another child. I don't find it offensive when people ask, but when you reply by telling them you are struggling with infertility they naturally feel like they inserted their foot in their mouth. By being more up front and open about our struggles, I can save people that awkward feeling. The second reason I decided to share this struggle was to ask for prayers, because "the effective prayer of a righteous man can accomplish much." (James 5:16) Thanks so much for taking the time to pray for us!

Thursday, August 1, 2013

Pray, Love: And We Are Drillin'


Ovarian Drilling.


I remember when I first started researching PCOS and infertility and I came across a thread on a message board covering the topic of ovarian drilling. I cringed, mainly because that is what I do when I give any thought to medical procedures. The cringing only increases when that procedure has a barbaric word like "drilling" in the name. It sounded like an archaic procedure and one I would never have to worry about. After all, we are in the 21st century and have so many less invasive techniques available. Drilling. Why on earth would I let someone drill holes in my ovaries?

So anyway, I am having it done on Friday. By Friday, I mean the day after tomorrow.

About a month ago, I was sitting across from my incredibly intelligent reproductive endocrinologist discussing my pregnancy with Lily, from the ease of conception to the ease of being pregnant. We then began discussing the much bigger picture. I had ovulated one time in six years. I gave Femara a shot and only ended up with a whole lot of little follicles. I am not getting any younger. He sensed that I love information and he began sharing the history of PCOS diagnosis and let me watch really cool slide shows about FSH and LH production. He began telling me about an old procedure used 80 years ago where a doctor would take out a piece of the ovary of a woman with PCOS for diagnostic purposes and the woman would end up having regular ovulation. Over time, the surgery has become much more sophisticated but still has very desirable effects, particularly for women who have dealt with PCOS since the onset of puberty and for women who have not responded to drugs such as Clomid or Femara. The procedure is now done as an outpatient procedure, it is laproscopic and they use lasers to drill the holes. They also call it ovarian diathermy now, which sounds a lot better than drilling. In the end, there are still holes, but I sure do prefer the word diathermy. The success rate, when combined with some FSH injections, is high. I'm in.

I was planning to have it done later in the month of August, but at an appointment on Tuesday I found out there was an opening for Friday, 8/2. I took the opening and am hopeful and prayerful that this will help us complete our family.

To break it down without the use of acronyms like PCOS and FSH and LH, here are the key reasons I am doing ovarian drilling:
  1. Doug and I desperately want another baby and my doctor feels like this is a great opportunity for success.
  2. Lily needs a sibling. She is constantly bringing imaginary siblings into our lives and they have names like "Buh-LIE" and "Lore".  She has chosen one of her baby dolls to be her baby brother and from time to time she tries to get him in trouble. She also attempts to make us feel guilty for neglecting our plastic baby. She will make a great big sister some day.
  3. I need a nap. The way I understand it, I get to rest for like 3 days following this procedure.
  4. I've always been a little curious about general anesthesia and how it would feel to be under. If I end up on YouTube while coming off the anesthesia, anyone responsible will not get to hold the baby I am hoping this surgery helps produce.
  5. Ovarian diathermy has other medical purposes for me as well, so unlike most fertility treatment, this procedure is covered under insurance as an outpatient surgery.
  6. I hear you get pictures from the surgery and, although my child is adorable, my Facebook needs something more exciting on the wall.
  7. I have always avoided surgery like the plague, but the prospect of this helping us conceive a child makes it to great to pass up. Hannah was willing to promise God she would take her little boy and let him serve in the tabernacle, away from her, for the opportunity to bear a child (I Sam. 1 &2). What's a little drilling in comparison to that huge sacrifice?
I am going in on Friday and hope to have a smooth procedure, a speedy recovery and the positive outcome we so desperately want. Please keep us in your prayers as we take our next step in our journey to completing our family!