“Endometriosis and My Story…”

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When I was asked to write this article I immediately said yes because of who asked me and because I feel it’s an important topic that doesn’t get enough attention.  Often, when people think of “woman problems” they think of breast cancer, ovarian cancer and things like that.  [tweetthis]No one really discusses #Endometriosis; what it is, how it affects girls/women every day, and how it robs us. [/tweetthis] After I said yes, I thought “what did I just agree to?” and tried to think of ways to get out of it.  I settled within myself that if I’m going to be an advocate for Endometriosis awareness and research it means sharing my story and providing details.  So here we go!

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My name is Anika and I have Endometriosis!  I’m 37 years old and the oldest of six children.  I am married to an amazing man and have 3 beautiful stepchildren.  Let’s start at the beginning shall we?  From the moment I had my first menstrual cycle I experienced pain, sickness, and fatigue.  There was nothing and I mean nothing about that transition from a girl to a woman that was a good thing for me.  You know that crap they tell you.  For 11 years, I dealt with a menstrual cycle that lasted 7 days and was like a running faucet, gave me debilitating pain throughout my body; migraines, sickness, missed days from school, church, work, fainting, etc. I couldn’t function.  One would think I only had this issue around the time when I was supposed to have my cycle.  I had no clue that your period wasn’t supposed to be like this but I knew that none of my friends had this kind of pain and sickness with theirs.  Well beginning around 1999 it started occurring outside of my period and I knew I needed to get checked out again.  All the doctors I met with felt it was just cramps, nothing to worry about.  It was just the “normal symptoms of your period.  Every female goes through it.”

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Between 2000 and 2001, my symptoms became worse.  I had become used to being sick all the time.  However, I wasn’t used to having a menstrual cycle that wouldn’t stop.  Weeks would go by and I would have my cycle.  I went through several OB/GYNs and they all continued the same rhetoric.  Ultrasounds with no results.  It was even painful to get a pap smear.  Something that takes a few seconds should not be that painful.  My stress was growing!  In the summer of 2000, I finally found someone who was willing to listen and help.  After reviewing my records, speaking with me and checking me, he decided to send me for a pelvic sonogram.  The end result – Endometriosis.  I had no clue what Endometriosis was and immediately took to the internet.  Endometriosis is a chronic disease that occurs when the tissue (endometrium) from the lining of the uterus grow in other areas of the body.  The tissue creates growths or lesions, which generally respond to the menstrual cycle the same way the tissue in the uterine lining does.  The only problem is the endometrial growths/lesions outside of the uterus have no way to exit the body.  This causes internal bleeding, infammation, pain, infertility, scar tissue, bowel problems, painful sex, organs stuck together, and the list goes on.  With this knowledge, I began a Naproxen (Aleve) regimen.  Then I began a Tylenol with Codeine regimen.  Nothing was working.

The beginning of 2001, my pain worsened and we ran more ultrasounds and pelvic sonograms.  Besides having a great number of small fibroids, I had multiple, very large cysts growing on both of my ovaries.  After crumbling into a ball of tears trying to understand what was happening to my body, I asked what we needed to do.  Next up I began taking different brands of birth control pills to try to shrink the cysts.  That didn’t work and left me still in pain.  Finally, the doctor decided I needed to begin taking Lupron shots on a monthly basis.  [tweetthis]#Lupron essentially stops your body from creating the lining in the uterus and you don’t have your period. [/tweetthis] You go through menopause.  Yes, I said it Menopause! – and all the hot flashes and cold sweats.  After 2 years, Lupron worked by stopping the pain but did absolutely nothing to the cysts.

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My OB/GYN told me I needed to have surgery immediately because the cysts weren’t getting smaller and my ovaries were in jeopardy.  So, February 2003, I found myself sitting in a hospital gown waiting to have a Laparoscopy to remove the cysts.  They successfully removed the cysts.  I’m now in the recovery room still under the influence of the anesthesia.  I see my mom and my surgeon.  The surgeon says “Ms. Robinson your surgery is finished.  You will feel more pain than expected because the laparoscopy wasn’t successful.  We had to do a full bikini cut to stop some excess bleeding and give you a transfusion.  I have NEVER seen this much scar tissue in one body.  We removed 2 cysts from your left ovary and 2 cysts from your right ovary.  The right ovary was being depressed by the cysts.  We removed as much scar tissue and lesions as we could but we couldn’t get everything.” And this is where is gets depressing “My suggestion is that you consider adoption because I am 99.99% sure you will never be able to have children – not even through IVF (In Vitro Fertilization).  I’m so very sorry.  I’ll come back and check on you later.”  Then I was out again.  When I finally came to I had to ask my mother if what I remembered hearing is what the surgeon actually said or was I hallucinating.  She sadly said that I remembered it correctly.  He said it so nonchalantly I didn’t know what to do.  When I went for my checkup he told me that the endometriosis was everywhere.  It was all over my uterus, my ovaries, my fallopian tubes, my bladder and my intestines as if a bomb exploded inside of me.  So I wasn’t crazy or being a Drama Queen for the last 14 years, something was terribly wrong with me and I now had 6 weeks to be miserable about it.

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At this point in my life, I was in a truly loving relationship.  Eventually, I would want to have children and I’m told I would never have children?  Back to work and back to Lupron shots for another year.  Then birth control for another 4 years.  I made the decision to stop when my cycle starting lasting for weeks again.  I remained off the birth control for 3 years and started them again the summer of 2010 because I couldn’t take the pain any longer.  So many ultrasounds to make sure I didn’t have more cysts.  The pain didn’t go away but it got a bit (just a bit) more manageable.  By this time, I had been married to my husband for about a year (together for 9 years).  We began talking more and more about children and possibly trying IVF.  I immediately began taking prenatal vitamins as my new OB/GYN said it was the best vitamins to be on even before trying.   It took me 2 years to get up enough courage to make the decision to go through IVF.  Around 2011, I was diagnosed with borderline hypertension, which I take daily medication to treat.  I wonder why – could it be stress?

In October 2012, my husband and I walked into an infertility office.  It was an initial consultation to remember.  My fertility specialist was great, very straightforward which is exactly what I needed.  She looked at me and said “you’re probably one of those people that should have had babies when you were 16.  That was probably the best time for you.”  She was worried about my egg quality because endometriosis deteriorates your eggs, but she was hopeful.  The bad news was 2013 would be my last year to try IVF.  It would be too much of a health risk for me to try after 12/31/2013.  Go figure!  During the ultrasound she found that the fibroids had significantly grown and one in particular went out through my uterine wall, came back and, and went back out through the wall (called Trans mural fibroid).  I needed to have surgery to remove them before I could start anything.  She also saw a problem with my fallopian tube.  After having my first HSG test, I found out that one of my fallopian tubes was completely closed because of the endometriosis.  It also needed to be removed.  [tweetthis]A #hysterosalpingogram (HSG) is an X-ray test that looks at the inside of the uterus and fallopian tubes and the area around them, by using a dye.[/tweetthis]  Pictures are taken as the dye passes through the uterus and fallopian tubes and alerts the physician to the problem areas.  The test is for women who are having a hard time becoming pregnant (infertile).  It can also be quite painful – mine was VERY painful.

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With this news, January 2013, I go in for my Abdominal Myomectomy where 4-6 (I don’t recall) fibroids were removed, a fallopian tube, lesions, scar tissue, and they separated my uterus and remaining fallopian from my colon (yes they were stuck together).  My surgeon this time around was absolutely awesome and very informative.  My ovaries, uterus and remaining fallopian tube weren’t in the best of shape but I got the green light to move forward with the IVF process after I healed.  Oh did I happen to mention that the surgeon notes from my surgery in 2003 stated that he saw the damaged fallopian tube and the trans mural fibroid?  He never said a word and neither did my OB/GYN at that time.  I couldn’t believe that they saw those things and did nothing and said nothing.

September 2013, I began the IVF process.  I was on a Lupron cycle which also included Follistim and Menopur.  Hopeful remaining positive, I gave myself shots every day and visited the doctor’s office really early in the morning pretty much every other day for blood tests and ultrasounds.  My estrogen levels were increasing wonderfully and all signs were positive.  Ovidrel was my trigger shot, which I took a day and half before egg retrieval.  I had 10 eggs retrieved and 0 fertilized through the normal process.  They called to inform me and get my permission to do a last resort or “rescue fertilization” called ICSI.  This rescue process is where they break the shell of each egg and insert the sperm directly into the egg.  On September 30^th they called me back while I was at work.  It was my fertility specialist.  “We are so sorry.  The eggs fertilized but they all fertilized abnormally.  We can’t do the implantation.  Unfortunately, eggs don’t tell you why they don’t fertilize normally so we can’t tell you exactly what happened.  Your eggs were mature but they just didn’t fertilize properly.”  She and I talked for a few minutes and I cried.  I called my husband immediately and could barely speak.  I left work early and headed home.  All I could do was walk in the house and collapse in my bed.  Why me?  Why me?  Why me?  I mean don’t get me wrong I don’t wish this on anyone but……….why me?!?!?!?!?

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My husband came home and made me get up and leave the house.  I stayed home from work a couple of days and cried myself to sleep throughout the day.  All I could think about was my 1^st surgeon telling me I would never get pregnant even through IVF.  Could he be right?  Will I never have children of my own?  I feel like I’m less than a woman…as if that possibility of not having children defined my person.  Logically I know it doesn’t but you can’t help but feel that way.

I write this in tears because my failed IVF occurred just 2 weeks ago, but it’s cathartic for me to share it.  I know I have a long road ahead of me and I will continue to have moments where I cry and feel the hurt of this, but I will keep going and continue living.  My battle with endo hasn’t ended as I am in pain right now.  I have my wonderful husband of almost 4 years (12 years together) who is with me every step of the way.  My story is not exactly the same as everyone else’s, but I’m sure there are some similarities.  [tweetthis]#Endometriosis has mentally, emotionally, physically drained me since 1989 and 24 years later I won’t give in, and I won’t lose my faith.[/tweetthis]  It’s a cruel and horrible disease but there are treatments that may make it tolerable.  To this day so many young girls and women go without a diagnosis or misdiagnosed. If you have recently been diagnosed with endometriosis, or your endo is now causing you to have infertility problems, please know you aren’t the only one going through this.  You are not alone!!  Your EndoSisters are all around you – it’s an international family.  I spent years thinking I was just the oddball.  Hopefully more women will speak out and share their stories and advice, including you!  I’ve added some helpful site below.

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The jury is still out on my fertility but I’m living and remaining hopeful.  At the end of it whatever God’s will is it is.  If nothing else maybe my story will cause someone to discuss their symptoms with their doctor and get checked out.  Awareness & Hope!!!!

~Your EndoSister

Seek the advice of your Ob/GYN if you are having symptoms of endometriosis. Only a professional can officially diagnose and treat this illness.

Resources: 

Endometriosis Assocation – http://www.endometriosisassn.org/index.html

Endometriosis Reseach Center – http://www.endocenter.org/

Endometriosis Foundation of America – http://www.endofound.org