Hope in A World Of Endo

During a recent visit to my mum’s house I found my pelvic scans dated 9 years ago.

I froze.

One picture unearthed memories. Memories of pain, confusion and despair.
I had archived those memories, so that I could live in the present and enjoy my here and now.

Out of three ultrasounds only one showed something that helped the doctor see that the pain was not all in my head. The other two scans, were the basis of the ‘it’s all in your head’ argument. The most frustrating and infuriating words that can be said to anyone in pain. Anyone battling real, physical, and invisible pain.

During those months, I was scared, alone and in pain. Those make for a horrible combination. One that can push you to accept everything at face value. I didn’t know about the endometriosis resource centers or support groups. My sleuthing skills were in too much pain to be bothered to do more research on the drugs being administered.

image: art by carrie joy

When the side effects came, I wasn’t sure which evil was worse, the one I had lived with for years or the one that I had willingly had pushed in to my glute. It was a literal pain in my butt. And some of its effects have stuck with me like glue. Nine years later it is hard to shake ‘em off.

I wish I knew what I know now about Lupron. I wish I knew that after sending aunt flo on vacation, it would erode my bone density; that it would sink me into a hole, that it would announce free room and board for every calorie looking for a home. That it would take over 5 years to lose that weight. That the sadness would overwhelm me. That I would experience menopause symptoms as a teen.

Just maybe, maybe if I knew all this, I would have made a more informed decision. I would have taken my calcium supplements, I would have sought help and not drowned in tubs of ice cream.

Information is power. Endo sucks! But it would sure be nice to know exactly what else you could be signing up for when you take a drug. I’ll be highlighting the drugs available in Kenya, and giving you the pros and cons of each.

Finally, we need excision surgery in Kenya. That is what hope in the dark world of endo looks like, excision. And healing, by God’s grace.

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Endometriosis and Mental Health

One of the areas that Endometriosis affects women in a great way is in mental health. Endo warriors fight many psychological battles. These have to do with living with chronic pain and reduced effectiveness, infertility, miscarriages, missed opportunities especially career wise, relationship issues sometimes leading to divorce, body image concerns such as weight gain or scarring from numerous surgeries, mood problems caused by hormones gone berserk or by some of the treatments we get to manage the condition. The list is endless.

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Endo Warriors find that these issues sometimes leave them in a dilemma regarding their identity. Wondering “who am I?” A mum in waiting? The sickly one? The divorcee? The fat one?

Generally, people tend to answer the identity question – who am I – with roles we play such as: I am a wife/ mother of two/ nurse/ divorcee/ the clown in the family. But is that really who we are? The problem with these descriptions is that they are all determined externally and could change any moment. The wife can become widowed or divorced, while the divorcee can get remarried. This is bound to create an identity crisis every time there is a change. Secondly, these roles come with society’s perception and expectation of how they should be played. This can also create disillusionment when we try to do things differently from the norm and the society rejects it. For example, in many of our African societies remarriage of a woman is still frowned upon even following the death of her husband.

So, what if we looked at our identity from a more intrinsic perspective? That instead of waiting for society to tell us who we are, we look inward and see what we are made of – those things that we have control over. Identify ourselves by such things as our values, our thoughts and beliefs, our likes and dislikes. For example, even though the society may mount undue pressure on an Endo Warrior married for a number of years but still trusting God for her miracle baby, she can still walk with her head held up high telling herself that her value as a person is not dependent on being a biological parent.

To achieve this level of self-awareness and confidence, our beliefs play a big role. Our thoughts and beliefs are the lenses through which we interpret the world They affect how we feel and act. Negative thought patterns will certainly make us feel sad, depressed, frustrated, overwhelmed and are likely to make us act irrationally. Some Endo Warriors end up giving in to negative thought patterns and end up feeling overwhelmed while others in the same boat rise above the struggles and end up excelling in their spaces of influence.

One healthy habit that Endo Warriors need to cultivate is guarding their thoughts. This needs to be a daily intentional action. Eventually this forms a habit and it becomes more natural to think rationally. Some of the ways to achieve this is through:

  1. Scheduling some down time – Incorporate quiet time as part of daily routine. Even better if this period includes spiritual nourishment like some uplifting worship music.
  2. Differentiate between what you have control over and what you do not – change whatever needs to be changed and quit worrying about what is not in your power to do so.
  3. Be kind to yourself – Acknowledge the struggles and respect the limitations that come with endo. Remember you never wished this on yourself – you just happen to be one of 176 million strong soldiers worldwide on this assignment.
  4. Self-Awareness – Begin to be aware of when your thoughts start to spiral down the abyss, then stop them. One trick of stopping these thought is to have a rubber band around the wrist. Each time you find yourself thinking negative thoughts, snap the rubber band and the slight pain usually jolts one to the present moment and away from the unhelpful thoughts. Try it!

Faith Osiro first shared this with Endo warriors at the March 2018 Endometriosisis Foundation of Kenya Endomarch event. She is a counsellor based in Nairobi. If you would like to get in touch with her, please reach her on 0737 861671.

The Endo Blues ~ Battling With Depression

I thought I was losing my mind. Instead of feeling better after the laparoscopic surgery I was feeling worse. Granted there was no pain in my abdomen, but I felt like a sedated prisoner in my own body. I desperately wanted to fight, but I was often too tired or sleepy and disinterested.

Getting out of bed was difficult, leaving the house felt impossible. I remember I would cut two pieces of paper, write ‘Yes’ on one of them and ‘No’ on the other and then pick one with my eyes closed. As I picked, I prayed that I would pick a ‘No’ so that I wouldn’t have to leave the house. Sometimes the voice inside overrode the ‘Yes’ I had picked and I would stay at home.

I was depressed, and I had no idea.

The hormonal treatment to treat Endo combined with Endo had hurled me into a dark corner, burdened my shoulders and I was forced to surrender. There was no happiness. There was no joy. Laughter was a mystery. I dragged my feet as I walked, and wondered why the nights were so short. I slept but never felt energized, and desperately wished that this aspect could manifest itself physically.

My doctor was only looking out for the physical implications of the disease. Not once did he ever ask how I was doing, psychologically and emotionally. Perhaps it wasn’t his place, but he could have brought someone to the table to shed some light on that aspect.

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I was nineteen and lost at the big blue sea. I was drowning on dry land. I was fighting phsycially and paddling to stay alive. I hated it. I cried bitter tears, if we wrung my pillow we’d fill a bucket or two.

I felt alone.

I was told to pray, and I prayed. The blues, well, they remained, the dark shades made way for the lighter hues. And as time went by, I begun to see the sun in my sky. I begun to feel the warmth of it’s rays on my skin. I knew that I would be okay.

My heart goes out to Endo warriors who are grappling with this darkness. You are not alone. You do not have to walk alone. If you would like to talk to a professional please call Faith on 0737861671. She has graciously agreed to help Endo warriors navigate these choppy waters at a discounted rate.

You can reach me via yellowendoflower@gmail.com

You are not alone.

 

Endo Prayers: I Need You

Dear Lord,

I need you.

There are so many things that I could say, but my words fail me. The weight of my heart is weighing me down. The words unspoken, sap my strength. You see the cries of my heart even before I mouth them. You know all things, you see all things, you are able to do ALL things.

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Lord, I ask you to help me feel you even in this state of being overwhelmed. As I feel like it’s me against the world: I stare at the pain, hospital bills, the societal expectations, my own expectations of myself and I feel weak. Unable to move.

You see the battle within, the fight of my life to try and stay afloat when I feel like a boulder in the deep, wallowing in the blues.

Wrap me in your arms. Remind me of your promises. Speak to me again.

Help those who feel like me, help them know that they are not alone.

In Jesus name, I pray and believe,

Amen

 

Drowning On Dry Land

I have struggled with chronic fatigue for half of my life. It’s one of the perks of having Endo. On top of being inflamed 60 percent of the time, you have to deal with being tired all of the time. There is nothing exciting about feeling sluggish, in fact, it’s hard to be excited about anything.

Seven years ago, a friend of mine was tired of hearing me say how fatigued I was day after day, so she gently told me, “Ess, you needed to suck it up and find another response. Perhaps you need to pray a little harder.” Deep within, I was sad that I couldn’t shake off the feeling. It wasn’t just in my head, it was in every fiber of my being. I felt like on top of losing to my period every month, I was losing to life every single day. I was drowning on dry land.

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The thing about living with an invisible disease is that you hear all sorts of comments minus the sensitivity your heart desires. I was told to pray some more because Endo is a curse, exercise because endorphins would do me some good, and find a shrink because it was all in my head. I tried all three strategies, but I have had to change my approach over the years.

There is a desperation that comes with being sick, you can try anything. I stopped judging people who go to witch doctors for help because of sickness or believe in seemingly skewed doctrines. When pain and despair threaten to tear you apart cell by cell, you become desperate enough to believe in a higher power’s ability to save you from drowning and dying slowly.

To combat the fatigue and sluggishness, I am using Apple Cider Vinegar (ACV). I have one tablespoon of ACV in warm water with honey, lemon, and cinnamon every morning and my energy levels are off the charts. I’m a little energizer bunny, I actually wake up excited to to see the day.

I’m still fighting other battles but I am definitely not drowning on dry land.

Ess