About Me

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North Carolina, United States
(Allie & Harris) Wife, teacher, patient, thinker, friend, worrier, planner, seeker. These are the hats I wear on a daily basis for the roles in my life. Harris and I've been married since 1999 and we have two fur babies of the feline sort. We have a pretty good life, all things considered. But, it's not complete. Seven years ago I received a diagnosis of PCOS, a condition which has taken a toll on both my body and soul. It will not beat me though and we will be parents.

Saturday, July 23, 2011

The Beginning

Logic dictates that in order for there to be an end, there must also be a beginning.  So, this first post will tell some of the beginning.  Surely, no post in the future will take this long to write or read.

Six years ago, I went to my OBGYN and was talking to her about the usual things you talk about in that setting.  However, what was unusual that day was that I saw a doctor new to the practice who was a good decade younger than the two doctors who owned the practice.  It was on that day, in the first 10 minutes of talking to me about my irregular cycles, prolific bleeding, irregular hair growth, and family history of menstrual problems that she looked up and asked, "Have you ever heard of PCOS?" 

Not only had I never heard of it, but in the 8 years I had been going to the same gynecologist, never had anyone brought up that there was a "condition" that could explain the problems I'd had since I was 13 years old.  That was a shock to the system.  But, it wasn't THE shock that day.  No, what came next almost dropped me to the floor right there.  "You may never be able to have children."

If I close my eyes, I can still be in that room, in that moment, with that doctor, hearing those words.  Almost like some kind of vortex that sucks me back through time, I feel there impact still today.  I had been married for six years at that point and, although our plan had always been to wait 10 years, we wanted children.  Adoption had always been in the plan for us as a way ot add to our family, but it was not the primary goal.  Never, ever, not once did we think that we would have problems having a baby.  Why would we?  I knew that both my grandmothers had experienced miscarriages and one had even had a stillborn.  But, it wasn't until I started digging further that I found out about the other pieces of my family's problems having children. 

In fact, one of the most validating conversations I had in the early days of all of this happened after my grandmother (Memaw - we're Southern and that's what we all called her) entered an assisted living facility.  Within a week, I went to her and told her what I was facing because I thought she'd had a stillborn.  Turns out, that wasn't exactly true and it wasn't exactly the whole of it.  She'd had a baby that was born and then died, which was followed by several miscarriages.  On that day, I really "met" the woman I'd known all my life.  I wasn't given pity, trivial sayings, or promises of a rose-colored future full of children.  Instead, she was compassionate, honest, and straight-forward when she told me her story and said she was sorry. 

So, not to get weighed down in the details too much, I investigated family history and discovered women all over my family (on both sides) who'd had miscarriages, fibroids, clotting, and surgeries to correct a myriad of other problems.  I confided in my husband who was totally supportive and at a loss for how to fix the situation all at the same time.  I cried.  I researched.  I told no one.  Then, I told three people who, when combined, know all of my secrets.  The first miracle that happened in this journey came quickly thereafter when one of those people explained that the sadness I was feeling came from, "mourning the children you may never know."  Perfectly stated.  And, once I had a reason for feeling so deeply, completely, all-consumed by sadness, I was able to move ahead.

My husband and I talked and decided to advance our timetable for having children.  We went off birth control pills and began, well, doing what you do in order to get pregnant.  We did it like newlyweds for almost 2 years.  I continued to have irregular cycles.  This was nothing new because ever since I started, my cycles may come in a month, 6 weeks, 4 months, or beyond - with the record being 11 months.  The other side of the coin was that when I was off the pill, I couldn't stop bleeding either.  In fact, when I met my husband I was in the midst of what would turn out to be a 6-week long bleed.  We did 3 rounds of clomid towards the end of that time with longterm bleeds in between due to the PCOS.  I never became pregnant in any of those 24 months.  Sucks when you continually see negatives on that stupid pee stick over and over.  Stupid stick.  I hate those sticks.

After the 2 years, Harris and I evaluated our options and decided to look for help beyond my OBGYN.  We went to work looking at our options and heard about a place in Rockville, MD that had one of the best track records in the country for this sort of problem.  They also offered a 6 round IVF package called a "shared risk" opportunity where, if I didn't get pregnant, I would get back the majority of the $20,000 investment.  We would be out the money for the medicine and any costs we incurred going back and forth to Maryland.  Thankfully, we had a couple of options for places to stay that were within an hour of the clinic.  That worked for us and we drove up for the consult. 

We filled out mountains of paperwork prior to leaving and had to do the most detailed family history ever created - try keeping this a secret when you ask your MIL if anyone on her side of the family has had diseases like schizophrenia or conditions like low sperm count and trouble maintaining an erection.  It's laughable, but we had to find a way to ask those questions by directing conversations around opportune moments (Thank the Lord for Viagra commercials!) over a period of several months, so as to not arouse suspicion.  When we finally got there we were told that they had a waiting list, first, and that I would have to lose weight to qualify for the IVF program.  Since clomid had not worked in the past, I was not interested in doing that again.  So, when we left, we had a plan.  Lose weight and then do IVF.  Sounds easy, right?  Ha.  The first rule of infertility is that "easy" is a bad word.  Nothing is easy.

PCOS is deceptive and duplicitous in its nature.  Where there is a path that seems like a straight-forward solution, watch out for chasms in the road which will drop you to unknown depths.  You never see them coming and you have to fight your way out of them.  In the beginning of that time when I had the plan, I had consulted with a nutritionist, developed a general eating and exercise plan, and was on track for losing the weight the doctors wanted.  I hated every minute spent walking around that stupid track at the hospital but I did it, three times a week.  My friend helped me with figuring out what to eat, and with the combination of the two things, the weight did start to come off.  This began in January and went on thru May 22nd when I had lost almost 40 pounds but started to bleed again. 

This time, the bleeding didn't stop after a week, or even a few weeks.  I was having issues with clotting and low iron because of the amount of blood lost.  By the second week, I had to stop walking because I couldn't make a lap without an *obvious* problem.  Doctors put me back on birth control to try and stop it, then they doubled the dose, but nothing worked.  At one point, they even tried to give me something to make the bleeding heavier in an attempt to "get rid of everything" and have it stop.  Again, didn't work.  What started in May as awful and heavy, went on until the doctors finally decided to do a D&C procedure on September 23rd of that year.  At that point, I didn't care what they did to me because I was so tired and stressed out.  I was beginning the final semester of (a very long journey thru) college and doing my full-time student teaching in the 3rd grade.  To say this was an inconvenient time for surgery is an understatement.  I was told that if I missed more than 2 days during the internship, it would have to be repeated and I would not graduate.  So, I left school on Thursday afternoon and had the surgery Friday morning at 7:30 with a recovery at home over the weekend and headed back to school Monday morning.  While they were in there, they found a polyp attached to my uterine wall and took that out in addition to doing the D&C stuff that day.  It came back non-cancerous and I was thankful.  After 5 days, I stopped bleeding...then started back again 7 days later.  The optomist in me wants to point out that at least I got a week long break!   Whoo hoo!!! 

The uterine cultures came back showing an infection and I was put on birth control pills (again) and two antibiotics that were supposed to get things back under control.  I took the pills and waited...and waited...and kept on waiting.  This is the part where I really was feeling like I would lose my mind because not only is it inconvenient to have this literally sucking the life out of you, but it also impacts relationships with people.  I couldn't go on long car trips without worry.  I had trouble flying because of having to be in the restroom so much.  Not to mention that my husband and I had gone from an intimate relationship that rivaled newlyweds to one where there was little or no action for months on end.  It was horrible to say the least. 

We (meaning me, because I plan all of our travel) had been looking forward to a trip for our 10th anniversary in Belize where we planned to go snorkelling and swim with sharks.  We had scrimped and saved and hidden away money so that we could have it all paid for in cash.  But, with me still bleeding, we were at a crossroads.  There was no way I was getting into the water with sharks while bleeding - no way, no how, not ever.  I watch "Shark Week" on Discovery and I've seen "Jaws" so I know that they can smell even a drop of blood from like a mile away!  I began praying every night that this would end in time for our trip...I mean seriously, come on, give me a break.  I'm only asking for a week.  Second miracle of the story, I stopped bleeding the morning we flew out of the country.  We had a lovely trip, I did swim with sharks, we saw the famed Blue Hole, and I started bleeding again the day after we returned home. 

It was at this point that my OBGYN threw up her hands and said there was nothing else she could do for me because I had surpassed her level of expertise.  On some level, I tried to take that as a compliment.  You may as well laugh as cry, right?  That Sunday, at church, our pastor talked about the woman in the Bible who had the affliction of bleeding...lightning bold...she probably had PCOS and was related to me...if nothing else, we were certainly sisters in this situation and I sat in the pew and silently cried for her and myself...at which point my husband suggested we leave quietly thru the side door. 

One week later, I wound up in the office of my current reproductive endocrinologist who wasn't even phased by what I'd been thru for the last year.  (Oh, and just as the icing on the cake, I not only gained all the weight back, I was both bloated and anemic from bleeding for 7 months with only a 2 week break!)  In that first visit, Harris and I sat down in her office and recounted what had been our journey up to that point.  I expressed to her that I wanted nothing more at this point than to have babies and a hysterectomy on the day they were delivered.  Who could blame me after all this time?  She understood and didn't patronize me when I made the statement.  Instead, she said something akin to okay let's get to work then.  We went thru one round of Clomid (just to satisfy her) and two rounds of Femara (once with nothing and then paired with Metformin which has sometimes helped with fertility).  I never ovulated even once.  After 3 months, she met with me and told me that she was't sure I'd ever actually ovulated before. 

It was at that time that I began on injectible meds.  Now, anyone who knows me even a little will find this almost impossible to believe because I am terrified of needles.  Lots of people say that, but with me it's extreme.  I have panic attacks the moment I smell the alcohol or see the needle drawer open, which is followed by hyperventilating, and sometimes fainting.  In recent years I have signed waivers with various doctors that allow them to finish what they were doing if I faint before they revive me - I figure it's easier on both of us that way.  As far back as I can remember, terror seizes me with needles - I remember being less than 10 and having the doctor and 4 or 5 nurses holding me down to give me vaccinations as a child.  Please do know that I actually did go back and apologize to Dr. Middleton when I was 21 for all the grief that I caused him - he remembered and accepted my apology because it had been difficult for him too apparently. 

Getting back on track here though, I started off doing 125 iu of something per day which was piggybacked later on with a second shot to prevent early ovulation followed by a third shot on the day before I was to actually ovulate.  So, there were shots for around 12 days at 2 per day and one the last day for a total of 25 that first month.  My poor husband was stuck doing the shots and the first time he tried, he had to stop because I was turning purple and shaking uncontrollably.  He lost his nerve that night for a few minutes and did nothing but sit and stroke my hair and speak softly to me.  Fear is not rational, ever.  Went thru the 2WW and didn't get pregnant.  Turned out that we had been off by 24 hours that first time and that's a huge deal when you're on such a regimented schedule. Took meds for a period and started again.  This time we increased the dose to 175 iu with the two other things staying consistent.  Failed again. 

By now, it's August and I've found my first teaching job which will begin on the 25th of the month.  I had time for one more round before school started.  We began at the end of July (with another increase in meds) and I had several follicles that looked perfect.  Within 5 days of the targeted ovulation day, I began to bleed again.  So, I called the doctor and said I just needed a few months off to get my classroom up and running and regroup.  She understood and said to call her when I was ready to go again. 

It took me by total suprise that September day when I doubled over in the bathroom with cramping and began having my first miscarriage. 

Apparently, that bleeding that everyone had assumed was a period wasn't.  A second specialist later decided that it was implantation bleeding and the round had worked.  That meant I was about 5 weeks pregnant when I miscarried.  We had done no blood tests to confirm that I wasn't pregnant - we'd all just assumed and you know what they say about people who assume.  So, for that 5 weeks, I had been moving furniture, downing Coke like it was water, sleeping 5 hours a night if I was lucky, taking Advil for aching muscles and Sudafed for congestion twice daily, and on and on and on.  Regardless of what my specialists say, part of me will always feel like I squandered that pregnancy and the miscarriage was my fault.  Nothing I was doing was healthy and nothing I was doing made my infertile womb acommodating in any way, shape, or form for a child to live in.  The worst part of it by far was the look on my husband's face that first night of the miscarriage when I took the pregnancy test and we got a plus sign.  Damn plus sign.  For just a moment, he smiled with both his mouth and his eyes before the reality of what was happening set in.  I was in the process of losing our child and there was nothing we could do to stop it. 

One bitter lesson we learned was that when you miscarry, you will test positive for a while afterwards and it can take as much as a month for your horomone levels to come back down to zero.  In that month of self-loathing and crying, Harris and I both knew that we'd done the right thing by not telling our friends and family about the infertility.  I cannot to this day imagine having to recount that nightmare multiple times.  We were both broken and hurting so much that, as impossible as it may seem, we were numb to everything. 

It was December when I felt ready to go thru another round of meds.  The plan was to do it over my Christmas break so we would have less stress on us.  There was a bit of anxiety on my husband's part though because it turned out that our 2 hour window of opportunity was going to be happening at my mothers house on Christmas morning, just before family arrived with presents.  I giggled a lot that Christmas because of that - which was nice because it took the edge off the situation.  That round didn't work.

We did our 5th round of injectible meds in April and had some timing issues while we were on vacation - picture an older hotel on the beach with thin walls and screaming children next door.  It's not exactly conducive to what we'd been tasked with.  Kind of kills the mood if you know what I mean.  So, I called my doctor and told her the next day that it hadn't worked and we needed to plan for the next round.  When could she call in the meds to induce a period?  Turns out I had to wait 2 weeks before anything could be done and I said okay, but let's not put it off because I'd like to go back to back over summer vacation if we don't get pregnant.   

I had to go in for my follow-up appointment on a Friday.  Ten minutes away from my doctor's office I doubled over in the car with abdominal cramps and started dropping blood clots again.  My pain was so bad by the time I reached my doctor's office that I was sweating and sick to my stomach with chills.  When I went to the bathroom, the bottom fell out.  I didn't know what was happening and was only able to sit and let nature take its course for a while.  In my normal life, people are sometimes hesitant to work with me on things because I am a person who always wants to maintain control.  I am scheduled, planned, prepared, and want to know what's coming in every aspect of my life whenever possible.  One of the first things that this fertility struggle taught me is that control is an illusion.  I was robbed of control and found myself at the mercy of my body again that day as it purged another something from my life.  This time there was more evidence of what had happened and I had the memory in my mind of that day in September which had felt eerily similar to this. 

It was probably wrong, but I didn't take a pregnancy test after that to confirm what had happened and didn't insist that the doctor do bloodwork because frankly, I didn't want to know.  Unless you've been where I've been, you can't know the hurt that is felt in places you didn't know were possible following a miscarriage.  If you've never been in bed dreaming about a child that you've never known, don't judge me.  I cried for me; I cried for the loss; I cried for Harris; I cried for my grandma who raised me and I felt would be the only one to have really known my pain; as crazy as it seems, I cried for being grown up because if I was still a child I wouldn't have had to go thru something like this.  Again. 

Harris and I mourned and pressed forward right into another round of meds which failed because my levels were so low that they were unable to successfully stimulate my follicles, even after 20 days of injections.  Remember that I said earlier if you miscarry, your body takes up to a month sometimes to get your horomone levels back down to zero where you can again start to try and get pregnant.  If your body already thinks it's pregnant (because of the horomone), nothing you do will cause it to try and ovulate again the next month. 

When we ended that cycle, my doctor said to just keep having regular intercourse every other day for a while because I may just end up ovulating on my own . . . even though I never had before.  Whatever.  We did.  I didn't.  So, we're not pregnant.  Still.

That get's you current almost.  Presently, I have to go and do a screening for diabetes before I can begin another round of injections.  She wants to confirm, again, that I have not developed diabetes as this might be a possible explaination for what happened in April/May.  Guess how long I've put off having that test???  Remember my issues with needles?  Well, for that lovely test, some unlucky (and by the end, very aggravated) technician has to draw my blood 3 times in two hours.  By the way, not that this is a defense for my issues with needles but, I have veins that are so tiny it looks like they've been drawn with an ink pen - they have a tendency to roll, and because of the hyperventillating my blood actually stops flowing sometimes when they have found a vein to tap and they have to start over.  It's awful.  AWFUL. 

I know that I have to suck it up and take the test.  I have even made myself an appointment for next week with the doctor to evaluate the results of said test and make another plan.  Maybe that will force me to the LabCorp offices Monday morning.  I hate needles.

If you've been a trooper and made it all the way thru this very long introductory post, you now know me quite well.  I promise that nothing I write in the future will be this long.  My feeling was that in order to do down this road towards parenthood, I needed to give a summary of the paths I've taken to date. 

Did I mention that I REALLY hate needles?

1 comment:

  1. I know I'm commenting very much after the fact, but thank you for sharing your story. You tell it so eloquently and we definitely have similar stories. It's so rare to hear others talk about these "taboo" experiences, particularly in detail, and it is so refreshing to share know that I'm not alone. I wish we weren't part of this particular club though. My blog is angelheartsforever@blogspot.com if you ever want to take a look at my story. Take care.