Tag Archives: Endometriosis

March Forth… Along with a Million Other Women

04 Tuesday Mar 2014

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march forthToday, March 4th, the United Church of Christ and other denominations ask us to take a stand and march forth in body, mind or soul in an effort to bring justice to our world.

I march for Endometriosis.

Now, some may think this isn’t much of a justice issue.  To many, it’s another health issue to which only half of the population is susceptible.

Isn’t it just another painful period?  Aren’t periods supposed to be painful?

No.

Wait, didn’t God say that this is a punishment for Eve eating the forbidden fruit?

No.

Endometriosis is an illness when the lining that is usually found in the inside the uterus migrates  outside of the womb.  It can be found on the outside surface of the uterus, the Fallopian tubes and the ovaries not to mention the bladder, bowels and a variety of other organs.  The tissue has been found on the brain and in the lungs.

There is so much mystery surrounding Endometriosis.  They’re not sure if it’s genetic or if tissue is regurgitated into the abdominal cavity.  There is nothing we can do to prevent the disease from starting.

So besides not knowing how it begins, there is no know cure.  Doctors will prescribe birth control pills to control the growth.  If the pain continues, a laparoscopy is performed.  This is the only way Endometriosis is truly confirmed in a woman.  While they are performing the minimally invasive surgery, they will remove much of the tissue growing outside of the uterus.  Often, this will alleviate the pain, but for many of us, the growth begins again, and the pain intensifies.  Doctors will also prescribe Lupron, a drug that will place a woman into menopause for a few months.  The hope is that the Endometriosis is greatly reduced when the periods return.

Hormones have many side affects and no one really wants to have surgery.  I can tell you that it’s difficult to choose between the two.  Yet knowing how hormones wreak havoc on my body, I tend to choose surgery when the pain is consistently intolerable.

I’ve had two laparoscopic surgeries: one in 2003 (when I was diagnosed) and one in 2013.  I feel fortunate that I went over nine years without another surgery.  I seriously doubt that nine years will go by before my next one.

It’s incredible to see this great fight over the coverage of birth control when people with Endometriosis find it as a temporary solution.  Unfortunately, birth control is a “sinful” substance to many, but for a multitude of others, it returns their lives.  It should be widely available for women to use for a number of reasons.

There is one other thing: not all doctors are willing to face Endometriosis.  I’ve had a couple of wonderful physicians who were willing to take my condition seriously.  But women are told that extremely painful periods are normal.  By gynecologists.  And then they are told pregnancy and hysterectomies will cure the disease.  Yet nothing is curative.

So it’s time to stand up, to march and to let women know that painful periods aren’t what we as women should be experiencing.  It’s time to be like the woman with the hemorrhage in Mark 5 and advocate for ourselves.  We’re not willing to have these pains decade after decade when it could have been diagnosed in our teens or early 20’s.  We’re not willing to stand by as this disease takes over our bodies and robs us of our lives.  We’re not willing to let this tissue grow like weeds so that we experience defeating infertility.  It’s time to use everything we can and let our health care providers know when our body isn’t right.

And it’s time for us to stand up to our legislators and let them know to allocate more money in funding for research.

As we march forth today – most of us virtually – let us support one another in our common pain.  Let us support those we love whose pain overcomes their lives.  And let us stand up to the powers that be who can make fiscal decisions, making this disease a thing of the past.

I plan on sending a to my senators and congressional leaders.  Others will be marching in Washington D.C. and other cities all over the world on March 13.  What will you do?

Find contact information for elected officials in the United States HERE.  For more information on the Million Women March for Endometriosis, check out the website: http://www.millionwomenmarch2014.org/.

Chronic Illness in the Body of Christ

22 Friday Feb 2013

Posted by in Life, Pop

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As many of you know, I struggle with endometriosis.  It’s an illness that causes endometrial tissue to grow outside of the uterus.  The health issue causes me to occasionally feel extreme pain around my cycle, extra fatigue and stomach discomfort.

I’ve learned how to live in pain and exhaustion.  I’ve done what I can to improve my condition including having surgery and changing my diet just so that my pain and discomfort will be minimal.

But so many people have conditions that are painful in very different ways or even completely debilitating.  Some of these include fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, lupus, irritable bowel syndrome, Crohn’s disease – among so many others.

In the past number of months, I’ve connected with many women who have endometriosis and, often, other chronic health issues.  Many work but have very limited lives beyond work.  Some can’t work at all.  There are a number of people in this country who have no health insurance.  Those who are able to see doctors are often given excuses that “it’s in your head.”  I’ve heard that many women with endometriosis are told that incredible pains are “normal” (but I’ve never experienced this myself).  Each month, these women live at a pain level of ten.  Eventually, when the pain gets bad enough, they have an exploratory surgery to see what is happening.   At that point, they are told they are infertile or need a colon resection surgery because no one listened to them years earlier.

Many chronic illnesses take a while to be diagnosed and treated.  Sometimes, there are no treatments for the aches and exhaustion of some of these health issues.  How frustrating it is to be told that there’s no solution to exhaustion and pain, except for cognitive therapy and antidepressants!

Frustration does not stop there.  They work and parent even though their bodies feel as if they are to fall apart at any moment.  If they can’t work because of the extent of their illness, many people with these chronic illnesses are told by society that they are lazy and don’t want to work.  Their pain is not believed because it doesn’t show on the outside of their bodies.  I’ve  heard one person with one chronic illness tell others that their health problem is not a “real” illness.

Because we are all part of the Body of Christ, we all suffer from endometriosis, fibromyalgia, rheumatoid arthritis and the entire list of autoimmune and chronic diseases.  Because we are one in humanity and one in Christ’s body, we also all suffer from diseases like Parkinson’s, MS, cancer, AIDS.  When one part of our body hurts, our whole body hurts.

So when someone  with a chronic illness is disregarded, they do not receive the dignity they deserve.  They feel even less dignity than they did when they kept their illness to themselves.

Unless we walk in their shoes, we can not understand their pain, their slowness in movement, their foggy minds and their fatigue.

As people of faith, what can we do to give dignity to our sisters and brothers who hurt?  Of course we can pray for them and with them.  We can offer scriptures, like Psalm 6, Psalm 22, Psalm 23 or Psalm 38.

But people with chronic health issues will need more than a few Bible verses handed to them.  They yearn to feel human, desire to reclaim their dignity and want to be heard.

When each and every day you wake up with another symptom or feeling overwhelming pain, you feel like Job.  You may feel that God has deserted them.  When you can’t get your health problems resolved, you feel like the woman with the hemorrhage.

So as people of faith, how can we be a support to them when their doctors and friends don’t even believe them?  Frankly, it starts with listening and praying with them so they know that someone else is cheering for their healing.  It starts with helping them sort their feelings, giving them a space to vent and cry.  It helps if you can go to their appointments with them or pick up their medicines for them – if they ask.  It begins with helping them reclaim their dignity as made in God’s image.  Our care for them includes spending time with them in fellowship; many of them can’t leave their homes or have limited energy for fun activities.  They find isolation in their illness.

And it begs for us to be advocates for their health in broken health care systems.

I don’t think God gave me the endometriosis pain “for a reason.”  God experiences pain when we do, and I don’t think of pain as punishment or a method of teaching.  But I believe God is calling all of us – those who have experienced pain and those completely healthy – to use our voices and stand with those who hurt, knowing that we aren’t alone on our journeys.

Healing Pain

19 Saturday Jan 2013

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I’m sore.

This past Tuesday, I had my second laparoscopy for Endometriosis.  Because it had been nine years since my last laparoscopy, I don’t remember all of my post-operative pains that resulted from the first procedure.  Yet, I knew I was going to experience some soreness.

As much discomfort as I have experienced in the past few days, I must admit that I have had pain much, much worse.  In the past six months, my pain level has reached a ten.  The discomfort I’ve experienced in the past few days since my surgery does not compare to the days and nights of debilitating cramps.

Yet there is still pain, and my body is still healing.

But I can no longer classify my aches as a destructive pain.  Since this surgery, the discomfort I’m experiencing is a healing pain.

My post-operative pains remind me of this scene from Grey’s Anatomy.  When we surface from a surgical procedure that saves our life or our quality of life, we are no longer (or less) captive to the agony that tore our lives apart.  We have been released from the bondage of misery and are now crossing the threshold to a new phase of living.

Healing pains apply to emotional and spiritual injuries as well.  When I was in Clinical Pastoral Education in 2008, we were given the illustration that spiritual/emotional healing is like a wound healing on our body.  Injuries can heal incorrectly.  But if we want to truly heal the wound, we must clean out the sore.  If a bone is healing incorrectly, the bone must be broken once again and then reset.  How much pain does that cause?  How do we try to avoid that extra pain when we are in the healing process?

Healing means we must face pain directly.  It’s pouring alcohol in an open wound.  It’s having surgery to avoid destructive pain.  It’s going to therapy and talking through our issues.

And it’s knowing that God is in the wound with us – – whether we are healing or the sore is new.

I do hurt, but I won’t suffer forever.  I know my current pain is part of the journey to healing and wholeness.

Surgery beyond television dramas

15 Tuesday Jan 2013

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I’ve watched every episode of Grey’s Anatomy multiple times.  And many episodes of ER.  And a few episodes of St. Elsewhere.  I love medicine, and visiting hospitals absolutely does not gross me out.

That being said, facing surgery tomorrow is freaking me out.

I have endometriosis, a condition of migrating tissue.  Through laparoscopic surgery, I am able to get some relief from the pain and discomforts of my condition.

I had this surgery in December 2003.  With the exception of a little reaction to the anesthesia, I recovered fairly well and the results of the surgery delayed further growth.  I am fortunate that I’ve gone nine years without another surgery.

However, during the past six months, I’ve experienced horrific pain and other abdominal health issues.  My fatigue has been worse.  My life has been limited by my condition, and I want to live fully again.

So often, I visit people in hospitals immediately before their surgeries and in the days following.  As I’ve had to go under the knife, I remember the fear that people face when they, too, must have surgery.

Now it’ s my turn.

I don’t believe God is making me endure this surgery – – either because I’ve done something bad or because I need to learn a lesson somehow.  Instead, God goes with me into the surgery.  God sits with me as I freak out on my couch tonight.  God stands next to the operating table, stands with the doctors and nurses, gives wisdom to the anesthesiologist and gives peace to my parents in the waiting room.  God is in all of these places bringing strength and peace.

So I value your prayers, my friends.  If you are not a praying person, I value any thoughts, energy and love you send my way.  To me, all of these things sends a peaceful and healing energy into my life.  I am blessed to know that the people in my church, my clergy friends from around the country and my endosisters (women with endometriosis) all over the world are thinking about me.  Because of this energy and God’s constant presence, I know that I’m not alone.

Loving God,
Thank you for your gift of medicine,
Your doctors and nurses,
For family and friends who care.
Guide the hands of medical professionals,
Bring wisdom to their minds.

I pray for all others having surgery tomorrow and this month.
I pray for all caregivers,
And I pray for those who struggle with the same medical condition I have.
In the healing name of Jesus the Christ I pray, Amen.