Safari Yangu Na Endometriosis

Jina langu ni Esther Mbugua – Kimemia. Mimi ni mwandishi na mwanzilishi wa Yellow Endo Flower na The Yellow Flower Initiative. Mashirika haya mawili huelimisha na kuwawezesha wanawake, wasichana na wazazi wao juu ya afya ya hedhi.

Kuligunduliwa kwamba nilikuwa na uugua ugonjwa wa Endometriosis nikiwa na miaka 19,hii ni baada ya kuteseka miaka sita kila nilipokuwa katika  vipindi vya kutokwa na hedhi.  Kila ilipofika wakati wa hedhi nilishikwa na maumivu yasiyoelezwa, hakuna daktari aliyeweza kueleza ni nini haswa kilichokuwa cha fanya niwe na maumivu makali. Hadi sasa nimeenda hospitalini kwa upasuaji mara  tatu. Mara  ya kwanza  ilikuwa kuchunguza kibofu cha mkojo wangu, ili wabaini kwa nini nilikuwa nikipata UTI mara kwa mara. Upasuaji wa pili uilikuwa laparoscopy, hapa ndipo waligundua endometriosis ilikuwa imeunganisha tumbo langu kubwa na ovari ya kushoto. Baada ya hapo nilipewa madawa kali ambayo yalinipa dalili za menopause. Upasuaji wa tatu ulikuwa kuondoa viambatisho na kuondoa kipengee changu pia.

Endometriosis ilinipigia ndoto zangu, kuna siku nyingi ambazo nilikuwa nimechoka sana,hata singeweza kuondoka kutoka kitanda changu. Endometriosis ilifurisha tumbo yangu na hewa au gasi nyingi  hadi nguo zangu zengine zilikuwa zinanikaaba sehemu ya tumbo. Maumivu makali pia ilimaanisha singeweza kufanya kazi yeyote. Nilikuwa ninajilaza juu ya sakafu ya tiles ili baridi ya tiles ipunguze maumivu.

Kila nilipokuwa katika vipindi vya hedhi nilikuwa na maumivu makali!  Maumivu ya mgongo, gasi au hewa mingi kwa tumbo, uchovu, kutokwa na damu nyingi nzito wakati wa hedhi, kuvimbiwa na tumbo au constipation kwa kingereaza, maumivu ya kichwa na kuhara.Maumivu  huwa yaweza kupata mwanamke ata kama hayuko katika kipindi chake cha hedhi. Kwa mfano, nilianza na kusikia maumivu tu wakati wa vipindi vyangu vya hedhi, kisha maumivu yakaanza kuja ata nikuwa na ovulate na pia siku chache kabla ya vipindi vya hedhi kuanza.

Nilisikia hadithi za ugomvi kabla ya kujua ukweli, la kwanza ilikuwa kwamba mwanamke akimpata mimba itaponya endometriosis. Kwa kweli kila wakati nilpokwenda kwa hospitali, niliulizwa kwa nini sikuwa na ujauzito. La pili ni kwamba mwanamke aliye na endometriosis aidha ako na mapepo ama amelaaniwa.

Nilikuwa nikibeba madawa mbalimbali za maumivu katika kibeti changu. Wakati maumivu yangekuwa makali sana, basi hapo ilibidii niende hospitali kupewa sindano ya kupunguza maumivu.

Mara ya kwanza,Madaktari walidhani kwamba nilikuwa na hali ya kibofu . Pale kibofu ilipopatikana kwamba haina shida ndipo madaktari waliendelea na matabibu yao hadi kupatikana kwa endometriosis.

Hakuna tiba inayojulikana ya Endometriosis. Upasuaji wa excision ndiyo kiwango cha dhahabu katika kutibu ugonjwa wa endometriosis . Kuna madawa mbalimbali ya homoni yaliyotolewa ili kusaidia kupunguza dalili za endometriosis na kupunguza maumivu. Madawa haya huchukuliwa kulingana na maelezo ya daktari, utumiaji ya haya madawa  hutofautiana kutoka kila siku au  kwa kila wiki au kila mwezi ikiwa sindano.

Wosia wangu kwa wanawake wanao ishi na ugonjwa wa endometriosis ni kuwa mtetezi wako mwenyewe. Anza kusikiliza mwili wako na kuelewa maamuzi na mifumo yake. Usiogope kutafuta maoni ya pili, na soma sana juu ya Endometriosis. Jiunge na kikundi cha msaada. Shirika la Yellow Endo Flower huwa na mkutano wa kundi la msaada mara moja kwa miezi miwili huku Mombasa. Shirika la Endometriosis Foundation of Kenya na Endo Sisters East Africa Foundation pia hutoa msaada kwa wanawake wanaoishi Nairobi na sehemu za bara.

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When It Floods – Endometriosis & Heavy Flow

Big girls wear diapers too.


My girls talk a lot about diapers, my little one is potty training herself. No, really, she woke up one day thia6 week and declared that she was a big girl who didn’t need to wear diapers.  So she graduated to knickers when we are home, this isn’t without accidents and a love-hate relationship with the potty. But, the bottom line remains, diapers are for little girls.


One of the things that I loathed about my periods was that I always received the el-nino version, complete with hail stones, also known as the clots. It was heavy, messy and destructive. It had me longing to stay indoors, to stay tucked in bed, except, it stormed in bed too, and sheets aren’t woven to absorb the red sea. 


I’ve legit thrown away some garments before. I made the grande error of washing off – more like, attempting to wash off – a blood stain with hot water. It bonded. The red carved a home in the threads and refused to leave. I’ve been terribly embarrassed by my periods. Had my self esteem plummet during my periods. I couldn’t trust my uterus not to let me down. The flow sometimes felt like a breast-milk let down, urgent, forceful and absolutely beyond my control. 


I’ve layered and improvised to try to contain the flow. I’ve set reminders to wake up and turn during the night, because the pad just wasn’t loyal. Even layering the pads was not effective in holding back the red sea.

An endo-sister recently shared with me that the one thing she wished that she knew is that adult diapers were an option. 
I never thought of them as an option, in fact, I always considered maternity pads the next best thing. I think it’s a brilliant idea. A lifesaver, and self esteem redeemer.


Big girls wear diapers too. 

Invitation To Partner

I could talk about periods all day long. What used to make me cringe and uncomfortable is now what make I have chosen to spend this season of my life talking about and training on.

I trained a group of ladies from Moi University a few days ago, and I loved it! There are way too many assumptions about menstrual health. The stigma surrounding menstrual health means that the lies have become truths, and there is no avenue to ask questions or to seek clarifications.

In some communities, girls are having sex soon after their menarche because the boys believe that sexual intercourse can cure cramps. Parents, religious insitutions and schools’s voices are faint compared to the uproar of their peers.

Sex is not a cure for for menstrual cramps. Pregnancy may provide temporary relief, but I believe that teenage pregnancy should not be a band-aid for underlying problems. Pregnancy and motherhood may come with other challenges.reach out and give someone a great big hug!.png

There is a great need out there. To some, this may just seem like just another period campaign, but it is more than just a period talk. It is the demolishing of myths, it is teaching of life-changing truths, it is the restoration of dreams and hopes, it is unveiling the – often-marred- beauty of being a woman. It is showing another side of the rose, while hoping to take away the memories of the prick of the thorn.

There are several opportunities that are coming up to train, inspire and mentor girls, and the truth is that I cannot do it alone.

If you would like to get to know more about the training sessions and how you can help to change a girl’s life, please send me an email via yellowendoflower@gmail.com.

 

A Conversation About Menstruation – MHDay2018

When we take away the shame that surrounds menstruation, girls and women will truly be able to walk in freedom.

Being born with a uterus should not be a disadvantage. Being born with a uterus should not stagnate your dreams. Being born with a uterus should not make you spend time away from school or work every month.

To commemorate Menstrual Hygiene day 2018, We For She organized an event at Ronald Ngala Primary School in Mombasa.

It was nice to see boys and girls eager to learn more about menstrual hygiene. A conversation about menstruation is one that we need to have with people of both genders. Menstruation is not optional, menstrual hygiene and health education should be prioritized.

I was invited to speak about menstrual health education and endometriosis. It was good to create awareness about endometriosis even to preteens. I urged the stakeholders present to offer comprehensive menstrual health education to the girls, including stressing the importance of understanding your hormonal functions and how to decipher your periods.

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The Mombasa County Women Representative Hon Asha Mohamed took the microphone and shared her journey with Endometriosis. Her vulnerability and willingness to share her journey was beautiful. We may be one in ten women, but we are more than just a statistic. We are mothers, sisters, wives, cousins, and friends to many other men and women. Our voices matter.

I applaud you Hon Asha Mohamed. Thank you for standing with us and for amplifying our voice.

Tina Leslie of Freeedom4girls shared about period poverty. The reusable menstrual products are a great alternative for girls and women who miss school and work because of lack of sanitary products. Also, these products are environmentally friendly.

The theme of this year’s Menstrual Hygiene days was #NoMoreLimits. Here’s to girls and women achieving their dreams and living their lives to the fullest.

 

 

#31 Days Of Endo ~ Reshma Maru

Day 8:)

Happy International Women’s Day.

We continue to share our stories and raise our voices as we #pressforprogress.

It’s difficult to tell the battle a woman is fighting by looking at her. Endo is an invisible force, it is tiny and mighty. It attacks from the inside out, Endo pain is something that all girls would love to live without.

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There is a resilience, a fire in her eyes, a desire to win that Reshma Maru has that lets you know that she is determined to beat Endo. She first shared with me her story in 2017.

My name is Reshma Maru, I am twenty-seven-years-old and I work in procurement for a furniture store. I smile when I see the face of a child – the innocence they show and their purity of heart. Joy fills my heart when I day-dream about holding my own child and cradling them close to me.

 

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I started my periods at the tender age of eleven. I would hear girls in schools saying that it is like a disease where if one touched a girl who had her periods it would spread, so I kept it hush from friends and even from my mother. Being the only girl brought up in an Indian family I didn’t have someone to confide in, the day that my mother found my bed sheets stained she was furious that I did not tell her I had started my periods. In the Indian culture, it is important to tell your mother so that she can explain to you that when you are on your periods you do not go to the temple or touch someone who is going. So many myths came together with this.

 

I went through years of painful periods that would last 7-8 days. Panadol was my best friend and without it, I would not last any of the days. I knew that, ahhh it is periods, they are always supposed to be painful, so it is normal.

 

The pain got worse when I was twenty-four years old. I would have the normal painful period but the pain would continue even after the periods were over. So two weeks down the line I said to myself, ‘This cannot be the period pain, it must be something I have eaten.’ I went to a general doctor and explained all my symptoms to him, and he said that it sounds like amoeba. He took a stool sample and said that he found traces of amoeba and that was a sigh of relief as I knew there are medicines to get rid of them. I was on medication and a few days after ovulation I was pain-free.

 

The next month came and I got painful periods and the same pain after the periods. This time I ignored it and took antibiotics for two weeks and voila I was back to normal. I just thought to myself that since the previous periods were painful I may have a less painful one next month. Come next month the pain was worse. I would get hot flashes, nausea, lack of appetite, and pain all over my abdomen especially my left side.

 

Since I had a medical cover at work I decided to go see a gynae and just to get things checked out as it may be a small issue, and besides since I wasn’t paying for it I didn’t have an excuse not to go. I got advise from fellow workmates on which gynae to go and see since they were using the same cover. The gynae advised me to do a blood test and a scan so that she could have a clear view of what was causing the pain. When she saw the scan report she looked at me and said ‘You have Endometriosis.’ At first, I was like ‘Huh? That is a long name to even pronounce, let alone spell.’

 

I took the prescribed medication and decided to google the sickness she had talked about. After the research, I concluded that it was a common disease so may be the Vissane that she had prescribed would cure it as the box read: specifically for Endometriosis. I took it for 6 months as I went for regular checks with the gynae and I was really really happy. Vissane suppresses your periods, so no periods = no pain for me.

 

I was three months away from my wedding and pleaded to the gynae to let me continue with the medication until my wedding and honeymoon were over. She agreed and said that I should get a baby and all these problems would disappear. I was happy that I was pain-free, able to work, plan my wedding, and run around.

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I actually ditched the contraceptives when I started gaining weight and getting very emotional almost every day. I started going to the gym to lose weight but after 3 sessions max and I could hardly keep up. I was always tired, my feet always hurt, my shoulders felt like someone was sitting on them, I would cry for no reason over the tinniest things. My husband would be like, ‘What is the matter? Be strong,’ and I would just look at him and just cry, and cry.

 

The next time my periods came, the painkillers did not work at all. I could feel a sharp pain like I was being stabbed on my left side, but nothing was working. I even went to work in all that pain as I waited for the painkiller to kick in. I was hoping to get distracted from the pain while I was working but that didn’t seem to help either. I rushed to my gynae and pleaded with her to do something about the pain. She injected me with stronger painkillers but nothing changed. Now helpless, at the end of my strength, I asked her, “Please just tell me anything else we can do because I don’t think I will last another day like this.” If I saw a knife that day I would have stabbed myself just to remove whatever it was that was causing the pain, as I knew exactly where it was.

 

She advised that I be admitted right away for a Laparoscopic surgery. Without knowing the details I was ready to go through it just to get out of this hell. In the evening as I was prepping myself for surgery, I started thinking ‘What is this I have agreed to do?’ but I prayed all will be well and went in for it. A surgery that was to take 2 hours ended up taking 4 hours. I came out of surgery with a numb tummy and no pain, and I said ‘Wow! I like this feeling.’

 

The pain started after I was out of hospital, I was constipated, dealing with pain  from the surgery itself, dealing with a dry throat caused by the tube they insert down your throat during the surgery, extremely emotional and hating on those who didn’t come see me in hospital including a best friend who I decided to let go of. I went back to the gynae for my report and to ask why the surgery took so long and she explained that I had a normal cyst and inside it there was an endo cyst that was growing, both the cysts measured at 5.5cm. These were on the left ovary therefore causing the excruciating pain. They were removed but since they were on my ovary the top tissues had to be removed as well, this would prolong the healing time.

 

Post-surgery, I am still struggling to join this diet plan that endo patients are asked to follow but my workmates give me support and also join me in eating right. I do not want to lose a job or give up on life because of this. Believe me, it is so hard, I lived for food and now I get told do not eat this or that. It is a struggle to find organic food, when you do find some you are too weak to cook it for yourself.

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But believe me nothing is worth your health. The bills that you get with medication and surgery are more expensive than just eating right and taking care of yourself. I am now hearing about different foods or herbal meds and I’m willing to give them a try.

 

This has really changed me in many ways – I am closer to God more than ever, thinking of him every day – I am more positive and really willing to help someone else through this because NOTHING is possible without the support. When you are left alone your negative thoughts echo within. Listening to someone vent is good enough for me because we all, at one point or another , want to do that.

 

I always want to help and be there for anyone going through this as no one understands your pain like a fellow endo-sister. I believe this will be a thing of the past but this can only happen if we create awareness and conduct research on what works or doesn’t work for each other.

 

What I always keep in mind is that God gives the toughest battles to those he loves the most. Let’s not give up. Always be there for someone whenever you can because time is short, let’s not run out of it!

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courtesy yesofcorza.com

My favorite flower is a black rose as it is unique and rare to find just like you!!

You can connect with Reshma on Facebook and Instagram.

 

Thank you for sharing your story with us, Reshma! We pray that 2018 will be a better year. Here’s to health and many moments that make you smile.

#31 Days Of Endo ~ Kawira Rweria

Day 6 🙂

Invisible pain results in invisible battles. Behind the smiles are scars that cannot be seen, unless you use a laparoscope.

Kawira Rweria is a bubbly warrior, who I e-met (can we take a moment and thank the Lord for the internet) last year at one of her lowest moments. Seeing her smile is such a joy.

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Endo is a thief, but we are slowly but surely reclaiming what it has stolen from us.

My name is Kawira Rweria and I am 32 years old. I work as a customer care officer. Serving God and people makes me happy.

 

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Where it all begun

I started my periods at the age of ofurteen. I was confused but still excited because in my thinking I was finally a young woman. I was all grown and in the same level with all of my agemates who had started their menses way before I had. After two months, my periods disappeared for over 6 months. When they resumed they were heavy and a little painful.
When I was nineteen the pain became worse. I was in pain during ovulation, and during the periods the pain would have me lying in fetal position on the floor. I was taken to the hospital and I was told its normal for some girls to have painful periods and that the pain would go away when I am older or when I get a baby. (I am rolling my eyes right now.)
Finally,  a diagnosis
Fast forward to 2017 when I first heard the name Endometriosis. ‘Endo what?’ I thought to myself.
I was diagnosed with stage 4 Endometriosis last year. After the surgery I was put on on Visanne, the side effects were worse than I expected and I was discontinued. I was then put on Yasmin. After my second/third operation in the same year, i was put on Zoladex (code word for medically induced menopause.)
The Challenges
Endo has robbed me of my happiness, my energy due to the chronic fatigue, I have lost a few friends who do not understand why I can’t hang out or see them when they want. I have missed work a couple of times due to pain. I am mostly physically, mentally and emotionally drained by the pain.
I have had to change my diet, I cut out all dairy products, I struggled giving up wheat, but I have recently made progress (doing a happy dance). Red meat, however, is my undoing (napenda nyama sana).
My biggest challenge is lack of energy, fatigue, the constant pelvic pain not to mention the side effects of the hormonal drugs.
The lessons I have picked along the way
I have learned to be strong because being strong is the only option I have. I have learned to mask my pain and put a smile. I have put all my trust in God.
My word of encouragement to women with endo is, You are not alone! We are all here together for each other. If you are out there alone and in pain, please join the Endometriosis Foundation of Kenya WhatsApp group or the Facebook group.
The thorns present in the rose bushes do not hinder the roses from flowering and becoming beautiful.
Finally, I tend to think of endo in the Bible context as it is in the story of Job. God does not give you a burden too hard to bear, thus we will overcome this. We are warriors.
Kawira, thank you for sharing your story with us. May your joy continue to bubble within and may you bloom despite the thorns.

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

Endo Prayers: I Feel Misunderstood

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Dear Lord,

This is hard. My tears have become my food and I feel as though I am falling apart. The pain is not only during my periods but all through my cycle and I do not know how to explain it to those around me.

Though I look okay on the outside, I am caving in on the inside, and I feel alone. Hurtful statements have been said by those around me, some of which have pierced the little space that Endo isn’t already crunching on. The pain has multiplied.

Lord, you see my heart and my inner being. Please give me peace, strength, and understanding. Help the pain to go away because I feel like I’m clutching at straws. Help me to love even though I am hurting.

For those around me, I pray that you will help them to see the pain beneath my smile, help them to be more understanding and kinder in their speech.

May you be glorified in and through this.

 

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.

Yellow Flower Mail

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

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

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

2 Corinthians 1:3-5 (AMP)

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

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

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

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

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