Endometriosis Part I

These next two posts are incredibly personal stories, but I have decided to share them publicly anyway.  I think the road to diagnosis, particularly of autoimmune disorders, is far too long.  I think the more of us willing to share how we got here, the more of us that can reach answers sooner.  For me, now battling three autoimmune disorders, I know that those answers matter.  It is important to go into battle knowing who your enemy is. 

In 2007 we moved across the country for my husband's new career in International Development.  The move was crazy, as are most cross-country moves, but the new location was great.  We had a beautiful new apartment, my daughter started at a wonderful new school, and we had old & new friends around us.  We decided to start trying for a baby.

Things did not go as we planned.  Month after month went by without so much as a "just maybe" moment.  After a year of disappointments, we saw fertility specialists.  Tests were run & all came back normal.  We questioned the doctor, our primary concern now being beyond fertility, "Could there be something more serious wrong?"  The condescending answer from our doctor was, "Sometimes it is the man.  Sometimes it is the woman.  Sometimes we just don't know."  He told us that my age did matter.  That it was a factor in my declining fertility.  I was 29.  As you can imagine, I found this information utterly depressing, especially as many friends around me, all in the same age range, began having babies.

Later I learned that a huge number of white women who experience secondary infertility have Endometriosis and that it is in the top three causes of infertility for women in general.  Our doctor, despite having extensive information demonstrating my Endometriosis symptoms and family medical history pointing to it, did not suggest I be evaluated for it.  Instead he urged us on toward expensive, invasive fertility treatments.  We decided to continue on our own course hoping for a baby & leave the world of infertility treatment centers behind.

Those first two years of infertility were tough in a way that is sometimes hard to describe.  In the beginning we were so excited and hopeful about having a child together and growing our family.  My daughter was a source of happiness & laughter & we wanted to add to that joy.  We wanted to take the next natural step that all young couples take together.  As time wore on, it became a source of anxiety.

I read books, I took my temperature every morning, we prayed, and we tried to reach out to others.  That especially was difficult.  It is hard to be honest about where you are at in terms of fertility with people who are in a totally different place.  I was constantly afraid that other couples would think we were raining on their parade if we were open about our own struggle.  People asked, "Is she your only?"  And that was always followed by, "Do you plan to have more?"  Some people didn't understand our decision not to go through with fertility treatments and lots of people insinuated that I just needed to "relax."

Meanwhile, I suffered through excruciatingly painful periods every month.  When my cycle came, I would get flu-like symptoms that I had to suffer through, sometimes feeling sick to the point of being near fainting.  I had pelvic pain that would flare & radiate in one spot for days on end.  At many times the only relief was a heating pad, huge amounts of Advil & laying in the fetal position in my bed for hours.  I also had terrible cystic acne, that was not only painful, but embarrassing.  It felt like a cruel joke.  We traded being in the "perfect" spot in life for a baby, for absolutely no sign of a baby at all.  Heaps of hope for heaps of pain.

We decided it was time to seek out other sources of help for this journey.  That source of help held clues to a disease I would not know I had for another three years.

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5 thoughts on “Endometriosis Part I

  1. Lindsay

    I have huge sympathy I suffered for 10 years before getting diagnosed and was fed up being looked at blankly by the doctors when blood tests came up blank. For me I was in pain 3 weeks out of a month and it was common place to double up in excrutiating pain just walking down the street. My personality changed - as most peoples would - dealing with this level of pain is genuinely the thing of nightmares. It affected my relationship in many negative ways as it is difficult to maintain sympathy for someone for such a long period of time, plus sex was often painful. You question yourself all the time and it is hard to not start to believe that maybe it is not as serious as I thought it was - I mean if it was how come they couldn't find anything?! Today I am 98% pain free, I have achieved this through diet alone. I rarely take painkillers and my cycle is like clockwork and regularly sneaks up on me which was unheard of before 🙂

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