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.

 

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Endo Prayers: Missing Out On Opportunities

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Dear Lord,

My heart is heavy, burdened by the weight of all the opportunities that I have had to say ‘No’ to because of the pain and discomfort. Many times I am willing to take up great projects but my energy levels fail me. The pain overwhelms me. I fail myself.

Please help to be patient with myself, to do the things that I can in this season, and to find the silver lining in the midst of the storm. Grant me your contentment, joy, and peace to get through this.

In your time, please give me other opportunities to be there for those that I love, to do the things that I love and to be the person that I would have loved to be.

In Jesus name, I pray and believe,

Amen

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

Reclaiming What Endo Stole From Me

Happy New Year Everybody!

I have this spring in my step after getting some much-needed rest and relaxation.

A few days before Christmas, I met up with a few Endo warriors and we talked, laughed, and loved being in a space where we could identify with each other. I have many thoughts on Endo, but the one that struck me during this meet is that Endo is  THIEF.

Endo is the kind of person who comes into your house and turns it upside down, a person who doesn’t respect boundaries and wants to leave a mark on every part of your life. The one who drives you up the wall and then has the nerve to ask what the matter is. The biggest naysayer, the one who makes you doubt yourself, your abilities and your dreams.  Endo is like a rat that bites your toe as it blows, then one day it turns into a vicious animal and eats up your whole foot. Endo is a sneaky thief that deserves to be lynched in public, in other words, we need a cure.

“What has Endo stolen from you?”I asked the ladies.

When it was my turn to speak, I shuddered at the thought. Over ten years ago, I loved to hike, in fact, the revolutionary period where Endo reared its ugly head was on Mount Kenya. I had this dream to climb Mount Kilimanjaro and participate in other exciting adventures. These dreams and desires died a natural death, endo has a way of suffocating the life out of dreams. When flare-ups, chronic fatigue, and emergency visits are the things that you think about often, you forget that your heart can beat for anything else other than survival.

 

Endo stole a part of my life and I even forgot about it. After the meeting, I was determined to reclaim what Endo stole from me. Over Christmas, I had a chance to walk along Lake Elementaita, it was beautiful and humbling. It was my first walk clad in sneakers in 11 years. I didn’t feel the weight of my daughter on my back, I felt liberated and restored. If my sneakers could talk, they would tell a tale, one filled with adventure.

 

I’m writing down a list of the things that Endo stole from me and reclaiming them one by one.

Here’s to rediscovering ourselves post-endo, pursuing adventure and dreams coming true in 2018.

Happy New Year!

 

The Path To Adoption In Kenya

At the heart of adoption is a conviction, one that sets your feet in motion. Good intentions are not enough to navigate this road, but with good directions and signage you will make it to your destination safely.

Grace Wanunda of Adoption is Beautiful – Kenya, shared a step-by-step guide to help anyone who wants to adopt in Kenya.

The Adoption Agency

  • Identify an authorized Adoption Agency to work with.
  • Visit the Agency for initial interview. They will ask you why you want to adopt, at this point feel free to ask as many questions as you like about all the aspects of adoption e.g costs, what it entails, procedure, home study, placement, foster and the legal process.
  • You will be required to fill forms, attache relevant documents as requested by Agency and return within the shortest time possible.
  • A social worker will visit your home and file a report if the environment is conducive for the child.
  • You pay the facilitation fee to the Agency.
  • Attend counseling as directed by the Agency.
  • Your documents are presented to the Case Committee.
  • You are approved or deferred, your Agency will advise you in writing.
  • Matching and placement is done by your Agency

The Foster Period

  • The duration of the first 3 months that you  have the baby at home is known as the Foster Period. During this time you visit the Agency twice and give a report on how you are bonding with the baby.  Feel free to raise anything that you would want the social worker to know concerning the baby. The social worker will visit you again to see how the baby is doing at home.  He/she will file a report on the same.
  • If you’ve bonded well with the baby during the 3 months you can start the legal process of Adoption.

The Legal Process (Adoption)

  • You can represent yourself or hire a lawyer if you are not conversant with the legal process.
  • The first appearance is appointment of Guardian Ad Litem – This has to be a parent, they can either be your friend, relative or a social worker.  This person should be very familiar with your journey as she/he is expected to write a report and file with the court on why they feel you should be allowed to adopt the baby.
  • The court will ask the Children’s Department officer in writing to visit you, see how you have bonded with child, write a report and file it in court within a period of time. You are expected to follow them up and make sure that they make the visit within the expected time.
  • The Legal Guardian should be a couple married by law, they are expected to swear before the court that should you die before the child is 18 years, they will stand in for you and take care of the child until the child attains maturity.
  • The Agency that declared the child free for adoption is expected to appear before the court and explain why they declared the child free for adoption and why they think its in the best interest of the child for you to adopt them.
  • The Judge will study all the documents presented and give consent for you to be the legal parent of the child. The parental rights of the biological parents are terminated thereof.
  • The Judge will issue you with a court order and a copy of the judgment.
  • Your lawyer will apply for the adoption certificate, where the child is entered into Adopted Persons Register.
  • You can apply for the birth certificate in your name.

The requirements for adopting a baby:

You must be

  • A Kenya citizen
  • 25 years and above
  • 21 years older than the child you want to adopt
  • Have a home, rented or owner occupier
  • Of sound mind
  • Free from criminal records

Also note that:

  • A single female applicant can only adopt a girl, unless under special circumstances and vice versa.
  • Married couples must be married for three years and above, they can adopt any sex. They need to work as a team.
  • Your medical report – HIV and Urine tests are mandatory (People living with HIV can adopt)
  • Financial proof that you can take care of a child, e.g salary slip/bank statement/business ownership etc

To ease the experience, please avoid,

  • Soliciting a child from anyone other than legal adoption agencies. This includes relatives.
  • Offering money to buy a child.
  • Adopting without a ‘Free-to-adopt’ declaration by a legal or authorized adoption agency.
  • Working with a lawyer who is not well acquainted with the adoption process as this may cause unnecessary delays.

Ensure that you get written parental consent from the parent or relative giving out their child for adoption.

If you feel for any reason that you have not bonded well with the child, please feel free to talk to your agency or social worker.

You are free to do a medical test on the child you are adopting, before you commit to take the child.

When choosing a legal guardian, choose someone you can trust, they are your child’s second parents.

It’s important to note that not everyone who supports you right now is for your child. Write a will and include your child in it prior to your demise, this will reduce the chances of him/her suffering in the hands of relatives.

Every Adoptee has a right to know who they were before adoption, feel free to walk them through the journey, if you don’t tell them, someone will do and they might not tell them in the right way. It can lead to rebellion!

If you would like someone to hold your hand as you walk this journey, please give Grace a call via 254-724-841-245.

 

Yellow Flower Network

Invisible illness can be lonely, confusing and consuming. There are many times you doubt yourself and the manifestation of the pain. Leaving your bed on somedays can feel like doing calculus, it has to be a calculated move. Some days the method makes sense and on other days, you don’t even know where to start.

The idea to start the Yellow Flower Network was birthed a few weeks ago when I realized that I want to support women in Kenya and give them the personal touch, but I am not physically able to.

My inbox is a buzz with women looking for support, women who have just had surgery, women who would like to meet other women to let them know that they are not going crazy, and that the pain is not all in their heads.

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My desire is that no woman will walk alone, that every Endo-warrior will know that they are not alone. That the thing that tried to break her, will reveal a reservoir of strength and it will enable her to be encourage others.

If you are interested in supporting other Endo warriors in Kenya by texting, calling or visiting them when they are in need (in hospital, post surgery), please send me an email via yellowendoflower@gmail.com and I will be in touch.

To start us off, one of our Endo sisters, Jahmby, needs our help. Let us support her in any way that we can.

Jahmby Koikai

*endometriosis

 

The Kenyan Endo Story : Faith Muraya

Endometriosis is an invisible disease. Just because you don’t see it doesn’t mean it doesn’t exist. Pain has been normalized and so has the use of painkillers. Faith Muraya gives us a glimpse into her life as an Endo warrior. She shares with us her journey of pain, and the lifestyle changes that she has had to make.

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The journey of Periods and womanhood is the norm for women. As with most girls, my periods begun in high school. To be more specific, mine begun on a fantastic holiday in Naivasha where I now had to explain to all why swimming was not an option.

 

I am now a 25-year-old daughter, sister, cousin, niece and, for three months now, a proud wife.

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From the information I gathered, my endometriosis began in high school when I was around 17. The periods became more intense. I would narrate the pain to my mum who would tell me it is okay to 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 birth control pills. The relief was instant. The pain decreased. At such a tender age and not knowing the side effects of pills, I began to experience anxiety, depression and heart palpitations. I was a newly initiated health freak and I got to reading. This method was not going to work. I stopped and so did my menstrual cycle. I uncovered that I loved to read about health and wellness. I become 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 9 years and counting. The diet change made a small difference on 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, 18 and fatigued. I was still not aware of endometriosis. I continuous blamed myself for not being good enough. That I was lazy. So I exercised 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 had 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 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 is 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, my ovarian cysts ruptured, at the time I had no idea. 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 to wait for my appointment.

 

In the morning, my boyfriend insisted on accompanying me. When I got to the clinic, the nurse took my temperature and blood pressure asked me how and felt and 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 my cyst had ruptured and I had internal bleeding. He drafted a letter for surgery the same day and off I went. Emergency laparoscopy surgery! 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 almost coming 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 stabilizing my hormones and diminishing the pain significantly. I take it for six months and it keeps me going through the year. This does not work alone. My diet has changed through the years, coffee or anything with high caffeine causes the pain to return instantly. I rarely eat processed food, no sugar or junk food. This year I’m on the quest to have a gluten free diet, needless to say, I’m struggling.

 

Last month, 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 have chronic backache, pelvic pain, fatigue, fainting and hair fall. For one year, I have been deemed ‘overwhelmed’ at work. Embarrassed and ashamed, to share the real story, I said that this year, It’s about accepting the situation and acting to change it.

 

 

The challenges of endometriosis mean that as an outgoing lady, I’m easily reduced to a crying helplessness due to the pain, fatigue, confusion, frustration. Chronic fatigue can make a professional career difficult. Where do I get the strength to get to work? to be productive? The constant explaining to friends and family. And of course those who doubt you.

 

Now that I’m married, I have been advised by gynaecologists to get a baby as soon as possible or I may struggle in future. My husband and I are left with the decision to wait or believe in God. He is my Warrior.

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As I type this article, I have spent the day at Aga Khan Hospital. Something has changed. I begin chapter 2. I urge all my sisters to be you, research and the most crucial action support each other.

You can follow Faith on Instagram and connect with her on Facebook.

Thank you so much, Faith, for sharing your journey with us.

We pray that you will have many pain free days ahead and babies to fill your quiver, all in God’s time. Grace upon grace unto you.

Blessings,

Ess

The Kenyan Endo Story: Rachel Shivachi – Part 3

Recovery was not a walk in the park for Rachel. Post surgery complications made her life rather difficult and her family and friends decided to take her back to India again.

She shares her experience below:

While we were in India, it was Zulekha’s birthday and we had a little celebration at the apartment.

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When I was well enough to travel, we came back to Kenya. I wasn’t getting any better and I had to be readmitted at Nairobi Hospital. I was in adult diapers due to secondary fistula and I kept getting high fevers due to the infection from the kidney stents.

 

I was on antibiotics for more than 10 weeks before friends and family decided that I go back to India for the removal of the stents and catheter. Upon going back to India I was found to have severe jaundice & infection from the stents which the body was rejecting.

 

Below is an excerpt that I wrote after my second visit to India.

25th November 2015

 

To my family and friends who made it possible for me to see this day.

Psalms 105 :1-2

Psalms 115 : 12 -15

It’s great to be back home where everything is so familiar, friends and family, food and mostly language isn’t a barrier because you are spoilt for choice with at least Swahili or English to choose from.

 

We thank God for his mercies last forever and ever. He has remained faithful and if you seek him he shall not let you down. Numbers 23:19

 

We got back from India on 18th November. The two procedures were successful: removal of the DJ Stent and Ureterotomy.

 

I could barely walk after 12 hours of travel, but God’s favor was with us all the way, I managed the trip with no incidences despite the state of my health.  The chills, fevers and the pains were somewhat controlled. All I kept reciting was Psalms 23.

 

Upon our arrival at Columbia Asia Hospital, within five minutes, we were whisked into the Chief Urologist clinic and I spared no details of my journey of the past 10 weeks post surgery in Kenya. The doctors were very concerned and a myriad of tests were carried out, CT scan, usual blood and urine tests including Culture Tests (read what culture tests are for and their importance). I was admitted the very next day after the results were availed. I was also found to have severe jaundice because my liver was straining from the medication.

 

The initial procedure to be carried out was just removal of the stents, cystocopy, however, this changed.  Dr. Manohar, the Chief Urologist, later explained that I had suffered infection (Klebsiella Pneumoniae) from the DJ STENTS, which is a normal occurrence  sometimes with such procedures.  This he mentioned should have been picked during my admission in Nairobi hospital in by having culture tests done and immediately the stents should have been removed.  Additionally, the removal of the Catheter was premature causing my urethra, bladder distress.

 

I had to be on IV antibiotics for 12 days to clear the infection even after the procedures.  Amazingly, I was discharged from hospital after two days, and five days later, I could comfortably walk, sit, eat; I was recuperating well. Daily visits to the clinic were for IV injections at the ER and simultaneously check ups on my recovery. Jeremiah 30 :17

Doctors treat But God heals .

God is faithful as I could can now walk, sit and pass urine without moaning, screaming and crying because of excruciating pain. I could now sleep on my tummy or either side and sleep through the night without chills and fevers and endless trips to the bathroom notwithstanding the spasms from the DJ Stents. I could now control my bladder and the trip to the bathroom didn’t have to be an emergency. I could now eat without throwing up after every mouthful. Psalms 126:1-6

 

The liver infection was taken care of by the supplements to rejuvenate it. I chose not to worry about it.

 

I have now discarded the use of Adult Diapers because my bladder is now back to normal.

 

The only medication I came back with were supplements.

 

One more thing, removal of the ovaries reduces the aggression of endometriosis as the disease thrives on hormones. However this hastens menopausal symptoms such as hot flushes, mood swings and also low libido. These symptoms shouldn’t worry you, again diet and exercise will carry you through.  research on the same. In extreme symptoms, there are supplements too that can help. Please note, not HRT (hormonal therapy) as these may predispose one to breast cancer. Cranberry tablets should be considered. Again, read and seek advise where necessary. So, when you see me on a very cold morning flapping a few pages of the newspaper seeking cold air against my face, just open the windows for me 😂😂😂, it’s what my friends call menostop. I promise to be happy always. Proverbs 15:30.

 

My medical follow up is every three months for urine culture tests, liver function test, CT scans to ensure the kidneys, ureters and liver are well healed.

 

I have chosen to give details some of it not so pleasing (gory details) for those out there with terminal illness or going through a similar condition as mine. I have learnt the following in the last few months:

 

  • Support systems are important, be it family or friends. NO ONE can walk this kind of journey alone, you will easily give up and die. Treat people well, care for them and when you need them they will be there.

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  • He’s a forgiving God and always faithful no matter who you are, don’t let the devil cheat you that you are only going to God during distress and you shy off renewing that relationship with him. 2 Corinthians 5:17

 

 

  • If your body doesn’t feel right, see a doctor, ask questions and always seek a second opinion. Don’t ignore health issues, I have had friends, family who have lost their lives when they could have lived if the problem was nipped at the beginning.

 

Endometriosis has no cure but you can continue to have quality life with lifestyle changes, diet and exercise. Basically lots of fresh vegetables and fruits, have three colored fruits everyday,  additionally eggs, fish, nuts like ground nuts and almonds.  Cereals such as beans, green grams are recommended.  Meditation is also key, yoga too.

 

Once again, my family and I are so so grateful for standing and walking with us during this difficult period. We were and are still overwhelmed by your support both financially and spiritually.  Your prayers were not in vain.

 

God is good all the time and that is his nature!

God bless you abundantly! Numbers 6:24 -26

 

❤ Rachel

 

How are you doing now?

I am well and do not have any pain at all however secondary menopause has kicked in and the effects can really put one down, the hot flashes, mood swings, depression, low libido and lubrication, tiredness and lack of energy. Though supplements and gels really do help. I have gone through the anger -denial -acceptance process however I still cannot get myself around expectant mothers and new born babies, I get very emotional.

 

My children are all grown up now: 10, 12 and 20 and have been very supportive through the years. They have been through a lot as well since my marriage was equally on the rocks but we have since re-united.

 

Lifestyle changes had to happen, no wheat though I have cheat days but rarely, this was advise from the doctors. I also do lots of vegetables and fruits. No soda at all, fresh juice mostly and no junk. A little exercise and I have to maintain a certain weight. Oh and an egg every day.

 

They say Yoga is a very good relaxant and if practiced will help with the menopausal effects

 

But most of all I thank God for the quality of life I lead right now.

 

Rachel’s story has brought me to tears. She has reminded me that God is good, and that is His nature. Thank you for being vulnerable with us and letting us into the most painful and private times of your journey with Endometriosis.

Blessings,

Ess

The Kenyan Endo Story: Rachel Shivachi (Part 1)

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An Endo Warrior is a fierce and brave woman, one who fights many battles that don’t meet the eye.

Over the next couple of days I will be sharing the story of Rachel Shivachi. A woman whose story has moved me to tears. She has known pain, hope, grace and strength.

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I am a mother of three young adults, a wife, sister and a friend to many. I have worked in the Telco industry for more than 15 years in the sales department, high pressure job but I enjoy it. I turned 42 years last month and I believe in Live Life, Love Life.

Here goes my journey with Endometriosis and Adenomyosis.

if you have been diagnosed with the above I can say that there are going to be long days ahead however with proper management, care & support this need not stop you from enjoying life, ladies, research and read and always seek second opinions to be able to make the right decisions. I am grateful that we now have a forum that helps demystify this disease as well as providing the much needed support.

Very little is known about these two diseases and so when in and out of hospital and people ask what you are suffering from, almost immediately one goes to Google to understand this long worded condition.

I will still not go into the details of what the disease is (this is to encourage but you to research and read about it) but I will take you through my experience from an early age.

My menses were a nightmare from an early age of 16, I would not attend school or college including work a few days before and when they came.  Instead I would spend my nights on the cold floor wailing and screaming because then it was what I knew best.

My father having given up on Buscopan and Panadol introduced me to his painkillers – Ponstan. I remember in form 2, dad was so frustrated that he traveled to Kakamega to get miti dawa coz he couldn’t take the wailing anymore. At this time we discovered Dr Nyamu and he put me on contraceptives at the age of 16 and they worked for at least 6 months. So yes there you go, the disease thrives on certain hormones. But then the contraceptives had side effects that we had to discontinue. Before my form four end of year exams, I had to get medication to hold off the periods so I don’t have the pains. This meant that we had to learn pain management.

I don’t remember the last time I traveled without a cocktail of meds in my bag. I’m the first aid box in my own rights. Remember the side effects of long term use of some of these meds. My stomach lining is eroded to mention but a few.

I’m lucky and blessed to have had children so am told but my pregnancies have always been difficult and through caesarian section. I later learnt that CS also predisposed me to the adenomyosis.

I have had 8 Surgeries in total, which started in 2005 with the accidental removal of my appendix whilst it was an orange sized cyst, and, a mass in the uterus. I have had to learn medical terms such as laparoscopy and laparotomy.

So in between the years it was ovarian cysts and abdominal mass that would be found sitting in my uterus and they would be removed through surgery.

The feeling of being pregnant all the time, endless abdominal pains, unplanned menses, long periods of menses, you name it, the disease can drive you insane. Not to mention it limits your social life as you never know when the pains will strike. Nairobi hospital ER became my go to place .

I remember the gynae recommending a one year treatment in 2012 of a hormonal drug called Lupride,  a jab to your abdomen on a monthly basis.  The treatment was expensive, about 10,000/= a jab, and although it provided relief the treatment was a nightmare. I almost lost all my family, friends to name but a few, Leah Murimi, Zulekha Osman, Juliet Kanana, Mbathi Mutuota Penny Waweru; due to the side effects, hot flushes, extreme mood swings et al, but they held my hand.  Immediately we stopped the treatment, endo came back, quite aggressively and I slid into the next phase.

Have you ever gone to the Gynae, he feels your tummy and tells you, you are pregnant and you argue until he eventually sends you for a pregnancy blood test & scan and instead it’s a mass in your uterus and not a fetus? That was the norm!

I will never forget specifically December 2013, I was in so much pain I could not sleep, sit, eat or think because of pain. The abdominal pains, the backache was extreme and I even developed diarrhea. I was over-dosing painkillers just so that another day could come whilst I was avoiding going to hospital, I had the lousiest Christmas. After Christmas and upon arriving Nairobi I was rushed to Nairobi Hospital where my gynae advised for Laparoscopy which would give me relief. Unfortunately, three months later the pain was back and worse than before and eventually in May 2014 when I couldn’t take the abdominal pain anymore I opted for a partial hysterectomy. This the doctor assured me would give me relief for several years.

This was a BIG mistake as I learned later since my ovaries were left intact and my condition was aggressive so it was in vain.

By April 2015 the abdominal pains were back and this time around I developed recurrent UTIs (Urinary Tract Infections) – every other week. Jan Mwenjwa became my office nurse for these emergencies.  Thanks to her I don’t know how I would have coped.  I always looked pregnant, was always bloated and I could only sleep on my right because I had this mass that would pull if I dared sleep otherwise. I had to wear a pad every other time just in case. I always had brownish discharge which was sometimes smelly.

I was very afraid!

In August 2015 friends and family came together and we resolved to seek specialized treatment in India.  We had a harambee and thanks to my wonderful Orange colleagues & family and in August 17th I left for India with Zulekha one of my two best friends that I have.

I’ll share part two of her story tomorrow.

If you’d like to get in touch with her, you can reach her on Facebook.

Blessings,

Ess