Wednesday, February 19, 2014

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…

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