NICIAW - Endometriosis

My name is Jenn.

The invisible, chronic illness I live with is Endometriosis, stage IV.  Endometriosis, for me, is a disease in which tissue similar to the tissue that normally lines a uterus, grows elsewhere.  In my case, that means my ovaries, my fallopian tubes, my bladder (inside and outside), my large intestine, my small intestine, all the spaces between pelvic structures, as well as my kidneys, ureters, my liver, spleen, diaphragm, and right lung.  Each time my body cycles, those abnormal growths, which cause pain and problems by simply being there, start to bleed (just like having a period).  Only they bleed heavily and intensely, and it drains me of all energy and makes me very ill.  Not to mention the pain.  The bleeding causes inflammatory responses which cause the formation of adhesions and scar tissue, which then creates more places for the endometriosis to grow, and causes pain and problems of its own.  I also get cysts within my ovaries and what's left of my tubes, that get very very large and then rupture, causing loss of blood and bodily fluids, abdominal swelling, and sheer agony.  The adhesions that formed prior to my last surgery effectively turned my abdominal cavity into a solid mass.  There were new arteries that had grown and the adhesions weren't the typical filmy bits of scar tissue, but were thick, meaty tubes of tissue.  My last surgery could not be completed in one procedure, and the second half had to be completed two months later.

I was officially diagnosed following a laporoscopy on March 23, 2007. 
But I started having symptoms when I was 13 and had my first ruptured ovarian cyst.  The ultrasound revealed that the cyst was denser than typical "luteal or hemorrhagic" cysts, and the word "endometriosis came up in conversation.  It was dismissed as I was far too young.  At the age of 18, I had my appendix removed as well as a large ovarian cyst that I was told was called a "chocolate cyst."  At the age of 21, I had to have a biopsy done on my bladder due to the endometriosis that was growing there.  And yet, no diagnosis was offered.

The biggest adjustment I’ve had to make is realizing I face life-long pain and knowing that conceiving without medical assistance is no longer possible, and that at the age of 27, I have reached the end of my ability to bear children.

Most people assume that I still have time to have children, but the endometriosis has destroyed so much of my body that I am out of time.  If we get an opportunity this year to try, it might work.  Otherwise... we are done.  I am young, but that doesn't mean I have time.  They also assume that Endometrios just means I have painful periods and probably sore ovaries and tubes.

The hardest part about mornings are not knowing if I will be able to stand up when I get out of bed.  Will the pain be so severe that I cannot stand up?  Will I throw up?  If I do, will it be vomit or blood?  What about my lung?  Am I going to cough up blood?  And the adhesions - will one tear free today, causing intense pain and bleeding, possibly even landing me in the hospital?

A gadget I couldn’t live without is my electric blanket.  Sometimes, when I'm bleeding internally, I get anemic.  And so very, very cold.  The electric blanket helps me stay warm, and keeps me from shivering (which hurts even more).

The hardest part about nights are when I am so tired but I am in so much pain that I can hardly make myself breathe, never mind fall asleep.

Each day I take hydrocodone, naproxen, and elmiron pills, and at night I need ambien and ativan to help me sleep.  I also take prenatal vitamins, fishoil, and evening of primrose oil. (No comments, please)

Regarding alternative treatments I have tried so many.  Supplements, dietary changes, visualization for pain management, faith... all of those things have come into play, and have helped... a little.  Also, I have done an experimental run of chemotherapy, which was effective in causing me to loose about 1/2 of my hair and while the disease did not progress, there was no remission.  And as soon as the regiment was over, it started growing even faster than before.

If I had to choose between an invisible illness or visible I would choose invisible.  I don't like sympathy, I don't like being the center of attention, I don't like "Aw... you look awful."  But at the same time... there are days when I feel like I am being shredded from the inside out and someone will say "You look really great" and I will think to myself "NOT.POSSIBLE.GO.AWAY."

Regarding working and career, it has destroyed my career.  Do you know people don't seem to hire you when you openly admit that there are days you can't get out of bed, unpredictably.  And you have surgery 2-3 times each year, and each time could mean up to 1 month away from work, plus if you get a period you'll be missing at least a week for that, and if you ovulate, you might get a cyst requiring up to two weeks in bed.... they say they are equal opportunity employers, but.... how can anyone expect to be hired after disclosing such information?  And I feel like it is the opposite of integrity to withhold it.

People would be surprised to know how much this disease really, really hurts.  And how discouraging it can be.  But life is still beautiful, still a gift, still something to cherish and live as fully as possible.

The hardest thing to accept about my new reality has been admitting that I really do hurt.  I really am in pain, and I really could use your help.

Something I never thought I could do with my illness that I did was... well, we're still working on this one.  I want to have a baby.  I want to wait, but I can't.  If I'm going to do it, it's got to be now.  We will see if this happens.

The commercials about my illness... there are commercials about endometriosis?  I've never seen any.

Something I really miss doing since I was diagnosed is dreaming about future babies - about finding out that we'd gotten pregnant this month.  And I miss being able to be intimate with my husband without pain.

It was really hard to have to give up the idea that our children could be conceived, carried, and birthed 100% naturally.

A new hobby I have taken up since my diagnosis is blogging, actually.

If I could have one day of feeling normal again I would spar until my legs quit working, and then lay on my stomach on the beach and trace designs into the sand.  To end the day, I'd be painlessly intimate with the person I love most.

My illness has taught me to take care of myself.  To not say "I can" when I can NOT.  To ask for help, and to not be ashamed when I need a time out.

Want to know a secret? One thing people say that gets under my skin is "If it's God's will for you to have a baby, you will... at just the right time."

But I love it when people give me a big hug and say "I remember" on December 17th, which is the day our little girl was supposed to have been born back in 2006.

My favorite motto, scripture, quote that gets me through tough times is,
   "O Lord, My God, when I in awesome wonder
    Consider all the works Thy hands have made
    I see the stars, I hear the rolling thunder
    I see Thy pow'r throughout the universe displayed...

    Then sings my soul, my Savior God to Thee
    How great Thou art, how great Thou art!"

When someone is diagnosed I’d like to tell them, it's a tough road.  But not a hopeless one.  Look for the beauty in your life... because it is still there.  And now, it can mean even more than it ever did.

Something that has surprised me about living with an illness is how easy it is to get depressed and self-centered because of it.

The nicest thing someone did for me when I wasn’t feeling well was tell me to lay back down and rest.

I’m involved with Invisible Illness Week because I support others who have "invisible illnesses."  I know many people who silently suffer, and I want to give them a chance here to be heard.

The fact that you read this list makes me hope maybe it touched something in you that will help either you or someone you love.