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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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/