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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Endo Warriors At The Coast

If you are tired, learn to rest, not quit.

2019 has had more water breaks than sprints and dashes, but in the quiet moments, I have recharged and found new strength.

One of the ideas that was born in the extended water break was ‘Endo warriors at the Coast’, an idea that I have dabbled with and shelved many times over the years. But, when the time is right, things align, and ideas are actualized. Lives are changed.

Without a doubt, I am convinced that angels exist, that God sends divine helpers to hold our hands, provide solutions and remind us of His steadfast presence.

On 10th November we had our first support group meeting. Days later, my heart is still full. Full of joy, peace, hope and expectation. A group of 10 ladies assembled as strangers, and left three and half hours later, refreshed, and with a larger network of women in Mombasa.

We had an interactive session where we shared our journeys, talked about menstruation, menstrual hygiene products, and the herbs and products that are easily available in Mombasa. It was insightful, informative and refreshing.

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Freedom for Girls donated a pack of reusable pads and liners for each lady. We left with both our hearts and hands full.

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Shufaa shared a video with snippets of the event on her YouTube channel. You see what I meant about angels?

A huge thank-you to everyone who came and made this day possible.

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We have some upcoming events:

26th January 2019 – Endo warriors support meet up

23rd March 2019 – Endometriosis Awareness Event – Mombasa Edition

Details will follow. If you would like to learn more, or even plug in, please drop me a line on yellowendoflower@gmail.com.

Our individual voices may be faint, but together we are an army of warriors, creating a beautiful symphony, that will be heard.

Homemade Apple Cider Vinegar (With the Mother)

Apple Cider is one of my staples. It is way more effective than an energy drink, and a great plus is that it doesn’t give me heart palpitations. The last time I had an energy drink I thought I was going to die. My heart wanted to actively transport itself out of my chest. Instead of feeling energized, I felt anxious, hot, angry and out of control. I am low key intrigued by people who can have a Jägerbomb and live to tell a tale.

I have been using ACV on and off for the last couple of years, and I am sold. My main frustration is sometimes it goes out of stock when my bottle is close to empty, so sometimes I have to take a break from it. My body is not usually very happy about this- the fatigue and brain fog show up.

A few weeks ago, I sampled a kombucha brew that my friend made and I loved it. I told her I would make it and she asked me if I’d ever tried to make ACV. It piqued my interest and I decided to give it a shot after all the worst thing that could happen is it backfires and I go back to using the store-bought one as I restrategize.

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Thanks to Wellness Mama, which is a spring of valuable information, I made my first batch. It has taken slightly over 7 weeks but I now have 400ml of raw and unfiltered homemade ACV with the mother. I made a small batch to minimize my losses.

Anyone who would like to make their own ACV, here is the recipe that I used. Making it at home is perfect especially if you use it for multiple things such as skin care, cooking, and cleaning.

I’ll share my Kombucha brewing experience in my next post.

Have a lovely week 🙂

What To Pack in Your Hospital Bag Before Surgery

I went for my first surgery dressed in jeans. It was a day surgery, needless to say, that was a horrible idea. Dressing up afterward was not easy, my bladder was sore and my urethra was upset that a catheter had gone visiting, yet there I was trying to keep up with fashion and fit into a snug pair of jeans while anesthesia coursed through my veins. For another one of my surgeries, I wore a loose dress but I over packed and looked like I would be staying at the hospital for several weeks.

Five surgeries later, I have narrowed the contents of my bag down to necessities and comfort. Before I pack it, I ask myself is it necessary? Will it make me feel more comfortable?

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Here are a few items that make it into my bag:

For the hospital stay

  • Surgery documents, pre-authorization forms if you need them
  • A packet of pads or panty liners in case you bleed post-op
  • Toiletries (toothpaste, toothbrush, flannel, shower gel/soap, lip balm, lotion, comb/brush )
  • Wet wipes to freshen up
  • Low waist or high rising underwear ( granny panties) that don’t touch the incision scars, and are easy to wear and remove
  • Comfortable bra preferably without an underwire
  • Shoes that are easy to slip on like sandals so you don’t have to bend
  • Entertainment: colors and coloring book, a book to read, music/ podcasts to listen to
  • Sweater and socks if you feel cold
  • A blankie / Maasai blanket
  • Phone and charger
  • A notebook – note down any questions you have that you want to ask the doctor before the surgery and any questions you want to ask during your post operation review. Also, you can write down the side effects of drugs to look out for when you go home.
  • Snacks – if you carry any, make sure that they do not cause bloating

For the journey home

  • Comfortable clothes to leave the hospital – yoga pants or a maxi dress
  • A pillow
  • Something to fold and put between you and the safety belt.

Confirm what your hospital gives you so that you decide if you need to add items onto this list.

As you plan for the surgery, I pray that you will experience God’s peace and that His joy will be your strength. May you know that He is right there with you through it all.

Deuteronomy 31:8 New International Version (NIV)

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Is there something that you packed and was a lifesaver, that you’d like to share with other endo warriors? Please leave a comment below.

 

 

#31 Days Of Endo ~ Patricia Roy

Day 4:)

Endometriosis is real. It is not a fictional pain, it is real and it affects 1 in 10 women. Removing one’s uterus is not a cure for Endometriosis, Patricia Roy shares with us her story of pain, courage, and hope. She first shared her story with me in 2017.

She is based in the United States and she supports her fellow endo warriors and shares an array of home remedies on her social media sites.
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Hi! My name is Patricia and I am 41 years old. My period started at the age of 14, and I couldn’t wait to start my period. It meant I was a woman in my eyes. The period issues began when I was 15 years old. My mom took me to my sisters’ gyno because my sister had endometriosis and I was showing symptoms. After I saw the gyno he did surgery and I was diagnosed with endometriosis at 16.

When I was first diagnosed I didn’t worry about it, because it wasn’t severe. But I was put on birth control to help with my periods. When the pain started increasing I was put on Depo provera injections. Those didn’t work, so I was put on Lupron and that also did not help. I had many surgeries to clean out the endometriosis and at 21 it was decided a full hysterectomy would be best for stage 4 endo. I thought it would be a cure, but it was not a cure.

I do regret the hysterectomy. Because it’s not a cure. And I always wanted a baby if my own. It was a very dark time in my life when I had my hysterectomy, my writing helped me cope.

 

This disease changed my life in many ways. I was unable to finish college because I was too sick. I worked off and on but eventually I had to be put on disability. Emotionally my journey with this illness has caused me a lot of anxiety and panic attacks.

I have had 32 surgeries so far and I currently have endo on my bladder and cysts all over my pelvis. I started a support group on facebook called Sisters in Yellow.

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I currently started writing for a magazine called  Streetfashion, I am the beauty editor.I always wanted to be a writer since I was little. I write poetry and song lyrics. My writing has gotten me through a lot of dark times, dealing with this disease.

My advice to other women is to take it one day at a time, and to find a hobby that takes your mind off the pain. I’ve also come across a lot of pain methods that are natural and can be done in the comfort of your home. I have a beauty page where I share home pain methods.

My favorite flowers are Daisy or Calalily.

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The beautiful thing about Patricia is that she has not let Endo dull her sparkle. 32 surgeries later, she still has a smile on her face and light to shine to the rest of the world.

Thank you for sharing with us, Patricia. Your story is an encouragement to many sisters. Keep writing and shining!

Bloom

“It is well” is at the tail end of things that I like to hear in times of turmoil. It is a phrase that I heard in the gusts of pain and wondered how anyone could conclude that what felt like a near death experience was something to talk about on a positive note.

10 years ago as I writhed in pain, it was not well. My body was not well, my mind was not well, and, I was not well. Everything hurt; passing urine, bowel movements, ovulating and menstruating were all accompanied by pain. I hated the journey, and I didn’t have good things to say about life. I was drowning on dry land. A few months later, I began my journey to get a diagnosis, which changed my life even more. Endometriosis is a silent, seemingly subtle thief, that lurks in the night at first, and then becomes brash as it matures and steals unashamedly in broad daylight. The pain that I had been battling over the years was all linked to the painful and heavy periods but I had no idea.

Pain is a very good teacher, thankfully we do not all have to attend its classes, especially if we have other people to teach us. My experience through pain and life change bore a desire to teach what I wish I knew as a teenage girl. One year ago, I decided to put the lessons into a book.

Bloom is here

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I am stoked that it is a reality, Bloom is a product of tears, surgeries, questions, countless medications, and a desire to be the change that I want to see.

Bloom is your practical guide for your period journey. It describes how a normal period should look and feel like, it explores the sanitary product options, healthy practices that every female should employ and teaches girls and women how to keep a period diary, the different factors that they should look out for and it includes a one year period diary.

Keeping a period diary over the last couple of years has revolutionized my life. I am now more self-aware, able to identify patterns in my cycle, and kinder to myself, there is a kindness that stems from understanding. I am able to hear my body whisper before it forces me to lay down and listen to the opera of its screams.

Bloom is Ksh 500/=, to purchase it in Nairobi please contact Rosemary via 0731224223. To purchase in Mombasa please contact me via 0746622833 or yellowendoflower@gmail.com.

When you look at a rose from the top, it is difficult to see the thorns beneath the blossomed petals. Sometimes the exterior appearances make people doubt the pain, but just like the sting of the thorn is very real so is the invisible pain that has somehow been branded as normal.

Through the years I have learned to bloom despite the thorns.

Energy Forecasting With Endometriosis

There are days I have the energy to change the world and other days that I want to put the world on pause and sleep. The latter is especially when Aunty Flo is in town. I usually have no motivation to do anything. I just want to sleep, but life, oh life must go on.

Fatigue is like a leech that sucks the life out of you. Sometimes I think that I am draining more than just blood; my mental energy is usually at an all-time low, and the desire to do things that I normally would is at zero.

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One day in December I woke up running on reserves and on that day a simple thing like wearing earrings felt like so much work. A few years ago, this would have seemed so strange and out of character for me, now it is (almost) a non-issue. After I had children, I stopped wearing small earrings, to reduce the items that they could choke on, I miss how light and pretty they were. Now, when I do wear earrings, I wear big ones, that tend to make me feel like I am lifting weights using my earlobes. God forbid they get stuck on something, or better still, my Ky yanks them.

As I am more self-aware and seeing the pattern in my life, I am learning to plan ahead and forecast my energy. There are days that I have energy coursing through my veins and those are the days that I write books and put things in order, and there are other days that I have to access my reserves to try and make it through the day. Especially when Auntie Flo is in town, she has a way of depleting my energy even before it comes to the surface.

My energy graph would be high when I am not on my period or close to my period and (almost) non-existent when I am on my period. During those days I only do what is absolutely necessary, the funnel I use to decide is pretty small, so doing my hair and wearing earrings seem like too much work.

For these days I plan ahead to have help, especially with the girls, I sleep, oh, I sleep, this is my current symptom of Endometriosis, a wave of sleep that will not go until I enter bed for a couple of hours. I (try to) eat well, so as to keep my energy up and avoid constipation, Auntie Flo and constipation make for a horrible duo. I do my hair a few days before to avoid walking around looking like I came in to close contact with high voltage and wear simple outfits that do not need matching or ironing, long live dresses. I think about my meal plan in advance, otherwise, we will eat the same thing every day, because the energy is limited to surviving. Anything that needs order and analytical skills is avoided during this time.

I am grateful for a good support system, my husband and daughters are so understanding when it comes to these couple of days. I desire to increase my energy levels so that is a work in progress, but good planning is definately working in my favor.

 

 

 

 

Stories Wanted!

Never underestimate the power of a story. It has the power to transport, transform, reassure and encourage.

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This March,  I would like to share an Endo story every day to help raise awareness for Endometriosis.

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Let us show the world that you do not have to look a certain way to have Endo. That the beauty and fragrance of the rose do not take away the prick of the thorn, it still hurts.

If you would like to share your story please send me an email via yellowendoflower@gmail.com and I will be in touch.

Thanksies.

Endo Prayer: When I Feel Overwhelmed

There’s a dark valley that the Endo journey plummeted me into. In that space, I have struggled to keep hope alive, stay positive and pray.

I’m not where I used to be, but because I know no-one is immune to the darkness and the feelings and thoughts that come when in that place, I will be writing Endo-prayers, little prayers that you can whisper when you feel like an assortment of emotions.

Some days have been harder than others, but there in the darkness, I have seen a glimmer of light and hope. I know that even in the difficult moments, God is there.

Here is the first prayer:

Dear God,

I thank you because you formed me in my mama’s womb. There is no part of me that you do not know. You see all of my organs and see where the Endo cells have carved out a home.

I feel overwhelmed, and sometimes so helpless because I’m struggling to understand your plan in this place of pain. I desperately long to see Your face in this phase, but It’s hard to focus when my tears are all I see.

Please comfort me and ease the pain. Remind me of your love for me.

In Jesus name I pray and believe,

Amen

Blessings!

If you need to talk, or a sounding board, you can send me an email via yellowendoflower@gmail.com

7 Truths Every Endo-warrior Needs to Know

The Endo journey is colored with a lot of pain, uncertainty, darkness, medication and anxiety. Here are 7 truths that every Endo-warrior needs to know:

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1. It is not all in your head

Pain and discomfort are personal. There is no scale that it has to be measured by for it to be termed real. The manifestation of Endometriosis and it’s symptoms differs from person to person. You do not need any person, or physical depiction to validate your pain. Pain is your body’s way of asking for help, so it shouldn’t be ignored or covered up, but treated with the seriousness that it deserves.

2. You are not alone

One in ten women suffers from Endometriosis. Invisible diseases can be very difficult to live with, the truth is that many people may not understand, but that doesn’t mean that no one understands. There are communities of women who are willing to walk with you and stand with you. If you are in Kenya, you can plug in to Endometiosis Foundation of Kenya, Endosisters East Africa or contact me via Yellow Endo Flower. For the international community, please look for the Endo foundations or orgnaizations in your area.

3. You are strong

Holding on takes strength. When you are low on spoons and wonder how you will make it through the day, remember that your strength is intact. It is not measured by the things that you do or achieve; being takes strength, choosing to fight another day takes strength, crying takes strength, acknowledging your limitations takes strength. Oh, dear Endo warrior, you are strong, even when you feel like everything but it.

4. You are your greatest advocate

It is good to have a support system and good team of healthcare professionals. The truth is that they may let you down, and in the moment of despair you may feel defenseless and alone. Deep within you need to understand that you are your greatest advocate. No one can fight for you like you can. If something doesn’t feel right, stand up for yourself. Listen to your gut, the small voice that whispers the ‘buts’ and then speak up.

5. Information is power

There is a lot of information out there about Endometriosis, when you have the energy, read and research. Interact with others online and learn from their experiences. Read the fine print of pamphlets, then listen to how your body responds to medication.

Ask your health provider questions, and try to understand the procedures and treatment plans that s/he prescribes.

6. Your voice matters

When you are ready to share your story, please do, because your voice makes a difference. There are so many women who have no idea that Endometriosis exists, so many women who are suffering in silence.

If we all speak up we will cause a revolution, and many women will be able to get the proper diagnosis in less time and quality health care.

You can read stories of Kenyan Endo warriors here. If you would like to share your story please drop me a line via yellowendoflower@gmail.com

7. You are a star

Deep within you, there is a light that no amount of darkness can dim. Even the depths of Endometriosis and the darkness that it brings cannot hold you back. Take it a day at a time and try to see the silver lining on the grey clouds.

Shine. Dazzle. Be.