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.

 

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#31 Days of Endo ~ Nurah Palesa

Happy new month everybody!

March is here!!

To start us off in this series, I would like to introduce you to Nurah Palesa.

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Queen  Nurah is an endo warrior based in Kenya, she shared her story with me for the first time in 2017.

 

I am Queen Nurah, and at the age of 25 I have lived with Endometriosis for 15 years now. I run on happiness. There is no one thing that makes me happy, a combination of the things that pull my heart strings is how I live. As for my profession, let’s just say that I am a Storyteller and Poet.

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Where it all begun

Before I turned 10, the year that pain became the filter to which I would see life, I was eagerly awaiting my periods. I looked forward to it like a boy would await his ceremonial rites of passage. I wanted to see the drops of blood on my underwear and have a crazy happy dance celebrating my new life as a woman.

 

The pain began immediately I started my periods. I was sitting in the back of the class, talking as usual and ignoring what the teacher was writing on the board. Then my insides began attacking me. It felt like someone had run a knife across my abdomen over and over again. I shakily put up my hand and asked if I could go to the bathroom.

 

When I got into the cubicle, something told me to check my underwear and hoorah I had blood. But I couldn’t do the crazy happy dance, not with the pain that I was feeling.

 

I remember going to one of the “nice” female teachers and telling her I got my period and that I was in intense pain. She was nice, she showed me how to put a pad on and for the pain she said that it was normal and hot water would help. “Normal? Are you crazy, I feel like I’m dying!” I thought to myself as I gave her a look that showed I thought she was crazy.

 

Maybe two hours later, I don’t exactly remember, my mother was called because now I was wailing and “causing a scene”. Hehehe, causing a scene. At the end of the day my mom gave me Syndol. Yep, Syndol. That confirmed my suspicion that the pain I had was not normal and for the next 7 days I suffered.

 

Managing the pain

For 13 years I was subjected to excruciating pain before my periods, during my periods and 3 days after my periods. In total I was in pain 15 days out of the month.

I ended up having a cocktail of painkillers in my bags. Here is the list with what I started to what I take now:

  • Syndol (4-6 pills in an hour/day)
  • Betapyn (5-6)
  • Postan (10)
  • Brufen (10)
  • Buscopan (10-12)
  • Buscopan plus (it would land in my stomach and I would throw up immediately)
  • iBoprufen (40 mg 6, 80mg 7-8)
  • Vykadin (6)
  • And now I’m on tramadol 100mg and when the pain gets really bad I go for the shot.

And while I was on these pain meds I sometimes found that mixing them would help. And when I say help, I mean level the pain to a degree that I could function and not snap at people.

 

The pain haze of life is amazing. It changes how you look at everything and how you react. Physical pain makes life 300 times worse. Well for me. Someone else could be different. I had the worst mood swings, had a short fuse and basically I would just want to cry and be alone most of the time. I am generally a nice, gentle happy Queen, but you don’t want to make me mad when I am in pain.

 

Oh wait, did I forgot to mention that I would get high off the pain meds, lol aaaand that I was a heavy alcohol drinker. For 7 good years. The combination of alcohol and a cocktail of pain meds made the pain bearable.

 

I remember when I joined uni and my girlfriends would watch me pack my clutch bag with tampons and meds (3 strips of 10 so basically 30 pills) and they would ask if I was ok. Little did they know that I would have gone through 2 of the strips by midnight.

 

I would literally get high just to escape the pain.

 

When I was 22, fresh out of rehab (because others thought that alcohol was the problem) the pain kicked up a notch.

 

Finally, I got a diagnosis

 

Lower back pain and shoulder pain had kicked in, and I needed to know that there was a name for what I was going through. I went to see a gynaecologist and he diagnosed me with Endometriosis. I thought that finally I can get rid of the pain for good now that it’s an actual disease.

 

I went online and decided to learn all I could about my condition. That’s the type of person I am, I read and research on topics that are of interest to me. So I did what I do best; gather intel.

 

I found out that foods (which I had always known, I’m very strict with what I eat) contributed to the pain levels and there was a diet I could start. Eh….that diet did not work. In fact I ended up increasing my pain and losing even more weight.As for the endo diet, which is vegetarian I really tried. My body just didn’t accept it. And recently I discovered that diets don’t work for everyone, our blood types play a big role in the foods we need and as an O+ I need meat. I’m sticking to white meat.

 

So again I run around for another year looking for a solution and I found one. Or so I thought. I went through a Laparoscopy where The Gynaecologist lasered the extra endometrium tissue that covered my ovaries and fallopian tubes and he put a Mirena Coil so that my fertility wouldn’t be compromised. I had stage 4 of Endo at this point.

 

Relief at last

 

For the first time in 13 years I had no pain.

 

I loved my life; a zeal for it (which I still have) was born. You know when someone tells you to live life to the fullest and do what you want to do and wave your hands in the air like you don’t care?? Lol, yeah I did that for 3 good months before the pain came back.

 

Back to reality

 

As I write this I have the worst headache ever and my back and shoulders have decided to kick into level 400. The last two days have been brutal because I am ovulating and I can feel the damn egg travelling.

 

I could change my diet again or find some radical something that will help “ease or get rid of” the pain, maybe even look at the spiritual aspects of it, but my reality is that I am meant to have this pain. I’m just supposed to rise above it and live life to the fullest and that’s not an easy task.

 

Yoga helps me. And meditation. And maybe some teas here and there. Lemon, ginger and honey is amazing. I generally try and avoid junk and fast foods and sodas. I’ve been on a general healthy diet from the word go. My mom has always been conscious about food.

 

Endo and Family

My family is very open with each other; my mom and sister also have endo and my brother was told early on about our periods. The extended family is a whole different story. I like avoiding them as they disturb my positive energy fields.

 

I would love a whole football team of children lol.

 

Endo is genetic, my mom and I traced it back to her grandmother (her dads mom) so for me it doesn’t really matter if I have a daughter or son, I’m going to have to tell them asap about endo. And what they can do from the word go.

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To my queens and princesses I agree it is so not fair that we endure this pain.

Search for your solutions and remedies. Don’t let anyone stop you. 

However do not forget to live life to the fullest. Do what makes you happy; love yourself and play in the rain.

Oh and please be kind to your sister queen / princess. Seriously, we women can be brutal to each other and it’s about time we stopped.

You can check out Nurah’s online home here.

Follow her on Twitter and Instagram.

Thank you Nurah for sharing your story with us. Keep fighting, shining and dazzling.

 

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

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 Overflow

During the period talk in primary school, one key detail was forgotten: ‘What to do when you have heavy periods.’ Nobody prepared me for the overflow that would come with my periods. The first time I soiled my clothes, I thought I was dying. It seems silly, but then, it was a crisis.

I was a happy camper as long as I was sitting, when I stood up, gravity would come in to full effect and the rivers of Babylon would flow. I felt completely powerless, there was nothing I could do to stop it. It felt like my womb had turned into a waterfall for a few minutes.

My primary school dress was a mixture of white and grey, so a red stain stood out like a blob of jam on toast. It was not supposed to be there. Unfortunately, I didn’t know that you are not supposed to use hot water to remove a blood stain. Sigh. I learned the hard way.

How to deal with the overflow

For months, I ended up soiling my sheets, I eventually learned how to cope with the heavy periods. Here are some of my tips to handle the overflow.

1. Save your pretty panties

I used to wonder why anyone would want to wear granny panties during their periods. Especially since they are everything but sexy. Then I had a heavy period that painted my panty red like a toddler with a paintbrush. On that day, no one needed to tell me to have separate panties for shark week.

When you are struggling with bloating, a bikini cut may not be the best option. Choose something with a some allowance to grow. Comfort is key, your uterus is already having a battle on it’s own.

2. Layer!

Back in the day, I used to layer my pads. When I first saw a pad with loops, I was baffled. I kept asking myself, ‘Who wears such things? How is it worn?’. Fast forward to the first day post delivery, and I was so relieved that I could elongate my pad. Their adhesive is horrible but they make up for it with absorption.

Maternity pads are great for heavy flow. They cost a lot more, but they are very effective. We need more affordable pads like these for women with heavy flow.

Putting an old towel beneath your bum helps to protect your bed sheets. Set an alarm to change your pad in the middle of the night so that you can avoid the accidents.

 

3. Cold water

When it comes to cleaning blood stained clothes, refrain from soaking blood stained garments in hot water. It will cause the stain to set in to the fabric. Instead, use cold water. You can soak the clothes in cold water for 30 minutes then . You can use either salt, bicarbonate of soda, vinegar, hydrogen peroxide or ammonia to make a paste on the stain and rub it.

4. Stock up

It is easy to become iron deficient if you have heavy periods. Eat more iron rich foods like beans, leafy greens, dark chocolate, peas, meat and liver, all through your cycle.

If you feel foggy, tired and have to change your pad or tampon every hour, please see a doctor.

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 Diary Of A Kenyan Endo Warrior: The Game-Changer: The Day I Couldn’t Walk Anymore

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Dear Diary,

By the time I was 17 years old, I was pretty much used to painful and dramatic periods. I had somewhat accepted it as my lot. What else could I do? In those days I seldom heard of anyone going to hospital for painful periods. We resulted to be being amateur pharmacists. In retrospect that was SHEER. FOLLY!

All was well-ish until the day pain paralyzed me in the heart of Nairobi city while on Moi Avenue near a stall selling jewelry. That was scary. My body was overcome by such a sharp pain on the left side of my abdomen. I couldn’t walk and could hardly breathe. I felt hot, a warmth covered my body. I was scared yet I had to put on my brave face on, because the city center is not a place to show your fear when you can’t move.

I inched towards the jewelry stall and sat. God bless the woman who helped me with a seat. She tried to ask me what was going on but I was as clueless as she was. My abdomen was hot and I was balancing tears. Minutes felt like hours as I waited for the wave to pass. When it finally did, I got a matatu and went to school. By this time I was already late for my class. I walked as fast as I could to the school clinic and met the ever patient Dr. Jack. He believed me, he didn’t look at me like I was crazy.

He gave me a place to rest and then treated me for a bad Urinary Tract Infection. After a course of antibiotics, painkillers and urine alkalizer, the pain subsided; only for a few days.

Till next time,

Blessings,

Ess

The Diary of A Kenyan Endo Warrior: I. Am. Tired!

 

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Dear Diary,

I doubt that it’s normal to wake up tired, spend the whole day tired and sleep tired. For so many years this was my normal. My first response to the question ‘how are you?’ was Tired. But there’s only so many times that you can answer tired, until the other person gets, well, tired, of hearing your response. That was the story of my life.

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What I was more tired of, was being sick and in pain. Being sick is a draining process. It literally sucks out the life out of you, and the desire to live. When you have been in pain day after day, you want to cry. I vividly remember crying to God, praying that He would take the pain away. I was fed up of watching my life slip between my fingers. How badly I wanted to live life fully, but my body wouldn’t let me.

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It was more than just physical exhaustion; more like an all round exhaustion. When I found The Spoon Theory  by Christine Miserandino I was besides myself. Finally, someone had put into words what I had been struggling to say for a long time. Her description of Spoonies perfectly described me. “Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short.”

I was tired but I realized that I needed more grace,strength and spoons.

To the Spoonie struggling to express her exhaustion, you are not alone.

Blessings,

Ess