Let’s Talk About Periods And Endo

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Join me for a Twitter Chat with an amazing panel hosted by @MtotoNews today from 3.00pm – 5.00pm EAT to help break the silence and build awareness about the fundamental role that good menstrual hygiene management (MHM) plays in enabling girls to reach their full potential. The discussion shall also focus on highlighting solutions that address these challenges.

This year’s theme for Menstrual Hygiene Day is: Education.

“l’m also excited that Endometriosis is part of this conversation and we shall elaborate further on the how a normal period should feel and look, Endometriosis and the warning signs to look out for. Every girl needs to learn to listen to her body when it whispers, so that she won’t be bedridden when it screams.”

#MHM
#menstrualhygieneday #menstrualhygiene #periods #pain #endthesilence #endometriosis #endometriosisawareness
#yellowendoflower #girlchild #hygiene

 

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The Workout Hiatus Has Come To An End

I’m determined to get my sexy back. ‘Where had she gone to?’ you ask, well, I seem to have lost her somewhere between being pregnant and lactating. I’ve been pregnant twice in two years, my body has ballooned, carried life and found a new form. The thing that I have learned about my body is that it’ll never quite be the same. But that’s not an excuse to let it go.

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The gym is not really for me. The last time I seriously decided to work out I ended up in an operating theater having my second laparoscopy to remove endometriosis adhesion and a burst appendix. After that surgery, I took the doctor’s advice seriously. For a long time, I made ‘take it easy’ a way of life, but I miss being fit. Climbing Mt Kilimanjaro and taking part in a triathlon are still on my bucket list.

After I had my first born, I was the heaviest I’ve ever been. I woke up one day and decided things had to change. I stopped taking sugar, dairy and reduced my wheat consumption. I worked out at home and I was able to lose the Lupride weight that I had been carrying around for years. Tiffany Rothe, God bless her, really helped me work out and I loved the results.

After the second baby, I’ve taken longer to start working out. There was so much going on and I wanted to make sure that the wound has healed. But I’m back! Yesterday was my first day and I felt great. I’m doing low impact workouts that won’t leave me feeling inflamed. I had a spring in my step yesterday, I was feeling on top of the world. Today, on the other hand, I’m feeling muscles that I didn’t know existed. Lactic acid is at work. But I know that my body will be grateful, well, eventually.

Before you begin a regime please consult your doctor. Go easy on your body and choose a workout that suits your needs. What works for one woman may not work for you. Listen to your body and enjoy your new regime.

Blessings,

Ess

Kenya: Endometriosis Care & Support

There is a growing community of Endo warriors in Kenya. No endo sister should walk alone.

Thank you so much Lisa of bloominuterus.com for compiling this information.

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I’ve had the pleasure of talking with a new EndoSister who lives in Kenya.  She had all kinds of questions and I would like to find her some information about Endometriosis care in or around Kenya, as well as connect her with any local EndoSisters for support.  So let the research begin!

For those of you who may not know, Kenya is a small country (about twice the size of the state of Nevada) and is located in East Africa, bordering the India Ocean.  Approximately 47 million people live in Kenya.

There are four Kenyan hospitals that came up while searching for Endometriosis care.  If you don’t already have a gynecologist, please locate one in your area or consider seeing one at these facilities:

Kenyatta National Hospital, Nairobi

Ladnan Hospital, Nairobi

The Karen Hospital, Nairobi

The Nairobi Hospital, Nairobi

The International Centre for Minimal Access Surgery is…

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The Diary Kenyan Endo Warrior: My Journey With Hormonal Acne

I’ve struggled with hormonal acne for well over ten years. As a teen it was nerve wrecking. One day I woke up with pimples on my face that seemed more like mountains, and they just wouldn’t go back to where they came from. I was told that apparently acne during puberty runs in the family and that it would disappear once puberty was over. I waited with baited breath, but it never disappeared. I’m well in to my twenties and I still struggle with acne.

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Seeing a dermatologist didn’t quite help, the medication set me up for greater disappointment. I tried topical creams, oral medication, different facial cleansers, toners and moisturizers. The only time that my skin has been smooth, I have been on a form of hormonal therapy. Smooth skin and manageable periods were about the only positive effects of the hormones on my body. Despite the acne, I am much happier off the hormones.

The acne intensified when I had recurring ovarian cysts. But not even that prepared me for the horror that was acne during my first pregnancy. Oh my word! I had pimples on my face, chest, back and arms. It was horrible. Horrible! They weren’t just pimples, they were cystic bumps, that would scar if you tried to burst them. Yes, I know that shouldn’t burst a pimple, but man, sometimes all the things that you should do don’t seem to work, so you result to throwing your hands up in the air and just bursting them. Because they are yellow, shiny and ripe (read: gross) and you can’t wish them away. The number of prayers that I have said for my face, I think that there is a scribe in heaven who has almost run out ink.

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I was listening to a podcast on hormonal acne and endometriosis, and the thing that shocked me is that Paige’s dermatologist told her that the life cycle of a pimple is about two months. That means that a topical treatment may not be enough to get rid of the pimple. You need to heal from the inside out.

An endo sister encouraged me to choose three products and just be consistent. So I chose to keep it simple with more like five products. I am using the Simple cleanser, Rose water to tone and Simple moisturizer. I scrub twice a week and put a sandalwood and turmeric mask every week. Keeping my hair off my face is also helping, goodbye versatile hairstyles.

On the inside, I am still pursuing (the somewhat elusive) hormonal balance. I’ve been craving (and satisfying the craving for) lots of dairy. I need to find alternative sources of calcium and take my supplements. I want to detox again to help reset my body and then I can watch what I eat.

I decided a couple of months ago not to reduce my self esteem or worth to the presence or absence of pimples on my face or chest, arms and back.

The truth is, it’s not the worst that it’s been, and I am relieved, but I’d like to balance my hormones naturally. So, here’s to resetting my hormones and getting smooth(er) skin.

Have you struggled with hormonal acne? I’d love to hear what has worked for you.

Blessings,

Ess

 

 

The Cheat Meal Is Just Not Worth The Pain

When I moved to Mombasa, there are two things that I absolutely enjoyed, going to the beach and eating the local cuisine. I just couldn’t get enough of the mitais, mahamris and biriani. My body on the other hand, was not too pleased. If anything, it was having a hard time processing the wheat, sugar and high amount of fat. My face looked like rocky terrain, it was screaming ‘You need to stop!’ but my taste buds were in a mini-heaven. And my taste buds were boss. So I kept struggling.

From a tender age I had bouts of constipation. This was made worse by the Endometriosis adhesion that were on my large intestine. When I moved to Mombasa, it got worse. My diet was perfect for constipation. So I would eat happily and then wail in the bathroom. Each and every day. In retrospect it seems like madness.

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Then one day, I had enough! I decided that though the mahamris and mitais were tasty, they were just not worth the pain I felt when I pooped or the pain during and after my periods.  Nothing was worth that pain and I needed to start saying ‘NO’ to my taste buds.

Over the last two weeks, I’ve had conversation with Endo warriors who told me that the food that they avoid (wheat and dairy)  is just not worth the pain that they feel when they eat them. They’ve both felt the proverbial straw that broke the camel’s back.

Is the cheat meal worth the pain that you feel? Is it worth the hours spent in the bathroom, praying, trusting and hoping that the pain will end? Is it worth the pain during and after the periods?

I’ve asked myself these questions and my resounding answer is NO!!

What has your food and pain journey been like?

Blessings,

Ess

 

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 2

Endometriosis is a multi-faceted disease. Hysterectomy is not a cure for Endometriosis. Rachel shared her medical experience in Kenya yesterday. After that, she sought medical intervention in India, not once, but twice. She shares her first experience in India below.

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My friend Zulekha and I (she would be my medical attendant whilst in hospital) left for India on August 17th 2015 armed with all my past/recent medical records that included CT scans, MRI doctors notes you name it.

 

Upon arrival in Bangalore after an 8 hour flight we were received by the hospital’s arranged transport and driven straight to the hospital.  We were thereafter ushered into the international patients lounge and of course welcomed with soft drinks by very pleasant staff.  All the paperwork was ready and put together and we were immediately sent to our consulting gynae. Things were happening fast; in exactly 4 hours all tests had been done including MRI et al. We were later ferried to the apartment where we would rest until our next day’s appointment.

 

These guys are professionals and everything is computerized. Medical tourism as they call it is serious business and a big revenue earner for them, they are efficient!

In summary, the first week and a half were spent shuffling between more tests and consulting with the three senior most consulting doctors, Gynae, Urologist and GI surgeon; and decision making. My condition had become complicated.

 

I was now being treated for endometriosis stage 4 which means the endometrial tissues were now attaching themselves outside the uterus (since this was already out ). Thing is these tissues can attach themselves to any organ.  In my case, they had aggressively grown and attached themselves to the right ureter and my bladder.  This explained the recurrent UTIs and abdominal pain and sometimes lack of control of my bowels.

 

An interesting point to note is, a few weeks before leaving for India I had an MRI done in a prestigious city hospital including other tests and they were all clean, are these machines different?  I ask myself or is it the lack of knowledge on interpretation of these complicated reports or is lack of training? Not to mention the cost, this had almost dissuaded me from my trip.

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The results I got after week in India led to the involvement of three specialists. This was going to be a very sensitive surgery so they kept informing me. I remember being given a whole day to consult back home on the options availed.  One of them being a hormonal jab every three years but the side effects would be equally damaging.

The surgery was scheduled for August 26th at 7:30am, notwithstanding the risks already explained. I was prepared and we had our praying session with Zulekha before I was wheeled off to theatre.

This was my sixth surgery due to endometriosis. I hoped it would be the last.

I was going to be in theatre for six hours. I was taken through what each doctor’s role would be in relation to the endometrial tissues. The urologist would ensure my kidneys were safe from harm, whilst also checking the damage to the bladder. The GI surgeon would check the level of damage from the colon to the rectum. Whilst the gynae would remove the endometrial tissues from any possible place they could identify, and do a total cervical clean-up which included removal of the ovaries; the biggest contributor to the advancement of the condition. Most important to them was the pain management, so the epidural procedure was carried out while I was awake; I can never ever explain the trauma of having that done. I’m yet to get over it.

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They asked me to pray and have faith before they put me to sleep.

 

Pause! This is where I also take issue with us, the patients, do you read the doctor’s reports, summary discharge from hospital. Do you request for interpretation, why the particular course of treatment, etc? I remember arguing with the Indian gynae about the hysterectomy done back in Kenya.  In the numerous reports I had one report that stood out, it indicated that I had gone through a total hysterectomy but I argued with her and told her as far as the doctor had informed me it was a partial which meant I still had my ovaries et al, imagine my shock! We resolved by agreeing that once in surgery she would confirm.

 

I woke up hours later with several tubes inserted in various parts of my body. The catheter, kidney stents, a tube to discharge the fluids in my abdomen, bandages over my abdomen and a load of IV meds to take care of infections and pain; of course these I saw from the images Zulekha took after I insisted.

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Remember the total hysterectomy, it was actually partial so the doctor confirmed. It was so embarrassing!

To me the actual journey had just began.

Allow me to digress, earlier in 2013, I had rushed to Kakamega with my friend Sabaya to visit my old man after he was found with an enlarged prostate. Our biggest fear being it was cancerous, however , God is good, it wasn’t,  the surgery was successful. This is what amazes me about Men, they don’t share especially when it’s medical, you would be surprised even to their spouses. Would you believe the old man hadn’t passed urine for over a week, so at the point of getting him to hospital, it was a dire situation. He was stubborn and could not be admitted, so we took him at home. For most part of the evening he struggled with the catheter as it kept leaking and it bothered him, we completely ignored him, it made him comfortable. He even joked about it later on.

Zulekha can be gentle yet tough, day by day she informed me how I was progressing and would provide the necessary support including stolen showers (as I was not allowed out of bed, she would make it happen). She was strong for both of us and she asked and repeatedly asked for clarification when we were not clear what was going on.

Four days later it was time to leave a hospital and recuperate back in the apartment. As I got ready to leave the hospital I was presented with an adult diaper and a catheter bag. I was devastated despite the fact that Zulekha had prepared me for this, I guess I had blocked my mind to it. This was all occasioned to the mess they’d found in my abdomen, Fistula was inevitable! !

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So here I was with a pee bag strapped to my leg and wearing diapers. it was humiliating! All because of endometriosis.

HOW DID I GET HERE ?

Was it it ignorance? or sheer bad luck , is it a curse?

Should I have tried to learn more about my condition?

Should I have asked questions and more over the years?

Was I embarrassed about the condition?

Should I have sought second opinion? Should I have challenged the doctors here in Kenya whenever they carried out this and that procedure?

I’ll share part 3 of her story tomorrow. Rachel is a warrior! Her experience reminds us that Endometriosis awareness is crucial. The pain is real. Endometriosis is much more than a painful period. It needs to be treated seriously.

Every Endo warrior needs a Zulekha in her life. A friend who is willing to stand with her, cry with her and fight Endo with her. Zulekha you are a pillar of strength; a friend in times of need. May the Lord reward you.

If you would like to share your story, please send me an email and I will get back to you.

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

Dear Kenyan Endo Warrior, You Don’t Have to Walk Alone

Living with endometriosis can be hard. A majority of my memories are lonely, scary and empty. But, times have changed. I know that in the event I have a flare up there are women that I can call for advice, support and prayers. Women who get me, and don’t think that I am faking the pain or being unnecessarily sad.

Dear Kenyan Endo Warrior

The Endo community in Kenya has grown. It warms my heart to see the different people shining their lights and encouraging other women. The truth is just because, I walked alone doesn’t mean that other women should walk alone.

If you are looking for women to walk with, cry with and navigate this season with, please see below:

Endometriosis Foundation Of Kenya

It was founded by Elsie Hadassah Wandera. You can read her Endo Story and see what her journey has been like.

There’s a closed Facebook Group for women living with Endometriosis, a Facebook Page to create awareness about Endometriosis and a Whatsapp Group to support Endowarriors in Kenya.

They have meet ups from time to time.

Endo Sisters East Africa

It was founded by Doris Murimi.

They have an office in Thika at Gospel Preachers Church, Karibaribi, Thika, near Mary Hill Girls school. You can follow the conversations on their Facebook Page.

They have their first monthly meet up on Saturday 6th May 2017 at Cake Plaza next Prestige Plaza, off Ngong Road, at 3pm – 6pm.

They go to schools and talk to girls about Endometriosis. If you would like to invite them to your school, you can send them an Email.

Waiting Wombs Trust

It was founded by Editah Hadassah Trip. You can read her Endo Story and see how the Trust was born.

They have a closed Facebook Page where they walk with women who are waiting to conceive and encourage them.

They will have their first meet up on 17th June 2017 in Nairobi from 2pm at a venue to be confirmed.

If you are feeling overwhelmed and depressed and you would like to talk to someone, please send me an email and I will put you in touch with someone who can walk with you.

Please don’t suffer alone. As always, I am here to pray with you, cry with you and laugh with you, because I believe that one day, soon, we will laugh.

Blessings,

Ess