#31 Days Of Endo ~ Trish Barasa (Part 2)

You can read the first part of Trish’s story here.

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Cyclically, there have been instances of extreme hypoglycemia which I mostly just conclude is endometriosis related as it correlates with my cycle to the T. There have been instances when the hypoglycemia has left me perilously faint in public. Nowadays I carry a glucose tab to fix this emergency should it occur at the wrong time and place. On the flip side, this is another of my indications that my flow is here and this may last through the cycle. This is often accompanied by cravings for sugary or oily foods. 

 

I am currently not sexually active, but back then when I was, endometriosis would affect my sex life because of dyspareunia- or what the layman refers to as painful sex. In the past I was fortunate to have a long time medical boyfriend who understood this and was supportive- adjusting accordingly. It is hard to explain the same to other men making me shy off sexual activity and relationships altogether.

 

Now I understand why the psychologist was called on board on the material day when hell broke loose for me. It is never normal. The brain suffers a blow – nasty headaches and general malaise are proof. Mood swings and irritability have characterized my persona for a long time though I have learned to manage my emotions. Remember this is also a side effect of the medication. At some point before my surgery, endometriosis symptoms were adverse and due to my ignorance, the tracking of these symptoms was poor so all I remember of my past cycles is the pain. All I knew was long painful periods. I was unaware of the association with other conditions. But after my surgery, the awakening began, I started understanding endometriosis. In addition to the enlightenment, a long remission followed the surgery. 

 

The Side Effects

 

The burden of drug side-effects and drug dependency is heavy with endometriosis. Sometimes I am not sure what is harder to deal with, the endometriosis or the side effects of the treatment plans. Every drug that is consumed has a side effect, a cost-benefit analysis needs to be done.  Archetypally, I have in addition to this suffered dependency to pain medications that have CNS action. It is not strange to find me conjuring non-existing symptoms to get that strong painkiller that gives a high and a calming sedating effect. I may as well have used surgery medication in the process. On the other end are drugs whose side effects are harmful, affecting other bodily functions, systems, and organs. 

 

I became a hypertensive at the age of 27 years for various reasons (I have an autoimmune disorder) but the endometriosis compounded the situation. I am now on two drugs to manage the high blood pressure: a beta blocker and an angiotensin-converting enzyme inhibitor (ACE). Remember these too have side effects. The ACE has left me with a chronic cough whose treatment is best with syrup containing codeine which is very addictive. I also suffer from drug-induced peptic ulcers from non-steroidal anti-inflammatory used to manage inflammation and pain from endometriosis. To counter their effect I have to take the NSAIDs with proton pump inhibitors (PPIs) to protect my stomach from further irritation by reducing stomach gas production. Only God knows the long-term effect. Common short-term effects are constipation worsening my endo triggered constipation. Regular antibiotics used to treat the occasional infections makes me susceptible to yeast infection as it alters the normal flora in my system. I always have an antifungal at hand should the situation move to yeast infection. I am mentally depleted and fatigued 24-7; it takes a lot of internal push to get going but the energy levels are mostly so low and fatigue always looms.

 

Progressively I have learned to live with endometriosis. I doubt I can properly weigh any of these symptoms as better or worse. I treat myself more often than not as it saves me time spent in the ER and money paid in for consultation as I am in between jobs and do not have a medical cover.

 

Through the Endometriosis Foundation of Kenya Whatsapp group, I have met fellow women, young and old alike, some with shared backgrounds all affected by endometriosis. I interact with and encounter women suffering similar and disparate forms of the condition. I get encouraged and encourage fellow sisters, I inspire and get inspired, I get tips and share tips.  I get first-hand experiences from others and I’m able to compare services and treatment plans. We share doctor’s experiences. We also have endometriosis experts who walk us through the maze of the condition as different situations arise. I have learned new concepts. One of the greatest lessons I have learned from the group is about the importance of diet in managing endometriosis; the foods that boost endometrial tissue growth both inside and outside the uterus cavity and those that suppress this estrogen-dependent activity. From this group, I am now proudly off milk and dairy products and have more daunting tasks through diets and exercises which I am confident I shall achieve. 

 

The biggest challenge I have experienced is access to specialized health care while in between jobs. Dealing with flares, monitoring progress, accessing treatment and lifestyle changes all come at a cost and this can take a toll on anyone whether or not one has a proper medical plan. But like any other terminal condition, the dangers of catastrophic expenditure are rife for women living with endometriosis, and especially those not gainfully employed or struggling to eke a living. Secondly, drug addiction requires close monitoring, proper management of treatment and rehabilitation. On infertility, I am not affected but the reality is with us.

 

Anatomically, my coccyx (the tailbone of the spine) was also not spared, and this has adversely affected my back and childbearing process in one way or the other. I cannot sit for long, and though rare inflammation of the coccyx and neuralgia causes unbearable pain requiring hospitalization and physiotherapy. 

 

Fortunately for me, I have been blessed with two children. I had my first child early in my life and was able to conceive and deliver my second child after the endo-surgery. The pregnancy was however closely monitored. 

 

Finally is the challenge of adhesions from the surgeries. I am counting about 5 surgeries in addition to a caesarian section and an appendectomy I’ve had. The scarring affects organs manifesting through pain, organ effect and bodily functions. I must say that I have in the recent past enjoyed being in remission, however,  the situation is gradually deteriorating and reverting to previous critical stages. I will soon be require to go for a review.

 

I would commit a travesty of justice if I concluded my story without identifying policy gaps in the management of endometriosis.

 

    i)  Make specialized care for endometriosis affordable and accessible
    ii) Research widely on management of endometriosis and treatment. Remember many organs are eventually affected and the condition is debilitating.
    iii) Research on genetic predisposition and association with other autoimmune disorders.
    iv) Funding of research and building the capacity through partnership with research institutes and medical institutions.
    v) Proper categorization of endometriosis as a debilitating condition requiring specialized care to avoid misdiagnosis and resultant deteriorating.
    vi) Aggressively research on estrogen specific to the Kenyan woman.
    vii) Regulate reasonable adjustment at work place to accommodate endometriosis patients during a flare and long term therapy that my affect their ability to carry out normal duties and redeployment to a more accommodative position.
    viii) Separate disability leave from sick leave
    ix) Early diagnosis can help prevent infertility from untreated endometriosis.
    x) Health workers should be trained in new guidelines and protocol in the management of endometriosis.
      You can connect with Trish on

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    Trish, thank you for sharing your heart and your life with us. I pray that you will find grace for each day and that you will touch the hem of the garment and find your healing. You are a warrior, you have taught us a lot through your story.
    Here’s to good health and many days filled with energy and contentment.

 

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#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 ~ Amina Mohammed

Day 2 of the awareness month 🙂 I hope you are all keeping well.
Our second Endo warrior is the graceful Amina Mohammed.  I met Amina for the first time late last year during a Yellow Endo Flower meet up. She is a sweet spirited fighter.20180302_142504_0001
My name is Amina, I am 27 years old and an early years teacher. Working with kids and being near the sea bring me joy.
Where it all began
My periods started when I was 12 years old. From the first day I had painful cramps which were accompanied by throwing up and a running stomach.
I remember being house bound for the first couple of days of my cycle because of the pain. I always had an old bucket for throwing up next to me, when it got too much, I just camped in the bathroom, with the cold floor easing my pain. All this time I knew that periods are painful and what I was going through was normal.
In primary school, I heard a story that gave me some hope; people said that if you have painful periods, when it’s time to give birth your labour process will be painless.
When I was 19, I started getting constant sharp, stabbing pains in my abdomen, that’s when I knew something was wrong. I was referred to a gynae and she sent me for a scan and when the results came out she told me I had Adenomyosis and that I would have to be put in to early menopause. Imagine the trauma my 19 year old self felt, the first time I go to a gynae and she says I have a strange sounding disease and the treatment is menopause!
After a while I decided to seek a second opinion and that’s when I was diagnosed with Endometriosis. The new doctor explained it well and I had my laparoscopy  where he found many endo lesions on the left side of my pelvic wall. The recovery went well until I started Zoladex injections, the side effects were awful: hot flushes, mood swings, and depression. Eventually I finished the treatment and I finally got some relief.
The thief within
Endometriosis has stolen my energy and I am constantly fatigued to the point that I have to force myself to get out of bed.
Alone
Endo made me feel so alone because I felt that no one understood what I was going through. Fortunately, last year I found a very supportive group of ladies in Endo Sisters East Africa. It was such a relief to finally meet people who understand endo and get me.
My struggles
I also struggle with bloating when I eat the wrong things, recently I bumped into a person I had not seen in years and they thought I was pregnant.
I am working on the endo diet, I’ve given up dairy and red meat but my biggest struggle is wheat – I just can’t seem to give up bread and chapati.
My lessons
I’ve learnt that no matter what, somehow I can get through the pain and dark times. It’s also really comforting to know that I am not alone, a support group is really important. Something that I learnt from you is to be my biggest advocate, that is still a work in progress but it is awesome advice.
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My favourite flower is a rose because I believe that the thorns represent the struggles we go through and despite the thorns, the rose still blooms and becomes beautiful.
Thank you for sharing your story with us, Amina. Keep fighting and inspiring.
You can read the first story in this series here.

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.

 

 

 

 

5 Ways To Navigate The Endo Inspired Energy Rollercoaster

I seem to have found the spring in my step. Some mornings I wake up feeling like an Energizer bunny, it is such a good yet surreal feeling. One of the aspects that I hate about Endo is how it hampers with energy levels.

I went from being an energetic teen to a mostly-tired human being. Sometimes the fatigue was physical, other times it was mental, but it was altogether overwhelming. I’d wake up in the morning after an 8-hour sleep feeling like I had been digging all night with interval naps on a bed of thorns. An exhaustion where even your skin is tired. It is hard to glow when you feel so tired. It is hard to be excited about anything when your whole being is just focused on mere survival, no thriving, just living.

Over the last year, I have found a few things that have helped me navigate this tumultuous journey.

  • Keep a Period Diary

My period diary has shown me that my cycle affects my energy levels. This has been so critical to understanding my body has also helped me be kinder to myself and prepare in advance. Putting systems in place to help me on my low energy days makes them more manageable. I am most exhausted when I’m on my period, on day 1 a flood of sleep sweeps over my being. Once I have slept, I wake up feeling brand new.

I have more energy to arrange and do administrative work after my periods, so I schedule such tasks after my period and prepare for this low energy phase by doing them in advance.

  • Check your weight

After I took Lupride, my limited level of energy diminished, I was now getting energy from my reserves. I was surviving on the morsels. Meagre tasks felt like they were so much work to do. Pregnancy caused my weight to yo-yo and the hormonal imbalance also took a toll on my energy. I didn’t look overweight, but I felt so heavy.

Now that I have lost some weight, I am feeling more energetic. Ready to get back to an active lifestyle this year.

  • Check your diet

The fastest way to deplete my energy is to eat too many carbs. My body is in a somewhat complicated relationship with wheat. It tolerates it in small quantities if I have too much of it, I bloat, get cranky, fatigued, constipated and get canker sores. That is a horrible combination.

My pick me up drink is ACV, it has been so invigorating, though my three-year-old daughter is so high-nosed about my elixir. I wake up early to drink it in peace because, in her words, ‘it stinks’, but I love it. The benefits far outweigh the bad smell. It’s an energy drink sans the hidden sugars, preservatives, and palpitations.

  • Avoiding mental stress and fatigue

We often underestimate the effect that mental and emotional stress has on the body. The body and the mind are connected, when you feel drained emotionally you may also feel physically fatigued.

There are days I have woken up after 10 hours of sleep, physically rested but mentally exhausted, which means still unable to perform the tasks that I need to do. I am more sensitive to my emotions because they affect how much energy I have at my disposal.

  • Find something that fills you

Self-care is absolutely important. When you are fatigued it is hard to do things for yourself, but these small things are great pick-me-ups.

I am writing a list of the things that make me happy so that I can plan to do more of these things and fill my cup. You can’t pour out of an empty cup, when you fill yourself then you have something to give.

Here’s to more energized and happy days.

Meltdown

Walking with an irritable, overstimulated and exhausted toddler is like carrying a ticking time bomb. It is only a matter of time until it goes BOOM, and you are left dealing with the shrapnel. So you hope and pray that the bomb goes off in the comfort of your home. This tense situation is the reason I stopped going shopping with my little girl at lunch time. It was just a recipe for disaster. Sleep is like the ocean, sometimes it comes subtly, other times, it rages and turns calm water into volatile waters. One minute she is calm, and the next she is on the floor wailing, all because she wants to sleep.

After 1pm, you will rarely find me tagging along Miss K. If we didn’t go together in the morning, I go by myself. And shop in peace, while she takes her afternoon nap in peace. This arrangement works for everyone.

Going shopping when hungry is a horrible idea. Everything calls out your name, and your otherwise disciplined body wants everything that it lays its eyes on. You go from craving chapati, to ice cold soda, to chocolate, to ice cream. to chevda,  to chips. And you ask your body, ‘Who are you? How can you possibly desire all these things at once?’ The thing is, hunger just wants to be sated. It makes you desperate. You become like an indecisive little child who doesn’t want to share. Your body screams ‘Mine!’ every time you pass an item that it likes. It has a meltdown.

If you give in to the all the cravings, they taste good while you are eating them but a few minutes later, you belch and bile rises to the top of your oesophagus. You are instantly disgusted by your actions. Regret fills your belly.

To avoid the meltdowns and body tantrums, I have identified my triggers. Hunger is one of them. So I try to go shopping when I am full. I have my oat smoothie or sweet potatoes before I leave the house to avoid eating a mandazi later. When I am hungry, mandazis look like manna and Quail looked to the Israelites in the desert. Heavenly.

There’s an exhaustion that sleep cannot solve. This fatigue doesn’t befall you overnight like a thief in the night, it fills up slowly like the waning drops of rationed water in a bucket. It takes being aware of your emotions and fatigue levels every day or week to notice the exhaustion, before you find yourself in a meltdown.

Understanding when you are most vulnerable helps you to be proactive, this minimizes your chances of having a meltdown.