Monday, February 24, 2014

Discovering the Creighton Model

I emailed Liz, the nurse my friend recommended, on February 1, 2012.  She told me that there were information sessions held every two weeks and the next would be February 6.  Wonderful!  Sign me up!  Unfortunately, it was a night when my husband already had plans, so I asked my mom to go with me.  Not knowing what kind of information and material was going to be presented, I wanted to be sure I had a second set of eyes and ears learning with me. 

For those five days I felt such a mix of emotions.  Part of me was so anxious and excited to learn about this method of family planning.  Yet there was another part of me that was skeptical.  Was this just another quick fix?  And what if it couldn’t fix me at all?  Then what?  Wasn’t this my last resource in trying to cure my endometriosis?  And what about trying to conceive?  My mind was a mess of “what-ifs.”  All I could do was wait and see what was in store for me, before jumping to any harsh conclusions.

The evening arrived and we headed twenty minutes away to a church office building where the information session was to be held.  The atmosphere was intimate.  Along with me and my mother there was another couple and their baby.  That was all.  We were the only ones interested that evening in learning about how to take charge of our own fertility.  Together we sat while Liz presented the information on a Power Point.  She was extremely thorough, explaining the history and background of the Creighton Model, the remarkable work of Dr. Hilgers and other physicians at the Pope Paul VI Institute, how the Creighton Model System (CrMS) works, and its efficacy. 

I was impressed.  Who knew that our bodies were this amazing?!  If I had just known to look at my biomarkers I could notice a whole host of symptoms and read them, in order to understand what was happening within my body.  These biomarkers are shown in our cervical mucus.  By focusing on this cervical mucus and charting it every evening before bed, trends in our menstrual cycles become visible, allowing us to achieve or avoid pregnancy, or better understand issues we are having with other parts of our reproductive system. 

Aside from being impressed, I was completely embarrassed.  Was it possible that I knew this little about my own body?  Surely, I knew something, right?  Obviously, I knew that my body produced cervical mucus.  I had seen it before.  But did I know that its consistency changed?  I think I did.  And did I know that if I had been following it that I would know if my body produced enough progesterone?  Or estrogen?  Or if I was deficient in other areas?  Definitely not.  I knew I got a period.  I knew I hated it.  And I was also pretty convinced I had a parasitic triplet inside of me.  (Did I mention that before?  Oh, well since the pain had gotten so bad I was convinced that I had something living inside me.  I know that people have complained that perhaps they had a parasitic twin living inside of them.  Since I already have an actual twin, I determined that I had a parasitic triplet.  Her name is Carmen.)

Of course, I wouldn’t be honest if I didn’t admit that I thought the whole idea was gross.  You want me to examine my cervical mucus?  And touch it?!  I was usually trying to wipe it away and pretend that it wasn’t there.  Now I was being told that if I wanted to understand my body at all that I was going to have to get to know it.  Again, faced with no other options I resigned myself to the fact that I was going to examine my cervical mucus.  And touch it.  And get to know it.  Because if I wanted to feel better ever again and if I ever wanted to be able to conceive a child I was going to try anything.  And touching cervical mucus, in the grand scheme of things, didn’t seem so bad. 

I learned the very basics of charting with the Creighton Model on February 6, 2012 and I made my very first entry on February 7.  For the next two weeks, until I had my first follow-up appointment with Liz, I would make mental notes every time I went to the bathroom.  At the end of the night I would chart exactly what I saw.  I was eager to hear what she thought after my first two weeks and was hoping that I was going to get the hang of it all soon.  Yet I found that I was really struggling.  It turns out that it is really hard to chart your mucus cycles when you bleed consistently for two weeks

What did my bleeding mean?  Liz would help me to uncover that and more mysteries of my endometriosis-ridden body.  Stay tuned for my first follow-up.

Wednesday, February 19, 2014

Searching for an Answer

Now that I was resigned to the fact that it was up to me to find out how to cure my endometriosis, I began searching out experts on the subject.  It wasn’t that I didn’t like my current doctor.  On the contrary, I thought he was wonderful!  He was incredibly supportive of me and was doing all that he could to try to help me.  The issue was that he was an OB/GYN, not a Reproductive Endocrinologist, or someone who had specialized in endometriosis.  Therefore, his knowledge was a bit limited.  I was now on the hunt for a doctor who specifically treated patients with endometriosis.

Surely, they had to be out there.  Thank goodness for the Internet.  I searched for “Endometriosis Specialists” in my area and was immediately given a long list of names.  Not surprisingly, all of the names were associated with a major university hospital, known for their expertise in a wide area of conditions.  So I began my research in to each and every one of the doctors listed.  How long had they been in practice?  How many patients had they treated with endometriosis?  What were some of the reviews from other patients?  I wanted to do my due diligence to make sure that I was choosing the best doctor for me. 

Once I had found “THE doctor” I made my call.  It was going to take a month to get an appointment.  Not a problem.  I had waited this long, so what was another month.  The appointment couldn’t have come soon enough though.  I was so anxious and excited that I was going to finally get answers and relief from someone who really knew the ins and outs of this condition.  The day finally arrived and I made my way in to the city to head to the offices of the hospital.  I live about thirty miles from the city, so it took a good hour to get there.  I made sure to leave enough time to get there, park, and fill out any paperwork.  I paid for parking in their garage and headed up to hopefully begin my journey to a healthier life. 

The office was stark and uninviting.  There was nothing about it that made me feel relaxed.  Still, I breathed a sigh of relief when I gave my name and my appointment time.  The receptionist repeated my name questioningly and told me that she didn’t have me scheduled.  Are you kidding me?!  Please don’t tell me that I waited a month for nothing, that I drove an hour for nothing… She checked her system.  I was there!  Phew!!!  Only I was at the wrong office.  “Didn’t someone call you?” she asked me.  No, no one called me.  “Oh, well someone should have called you.  We moved you so you should be at the other office across town.”  I knew what that meant.  Across town would take me another thirty minutes to get there.  I would miss my appointment.  I just spent eight bucks on parking.  Figures.   

Naturally, my only response at that point was to cry.  When would I get another appointment?  I couldn’t keep living that way, not being able to stand up straight without feeling like my body was ripping apart and feeling so depressed.  Wasn’t there anything she could do?  Yes, there was.  She said I could have their next appointment in two hours.  Done.  The appointment was mine.  I got back in my car and headed over to my sister’s to kill time.  She was in college not far from the hospital, so I hung out with her for an hour, until it was time to leave.  And since I was so unfamiliar with the city and in such poor spirits, she came with me.  Such a saint!

I was so glad to have her there with me, not only for support, but also so she could sit in my car while I was parked illegally.  That’s right.  This new office didn’t have a parking lot.  It was a small office in a neighborhood with only parallel parking.  Even if I could parallel park, which I hadn’t done since my driving test, there was not a spot to be had.  So I found a pharmacy a block away and parked in their lot and told my sister to stay put for a little while.  Fearful of making me cry again, she did just as I had asked.

This office was a bit better than the other.  Big windows, a few plants, and some music made for a much more serene environment.  I was ten minutes early for the appointment, so I filled out my papers and waited to be called back.  Ten minutes went by.  Time for my appointment.  Still, my name wasn’t called.  Another ten minutes went by.  Then another fifteen.  It was odd since I was the only patient sitting in the waiting room.  Thirty minutes.  One hour.  An hour and a half.  Finally, an hour and forty five minutes after my new appointment time I was called back to the exam room.  Another fifteen minutes of waiting.  Just then, the sound of hope!  The door opened and in she walked.  “Hi, I’m the nurse practitioner.”  Hi, I’m Marielle.  Where is Dr. So and So?  “Oh, she’s not here today.  I’ll be taking your appointment.  What brings you in?”  I have endometriosis and have been suffering quite a bit.  I have done a bit of research and this seemed to be the place to come to get answers and relief.  I first want to treat my body, but my secondary concern is my fertility.  “I haven’t had any patients with endometriosis myself, but I know Dr. So and So has.  And don’t worry about your fertility.  When it comes time we can do IVF.”

I waited two hours, on top of the trouble already caused by the miscommunication, for a nurse practitioner that didn’t know squat about my issues.  Where was the doctor who was an endo expert??  The NP was nice enough, but not what I had expected.  Her recommendation to treat my endometriosis?  Birth control pills.  And being told I would need IVF in order to conceive one day was the last thing that I wanted to hear.  I asked her to draw some blood and check my hormone levels to see if it reflected something else going on.  She obliged and then left.  As I got dressed I cried.  I cried leaving the office.  I cried when I got in my car.  I cried to my sister as I drove her back to her apartment.  I cried the whole ride home.  I was never going to find relief.  I was stuck being miserable forever.

My husband told me to hold out hope.  Make another appointment after my blood work came back and then meet with the actual doctor.  So after two weeks of not hearing back from the office, as promised, I called to get my results.  I sat on hold for forty minutes.  No results.  Call at the end of the week.  Once again, I sat on hold, this time for an hour.  No results.  Call on Monday.  Same story, but I was finished.  I never did get those results.  I couldn’t sit around waiting forever.  These doctors did not care about me.  They did not care about who I was as a person, what I was going through, and they weren’t interested in my well-being.  Time to move on.

Through all of this I had been sharing my struggles with a dear friend and co-worker.  She and her husband worked for the diocese teaching Natural Family Planning.  She knew of a nurse who had worked with other women with endometriosis and thought she could help me.  I got the name and email address of this nurse and emailed her immediately.  I will admit that I was skeptical.  What did Natural Family Planning have to do with what I was going through?  How would it help me?  I had nothing to lose at this point, though, so I might as well check it out.  That evening I emailed this nurse and for once, felt hope.

To be continued…. 

Free at Last?

After my laparoscopic surgery on December 21, 2009 I truly expected to be free from my endometriosis.  Therefore, I was incredibly confused as to why I was still told to take my birth control pills.  Now, it wasn’t as though I was trying to conceive right away.  On the contrary.  I was still a newlywed and very happy to start living our lives together as a married couple.  I just didn’t want to be putting those fake hormones in to my body, knowing how they had been making me feel. 

At a follow-up appointment I was told I had a few options.  I could continue taking the regular daily birth control pill, get the Depo Provera shot, or be put on something called Lupron.  The daily birth control pill was what I was already doing, so I didn’t need the doctor to explain that option.  However, I had no idea what Depo Provera or Lupron were or how they would affect my body.  Would these be better options for me?  Would they keep the endometriosis at bay?  I was willing to learn.

Depo Provera was a shot I would get every three months.  It would mean that I would only get a period every three months, preventing any residual endo from growing monthly.  Of course, there were side effects to the Depo shot.  Most commonly women experienced bone loss.  Well that just sounds bad.  And then I was told it could be severe bone loss.  No, thank you.  That one is not for me.  How about Lupron?  Again, this was another injection.  Yet if I thought Depo sounded harsh, then it wasn’t looking promising for Lupron.  Apparently, Lupron can put you in to a state of menopause.  More bone loss, along with hot flashes, joint aches, night sweats, decreased sex drive, stomach pain, and headaches. 

These all sounded truly awful!  So I opted to just stick with my birth control pills.  If I needed to be taking something just in case the endometriosis came back, I would go with the one I had some familiarity with and one that wasn’t going to be so rough on my body.  I guess it is a good thing that I kept taking these pills, as I don’t know how quickly the endometriosis would have come back had I not.  Within two months of the surgery it was back.  The pain, the bleeding, the stretching, the inability to stand up straight, it had all returned.  Yet now it seemed worse somehow.  Perhaps it was the fact that I had expected it to be gone, and thus was ill-equipped to deal with the challenges posed by endometriosis.  Whatever it was, I was suffering much more than I ever had. 

Despite the suffering, I kept on.  I did not know what else I could do.  I had the surgery to remove the endo, I was taking my pills, I was living on ibuprofen and using heating pads….I had exhausted every option I thought I had.  If all of these things didn’t help, then surely nothing would.  My doctor was not as confident.  He encouraged me to try different pills and see if perhaps they offered a bit of relief.  I tried the pills that had twenty-four active days, rather than twenty-one.  The thought there was that the endometriosis would only have four days out of a twenty-eight days cycle to grow, not the normal seven days.  So for a few months I tried that pill.  Still, I ached.  It wasn’t helping.  And now I was finding myself falling even deeper in to despair.  Was this my life?  Feeling miserable?  Being in pain?  Depression was setting in quite fast.  Finally, I gave in to another option.

The new pill I was going to try was Seasonique.  With this new pill I would only get a period four times a year.  If taking the pill with twenty-four active days only allowed for four active days of endometrial growth per month, this meant that I would only have seven days of endometrial growth every three months!  Of course, I was incredibly skeptical, but I was desperate.  I went on this new pill incredibly wary of what I would feel.  My pain sadly did not change.  It was still constant.  Only now it was sprinkled with abnormal bleeding.  Again.  I dealt with this in high school, so I should have been used to it.  But I wasn’t.  It is hard to get used to bleeding for three weeks straight.  It is hard to get used to not getting a period at all.  It is hard to get used to spotting for an entire month.  Those were my experiences on this pill.  I gave it nine long months before I could take no more.  The unknown of when my bleeding would occur and the consistent pain I still felt made the decision very easy.  It was time to try Depo.

The decision to start Depo Provera was not one that I took lightly.  I did my research, discussed it with my doctor, and agonized over it with my husband.  I knew there were serious side effects.  I was aware that it could create long lasting harm.  However, these side effects seemed like the lesser of two evils.  My endometriosis was eating my up inside.  Literally!  So I made the plan that I would go on Depo, not forever, just until I seemed to regain some of my normal health and well-being.  Hopefully, that would only be for a short time and the bone loss would not have really had much time to take effect.

My mother is a nurse, so she was the one to give me my first shot.  I honestly don’t even remember getting the shot.  I just remember thinking that this was going to be my ticket to feeling well.  For the first couple of weeks, I felt nothing different.  It didn’t make me bleed irregularly, I didn’t experience any new or worsening pain, and in fact, I felt incredibly free not taking a daily birth control pill.  This was the first time in seven years where I was not checking my watch to see if it was time to take my pill.  That alone seemed to make my mood improve!  The first month on the Depo shot went by and I felt as I always had: in pain and fairly miserable because of it.

Then the second month rolled around and everything changed.  My pain had become intolerable.  No amount of ibuprofen could seem to help.  I tried cutting caffeine out of my diet in the hopes that that might offer a small benefit.  It didn’t.  I tried cutting out sweets (which is a staple in my diet) and that didn’t do anything except make me miss sweets!  The physical pain was brutal, but it was nothing compared to how I felt mentally.  I was losing all control.  I couldn’t control my temper at home.  I cried often, from the pain and from feeling like I had spiraled so far from who I used to be.  I was different.  My life was different.  And I couldn’t imagine what was in this shot that was doing this to me. 

Obviously, I called my doctor.  Not at the office, but on his cell phone.  I needed answers immediately.  He said that everything I was feeling was normal and that it often took until the second shot to regulate your hormones so you felt relief.  Maybe I was just being a wuss.  Maybe I was fine.  Maybe all people dealt with this pain and these feelings of utter craziness.  Perhaps I was just ill-equipped to handle it all.  So when the time came for the second shot I got it.  And the day after I got it I regretted it.  How could I have made such a huge mistake?  Why was I depending on others to make these big decisions about MY health?  Why have I not looked in to other alternatives?

Now I had realized that if I wanted to feel better it was up to me.  I needed to be the one to figure out what was happening with me.  I no longer just wanted to treat the symptoms of my endometriosis.  I wanted to treat the endometriosis itself, to get rid of it, and to enjoy life as a healthy woman.  I also wanted to ensure that I was doing all I could to protect my fertility, as I was keenly aware that endo is the leading cause of infertility.  I was ready to take back my life.

The next stage of my journey is to be continued…

Thursday, February 13, 2014

Maybe You Have Endometriosis

The song and dance with birth control pills went on for years.  Seven years if we want to be a bit more specific.  Yes, I had regular periods, but I still had unbearable pain and bleeding.  Where one pill failed to eradicate the pain, another was brought in its place to try to solve the problem.  Only my doctors and I weren’t attempting to solve any problems.  We were simply trying to cover up my symptoms.  Pills for a monthly cycle, pills for a quarterly cycle, and even birth control shots could do nothing for me.

What I discovered through my mess of medication was that I was losing myself.  In high school I considered myself a truly happy and positive person.  No matter the situation I really tried to see the good.  Something as silly as the sun being in my eyes was a terrific reminder that I had the ability to see.  Sore muscles after a hard softball practice reminded me that I had passions and was able to work hard.  Even the difficulty with my parents splitting up allowed me to discover how much I enjoyed writing.  However, this bright outlook on life faded.  I began to feel sad and often.  Simple tasks became a struggle, as my body hurt physically and I was hurting mentally.  Anger took over being rational and I felt like I was losing control.

As a self-proclaimed “mama’s girl” I went straight to my mom for advice.  I know it bothered her immensely to see me in pain and not know what to do to help.  By her suggestion, I went to see a new gynecologist.  He was the director of my younger sister’s choral group and had performed in a local show with her.  Being a friend of the family, I was happy to see someone that I knew was not only respected in his profession, but also someone in whom I could put my trust.  It didn’t take long after I shared my symptoms and experiences for him to suggest a root cause: “Maybe you have endometriosis.”

Say that word again, please.  What exactly is that?  I learned that endometriosis was a condition that caused the lining of the uterus (the endometrium) to grow elsewhere in the body.  It could be found on the ovaries, fallopian tubes, urinary tract, bowels, or even intestines.  Often this tissue could cause inflammation, scar tissue, and extreme pain.  When left to grow the tissue can cause organs to fuse together or adhesions to grow.  Sadly, it is one of the most common of health problems for women.  So what did that mean for me exactly?

Not much.  At least not right away.  It was August 2009 and I was getting married in October.  The only reliable way to diagnose endometriosis was through surgery, which I was unwilling to have until after my wedding.  Endometriosis is not visible on ultrasound or other external tests.  Laparoscopic surgeries were both used in the diagnosis and removal of endo.  Doctors would check for the endometrial tissue and laser off what could be seen.  What was a few more months of pain after I had been suffering for so long?  Wait I did, until December 21, 2009. 


It was a fairly benign procedure.  There were no special preparations I had to make the night before, other than to not eat or drink after midnight.  My dad was all scheduled to pick me up bright and early the next morning, about 5:00 am, to take me over to the hospital.  Of course, I would have loved for my husband to take me, but being so close to the end of the year he was out of sick days.  As a newly married couple with not much money and lots of new bills, we decided it was best that he would just go to work that day.  So I woke up early, kissed him goodbye, and told him that I would see him once he got home.

Being the caring and concerned person she always is, my younger sister had joined my dad for the ride.  We arrived at the hospital and waited for the fun to begin.  I checked in to the hospital at about 5:45 am and was taken back in to surgery around 7:30 am.  This laparoscopic surgery required that I be put under general anesthesia, so I remember none of the surgery, just waking up in post-op.  Other than feeling tired and sore, I felt relatively okay.  The anesthesia had made me nauseous, so I sat around for a little while eating crackers and sipping on ginger ale while waiting to use the bathroom.  Did you know that you are not allowed to leave the hospital until after you have gone to the bathroom?  Luckily, I had no problem going at all.  The problem was seeing the massive amount of blood in the toilet after I had finished.  Between not eating for hours, feeling nauseated and weak from the anesthesia, and then seeing the blood, I almost fainted.  Good thing my nurse had insisted she stay with me in the bathroom! 

After that embarrassing little episode I was allowed to head home.  I was able to check out my new scars and take a beautiful nap.  Two tiny incisions now graced my seldom-seen stomach.  One incision was right above my pubic bone, less than an inch in length.  The other incision was directly across my belly button.  Now I have always had a strange belly button.  It wasn’t quite an in-y and it wasn’t quite an out-y.  I knew that once this new incision healed I would be left with something entirely different.  It wasn’t something that was going to cause me to lose sleep.  I took my medication for the pain and slept for a few glorious hours.

The next two weeks were my Christmas break.  I had planned the surgery for the perfect time.  Not that it had slowed me down much at all.  My surgery was four days before Christmas, so there was plenty to be done at home.  I baked cookies, I wrapped a few last minute gifts, and I cleaned the house from top to bottom.  Even I was surprised by my own ability to move around so easily.  Although my abdomen was swollen from the air that had filled it during the surgery, I really only felt as though I had done a hard abdominal workout.  Sitting down bothered me for a few days, but nothing too severe.  And of course there was bleeding.  I bled for two weeks straight, one of which should have been my period anyway.  Again, it wasn’t severe, more like the first few days of my normal period – slightly heavy.  I couldn’t complain.  A sore stomach and bleeding for two weeks and I would be free from endometriosis?  I will take it!

Only I wasn’t free from endometriosis.  Not even close.

Stay tuned for my plan following my surgery and how I came to learn about the Creighton Model and NaProTechnology.

Friday, February 7, 2014

A Time to Get Honest...

It has been almost a month since my idea to start a little blog came to fruition and I shared my first post.  In that time I have really been trying to think about exactly what I wanted to share, as my head is typically a jumbled mess of thoughts.  Should this be a blog of my experiences as a mother? A wife? A teacher?  Did I want to share my ideas for my sister’s bridal shower?  Advice for new moms on my favorite baby products?  These are all great ideas and things I hope to write about in the future.  However, they were not great starting points.

Luckily, I have been incredibly inspired by a classmate and friend from high school.  She bravely began opening up about her struggles with fertility (you can check out her awesome blog here) and it made me reflect on my own journey to motherhood.  For many, the process of conceiving is not easy.  Although I did not have the same experiences as she did, I have struggled in my own ways.  The struggles that I faced are not often discussed, at least not so much in the public forum.  So here I begin, sharing information that I have passed along to about a dozen other women who also suffer from endometriosis

Like so many women, I had a pretty difficult time with my periods.  Unlike many women, I was lucky enough to get my period at a slightly later age.  My period didn’t begin until a few weeks before my fifteenth birthday.  I remember the day so vividly and just how disappointed I was to be seeing red.  Not having my period made me the envy of all of my friends!  Now, I was just one of them, getting ready to suffer through the pains of “becoming a woman.”  This was just the start of the mess that is my reproductive system.

Unpredictable was how I would best describe my cycles.  Six weeks, two weeks, eight weeks, five weeks… I had no idea when to expect this beast.  And “beast” is an understatement.  I remember telling my mom that I was pretty sure my body was falling apart.  The pain was awful and the amount of blood was truly terrifying!  Some days I had no idea how I was able to function, as it seemed like I should have passed out from the blood loss.  However, I just assumed that this was normal and that everyone went through the same things.  I was simply waiting for my cycle to get a bit more regular.

Except that never happened.  By the time I was seventeen and a senior in high school it had gotten so much worse.  My cycles was so erratic and so painful that I knew something had to be wrong.  Since I was about the age of getting to see the gynecologist for the first time, I made my appointment in the hopes that she would be able to offer some advice as to how to deal with the horrific pain and absurd bleeding.  She said that since I had had my period for a full two years at that point that I should have been regular.  Therefore, in order to regulate my cycles and help with my “discomfort” she recommended that I start taking birth control pills.  The hormones in the birth control pills should be the solution to my problems.

Sadly, the relief never came.  Although the pill did allow for more regular periods, the pain and heavy bleeding were always present.  So I thought that was normal.  I had the regular periods and lost the fear that I would get my period without expecting it (which had happened more times than I could count).   I learned to live with the pain.  Year after year, I would visit my gynecologist to be told the same thing: “You are fine, just continue taking the pill.  We can try a new pill, if you would like.”  This went on for nine years. 

Stay tuned for my diagnosis of endometriosis and my continued struggled to find relief.