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…. 

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