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.

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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. 

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.

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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.

Homemade Apple Cider Vinegar (With the Mother)

Apple Cider is one of my staples. It is way more effective than an energy drink, and a great plus is that it doesn’t give me heart palpitations. The last time I had an energy drink I thought I was going to die. My heart wanted to actively transport itself out of my chest. Instead of feeling energized, I felt anxious, hot, angry and out of control. I am low key intrigued by people who can have a Jägerbomb and live to tell a tale.

I have been using ACV on and off for the last couple of years, and I am sold. My main frustration is sometimes it goes out of stock when my bottle is close to empty, so sometimes I have to take a break from it. My body is not usually very happy about this- the fatigue and brain fog show up.

A few weeks ago, I sampled a kombucha brew that my friend made and I loved it. I told her I would make it and she asked me if I’d ever tried to make ACV. It piqued my interest and I decided to give it a shot after all the worst thing that could happen is it backfires and I go back to using the store-bought one as I restrategize.

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Thanks to Wellness Mama, which is a spring of valuable information, I made my first batch. It has taken slightly over 7 weeks but I now have 400ml of raw and unfiltered homemade ACV with the mother. I made a small batch to minimize my losses.

Anyone who would like to make their own ACV, here is the recipe that I used. Making it at home is perfect especially if you use it for multiple things such as skin care, cooking, and cleaning.

I’ll share my Kombucha brewing experience in my next post.

Have a lovely week 🙂

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.

 

 

#31 Days Of Endo ~ Patricia Roy

Day 4:)

Endometriosis is real. It is not a fictional pain, it is real and it affects 1 in 10 women. Removing one’s uterus is not a cure for Endometriosis, Patricia Roy shares with us her story of pain, courage, and hope. She first shared her story with me in 2017.

She is based in the United States and she supports her fellow endo warriors and shares an array of home remedies on her social media sites.
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Hi! My name is Patricia and I am 41 years old. My period started at the age of 14, and I couldn’t wait to start my period. It meant I was a woman in my eyes. The period issues began when I was 15 years old. My mom took me to my sisters’ gyno because my sister had endometriosis and I was showing symptoms. After I saw the gyno he did surgery and I was diagnosed with endometriosis at 16.

When I was first diagnosed I didn’t worry about it, because it wasn’t severe. But I was put on birth control to help with my periods. When the pain started increasing I was put on Depo provera injections. Those didn’t work, so I was put on Lupron and that also did not help. I had many surgeries to clean out the endometriosis and at 21 it was decided a full hysterectomy would be best for stage 4 endo. I thought it would be a cure, but it was not a cure.

I do regret the hysterectomy. Because it’s not a cure. And I always wanted a baby if my own. It was a very dark time in my life when I had my hysterectomy, my writing helped me cope.

 

This disease changed my life in many ways. I was unable to finish college because I was too sick. I worked off and on but eventually I had to be put on disability. Emotionally my journey with this illness has caused me a lot of anxiety and panic attacks.

I have had 32 surgeries so far and I currently have endo on my bladder and cysts all over my pelvis. I started a support group on facebook called Sisters in Yellow.

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I currently started writing for a magazine called  Streetfashion, I am the beauty editor.I always wanted to be a writer since I was little. I write poetry and song lyrics. My writing has gotten me through a lot of dark times, dealing with this disease.

My advice to other women is to take it one day at a time, and to find a hobby that takes your mind off the pain. I’ve also come across a lot of pain methods that are natural and can be done in the comfort of your home. I have a beauty page where I share home pain methods.

My favorite flowers are Daisy or Calalily.

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The beautiful thing about Patricia is that she has not let Endo dull her sparkle. 32 surgeries later, she still has a smile on her face and light to shine to the rest of the world.

Thank you for sharing with us, Patricia. Your story is an encouragement to many sisters. Keep writing and shining!

Bloom

“It is well” is at the tail end of things that I like to hear in times of turmoil. It is a phrase that I heard in the gusts of pain and wondered how anyone could conclude that what felt like a near death experience was something to talk about on a positive note.

10 years ago as I writhed in pain, it was not well. My body was not well, my mind was not well, and, I was not well. Everything hurt; passing urine, bowel movements, ovulating and menstruating were all accompanied by pain. I hated the journey, and I didn’t have good things to say about life. I was drowning on dry land. A few months later, I began my journey to get a diagnosis, which changed my life even more. Endometriosis is a silent, seemingly subtle thief, that lurks in the night at first, and then becomes brash as it matures and steals unashamedly in broad daylight. The pain that I had been battling over the years was all linked to the painful and heavy periods but I had no idea.

Pain is a very good teacher, thankfully we do not all have to attend its classes, especially if we have other people to teach us. My experience through pain and life change bore a desire to teach what I wish I knew as a teenage girl. One year ago, I decided to put the lessons into a book.

Bloom is here

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I am stoked that it is a reality, Bloom is a product of tears, surgeries, questions, countless medications, and a desire to be the change that I want to see.

Bloom is your practical guide for your period journey. It describes how a normal period should look and feel like, it explores the sanitary product options, healthy practices that every female should employ and teaches girls and women how to keep a period diary, the different factors that they should look out for and it includes a one year period diary.

Keeping a period diary over the last couple of years has revolutionized my life. I am now more self-aware, able to identify patterns in my cycle, and kinder to myself, there is a kindness that stems from understanding. I am able to hear my body whisper before it forces me to lay down and listen to the opera of its screams.

Bloom is Ksh 500/=, to purchase it in Nairobi please contact Rosemary via 0731224223. To purchase in Mombasa please contact me via 0746622833 or yellowendoflower@gmail.com.

When you look at a rose from the top, it is difficult to see the thorns beneath the blossomed petals. Sometimes the exterior appearances make people doubt the pain, but just like the sting of the thorn is very real so is the invisible pain that has somehow been branded as normal.

Through the years I have learned to bloom despite the thorns.

Energy Forecasting With Endometriosis

There are days I have the energy to change the world and other days that I want to put the world on pause and sleep. The latter is especially when Aunty Flo is in town. I usually have no motivation to do anything. I just want to sleep, but life, oh life must go on.

Fatigue is like a leech that sucks the life out of you. Sometimes I think that I am draining more than just blood; my mental energy is usually at an all-time low, and the desire to do things that I normally would is at zero.

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One day in December I woke up running on reserves and on that day a simple thing like wearing earrings felt like so much work. A few years ago, this would have seemed so strange and out of character for me, now it is (almost) a non-issue. After I had children, I stopped wearing small earrings, to reduce the items that they could choke on, I miss how light and pretty they were. Now, when I do wear earrings, I wear big ones, that tend to make me feel like I am lifting weights using my earlobes. God forbid they get stuck on something, or better still, my Ky yanks them.

As I am more self-aware and seeing the pattern in my life, I am learning to plan ahead and forecast my energy. There are days that I have energy coursing through my veins and those are the days that I write books and put things in order, and there are other days that I have to access my reserves to try and make it through the day. Especially when Auntie Flo is in town, she has a way of depleting my energy even before it comes to the surface.

My energy graph would be high when I am not on my period or close to my period and (almost) non-existent when I am on my period. During those days I only do what is absolutely necessary, the funnel I use to decide is pretty small, so doing my hair and wearing earrings seem like too much work.

For these days I plan ahead to have help, especially with the girls, I sleep, oh, I sleep, this is my current symptom of Endometriosis, a wave of sleep that will not go until I enter bed for a couple of hours. I (try to) eat well, so as to keep my energy up and avoid constipation, Auntie Flo and constipation make for a horrible duo. I do my hair a few days before to avoid walking around looking like I came in to close contact with high voltage and wear simple outfits that do not need matching or ironing, long live dresses. I think about my meal plan in advance, otherwise, we will eat the same thing every day, because the energy is limited to surviving. Anything that needs order and analytical skills is avoided during this time.

I am grateful for a good support system, my husband and daughters are so understanding when it comes to these couple of days. I desire to increase my energy levels so that is a work in progress, but good planning is definately working in my favor.