Endometriosis – My Story Part 1

So I’m going to share something a little personal…because well it’s my blog and I can.  I think that my story is unique but at the same time all to common.  No one wants to talk about endo because it’s not cool and it’s awkward.

I’m going to take a wild guess that majority of the people that look at this either (a) know what endometriosis (also commonly referred to as endo) is and found this because they were looking for it or (b) have no clue at all what it is.  The story is a bit long and can easily be divided into two parts this will be my first two part post!

I’m not here to give a medical lesson on the condition, but I’ll let you know it is a condition that can cause painful periods, difficulty conceiving or keeping a pregnancy. If you want more information I would suggest going to Endometriosis Association to get more of an explanation.

So after years of issues, I decided in college to seek an answer for why I felt so much pain.  It wasn’t normal pain – it was debilitating pain for a few days a month – can’t get out of bed, makes me sick to my stomach, kind of pain.  I starting doing research and found a website that explained this condition.  I felt like I had an answer.  What you should know is that 90% of the time you have to have surgery to be diagnosed. So after my first surgery, the doctor told me I didn’t have it.  I literally cried when my mom told me in the recovery room at the hospital.  If it wasn’t endo then what was it?  Surely this pain wasn’t normal.  There had to be something wrong, right?  But basically this doctor wanted me to believe that the pain I was feeling was normal and that all women felt it.

I found a specialist who I saw a few months later.  He did a physical exam and said that some of the endometriosis lesions were so big that he could feel them.  A few weeks later I was in surgery again this time to remove the lesions.  The doctor was surprised by how much there was and how many different areas he found the lesions.

At this time my doctor suggested that I try Lupron – a drug that puts women into a chemically induced menopause. Being that I was in my senior year of college, and after reading all the side effects, I decided against the treatment.

The doctor appointments, surgeries and treatments are only part of the story though.  Having done a lot of research on endo, I knew what the diagnosis meant.  The good news was there was a reason for my pain.  The bad news, there isn’t a “cure” and the side effects when it comes to having children are grim. I walked out of the first exam with the specialist when he told me he was 99.9% positive I was going to have it, and as I stood and wrote my check to the nurse up front with my boyfriend standing by me, I looked at him with tears in my eyes and said “I’ll never be able to have kids.”

Of course that isn’t to say that thousands and probably millions of women with endo don’t go on to have kids, but there was a feeling in my gut that day that just left me with no hope.  The thought of tens of thousands of dollars on treatment surgeries, followed by invasive infertility treatments, which could lead to nothing more than no pregnancies or even worse miscarriages broke me down.  I cried most the 1.5 hours from medical center Houston to Huntsville.