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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Navigating your Menstrual Health Journey in The Workplace

Have you ever begged a toilet to fill up quickly so that you could flush it, and walk out before people start to question your potty-time?

I have, and it sucks. I have often found myself begging, pleading with the toilet to zap everything in one sweep. A faulty toilet can make a woman on the rag cry in a public bathroom.

A few years ago, I worked in a place that women had to carry their used sanitary products home. There was no provision for sanitary waste management. I wasn’t the only female employee, but I quickly realized that is the way things were and there was little that we could do to change it. With men at the helm, our needs were overlooked, and we didn’t stand up for ourselves. I chose to visit a nearby mall every time I needed to use the bathroom.

Menstruation is still a taboo topic in many places. With conditions that are far from ideal, it is no wonder that some women struggle to feel on top of their game during that time of the month. From sanitary products being inaccessible for some, to the lack of clean toilets and waste management, to the societal normalization of pain, it makes a simple bodily function seem like a life sentence.

Over the weekend, I hosted a support group meeting where we discussed menstrual health and the workplace. It was a refreshing, informative and interesting conversation. Some of the things we covered are lazy toilets, sanitary waste management services, normalization of pain, sick-offs, embarrassing moments, performance during your cycle, PMS, dismissal, disclosing invisible illness, the financial strain, gaps in your CV due to illness, and the role of insurance companies. Rosemary Akeya, the founder of HRM Connections, shared with us her knowledge and practical tips of surviving in the workplace as an endo warrior.

We have a long way to in achieving menstrual equity, but we can be the change that we desperately want to see. Let’s talk about menstrual health and shun the stigma around it.

#periodpositive

Yellow – The Colour Of Hope

I’ve always had a soft spot for yellow.

Yellow represents warmth, love, and joy. The warmth that is toasty but not too hot, and the love that you don’t have to question or second guess, it just is. The kind of joy that fills your cheeks with giggles and causes you to smile involuntarily.

Yellow is not just the colour of emojis, it is the colour of hope. Hope for Endometriosis Warriors. It is an invitation to speak. It is the essence of who we are, a symbol of the type of days we long for.

Endo Sisters East Africa have launched the Yellow Nails Movement to start the conversation about Endometriosis.

You can have your nails done at a discounted rate at one of the participating salons. These are Ashleys Coiffure and Spa (Nairobi, Nakuru and Mombasa), Urban Hair (Nairobi), Blessed Salon (Nakuru), Mitch Beauty Parlour (Nairobi), Nail Perfection (Nairobi), Grace beauty Salon (Thika), Miracle Salon (Zimmerman) and Geanna Beauty World (Kisumu).

If you’d like to have your nails done at a non-participating salons but desire an information pack within Nairobi, you can pick an Endometriosis information flyer at Cablanche Boutique in Adams Arcade and at Rimis Men’s shop at Ridgeways Mall. You can also contact Endosisters on Facebook.

Yellow is the colour of hope, joy, peace and love.

Where Dreams Fizzle And Fade~ Endo And Your Career

The sight of blood changed my mind. It wasn’t so much the sight, as it was the experience as a whole, the texture, the colour and the pain. As a little girl, I spent hours daydreaming of myself treating little children and seeing them smile again. Having been well acquainted with the pediatrician, it was only natural for me to follow in her footsteps.

My dreams trickled away, I can’t tell you the day the tap run dry, but I can tell you the days there was short supply. In all of the tales, my period is the constant. For someone who thought they could handle sick people and blood, I was awfully grossed out by my own blood, and worse still, it made me sick.

My energy was sapped, I’d writhe around in pain on the cold tiled floor and finally lie in a pool of my tears. My periods killed my dreams.

When I started working, it only got worse. The pain was disruptive and destructive. It came anytime and lasted as long as it wanted. My reproductive system dictated my lifestyle and work schedule. I had lovely employers who accommodated me and my body’s failures. My second place of work was not as flexible and the stress of the workplace took a toll on me. I cried everyday without fail, my body hurt, and my mind was never at rest, so I left. I left to rest and to start a life that could accommodate my life and my body’s quirks.

An endo-sister recently shared with me how she’d have made different choices in her career if she knew it was Endo. I completely understood where she was coming from. My endo journey has taught me that it is okay to start over, to learn a new skill, and to figure it out as you go. My greatest lesson is: It is good to plan, but when your plan is disrupted, adjust to what life hurls your way.

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. 

Lupron and Endometriosis – What you need to know

There is no known cure for Endometriosis. In Kenya, we do not have access to excision surgery, so doctors perform ablation surgery and then prescribe drugs to suppress the symptoms of Endometriosis.

One of these drugs is Lupron, also Known as Leuprolide Acetate.

Lupron is a Gonadotropin-releasing hormone that is used to treat hormone based tumors like in breast cancer, prostate cancer, lymphoma, and certain kinds of leukemia, endometriosis and uterine fibroids.

It is also used to reduce testosterone in males, to delay puberty in transgender boys and girls till they are old enough to start hormone replacement therapy. It has been used on a trial basis to reduce urges in pedophiles and other kinds of paraphilia.

Administration

It is injected under the skin or in to the muscle.

Side effects to look out for

  • Menopausal symptoms- hot flushes/ night sweats
  • Mood swings
  • Depression
  • Headaches
  • Pain at the injection site – redness/ itching
  • High blood sugar
  • Insomnia
  • Fatigue
  • Diarrhea/ constipation/ nausea /stomach pain
  • Acne
  • Vaginal dryness/ itching/ discomfort
  • Vaginal bleeding
  • Dizziness
  • Memory problems
  • Joint pain
  • Reduces bone density

If it is inhaled it can cause breathing difficulties, asthma like symptoms and skin reactions.

What you need to remember

Lupron is a prescription only drug.

It is not a birth control method, so you can still get pregnant even if you do not get your periods.

If you have a history of osteoporosis in your family, you need to mention it to your doctor because of it’s effect on your bone density.

You need to eat foods rich in calcium and take calcium supplements.

You shouldn’t receive Lupron if:

You are pregnant or breastfeeding.

You have undiagnosed vaginal bleeding

Ongoing drug investigations

There are on-going investigations on the drug with women claiming that it causes more harm than good. You can watch the video below for more context.

https://web.facebook.com/watch/?v=298942434150564

Have you used Lupron before? What was your experience like?

Resources

www.lybrate.com/amp/medecine/lupride-1mg-injection

https://www.rxlist.com/lupron-side-effects-drug-center.htm

https://www.nwhn.org/lupron-what-does-it-do-to-womens-health/

https://youngwomenshealth.org/2014/08/01/endometriosis-leuprolide-acetate-instructions/

Hope in A World Of Endo

During a recent visit to my mum’s house I found my pelvic scans dated 9 years ago.

I froze.

One picture unearthed memories. Memories of pain, confusion and despair.
I had archived those memories, so that I could live in the present and enjoy my here and now.

Out of three ultrasounds only one showed something that helped the doctor see that the pain was not all in my head. The other two scans, were the basis of the ‘it’s all in your head’ argument. The most frustrating and infuriating words that can be said to anyone in pain. Anyone battling real, physical, and invisible pain.

During those months, I was scared, alone and in pain. Those make for a horrible combination. One that can push you to accept everything at face value. I didn’t know about the endometriosis resource centers or support groups. My sleuthing skills were in too much pain to be bothered to do more research on the drugs being administered.

image: art by carrie joy

When the side effects came, I wasn’t sure which evil was worse, the one I had lived with for years or the one that I had willingly had pushed in to my glute. It was a literal pain in my butt. And some of its effects have stuck with me like glue. Nine years later it is hard to shake ‘em off.

I wish I knew what I know now about Lupron. I wish I knew that after sending aunt flo on vacation, it would erode my bone density; that it would sink me into a hole, that it would announce free room and board for every calorie looking for a home. That it would take over 5 years to lose that weight. That the sadness would overwhelm me. That I would experience menopause symptoms as a teen.

Just maybe, maybe if I knew all this, I would have made a more informed decision. I would have taken my calcium supplements, I would have sought help and not drowned in tubs of ice cream.

Information is power. Endo sucks! But it would sure be nice to know exactly what else you could be signing up for when you take a drug. I’ll be highlighting the drugs available in Kenya, and giving you the pros and cons of each.

Finally, we need excision surgery in Kenya. That is what hope in the dark world of endo looks like, excision. And healing, by God’s grace.

Endo Warriors At The Coast

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

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

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

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

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

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

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

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

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

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We have some upcoming events:

26th January 2019 – Endo warriors support meet up

23rd March 2019 – Endometriosis Awareness Event – Mombasa Edition

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

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

Endo Story – Devon

When we share our stories, we empower and encourage other women. The pain is not all in your head, it is real. Endometriosis is real and you are not alone.

Devon is an endo warrior who lives in Yorkshire, UK. She was 25 years old when she was diagnosed with Endometriosis, now a year later she tells her story. This story is a reblog from Bloomin’ Uterus.

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Devon’s Journey:   Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologize for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.

So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right-hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first, I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have a 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was, in fact, bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.

That is why I don’t know if my journey started 2 years ago or 12.

2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favorite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.

This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.

At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!

A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.

From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.

Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following its removal, I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain.  In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.

To this date, I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopies should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently, I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.

Most of all, I am educating myself.

Throughout my journey, it has felt like The Blind Leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!

Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.

If you would like to e-mail Devon, you can do so here and you can follow her blog.

Thank you for sharing your story Devon, I could relate with many parts. I pray that the docs find a cure, Lord knows, millions of women need it. Grace, peace, and strength unto you.

What To Pack in Your Hospital Bag Before Surgery

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

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

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

For the hospital stay

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

For the journey home

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

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

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

Deuteronomy 31:8 New International Version (NIV)

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

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