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/

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More colour, Less Gray

Happy new year!

I hope you had a lovely festive season.

For a long time I was indifferent to new years, the only new thing that it came with was an opportunity for me to wail in pain. In fact, a few years back I was convinced that the older I got the more excruciating the pain became. I longed to find the pause button in life, so that I could sift out the things that I loved and dwell on them.

Pain has a way of changing your life, it shifts your priorities and erases the rainbow in the sky. Both your happy and sad moments are processed through a gray-scale filter.

I still haven’t found the pause button but I have accepted that each year has it’s own beauty that I can dwell on. I am learning to live each day at a time and to remain grateful. Gratitude can illuminate the darkest of paths.

The truth is we don’t know what 2019 will hold, (I am not here to tell you that 2019 is your year…) but we know who holds it. While some curve balls may roll in our direction, I pray that we will experience the grace, peace, strength, joy and love that come from above. And that despite the pain, the rainbows will remain.

Here’s to 2019. A year of living life and finding joy in the little things.

31 Days Of Endo ~ Unsilenced

Day 22

Individual’s stories are like dominoes, they look small, but they have the power to start a revolution and change the status quo.

Two years ago, Arti Shah, resolved to tell the story of Endo warriors living in Kenya. At the time, I had come to Nairobi for the annual Endometriosis of Kenya event.

This documentary is a beautiful symphony of voices that were once stifled and muffled by pain, despair, and shame. Arti has beautifully put them together and presents the trailer of Unsilenced.

One day Endometriosis will be a household name. Please watch and share.

 

#31 Days of Endo ~ Sarah

Day 15 🙂

23 years after Sarah first sought help, she got it.

Sarah shared her story with Lisa of Bloomin’ Uterus in March last year.

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New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years.  Today, a year later, she shares her long and difficult Journey with us.

Sarah’s Journey:  I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.

It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16-hour class around it and teach it inside a week.

When I was a kid, I was the *fastest* kid in the fourth grade. I outran everyone regardless of their height, gender, or age in the fourth grade. And I worked on my grandparents’ farm in the summers. I lifted hay bales. I carried things bigger than me! I was strong. I was fast. And then my body started changing. My weight shifted. My period started.

When I was 15 the pain of it became unbearable, I thought at the time. It lasted 8 days and it was heavy for most of them. I would throw up or pass out sometimes because of my period. I was anemic. I came home from school frequently because of my period. My mother was irritated and didn’t think it was real. And don’t get upset with my mother!

It turns out she had Endo, too. She didn’t get diagnosed until she was in her 50s. So, it’s no wonder she looked at my suffering and thought it was normal–it’s what she was told about her own suffering. And she’d never heard of Endometriosis.

Something else that happened when I was 15 was that I managed to subluxate some of my ribs and score a compression fracture in one of my thoracic vertebrae. The simple act of getting dressed for school is what made this happen.  So, in addition to period pain, there was a constant pain in my upper back–constant and chronic as in every single day, every single minute, there was a pain. The doctor my mother took me to accused me of trying to get out of gym class and didn’t even order an X-ray. I found out about the bone damage 9 years later when I was getting X-rayed for something else.

This set the stage for doctors not believing me about any of the pain I was in.

It also kept me exercising no matter how bad the pain got because I was told that exercising would make my “imaginary” pain better. I took myself to a gynecologist because that was my only option. Thanks, Planned Parenthood, for being a thing. They didn’t diagnose endo. To be fair, no one diagnosed it or considered it for another 23 years anyway. So, I still only have love for them. At least they listened.

I first learned about Endometriosis from a high school friend who had been diagnosed. Her suffering was worse than mine, so I never considered that I could have it. I assumed I was being given accurate information and that my pain tolerance must just be low. I kept my head down, took ibuprofen every day for my back and more for my period, and kept on not getting any better. I took ibuprofen every day for about a decade. I took lots of ibuprofen. Every day. It didn’t stop the pain but made it manageable, tolerable.

I also started taking birth control pills at some point. Some brands helped with my period pain, some made it worse. All of them had side effects that kept me switching or stopping altogether. Benefit to detriment ratios became nearly daily contemplations. At some point, I decided The Pill wasn’t worth it. Pain was a better option.

I’m pretty sure that decision came after I ended up in a neck brace/soft cervical collar from a little traffic accident followed by carrying something bigger than me incorrectly. I couldn’t get my doctor to believe how much pain I was in then, either. So, I took so many ibuprofen than I pooped blood for a few days. When I told my doctor that, she finally sent me for physical therapy, an MRI, and to a neurologist. Needless to say, that was the end of my love affair with ibuprofen. I can take other NSAIDs, but, even now, over a decade later, ibuprofen creates horrible abdominal pain and blood where there shouldn’t be any.

So what about those cramps? Aspirin was my first solution. It thinned out the clots, so that was a relief. It didn’t do nearly as much for the pain. I got really good at controlled breathing and pretending. And I had to pretend. About this time, I had to change jobs due to carpal tunnel and thoracic outlet syndrome. I couldn’t do my lame desk job. I couldn’t paint. I even had trouble cooking for myself. (I will be forever grateful to the Mexican restaurant down the street from me at the time and their mostly-healthy, affordable tacos.)

I started teaching. The classes were intermittent and the pay was good, which allowed me time to recover in between teaching stints. I didn’t always manage to schedule classes around my period, but I tried. Working from bed on the worst days is a luxury most of us don’t have. It’s a luxury I sometimes had. Eventually, my arms and hands improved so I could re-learn all my painting skills, but my period never got better. It was always something I dreaded. And still, no gynecologist gave the pain a second thought. Eventually, I stopped talking about it. I pretended.

Just like I pretended in front of my students. Most days I was behind a computer screen. Some days I was also behind them. So I could keep my voice level–or even happy–while I hunched over, massaged, turned green. And in a decade of teaching, very few students noticed enough to say anything or react. Every now and then someone would mention something about my voice not matching or seeming like I was acting. It’s true. I was acting. I was pretending to be okay. And once, a male student turned around to look at me while I talked…. He did the whole Warner Bros. cartoon shock face reaction and turned back around again. I kept on talking, joking, whatever. Even though my back hurt, my arms and shoulders hurt, my period was Hell on Earth, it was all fine as long as I could still go dancing and still go walking.

My health sometimes kept me away from dancing for months or more at a time, but I always got back to it. I performed a little, even. I spun fire. I belly danced. I even got to perform on the main stage at Rakkasah a couple times. It was a luscious and frivolous hobby, and it got me out of bed. Over and over again, dancing was the reason I got out of bed, left the house. There might be weeks at a time that I didn’t teach–that I didn’t *have* to leave the house. Dancing got me out. Going for walks got me out. And then I fell down hiking. With 3.5 miles to go and the sun waning, I messed up my left leg. No one believed how bad that was either. So I did the best I could. I limped for a couple years. No biggie. I went for shorter and shorter walks. I still danced as best I could. Then I twisted my sacrum. Finally, by lying about what happened, I convinced a doctor to get me into physical therapy. I limped less.

And my period ever so subtly kept getting worse. I had these horrible things called Essure coils put into my fallopian tubes as a form of permanent birth control. I’d given up on The Pill and the risk of pregnancy wasn’t something I wanted to continue facing. Sex became an experiment in torture after that. Any deep thrust was like a knife inside my gut. And my period, yup, kept getting worse. And slowly, I started to bleed in between periods a bit and have discolored discharge.

In November of 2015, I had a period every week. It wasn’t constant blood, just one massive clot every Wednesday. Seriously. Every. Wednesday. So I made an appointment with a doctor to talk about that and an increase in my lower back pain and the leg pain that just wouldn’t go away and about blah blah blah medical history. She was not amused. She was not terribly helpful. She also didn’t really believe me about the pain–except for my period/pelvic pain. She referred me to a specific gynecologist, for an intra-vaginal ultrasound, and for physical therapy. I don’t know if the physical therapy, the ultrasound, or just my body continuing to fall apart was the cause, but inside a few weeks I was barely able to walk at all.

I went back to the doctor–with husband insisting on coming along (yay!)–after literally falling down on the ground because my legs gave out. It wasn’t the first time this had happened, but it was the most shocking and the most painful. My left leg, in particular, felt like there were large chunks of twisted metal in it when I walked mixed in with the feeling of cleavers. The twisted metal and cleaver pains were new. An MRI, some x-rays, and a physiatrist appointment later, I was getting epidural cortisol injections to my spine. They helped a little. The physiatrist said that the amount of pain I was in didn’t make sense based on the testing. Then he added something wonderful. He said, “There must be something else going on.”

When I finally got in to see the gynecology specialist, I had yet another intra-vaginal ultrasound. This one with saline because she thought I had uterine polyps. She was right. That experience was so painful I could barely stand afterward, let alone walk. I was scheduled for a hysteroscopic polypectomy. That also helped with a little of the pain. Again, I was told there must be something else.

After those two procedures, chiropractic and physical therapy visits were more useful. I could get from the bed to the bathroom without resting. I could eventually walk from my car to my appointments without gritting my teeth or taking breaks. The blood in between my periods was gone, but my period pain was no better. It was still getting worse, and the rate of my cute little decline had increased as my physical activity had decreased.

In May, we moved to San Diego. In July 2016, I wept, yelled, and pleaded my way into laparoscopic surgery to remove the Essure coils (and my fallopian tubes because that’s how that’s done) and to look for Endometriosis. I was in so much pain–backbreaking, mind-numbing, fully crippling, life-hating pain–during my periods that I went in asking for a hysterectomy. She talked me down. During surgery, she found extensive Endometriosis. For whatever reason, whether it was all that exercise I used to do, my low-estrogen diet due to Hashimoto’s Disease, or just plain luck, I had very little scar tissue and no adhesions. She deemed it Stage 1 Endometriosis. When the pathology report came back, it verified Endometriosis, said that my removed fallopian tubes showed not only a bunch of endometriosis, but also evidence of a previous burst. It didn’t specify if that was from an Essure coil puncturing a tube or from something else.

23 years after first seeking help, I got it. My uterus prolapsed mild-moderately after surgery. Lupron wreaked havoc on my body after surgery. But, I’m figuring out how to walk again. It’s arduous. It’s frustrating. It’s painful. It’s also working–slowly. This is part of what was so hard about today.

All those little mentions of non-Endo pain mostly have to do with another health condition called Ehlers-Danlos Syndrome. It’s a collagen disorder. People with Ehlers-Danlos are extra flexible and are prone to dislocations, subluxations, sprains, and the like. It also takes us longer to heal. And there’s a higher rate of Endometriosis among Ehlers-Danlos sufferers than among the general population.

And I’ll type this again for my own stubborn benefit: It takes me longer to heal. I am no longer fast. I am no longer physically strong. I have trouble lifting a gallon of juice, let along a hay bale.

And not only did I finish dead last today, I couldn’t even speed up for the photo at the end. I just couldn’t. It wasn’t physically possible for me to go faster. I was already hiding a limp and pretending to not be nauseous. Lisa said not to worry about it, to keep going at whatever pace I could manage (thank you for that). But I do worry about it.

I used to keep myself going because even if everything hurt, I could still walk. As long as I could walk, I would be okay. And I know it’s been less than a year since surgery. I know that I’m still clearing hurdles, even if they are only 3 inches tall.

I also know, as of today, that I have to find new ways to define myself. Because the effort to get well is more important than my notions of who I am.

I am no longer fast. I am no longer strong. These are things I need to accept because, in hindsight, holding on to those two identifiers so desperately probably did me more harm than good in my past recovery endeavors. Pushing myself to get to a goal is not something I can do anymore. The risk of long-term harm is too real.

The difference between being able to physically get myself out of bed or not is as small as turning incorrectly or walking too fast. I have to be okay with just finishing. I have to be okay with not finishing. Because I have to be okay.

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Sarah, thank you for sharing your story with us and for inspiring us to keep seeking our own answers. We celebrate you today and do hope that it has gotten easier over the year. We hope that you’ll be able to do the things that truly set your heart on fire. Sending you lots of hugs!

 

 

#31 Days Of Endo ~ Shiru Muraya

Day 12 🙂

Endo can push you to the wall, and force you to give up some of the things that you were so sure you couldn’t live without. Then, what started off as a diet becomes a lifestyle, a way of life. Shiru Muraya shares with us her journey of pain, courage and a new found hope.

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My periods begun in high school. To be more specific, mine begun while on a fantastic holiday in Naivasha where I now had to explain to everyone why swimming was not an option.

 

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I am now a 26-year-old daughter, sister, cousin, niece and, for 1 year now, a proud wife.

From the information I gathered, my endometriosis began in high school when I was around 17. The period pain intensified. I would narrate the pain to my mum she’d tell me that it is okay, what I need to do is 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 for me birth control pills. The relief was instant, the pain decreased. At such a tender age, not knowing the side effects of the pills, I began to experience anxiety, depression and heart palpitations. I was a newly initiated health freak and I got to researching. My conclusion was that this method was not going to work, so stopped taking them and this disrupted my menstrual cycle. I discovered that I loved to read about health and wellness.

 

I became 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 that it has been ten years and counting. The diet change made a small difference in 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, I was eighteen and fatigued, and still not aware I had endometriosis. I continuously blamed myself for not being good enough. I told myself that I was lazy, and started exercising 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 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 that 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 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, the ovarian cysts ruptured, and I has no idea what was happening when they ruptured. 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 enough to wait for my appointment.

 

In the morning, my boyfriend insisted on accompanying me to see the doctor. When I got to the clinic, the nurse took my temperature and blood pressure asked me how I felt and she 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 the cyst had ruptured and I was experiencing internal bleeding.

 

He drafted a letter for an emergency laparoscopy surgery to be performed the same day and off I went. 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, and came back 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 stabilize my hormones and diminishes the pain significantly. I take it for six months and it keeps me going through the year.

 

Early 2017, 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 had chronic backache, pelvic pain, fatigue, fainting and hair shedding. For one year, I had been deemed ‘overwhelmed’ at work, but I was too embarrassed and ashamed, to share the real story.

 

The challenge of endometriosis meant that as an outgoing lady, I was easily reduced to a crying helplessness due to the pain, fatigue, confusion, frustration. Chronic fatigue can make a professional career difficult.

 

Let’s just say I was a mess. After some deliberation with my family, I made the decision to leave employment and take care of myself. Some said it was a drastic decision, but it was necessary for my sanity and that of those around me.  I have taken 8 months to recuperate and regain my balance. It has been a lot of sacrifice.

 

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I had to sit and really think about the quality of life I wanted. After quitting my job and sleeping for like two months, I began to research more and more on diet and Ayurveda. I started to eliminate more items from my diet for the long haul. I mentally prepared myself for a transformation. This led me to transitioning from pescatarian to vegan or whole plant-based diet, giving up ALL caffeinated drinks and swimming at least 5 times a week. Ladies, this truly has been a transformation. My body, mind and spirit have been restored. I no longer need days of auto pilot to go through my menstrual cycle. During this transition, I fought hard with myself as I slipped back to cheese or bread. This is not a diet for me, it is my lifestyle now. My symptoms are not all gone, but they have subsided.
In my time off the corporate world, I’ve concentrated on my business @Urban.bantu. A business I had started last year in my kitchen. The facts are out there, that lotion, detergents and beauty products have chemicals that elevate estrogen and cause more harm to us. My history with eczema, acne and un-even skin tone brought about the curiosity to explore DIY cures. I currently offer whipped body butters and African black soap with more products to come in this year.
I have a new spark in my life, I have learned the value and greatness of self-care, sacrifice and family. I will NEVER sacrifice my health and well-being. Remember that no one will understand what you are going through until you speak up. As I continue this journey, I aspire to help endo warriors through their journey of healthy living.

You can follow Shiru on Instagram and connect with her on Facebook. You can make your orders here.

Thank you for sharing with us your story, Shiru, and for inspiring us not to be afraid to make seemingly drastic decisions for our benefit. We hope that you will have more happy, painless, boisterous and hope-filled days. We are looking forward to the other endo-friendly products that are in the pipeline.

 

 

#31 Days Of Endo ~ Genevieve Byrt

Day 9

Endometriosis affects 1 in 10 women around the world. I am so thankful for the internet, it has brought information and community closer to us in Kenya. One of the blogs, that I have followed for a few years is Bloomin’ Uterus. Lisa writes very informative posts on Endo and how it affects out the body, she also shares Endo stories.

 

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Our Endo warrior today is Genevieve Byrt’s story. She first shared her story on Bloomin’ Uterus. She runs Finding Fortitude, where she writes about her endo journey, encourages other endo warriors and shares the wisdom that she has picked up along the way.

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Genevieve felt the symptoms of Endometriosis since her first period.  She was diagnosed when she was 21 years old, and is now 28.  She shares her story with us today.

Genevieve’s Journey: I thought I was dying.

 

I was on a family holiday, lying in our camper trailer bed with my mum and my little brother. I was 12. I think my poor mum, who was a nurse, was at her wits end by sunrise, and had given up trying to diagnose me after an hour or so. The pain in my abdomen had me convulsing, crying and curled up into a ball clinging my legs to my chest for dear life while I rocked back and forth. I was given some Panadol, and while my mum and brother proceeded to sleep, I made the cold, windy walk up the hill to the campsite toilets over a dozen times throughout the night thinking, “This is it. I’m going to be one of those news articles, where a young girl dies a mysterious death in a caravan park”. I remember sitting in the showers in the middle of the night, on my thongs (so I didn’t get butt tinea from the shared bathroom) and just feeling like I should have been at a hospital. But I was so desperate not to cause a scene or be put on to a helicopter in front of the entire Robe Caravan Park.

 

Alas, I was not dying. I was ‘becoming a woman’. Well, I tell you what, my mum was extremely excited (and relieved) when I informed her of the milestone the next morning, but I, on the other hand,  was mortified and equally terrified at the thought of this happening on the regular. If this was to be normal, I was pissed off that nobody warned me that ‘period cramps’ felt like hot lava and barbed wire having party in my uterus. Over the next six or so years, I missed a fair whack of school, wrapped up on the couch with hot water bottles and blankets, and a plethora of pain medication – much to the confusion of my parents who wondered how I could possibly be in that much pain. I skipped classes regularly to go and hide in the change rooms so that I could lie on the floor in the foetal position and try and survive the rest of the day.

 

For the next 10 years, I was assured that this pain was normal, and that all girls go through it. I was admitted to hospital twice with ‘suspected appendicitis’ when in actual fact, it was just a period. Lucky old me also didn’t have to wait a precise 28 days. Oh no. I was blessed to have 10, 65, 4 or 27 day cycles. They were never normal and they were never short. Because of this, teachers didn’t believe me when I would tell them what was going on – “you used that excuse the other week/day” they would say. I suspect (sorry mum) that my parents also thought I was just piking out of school most of the time.

 

At one stage in my life, I even had a boyfriend who laughed in my face when he saw me fall out of bed after rolling around in agony whilst howling with tears. That same night I was having difficulty seeing clearly because the pain was, literally, blinding. I could barely walk, yet I was told to drive myself to the hospital while he begrudgingly slept in the passenger seat, because “calling an ambulance is a bit dramatic, don’t you think? I will go, but for the record I think you’re overreacting”. So I did (this was also before I grew a backbone and some balls – not literally). Word to the wise ladies, if this is something you are facing in a relationship, kick them to the curb! Even typing this out makes me mad.

 

Now, before this story gets any darker, I will stop with the descriptions. I’m sure you get the picture. There were a lot of times where this wasn’t an issue and I got to live a normal life. I am in a far better position than so many other Endo Warriors. For that, I am beyond grateful and humbled.

 

However, pain that stops you from living your life and carrying on with normal day-to-day activities isn’t normal. Let me just repeat that:

 

IT’S. NOT. NORMAL. Don’t let anyone tell you that you are overreacting. Or that it’s a normal part of being a woman.

 

Unfortunately, “there is delay in diagnosis of between 7 and 10 years. This is due to girls and women normalizing symptoms as well as doctors normalizing symptoms when women do finally seek medical assistance. Early diagnosis and treatment reduce the long term impacts of Endometriosis and frequency of invasive treatments and fertility treatments. Raising awareness is the first step to reducing the delay in diagnosis across all age groups. Education about menstrual health, what is normal and what is not is vital in younger age groups to break the current cycle of delay in diagnosis and flow on affects for the next generation (Ballard, K. Lowtan, K. Wright, J. 2006 & Dessole, M. Benedetto Melis, G., Angioni, S., 2012)” (https://www.endometriosisaustralia.org).

 

I hope that one day, more open and honest discussions about periods can happen, and help is offered to girls at a much younger age. This March is Endometriosis Awareness Month, and I plan to be involved in this in any way that I can. We need to raise awareness of this chronic illness, so young girls like me don’t wait 10 years to get help.

 

If you look at my more recent Endo situation, this is where I am at:

 

My current varying symptoms include extreme pelvic pain, severe back pain between my hips (which gets far worse if I eat any gluten or stay seated for long periods of time). I get shooting pain down my legs, experience hot flushes, night sweats, anxiety and extreme fatigue. Add on to this more than occasional bouts of IBS, sore breasts, headaches, irregular bleeding and emotional fluctuations that I can never keep up with. I have suffered with these symptoms for over 15 years and not just when I have my period (if only it were that simple!). I have had two laparoscopies, my first when I was 20 and the Gyno ‘found nothing’. Fast forward 7 years to my second surgery, where not only was there Endo, it was so severe that my surgery was extended from the expected 30 minutes to almost two hours, where they burnt off lesions throughout the left side of my outer uterus lining, and cut out adhesions on the right side which had fused my bowel to my abdominal wall. I still remember seeing the doctors face –I wish I was a mind reader- I could have sworn he was surprised and almost felt ashamed that he had initially said to me: “there’s probably nothing wrong with you if nothing was found in your first laparoscopy”. Oh how wrong he was, and this was said to me by an Endometriosis specialist. In the almost two years since this surgery took place, my back pain, digestion troubles and fatigue have only increased. The one upside is I finally found a new and fantastic Gyno who has treated me and my Endo from every imaginable angle. I am now in a position where I am managing my pain with a combination of nerve-blocking medication, pain relieving suppositories (fun!), and being put on the FODMAP diet which eventually led to me finding out a huge trigger for my poor operated-on-bowel, was gluten.

 

So, aside from saying goodbye to three big loves of my life: pizza, pasta and bread, things could totally be worse, and I know right now I am doing ok, but tomorrow could be a totally different story. I have started my blog to start sharing my story, and help get word out there.

 

I am only one spokesperson for women with Endo, but I feel like I am not alone in saying most of the time, we just want to be understood and accepted, and our pain and suffering to be acknowledged appropriately. This March is Endometriosis Awareness Month, and I will be wearing yellow every day to show my support and involvement. 1 in 10 women have Endo- think about how many women you know. Chances are more than a few of them have been suffering in silence for a long time. I honestly believe that if we want things to change, for young girls to get diagnosed and cared for earlier, then it’s the responsibility of everyone, to recognise what Endo is, and what toll it takes on women all over the world. How will you show support for women with Endo this month or in the years ahead? What will you do differently?

 

There are so many resources and links with information online, but the other thing that can be really informative- is to ask us, the women with Endo the questions. We live with it every day, and when someone shows interest or concern, that’s one more person who is on their way to understanding and accepting and helping us see some change.

You can follow her blog, Finding Fortitude here.

Thank you for sharing your story, Gen. Keep shining your light. Here’s to pain-free days and deep-belly laughs.

#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 ~ Trish Barasa (Part 1)

Day 7 🙂

Oh, that our voices will be heard. We hope that policymakers, health care providers and the society at large will hear our cry and help us.

Endometriosis is real! It is as real as the air that we breathe. Trish Barasa gives us a glimpse of her life as an Endowarrior. The highs, lows, and oh-my-goodness-not-this-too.

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Trish is a strong and deliberate warrior. She is fighting much more than Endometriosis.

My name is Teresa Barasa, and I am an endo- survivor, and warrior. My friends call me Trish. I am 37 years old and a loving mother of 2 children. I am a socio-economist by profession currently a public policy scholar at the Strathmore business graduate school. I am a free spirit who finds gratification in serving humanity and impacting lives around me. It gives me a deep sense of satisfaction knowing that I have in my limited human capacity uplifted a soul and lit another’s candle. I smile at the slightest ray of light and break into laughter in sparks. Conversely, a dying candle saddens me, whether my own or another’s. Darkness leaves me desolate and impotent.

 

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I had an early menarche, judging from my classmates, relatives, and playmates. I vividly recount of the events: I had just turned 12, and this particular evening was the eve of my uncle’s wedding. Relatives from upcountry had convened in our house for the event. To my awe and dismay, I woke up soaked in blood. My morning was wrecked. All the home science lessons on menstruation vanished into thin air in my current reality- and so my day began. As fate would have it, I continued to stain myself at the wedding bringing my predicament to the attention of female relatives who took it up to clean me up and improvised a pad for me with cotton wool. They wittingly introduced me to the birds and the bees story. It never stopped flowing for a whole week staining all through – I tied a sweater around my waist to conceal stains.

 

From the word go it was staining and painful. And it has never disappointed since – only I became better with time in treating the pain using non-steroidal-anti-inflammatories (NSAIDs) and had access to better pads. A quarter a century later, my cycle can best be described as shorter than the typical ‘moon phase’ of 28 days, sometimes as short as 2 weeks with a heavy flow that on various occasion stretches to 14 days. A friend jokingly refers to this phenomenon as the ‘long rains’. I must confess I sometimes can relate to the bleeding lady who touched the hem of Christ’s garment. Strangely, this is my normal for I know no better, when it comes to my menstrual cycle.

At the age of 25, an acute attack of gastritis brought me to the verge of a mental breakdown from excruciating pain, prompting me to crawl to the Nairobi hospital ER. I brought everything to a standstill. I was in a lot of pain and I refused for anyone to touch me even the doctors who should be treating me. I was eventually sedated and admitted for extreme abdominal pain. A team of doctors was setup to attend to me who included a Gastroenterologist, GP, Gynecologist and Psychologist for reasons that I was manifesting mental symptoms. I had had several painful abdomen moments before but this one had literally run off with the red line. On evaluation, I was diagnosed with peptic ulcers from an endoscopy and a pelvic scan report showing tissue in the pouch of Douglas (POD). The findings from the pelvic scan led to a scheduled laparoscopy. The gynecologist, a renowned specialist in the female reproductive system explained the need for what he referred to as a non-invasive surgery for the diagnosis of a condition he had clinically diagnosed me for – endometriosis. My first encounter with a condition that has since redefined my life. Procedurally, I had surgery. This was followed by a biopsy which proved that the tissue excised from the POD and deposits from the region near my rectum was indeed endometrial tissue. 

 

This marked the beginning of my journey of living with endometriosis. First was the diagnostic surgery that also doubled up as a remedy for endometriosis through ablation of endometrial tissue that was visible. I was thereafter presented with treatment options that were mainly hormonal for the suppression of estrogen.

 

There is no cure for endometriosis, at least not yet. But there is a choice of treatment plans that different doctors will propose depending on the severity of your endometriosis, affected organs, and expectations to alleviate or improve the situation. For me, the pain was unbearable and the effect on my rectum, bladder and related systems was inexplicable. The thing about endometriosis is the deposits that are wrongly placed will respond to the follicular and luteal phase and shed off in their misplaced locations just like the endometrial tissue in the uterine cavity: these as responsible hormones fluctuate along with the menstrual cycle. The result is a host of abnormalities, mainly inflammation, pain, and infections. 

 

I have suffered menstrual symptoms (painful cramps, long menses, short cycles, bleeding and spotting in between periods), urinary symptoms (urinary tract infections, painful urination, and incontinence), digestive symptoms (bloating, constipation and diarrhea), pelvic inflammatory diseases, severe migraines, musculoskeletal symptoms, and chronic fatigue. For these, the doctor proposed treatment through the hormonal implant Zoladex for 6 months. Zoladex is a gonadotropin-releasing hormone agonist (GnRH) which is used in the management of endometriosis by both alleviating pains and reducing endometrial tissue. Zoladex acts by suppressing the production of estrogen thereby reducing the formation of the endometrial lesions consequently the pain. Zoladex implants are given through injections that are administered one in a month. Besides Zoladex, I have used Depo-Provera for a year, combined oral contraceptives and other related medications to suppress estrogen.

 

To date, I still contend that Zoladex treatment is but a necessary evil. I say this because I suffered the drug’s worst side-effects. For 6 months, High blood pressure, headaches, hot flashes, mood changes, low libido, breast tenderness, constipation, nausea, insomnia and vaginal dryness became the order of the day. As I counted down the 6 injections, my day to day abilities were suffering the side effects. Note, endometriosis in its very nature affects every other part of your system; these effects are compounded by the medication used to manage pain, bleeding, and to treat the infection or improve the digestive processes. 

 

Pelvic pain is a common symptom but many others may occur depending on the site of the deposits. The pelvic pain sometimes can be as a result of inflammation processes consequently infections from the endometrial abnormalities. I am said to have a retroverted uterus. Not sure if this is endo- related but it exerts pressure on organs in my pelvis.  

 

With deposits occurring at the POD and spread within the rectal and bladder region, my pelvic pain was accompanied by constipation and urinary problems. When hardest hit by constipation, I have found myself starving myself so that I don’t have anything to excrete because defecation is a nightmare. As gross as this may sound, constipation can be so severe resulting in heavy bleeding that needs a pad to the rectum and time to heal. As a subsequent to constipation is diarrhea leaving one depleted and dehydrated. In addition, is bloating arising from the digestive abnormalities which can be very painful. Right next to the rectum is the bladder which is equally affected on a regular basis mainly through urinary tract infections (UTI). From experience, I can almost predict a UTI even before it develops.

 

Against every dolorimeter of pain, against every end of the road, against every recurring symptom, again every escalating situation has been a blow on my mental status. Perhaps dead brain cells. Dealing with ovarian cysts is another hurdle every woman with endometriosis has to navigate. I have personally had an operation from torsion and still have to deal with the menacing cysts which affect the flow, pain, and infection.

 

You can read part 2 of Trish’s story here.

Trish, I pray that you will find strength for each new day and healing. May you touch the hem of the garment.

#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.