The experience of endometriosis

How to explain the experience of endometriosis?  It is not a "bad period" or "monthly pain."  It is an all-consuming, life-altering pain that has real impacts on quality of life. It is not simple fatigue, but rather, all-out exhaustion that prevents you from functioning.  It is not simply irregular bleeding, but instead bleeding on more days of the month than not.

Endometriosis intensifies with age. This has certainly been true for me.  Twenty years ago I used to be able to manage my pain with a normal dose of ibuprofen. When that no longer worked, birth control pills worked for a time. When those stopped worked, depo provera was tried. That never worked. In recent years, I have tried Toradol, a prescription NSAID, which also did not work, as well as narcotic pain relievers.  I am very cautious about my use of these because I know that if misused, they can have disastrous consequences.  Also, I find them to cause intense constipation which only exacerbates the pain of endometriosis.

After my laporoscopic surgery last year, my doctor put me onto Lupron.  I suffered through six months of this drug, a nasty injection that causes immediate chemical menopause. In my case, it also caused suicidal ideation, mood disturbances, and nearly continuous hot flashes. You are limited to six months of Lupron every few years because it depletes calcium stores and decreases bone density. It is a nasty, nasty, drug.

I have been taking continuous birth control pills since last April.  These have exacerbated my hot flashes and mood swings.  They also cause a more or less continuous menstrual period.  I pass large pieces of uterine tissue and blood clots.

I have passed out from pain. I have thrown up from pain.  I regularly experience fevers during ovulation and menstruation.  I alternate shaking with chills and sweating uncontrollably. The only thing that can somewhat soothe my pain is sleeping in a dark, quiet room with a heating pad. This is not all that compatible with being a functioning human being.

On Saturday I was woken up out of a sound sleep with a stabbing pain in my abdomen that continued for hours. It was accompanied by a fever. The pain decreased when my period started for the third time in two weeks.

When I am in pain, I can easily sleep 14-16 hours a day.  This impacts my ability to work and be social.

I know that endometriosis is a progressive disease without a cure. I know that more surgery is likely ahead of me.  I know that even when excised, endometriosis lesions can recur. But I also know that I am putting a lot of hope on my surgery next week.  I will undergo another laporoscopic abdominal surgery where my surgeon will attempt to excise the endometriosis lesions that I have.  I will also undergo a uterine ablation, where the lining of my uterus will be cauterized. Finally, I will have a Mirena IUD placed.  The IUD delivers progesterone locally, which will hopefully decrease the side effects I experience from taking hormones systemically.

Endometriosis and Kidney Disease

I've been tired this year.  I have emotionally been through a lot, so I attributed my unrelenting fatigue to a year that included a lot of stressors. Back at the beginning of August I went to my physician for a check up.  I was expecting them to tell me that I was likely just worn out and needed to rest.  I wasn't sure how this would work, since I was already sleeping about 14 hours a day, but I figured it was probably nothing.  Instead it turned out to be something. 

My labs were off, indicating that my kidneys weren't doing their job. My labs have been mildly abnormal for about a year, so my doctor sent me off to a nephrologist, a kidney specialist.  I was diagnosed with Chronic Kidney Disease, stage 3, based on my labwork.  The other interesting finding is that my body had extremely low stores of iron and downtrending hemoglobin.  This anemia was the cause of my extreme fatigue.  The kidneys produce a hormone, erythopoeitin, which stimulates red blood cell production, which carry oxygen. My kidneys weren't telling my body to produce enough red blood cells. I was prescribed oral iron supplements.  After about six weeks of oral intake of iron, I still wasn't feeling better, so I began a series of iron infusions. Finally I am feeling better. The picture you see with this post is one of my infusions of iron.

The biggest question is, how did I end up with kidney disease? 

Well, based on my medical history, the nephrologist had an answer for that too.

Endometriosis.  My constant companion of chronic pain.

I have had endometriosis (a disorder of the reproductive system where painful lesions of endometrial tissue grow outside the uterus and adhere to other organs, tissues, and vital structures) likely since I was 13. This disorder is characterized by excruciating pain, and a whole host of other unpleasant symptoms.  This disease is only diagnosed by surgery, which I had in September of 2016.  To combat the pain, I took exorbitant amounts of ibuprofen.  Sometimes up to 24 pills a day, that is 4800 mg, or about 1200 mg more per day than the recommended Rx dose.  The kidneys filter drugs from the blood, and my kidneys have taken over twenty years of abuse from ibuprofen. 

I have been very quiet about my endometriosis because there is such a stigma involved with menstruation and the female reproductive system.  But I am tired of being quiet about it.  Endometriosis has had very significant consequences in my life.  I have extensive scarring.  I am having a second surgery on October 3.  Endometriosis is one of the most common contributors to infertility, and I have been diagnosed with this also. Endometriosis causes intense pain, which I average feeling about 2-3 weeks per month. Endometriosis has irreversibly damaged my kidneys.  Kidney Disease has a very slow progression, and because I have eliminated all NSAIDS from my life, my trigger for kidney damage, my disease will likely stay exactly where it is and I will not ever need dialysis or transplant. Since I do not have diabetes or high blood pressure, my kidneys are not under stress  any longer. 

This post, my coming out about endometriosis and its consequences in my life, is my attempt to destigmatize and demystify the disease.  Watch for more posts to come.

Nevertheless, she persisted...a sermon on Matthew 15:21-28

Grace, Peace, and Mercy are yours from the God of abundance. Amen. 

 

It is a joy and an honor to be sharing the Word today at All God’s Children. My name is Amy Hanson, I am an MCC transfer clergy member. I was originally ordained in the Evangelical Lutheran Church in America. I work full time as staff chaplain at Regions Hospital in St Paul.  It is truly a gift to be a part of this community of faith. 

 

I love Gospel stories where the main character is a woman.  It means that what is going on so significant, that the patriarchy begrudgingly allowed it to be included.  And that is exactly what we have going on with this Gospel text.  

To set the stage, this part of Matthew’s Gospel is a long series of healings, pronouncements, and miracles.  We have Jesus healing the sick, feeding the 5,000, and just last week, we heard about Jesus walking on the sea. After today’s Gospel story, we have Jesus going on to Galilee to do more healing and to feed an additional 4,000 people in another one of his miracles. 

 

​Jesus left Jerusalem and went on to Tyre and Sidon.  A Canaanite woman from that region came and started shouting, “Have mercy on me, Lord, Son of David, mydaughter is tormented by a demon!”  But Jesus ignored her. And his disciples came to Jesus and said, “Send her away because she keeps shouting at us.” Jesus said, “I was sent only to the lost sheep of Israel.” But she came and knelt before him, saying, “Lord, help me.”  He answered, It is not fair to take the children’s food and throw it to the dogs.”  She responded, “Yes, Lord, yet even the dogs eat the crumbs that fall from their master’s table.”  Then Jesus answered her, “Great is your faith. Let it be done for you as you wish.” Then her daughter was healed instantly. 

 

​It is necessary to unpack this text a bit more to understand just how revolutionary and forthright this Canaanite woman is in her persistence. First, there is the obvious fact that she is a woman talking to a man. This alone would have been frowned upon in this day.  The disciples indicate their irritation and frustration with her desperate shouting. Next, she is from the land of Canaan, a Canaanite.  She is not part of the People of Israel. She is “other.”  Finally, unlike many people in Matthew’s Gospel, including the disciples themselves, she recognizes that Jesus is someone revolutionary. That he is in the world to do a new thing.  She calls him “Lord”, which is usually used to refer to God the Creator, and she calls Jesus, “Son of David” which implies his kinship in the line of the great King David. 

 

​But Jesus doesn’t respond in a way that most of us would find satisfactory.  This is one of those Gospel stories that I refer to as “Jesus is being a jerk again.” At first Jesus completely ignores the woman.  And the disciples urge him to send her away, because she keeps shouting. Nevertheless she persisted. Jesus says to the woman, “I was only sent for the lost sheep of the house of Israel. I was only sent to tend those who are part of the people of Israel, God’s chosen people.”  Nevertheless, she persisted. She kneels before him, and begs plaintively, “Lord, help me!” Jesus answers, “It is not fair to take what is promised to the children of Israel and feed to other people.”   And the woman retorts, “But Lord, even the dogs get to eat the crumbs from the masters’ table.” And somehow this final plea gets through to Jesus. He responds, “Woman, great is your faith. Let it be done for you as you wish.” And the narrator tells us that the woman’s daughter was healed instantly. 

 

​What happened in this moment? Did the woman’s persistence for her daughter’s healing change Jesus’ mind? This feels like a slippery slope to go down, given that we all have at one point or another prayed without ceasing for something that may or may not have come true. Is it that if you have great faith, good things will come to you? This doesn’t feel true either. I meet many people in the hospital with great faith who still suffer and experience grief and loss. 

 

​What if in this moment, the woman recognized that the blessing of Jesus was not just for the people of Israel, but for all people? It is really remarkable that she recognizes Jesus as Lord, and Son of David, when the disciples don’t seem to get it yet. The woman recognizes that Jesus’ kingship is not just for the house of Israel, the chosen ones. It is for all people.  She has so much faith that even a “crumb” of Jesus’ power is enough to heal her afflicted daughter. 

 

Who is God for this woman that she could persist in this way? She really is a model for us. As the beloved community of MCC, how often have we felt like the good news of the Gospel, the promise of Jesus, and the reign of God belongs to someone else? God for the Canaanite woman is a beacon of hope in a dark world.  As the MCC, God’s promise belongs to US! God’s abundant life belongs to US! The Canaanite woman teaches us that the abundant new life that comes from Jesus is too big and too much to be contained by human structures of who is in and who is out.  

 

This Canaanite woman can teach us something.  “This Jesus news is too abundant to say that I must wait.” She is reflecting Jesus’ own ministry back to him. The Canaanite woman calls out the misguided idea that God’s love is only for a chosen few. 

 

We are God’s beloveds. God’s promise is for us. Abundant life and blessing and healing and good things are for us. Amen. Amen. Amen. 

Breaking Point

I work in a field where I am reminded every day that someone out there has it worse than I do. But today feels like an insurmountable day. It feels like there are mountains to climb and I just can't do it. I am doing my best to survive my divorce, but it is really, really hard. I am hoping that writing about it will help today.

My ex (she who shall not be named) and I began to have issues last summer, nearly one year ago. I am not going to tell her actions to the internet because I am attempting to keep in check my desire to slander her. She wronged me greatly, and I will leave it there.

We tried many months of therapy. We tried a couple months of separation while she was in Washington, DC. Nothing worked. On Valentine's Day, she told me that she had fallen out of love with me. She began to mention divorce.

We agreed to a trial separation for the spring.  It was to be twelve weeks. I located an apartment for us, I would take the first six weeks, she the second. I packed up belongings to take to the apartment. I wasn't happy with this solution, but I was attempting to make it work.  I got really sick just before I was to move. She had to move all my belongings out of our shared house and into the apartment while I slept for days on end. 

After I emerged from the fog of sickness, she told me to drive to my new apartment. She said this wasn't permanent, it was just a trial. Until she told me differently two days later.

On April 3, she said she wanted a divorce. This is the day that everything changed. I shifted in my mind from being married to being divorced. Up until that point, she was the one who wanted divorce. From this moment,  I wanted the divorce. I wanted to be free from nearly a year of unrelenting pain and walking on eggshells and weekends where she would kick me out of our house and make me stay in a hotel because she didn't want to see me.

What do you do on the day when your whole life falls apart?  I went to work, because I didn't know what else to do. And I have been forging forward and attempting to put the pieces back together ever since. 

The actual process of divorcing has been a nightmare. We attempted a collaborative divorce process. This was an attempt to save money and expedite the process. But she has dragged her feet and stuck her head in the sand all along. She has gone many weeks without communicating with me or our financial planner (who is doing the division of assets) and our attorneys. She has blocked my calls and text messages. She refuses to turn in documents that are requested by the financial planner. This has now dragged on for four months.

I am at my breaking point today. I am at a loss of what to do. I am again mired in the concrete of her passive aggressive refusal to move forward. She has yet again refused to turn in required documents. Our financial planner is going on vacation for a week. So I am staring down another week with no progress. No potential of filing the divorce decree this week. Another week of unknowing and still being entangled with someone with whom I want no further contact.

I am no longer hurt, I am enraged. I am enraged that I have become the driver of this divorce. I am enraged that she refuses to extend even a shred of common courtesy to me or to the professionals attempting to facilitate our divorce.

I am heartbroken at the hatred I feel for someone that I used to love. I am heartbroken at the coldness and calculation with which she has approached this divorce. 

Today is a breaking point for me. I am just not sure yet what has broken.

Helping a friend through divorce

I wish that I was not joining the ranks of the divorced. This is not what I wanted for myself, my life, or my marriage.  It was not initiated by me, although I am now pushing forward to complete the process.

I wish more than anything that this was not my life path. But it is. And I have learned a few things along the way, that might be helpful for those who are helping a friend through divorce. 

The helpful things:

1. You can attempt to recognize the extent of the impact of the divorce
A divorce is said to be like a death with no body. This is true. The ugly withered fingers of divorce work their work into just about every area of your life.  For me, I lost my home, my pets, and started over with $0 in my bank account. Everything changes in an instant. Your friend will feel like the bottom dropped out from under them.

2. You can offer your friend grace when they are too tired, sad, or otherwise having difficulties coping
Divorce takes a tremendous amount of energy.  Just existing takes energy. Your friend likely won't be as productive as they once were. They might be too exhausted to keep up with social obligations. They probably won't remember dates, times, or other things.  Extend them grace. My employer has been tremendously gracious to me throughout this season of my life, and I cannot express my gratitude enough.

3.Make sure your friend is eating healthy food
One of my colleagues gave me gift cards to the cafeteria to make sure that I was eating real food. Other friends brought me coffee, invited me out for breakfast, or otherwise made sure that I was actually consuming food and not subsisting on cereal and bananas.

4. The little things matter more than you will ever know
The little things that so many of my friends did for me will not be forgotten. Allowing me to do laundry in their homes so that I didn't have to pay for the Laundromat. Picking me up from the airport so I didn't have to take an Uber. Asking me how I was doing and listening to the answer. Making me laugh with funny instagram pictures and cat videos and pictures of their children.

5. Make sure your friend has a place to go with you
Holidays are hard. Weekends are hard. Special days like anniversaries and birthdays are hard. I am thankful for all the people who reached out to me and took me out for coffee and trips to the farmer's market or walks or board game nights so that I didn't have to be alone with my thoughts. I am thankful for my family who flew me home to Montana for Easter.


The not so helpful things
1. Don't draw comparisons
Every divorce is different, just like every marriage is different. Your divorce/your parents divorce/your siblings/friends/neighbor's divorce is going to be different from mine. Just because you have lived through a divorce in some capacity does not automatically make us the same.

2. Don't triangulate/enable triangulation
This is just good advice for life, but also good advice in the aftermath of a divorce.  Don't tell me about what my ex is doing. Don't carry messages to/from my ex. Just don't.

3. Don't give advice/pass judgment
I unfriended and blocked someone really quickly for saying, "every divorce has two people involved in it and two sides to the story" when I reached out for support on a particularly bad day. Also, don't give advice unless specifically asked.

4. Don't slander my ex
Of course this is something that I want to do, and I may even do in therapy and with my close friends. But it is not helpful for you to do it for me.  Please don't.

5. Don't treat me any differently
I have experienced a loss, but I am not lost. My heart was broken, but I am not broken. I am angry, but I am not enraged. Please just be my friend.