Wednesday, May 11, 2011

Endometriosis the Real Story

So as most of you know I was diagnosed with Endometriosis in 2009 after laparoscopic surgery.  Endometriosis is a complicated and severely misunderstood disease that is estimated to affect 70 million women.  Endometriosis is a ongoing, progressive disease, it happens when the Endometrial lining of the womb, which are made of cells, slough off with every period and are rid from the body.  With Endometriosis this is not the case, these cells/particles migrate outside of the uterine cavity and every month during menstruation they swell, and bleed but they have nowhere to go, building inside the body.  This is very painful; they compare the pain of endo to right there with the pain of labor.  I can remember talking to the anesthesiologist right before he gives me the anesthesia and apparently I had everyone rolling with laughter after I was given the lovely drugs.  I felt relieved as they wheeled me in for surgery, closing my eyes to fall asleep and let the anesthesia take over, I was tired anyways since it was 7am.  When I opened my eyes I saw Monty, my husband, sitting in the little open recovery room with me, he walked over and I asked him, "Do I have it, did they find it?"  He said yes, my doctor explained that he had removed implants of tissue from my left ovary, my bladder (which is very uncommon), and the front and back of my uterus.  Immediately I began to cry, it was a cry of relief and devastation, I knew what this meant, it meant that this horrid pain of this disease is not curable; it meant that I might have a harder time having children, and it meant that I was right all along, I had Endometriosis.

I was so relieved and frustrated, here I had told everyone I knew including doctors and specialists that I am in a lot of pain with my period, and I miss a lot of work and have lost a few jobs because of how sick I was.  Why had no one taken me seriously?  Doctors have prescribed me everything from muscle relaxers to Vicodin and none of these even touched the pain.  That should explain how serious my situation was, if narcotics didn't even help me.  What was really bad is that after I had an Ovarian cyst in 2006, the specialist I was seeing nonchalantly stated that the only way to find out if anything was seriously wrong with me was surgery. At this point I was seriously skeptical of such an invasive procedure and scared to have surgery so I decided that this was the last option I would consider.  I thought to myself I am strong and I can get through this pain. I realized that after awhile you adapt, we as humans adapt to our situations and we make the best of them, so that is what I did, I adapted and I made the best of it. 

I believe that my life path would take me where I need to go, and I am a strong believer in fate.  So when I met Jennifer after moving to Texas, I felt like this was the biggest blessing ever and fate stepped in.  We were all at game night at Stephen and Jennifer's and I was on my period, I did not feel well my legs ached so bad, my back felt like a 5 ton weight was sitting on the lower part, and I had severe cramping.  Jennifer could see I wasn't feeling well but I was making the best of it, not complaining just wincing lol.  She asked me what was wrong and I told her, and we started sharing stories about pain and she explained that recently she had had her 2nd or 3rd surgery for Endometriosis.  I was so relieved to know finally, there was someone out there who knew what I was feeling!! I was tired of the pity looks, and the way all the women I talked to would complain about their bad periods.  I know they didn't mean to but without really listening to me they were belittling my condition because of the old stigma that, "all women have pain during their periods," is just accepted, and most women do have pain with their period.  However this stigma my friend is only partly true and that is why Endometriosis is misdiagnosed, or missed completely.  In cases of Endo it's not just your run of the mill period pain, it is excruciating, debilitating, and affects your whole life.  Jennifer and I came to the funniest conclusion that Advil gel caps was the only thing that even came close to helping relieve some of the pain, not Tylenol or Ibuprofen, it had to be Advil, and it had to be the gel caps.  So here I was armed with a possible diagnosis, so I scheduled an appointment with a new Gynecologist, who was another specialist.  This time I made sure he actually had performed surgeries on Endometriosis before, and he had, and I was relieved and confident to know this.  We met and he stated, like the specialist before, that the only option was surgery but he was still leery from my symptoms on whether I actually had Endometriosis. So I flat out told him we are doing the surgery and forced the issue, I was not giving up I was going to find out how to fix me. 

Thinking back now I am still so frightened, my friend Jennifer was diagnosed with severe Endometriosis, while I have moderate, she had been trying for 2 1/2 years to have a child unsuccessfully.  I also watch Mystery Diagnosis on the OWN network dvr'ing every show they had on there so far.  One of the cases was a woman in her late 20's who presented with severe nausea, and heavy menstrual periods, and pain with intercourse.  The woman had this nagging feeling that because no one could figure out her condition, she could not have children, so she resigned herself to her problems and began the adoption process.  Eventually after 7 years she found a gynecologist to take her seriously; they opened her up Laproscopically and found her pelvis was frozen!!! Turns out she had Endometriosis so long and so severe it had filled up her whole abdominal cavity!!  They immediately gave her a full hysterectomy.  I began sobbing when I saw her diagnosis, knowing just from her symptoms she had Endo like me.  Just like the woman on TV I have always had this nagging intuitive fear for a very long time that I will not be able to have kids, this devastated me because her fear is my fear, and hers came true. 

I would like to dedicate this blog to Jennifer, who talked to me about what was going on, who understood, and showed me what was happening to my life was not normal. If it had not been for her I would continually be suffering with as much pain as I had before, my life would be in jeopardy with the Endometriosis on my bladder which could have damaged it so badly if it progressed more, that I would have had to have my bladder resected or even worse.  Jennifer you saved my life, and you changed it more than you will ever know and I am so, so, grateful to you.
I also want to dedicate this to Monty my husband who took care of me when I was in pain, rubbing my back and my legs, holding me when I cried, sticking by me through all of the experimental doctors, foods, drugs, pain killers, etc.. and for being so patient you are the light of my life and no one has ever loved me like you.


  1. I am amazed by your strength Ali. It is such a burden smiling througj pain and you have carried that burden with grace. I know this will inspire other women in similar situations to take charge of their medical conditions and I'm proud of you. Love you Alicia.

  2. Aww thanks Julie that means so much to me :)love you too !!

  3. I love you sweetie. While I am lucky to not have to endure what you do, I know the very real fear of not being able to have kids. You are so brave and so wonderful and always give me hope. I love you so very much and I can't wait for you to come home in June.