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.

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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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More colour, Less Gray

Happy new year!

I hope you had a lovely festive season.

For a long time I was indifferent to new years, the only new thing that it came with was an opportunity for me to wail in pain. In fact, a few years back I was convinced that the older I got the more excruciating the pain became. I longed to find the pause button in life, so that I could sift out the things that I loved and dwell on them.

Pain has a way of changing your life, it shifts your priorities and erases the rainbow in the sky. Both your happy and sad moments are processed through a gray-scale filter.

I still haven’t found the pause button but I have accepted that each year has it’s own beauty that I can dwell on. I am learning to live each day at a time and to remain grateful. Gratitude can illuminate the darkest of paths.

The truth is we don’t know what 2019 will hold, (I am not here to tell you that 2019 is your year…) but we know who holds it. While some curve balls may roll in our direction, I pray that we will experience the grace, peace, strength, joy and love that come from above. And that despite the pain, the rainbows will remain.

Here’s to 2019. A year of living life and finding joy in the little things.

While We’re Waiting

Waiting can be hard, lonely and devastating. The dark corridors can dull your spark of hope, the echoes of discouragement can fill your cheeks with sadness and cause your eyes to overflow with tears.

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Waiting Wombs Trust is devoted to walking with women who are waiting on the Lord to hold children in their arms. The reasons for waiting may vary but the journey’s hurdles are similar. The love, grace, care and information that you receive from Waiting Wombs Trust are unmatched. They are more than a support group, they are a family, for those who have despaired, those who have lost, those are hanging on, those who are waiting.

They are hosting a ladies conference #hopeinwaiting on September 21st to 23rd at Pelican Lodge, Elementaita.

Some of the topics that they will cover are:

  • Keeping hope alive
  • What to do when he leaves
  • Grieving
  • Adoption
  • Health

If you would like to register or partner with them, please text the word ‘Conference’ to 0723144000 or send an email to info@waitingwombstrust.org.

One of the songs that have encouraged me while I have been in seasons of waiting is

May the Lord strengthen you as you wait, may you truly run and not grow weary. May you soar on wings like eagles.

There is hope in waiting!

31 Days Of Endo ~ Unsilenced

Day 22

Individual’s stories are like dominoes, they look small, but they have the power to start a revolution and change the status quo.

Two years ago, Arti Shah, resolved to tell the story of Endo warriors living in Kenya. At the time, I had come to Nairobi for the annual Endometriosis of Kenya event.

This documentary is a beautiful symphony of voices that were once stifled and muffled by pain, despair, and shame. Arti has beautifully put them together and presents the trailer of Unsilenced.

One day Endometriosis will be a household name. Please watch and share.

 

#31 Days of Endo ~ 11 Tips for Mums of Endowarriors

Day 13 🙂

I am taking a short break from sharing the stories, to share some tips for mums of endo warriors. More girls in their teens and early twenties are getting a diagnosis, more often than not, being diagnosed with endometriosis throws them and their families into confusion.

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Endometriosis is one legacy no mother ever dreams of passing on to her daughter. The reality of this statement echoed through my mind in 2015 as I nursed my daughter. When I held her and stared into her little eyes, I felt a strong desire rise up within me, to do something to make sure her story was different. That the story of her generation would be different. A few months later, Yellow Endo Flower wsa born.

Along the way, I have met Endo warriors, a beautiful community of women fighting the same battle. We are one in ten women.

There are mothers reaching out, wanting to help their daughters navigate the murky waters. It is hard for them! Let no one tell you otherwise. Watching your little girl lay in foetal position because of pain is heartwrenching to watch, month after month.

For the mums, here are a few things that you can do to help make the journey a little easier for your daughter:

1. Believe Her

When she tells you that she is experiencing pain with her period, believe her. Do not try to minimize or trivialize the pain. Pain is the body’s way of asking for help, if we do not listen to its whispers, we will have to stop our day-to-day activities when it screams.

2. Be Present

Buckle up, dear mama, and make the decision to be present for the long haul. The journey may not be smooth, but your presence makes a world of a difference.

It may seem easier to just give her money to see the doctor, but, depending on the relationship that you have with her, she may need you to hold her hand and encourage her heart. Waiting rooms and emergency rooms can be very lonely places.

3. Find a doctor who understands Endometriosis

You may be tempted to take her to your Ob/Gyn, while s/he may be a good place to start, it is good to see a doctor who is trained in laparoscopic surgery and who deals with a lot of Endometriosis cases. Find a doctor who has a good bedside manner.

You can find referrals in your local Endometriosis community. If you do not know where to begin, you can send me an email via yellowendflower@gmail.com and I will be in touch.

4. Get informed

Information is power, it is difficult to manage what you don’t fully understand. Read more about endometriosis and how it affects her body. The top searches from google are very informative. There are books for sale online that are good resources.I have been sharing Endo stories in the series #31DaysofEndo.

From the information readily available, evaluate the changes that she can make, and those you can make as a household.

5. Evaluate the triggers

Endometriosis symptoms may be aggravated by things that an endo warrior is exposed to. The only way to establish what the triggers is by eliminating the potential trigger foods and products and keeping a record of the progress.

6. Keep a period diary

Encourage her to actively keep a period diary, to record the pain and other symptoms when they strike so that she can understand the patterns in her cycle. If you are looking for a simple diary to start with, I have written a period diary book titled Bloom, it is available in Kenya for 500/=.  It is ideal for girls and women.

Understanding her cycle will enable her to forecast her energy and work around the flare-ups as she works on managing the symptoms.

7. Ask questions

Note down your concerns on a paper and go with it when you visit your doctor. Ask the doctor to break down the treatment plans and to let you know what you should look out for.

Trust your inner voice and don’t settle for an explanation that doesn’t sit well with you.

8.  Educate those around her

People tend to be less sensitive to what they do not understand. Share with the people around her: her friends, school, and people who live with her, what Endometriosis is, and how it may affect her, that way they may be more understanding and willing to help.

9. Keep a medicine log

Pain and symptom management are an integral part of the Endo journey. Before she starts any medication, make sure you read the pamphlet and make a mental note of the side effects to look out for. Note down any reactions and allergies to drugs so as to mention them to a medical practitioner in future. Keeping a log will also help you to see how much medication she needs to manage the symptoms.

10. Offer psychosocial support

The emotional strain caused by endometriosis should not be overlooked. Many endo warriors tend to suffer in silence because they do not know where to seek help. Find your daughter, someone, she can talk to. Find a support group or forum that she can plug in to, and meet other girls and women who are walking the same path.

11. Keep hope alive

The consistent flare-ups, hospital visits, medication can grey a girl’s dreams. The constant feeling of fatigue and malaise can take the toll on you. Encourage her to write down a list of her ambitions and dreams. When she is well enough to do them, encourage her to pursue them. Celebrate the small steps as you wait to make the big steps.

Do fun things with her, talk to her, love on her and be there for her.

All the best, mama! Your labour is not in vain.

If you’d like to talk more about Endometriosis, feel free to drop me a line via yellowendoflower@gmail.com

 

 

 

 

 

 

#31 Days Of Endo ~ Shiru Muraya

Day 12 🙂

Endo can push you to the wall, and force you to give up some of the things that you were so sure you couldn’t live without. Then, what started off as a diet becomes a lifestyle, a way of life. Shiru Muraya shares with us her journey of pain, courage and a new found hope.

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My periods begun in high school. To be more specific, mine begun while on a fantastic holiday in Naivasha where I now had to explain to everyone why swimming was not an option.

 

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I am now a 26-year-old daughter, sister, cousin, niece and, for 1 year now, a proud wife.

From the information I gathered, my endometriosis began in high school when I was around 17. The period pain intensified. I would narrate the pain to my mum she’d tell me that it is okay, what I need to do is pop a pill. I always thought lightly how my mother took comfort in pills, not realizing my mother and I faced, and still face, the same battle.

 

As a teen I had severe acne, and the dermatologist prescribed for me birth control pills. The relief was instant, the pain decreased. At such a tender age, not knowing the side effects of the pills, I began to experience anxiety, depression and heart palpitations. I was a newly initiated health freak and I got to researching. My conclusion was that this method was not going to work, so stopped taking them and this disrupted my menstrual cycle. I discovered that I loved to read about health and wellness.

 

I became a vegetarian. Yes people, by choice. And let me tell you, my family took turns at challenging my new lifestyle. I am glad to say that it has been ten years and counting. The diet change made a small difference in my pain levels.

 

For over 5 years, I continued with Ponstan, Panadol and hospital visits to relieve the pain. One major symptom held me down every month, I was fatigued.

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Yes, I was eighteen and fatigued, and still not aware I had endometriosis. I continuously blamed myself for not being good enough. I told myself that I was lazy, and started exercising two to three time a day, pushing my body further into a vicious cycle of fatigue, insomnia and pain. I would bloat so much that I could not button my trousers.

 

In 2014, as I went through the wild fun of university, I began to drink and neglect my health. With school and a part time job, my body began to deteriorate and even though I was not eating well I gained 5 Kgs. What could this be? I was well rested but exhausted. No matter how much exercise I did, the weight would not budge. Then my period did not come for one, two, then three months. I panicked!

 

With an insurance cover that I insisted on getting during the year, I took to the hospital. The doctors told me I was pregnant and my hormonal balance was causing the issue. This was without any positive urine or blood test. Doctors!

 

As my symptoms grew worse, I researched my symptoms and diagnosed myself with either an ovarian cyst, PCOS (Polycystic Ovarian Syndrome) or endometriosis. The next time, I marched into the hospital and demanded an ultra sound. And lo and behold, there was a 10cm * 10cm ovarian cyst in my right ovary! The doctor did not even apologize for the misdiagnosis. After three months I had had enough, I packed my scans and patient history never to return to the hospital again. I booked an appointment with a gynaecologist who came highly recommended.

 

With my appointment on the Monday, I continued my weekend with hope. Unfortunately, the ovarian cysts ruptured, and I has no idea what was happening when they ruptured. I fell to the floor in agony, sweating and feverish as my boyfriend, confused, helped me into the shower for a cold rinse. The pain subsided and I insisted I was fine enough to wait for my appointment.

 

In the morning, my boyfriend insisted on accompanying me to see the doctor. When I got to the clinic, the nurse took my temperature and blood pressure asked me how I felt and she left. Two seconds later, the gynaecologist entered the room and confirmed the tests, he then asked me if the night before I had suffered severe pain, and I confirmed. He calmly explained that the cyst had ruptured and I was experiencing internal bleeding.

 

He drafted a letter for an emergency laparoscopy surgery to be performed the same day and off I went. At this point, I was scared out of my mind! I was not mentally prepared for this. The surgery was successful.  As I sat there in bed, my mother took to the university with doctor’s letter for leave of absence, and came back empty handed as the university did not understand.

 

With only two weeks to recuperate, I took to the internet, YouTube videos, articles etc. I began my lifestyle change. When I resumed university, a stinging pain began to torture me. The doctors confirmed that an infection was imminent and I had to rest. It was either I failed my classes for missing them, or the infection spread. Neither was a choice. This is when I accepted help. My boyfriend took to helping me with life. Feeling vulnerable and weak almost sunk me.

 

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I discovered Ayurveda in the quest to grow my hair. That is a story for another day. Ayurveda has a lot to offer in natural ways to heal your body. I use Eve Care by Himalaya Herbal healthcare. This helps stabilize my hormones and diminishes the pain significantly. I take it for six months and it keeps me going through the year.

 

Early 2017, I had my first flare up in two years. It’s said that after two years after surgery the symptoms are more than likely to return. I had been drinking a lot of coffee to get through the day for one year and my body was done. As the month began, I started vomiting every morning. I could not eat. I started to gain weight, I had chronic backache, pelvic pain, fatigue, fainting and hair shedding. For one year, I had been deemed ‘overwhelmed’ at work, but I was too embarrassed and ashamed, to share the real story.

 

The challenge of endometriosis meant that as an outgoing lady, I was easily reduced to a crying helplessness due to the pain, fatigue, confusion, frustration. Chronic fatigue can make a professional career difficult.

 

Let’s just say I was a mess. After some deliberation with my family, I made the decision to leave employment and take care of myself. Some said it was a drastic decision, but it was necessary for my sanity and that of those around me.  I have taken 8 months to recuperate and regain my balance. It has been a lot of sacrifice.

 

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I had to sit and really think about the quality of life I wanted. After quitting my job and sleeping for like two months, I began to research more and more on diet and Ayurveda. I started to eliminate more items from my diet for the long haul. I mentally prepared myself for a transformation. This led me to transitioning from pescatarian to vegan or whole plant-based diet, giving up ALL caffeinated drinks and swimming at least 5 times a week. Ladies, this truly has been a transformation. My body, mind and spirit have been restored. I no longer need days of auto pilot to go through my menstrual cycle. During this transition, I fought hard with myself as I slipped back to cheese or bread. This is not a diet for me, it is my lifestyle now. My symptoms are not all gone, but they have subsided.
In my time off the corporate world, I’ve concentrated on my business @Urban.bantu. A business I had started last year in my kitchen. The facts are out there, that lotion, detergents and beauty products have chemicals that elevate estrogen and cause more harm to us. My history with eczema, acne and un-even skin tone brought about the curiosity to explore DIY cures. I currently offer whipped body butters and African black soap with more products to come in this year.
I have a new spark in my life, I have learned the value and greatness of self-care, sacrifice and family. I will NEVER sacrifice my health and well-being. Remember that no one will understand what you are going through until you speak up. As I continue this journey, I aspire to help endo warriors through their journey of healthy living.

You can follow Shiru on Instagram and connect with her on Facebook. You can make your orders here.

Thank you for sharing with us your story, Shiru, and for inspiring us not to be afraid to make seemingly drastic decisions for our benefit. We hope that you will have more happy, painless, boisterous and hope-filled days. We are looking forward to the other endo-friendly products that are in the pipeline.

 

 

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

 

Yellow Flower Mail

The cold floor and I were once good friends, not by chance but as a result of circumstances. When Auntie Flo’ checked in, the pain would overwhelm me and the cold floor was my happy place. The pain felt like a furnace was in my belly, the painkillers seemed like drops of water trying to put out a raging fire.

My eyes were always moist, dust particles had an eviction notice every other day. Crying sessions were part of my routine, the pain made me feel like God, the world and my body were against me, no one wanted me to prosper. As I balanced on my sides I wasn’t seeking prosperity, it was survival I was after. I just wanted to survive, to be well, to be pain-free.

Eight years later, my story has changed, I’ve come a long way and the pain has subsided, I have energy and I have a testimony.

2 Corinthians 1:3-5 (AMP)

Blessed [gratefully praised and adored] be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort, who comforts and encourages us in every trouble so that we will be able to comfort and encourage those who are in any kind of trouble, with the comfort with which we ourselves are comforted by God.

I want to share the comfort that I have received with other ladies fighting Endo in Kenya through handwritten letters of hope.

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If you are an Endowarrior living in Kenya and you would like to receive Yellow Flower Mail please fill in the form below and I’ll get writing.

https://www.surveymonkey.com/r/M6G3NQ2

If you would like to support women living with Endometriosis please send me an email via yellowendoflower@gmail.com and I will be in touch.