#31 Days of Endo ~ 11 Tips for Mums of Endowarriors

Day 13 🙂

I am taking a short break from sharing the stories, to share some tips for mums of endo warriors. More girls in their teens and early twenties are getting a diagnosis, more often than not, being diagnosed with endometriosis throws them and their families into confusion.

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Endometriosis is one legacy no mother ever dreams of passing on to her daughter. The reality of this statement echoed through my mind in 2015 as I nursed my daughter. When I held her and stared into her little eyes, I felt a strong desire rise up within me, to do something to make sure her story was different. That the story of her generation would be different. A few months later, Yellow Endo Flower wsa born.

Along the way, I have met Endo warriors, a beautiful community of women fighting the same battle. We are one in ten women.

There are mothers reaching out, wanting to help their daughters navigate the murky waters. It is hard for them! Let no one tell you otherwise. Watching your little girl lay in foetal position because of pain is heartwrenching to watch, month after month.

For the mums, here are a few things that you can do to help make the journey a little easier for your daughter:

1. Believe Her

When she tells you that she is experiencing pain with her period, believe her. Do not try to minimize or trivialize the pain. Pain is the body’s way of asking for help, if we do not listen to its whispers, we will have to stop our day-to-day activities when it screams.

2. Be Present

Buckle up, dear mama, and make the decision to be present for the long haul. The journey may not be smooth, but your presence makes a world of a difference.

It may seem easier to just give her money to see the doctor, but, depending on the relationship that you have with her, she may need you to hold her hand and encourage her heart. Waiting rooms and emergency rooms can be very lonely places.

3. Find a doctor who understands Endometriosis

You may be tempted to take her to your Ob/Gyn, while s/he may be a good place to start, it is good to see a doctor who is trained in laparoscopic surgery and who deals with a lot of Endometriosis cases. Find a doctor who has a good bedside manner.

You can find referrals in your local Endometriosis community. If you do not know where to begin, you can send me an email via yellowendflower@gmail.com and I will be in touch.

4. Get informed

Information is power, it is difficult to manage what you don’t fully understand. Read more about endometriosis and how it affects her body. The top searches from google are very informative. There are books for sale online that are good resources.I have been sharing Endo stories in the series #31DaysofEndo.

From the information readily available, evaluate the changes that she can make, and those you can make as a household.

5. Evaluate the triggers

Endometriosis symptoms may be aggravated by things that an endo warrior is exposed to. The only way to establish what the triggers is by eliminating the potential trigger foods and products and keeping a record of the progress.

6. Keep a period diary

Encourage her to actively keep a period diary, to record the pain and other symptoms when they strike so that she can understand the patterns in her cycle. If you are looking for a simple diary to start with, I have written a period diary book titled Bloom, it is available in Kenya for 500/=.  It is ideal for girls and women.

Understanding her cycle will enable her to forecast her energy and work around the flare-ups as she works on managing the symptoms.

7. Ask questions

Note down your concerns on a paper and go with it when you visit your doctor. Ask the doctor to break down the treatment plans and to let you know what you should look out for.

Trust your inner voice and don’t settle for an explanation that doesn’t sit well with you.

8.  Educate those around her

People tend to be less sensitive to what they do not understand. Share with the people around her: her friends, school, and people who live with her, what Endometriosis is, and how it may affect her, that way they may be more understanding and willing to help.

9. Keep a medicine log

Pain and symptom management are an integral part of the Endo journey. Before she starts any medication, make sure you read the pamphlet and make a mental note of the side effects to look out for. Note down any reactions and allergies to drugs so as to mention them to a medical practitioner in future. Keeping a log will also help you to see how much medication she needs to manage the symptoms.

10. Offer psychosocial support

The emotional strain caused by endometriosis should not be overlooked. Many endo warriors tend to suffer in silence because they do not know where to seek help. Find your daughter, someone, she can talk to. Find a support group or forum that she can plug in to, and meet other girls and women who are walking the same path.

11. Keep hope alive

The consistent flare-ups, hospital visits, medication can grey a girl’s dreams. The constant feeling of fatigue and malaise can take the toll on you. Encourage her to write down a list of her ambitions and dreams. When she is well enough to do them, encourage her to pursue them. Celebrate the small steps as you wait to make the big steps.

Do fun things with her, talk to her, love on her and be there for her.

All the best, mama! Your labour is not in vain.

If you’d like to talk more about Endometriosis, feel free to drop me a line via yellowendoflower@gmail.com

 

 

 

 

 

 

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#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 ~ 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.

#31 Days Of Endo ~ Elsie Wandera

Pain changes you, and sometimes it births within you a desire to be the change that you want to see. That is the story of Elsie Wandera, our third Endo warrior on this seriesSimple Photo Spring Quote Instagram Post

 

 

Elsie is strong, driven, resilient and passionate. After struggling to get a diagnosis, she chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about and to support the women suffering from Endometriosis. She is the founder of the Endometriosis Foundation of Kenya.

She first shared her story with me in 2017.

My name is Elsie Wandera and I am 36yrs old. I am a trained Journalist & recently graduated with a degree in Communication – Advertising major from Daystar University. I have experience in Personal Administration and I’ve worked in a marketing capacity for 2 FMCGs. I am also the founder of Endometriosis Foundation of Kenya focusing on raising awareness and advocacy on Endometriosis. I am also the founder of My Heart Scripted where we run a 10-week experience called Purity & Purpose, that helps women pursue purity and unlock purpose.

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The thing that makes me smile is knowing that I have played my part in making the world a better place and seeing other people smile thus.

 

Where it all begun

I started my periods when I was in primary school. I sincerely thought I was dying, I remember I crying in the shower because I could see this brownish flow but I could not tell where it was coming from. My mom then told me it was okay. I remember I had to buy pads, that was exciting as a girl, I even remember how they smelt then 🙂.

 

Managing the pain

The pain begun when I was in high school around the age of 14 or 15. I remember I experienced such bad pain that I had to be in the clinic during the  days I was on my periods. These were formational years for me and I thought there was something wrong with me. I continued the journey with the knowledge that periods are painful and I dreaded the days.

 

Diagnosis and treatment

I was finally diagnosed with Endometriosis in 2006 through a laparoscopic procedure, the Obs/Gyn simplified it for me by telling me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding, it was by God’s grace that he found it because it was one of the things that contributed to the pain.

 

Upon diagnosis, I was put on a hormonal therapy treatment. This was administered subcutaneously every 28 days below the navel line for 6 months. It had the worst side-effects for me among them: headaches, hot flashes, breast tenderness, nausea & vaginal dryness. Once I completed the dose, the effects of endometriosis which include: chronic pelvic pain, painful bowel movement, painful sex & heavy bleeding became worse. I recall lying in an ER calling my Obs/Gyn and asking him amidst tears why it is back. That was when he revealed that it has no known cure and is recurring in nature. What’s interesting is that he requested me to consider getting pregnant soon (I was 26 then) because one of the effects it contributes to is infertility among women. However, this is not a solution, it is a Band-Aid for 9-months that does not guarantee that the condition will not relapse.

 

At 34, I had to go through another laparoscopic procedure where the they removed another ovarian cyst and the adhesions around my uterus. This was interesting because I did not know that surgeons had specific parts of the body they could cut and others they could not.file

 

Endometriosis has affected many aspects of my life 

 

Physically

The condition caused physical pain and as a result I dreaded my period and yet it is a gift from God that should be enjoyed by every woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation, sometimes I called it “the egg-is-moving day.” I was dependent on pain medication and anticipated pain every month which is not the way any woman should live their life. I also stopped eating as the period approached due to the nausea and difficulty passing long and short calls.

 

Emotionally

It was draining because I had negative thoughts and more importantly, because of the research around the condition and what one doctor told me, I knew I would never conceive. At some point I thought it was God punishing me for a life I’d lived carelessly before.

 

Socially

I was always uncomfortable because I needed to explain myself and why I was going through crippling pain. I was conscious and limited in dressing comfortably because for me it meant sagging clothes because of the physical discomfort during my period and the heavy flow. God forbid I’d stain a seat when the flow opened after a bubble escaped, those were messy days.

 

Professionally

I dreaded having to explain my colleagues and leaders that once every month I’d be disabled and sometimes unable to come to the office. It’s interesting that on those days people would still expect me to deliver my tasks and it would seem like it is not as serious as other physical ailments. But over all I never had an issue especially after I learned what the condition was and that it had a name.

 

I have made changes in my lifestyle

The biggest changes I had to make are around diet and physical exercise because I understood the disease and what it would require of me. I cut down on gluten, wheat, dairy and red meats and increased intake of greens, super foods & supplements to ensure I was enriching my nutritional value. Water intake also is my highest priority because it is a natural cleanser.

 

My current challenges

I think sticking to the diet and relapsing to eating unhealthy foods is the greatest struggle. I’ve learned my body enough to know when I’m craving foods, then I try to compensate with a healthy choice.

 

Learnings from the journey and words of wisdom to other women suffering

I think my greatest learning was understanding that my body is different from another woman and I have to prioritize my health, because no one else will if I neglect it’s cry.

 

We also need support from the world and by telling my story I’ve encouraged another woman to know she is not alone. Therefore, tell your family and friends once you are diagnosed and stop self-medicating and seek professional advise because the body was not built to constantly rely on medication. We also need support from government, employers and medical industry for the sake of all the women in finding a cure and supporting them in every way we can because it takes away our most reproductive years of our lives which we cannot relive.

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Every woman’s pain is valid and if doesn’t matter that you don’t understand it matters that you stand with her as it is not easy to bear.

You can connect with Elsie on Facebook and join The Endometriosis Foundation of Kenya  Facebook group.

Follow her on Instagram and Twitter.

Thank you, Elsie, for sharing your story with us. Your voice matters and your labor is not in vain. Keep blazing!

 

#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.

#31 Days of Endo ~ Nurah Palesa

Happy new month everybody!

March is here!!

To start us off in this series, I would like to introduce you to Nurah Palesa.

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Queen  Nurah is an endo warrior based in Kenya, she shared her story with me for the first time in 2017.

 

I am Queen Nurah, and at the age of 25 I have lived with Endometriosis for 15 years now. I run on happiness. There is no one thing that makes me happy, a combination of the things that pull my heart strings is how I live. As for my profession, let’s just say that I am a Storyteller and Poet.

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Where it all begun

Before I turned 10, the year that pain became the filter to which I would see life, I was eagerly awaiting my periods. I looked forward to it like a boy would await his ceremonial rites of passage. I wanted to see the drops of blood on my underwear and have a crazy happy dance celebrating my new life as a woman.

 

The pain began immediately I started my periods. I was sitting in the back of the class, talking as usual and ignoring what the teacher was writing on the board. Then my insides began attacking me. It felt like someone had run a knife across my abdomen over and over again. I shakily put up my hand and asked if I could go to the bathroom.

 

When I got into the cubicle, something told me to check my underwear and hoorah I had blood. But I couldn’t do the crazy happy dance, not with the pain that I was feeling.

 

I remember going to one of the “nice” female teachers and telling her I got my period and that I was in intense pain. She was nice, she showed me how to put a pad on and for the pain she said that it was normal and hot water would help. “Normal? Are you crazy, I feel like I’m dying!” I thought to myself as I gave her a look that showed I thought she was crazy.

 

Maybe two hours later, I don’t exactly remember, my mother was called because now I was wailing and “causing a scene”. Hehehe, causing a scene. At the end of the day my mom gave me Syndol. Yep, Syndol. That confirmed my suspicion that the pain I had was not normal and for the next 7 days I suffered.

 

Managing the pain

For 13 years I was subjected to excruciating pain before my periods, during my periods and 3 days after my periods. In total I was in pain 15 days out of the month.

I ended up having a cocktail of painkillers in my bags. Here is the list with what I started to what I take now:

  • Syndol (4-6 pills in an hour/day)
  • Betapyn (5-6)
  • Postan (10)
  • Brufen (10)
  • Buscopan (10-12)
  • Buscopan plus (it would land in my stomach and I would throw up immediately)
  • iBoprufen (40 mg 6, 80mg 7-8)
  • Vykadin (6)
  • And now I’m on tramadol 100mg and when the pain gets really bad I go for the shot.

And while I was on these pain meds I sometimes found that mixing them would help. And when I say help, I mean level the pain to a degree that I could function and not snap at people.

 

The pain haze of life is amazing. It changes how you look at everything and how you react. Physical pain makes life 300 times worse. Well for me. Someone else could be different. I had the worst mood swings, had a short fuse and basically I would just want to cry and be alone most of the time. I am generally a nice, gentle happy Queen, but you don’t want to make me mad when I am in pain.

 

Oh wait, did I forgot to mention that I would get high off the pain meds, lol aaaand that I was a heavy alcohol drinker. For 7 good years. The combination of alcohol and a cocktail of pain meds made the pain bearable.

 

I remember when I joined uni and my girlfriends would watch me pack my clutch bag with tampons and meds (3 strips of 10 so basically 30 pills) and they would ask if I was ok. Little did they know that I would have gone through 2 of the strips by midnight.

 

I would literally get high just to escape the pain.

 

When I was 22, fresh out of rehab (because others thought that alcohol was the problem) the pain kicked up a notch.

 

Finally, I got a diagnosis

 

Lower back pain and shoulder pain had kicked in, and I needed to know that there was a name for what I was going through. I went to see a gynaecologist and he diagnosed me with Endometriosis. I thought that finally I can get rid of the pain for good now that it’s an actual disease.

 

I went online and decided to learn all I could about my condition. That’s the type of person I am, I read and research on topics that are of interest to me. So I did what I do best; gather intel.

 

I found out that foods (which I had always known, I’m very strict with what I eat) contributed to the pain levels and there was a diet I could start. Eh….that diet did not work. In fact I ended up increasing my pain and losing even more weight.As for the endo diet, which is vegetarian I really tried. My body just didn’t accept it. And recently I discovered that diets don’t work for everyone, our blood types play a big role in the foods we need and as an O+ I need meat. I’m sticking to white meat.

 

So again I run around for another year looking for a solution and I found one. Or so I thought. I went through a Laparoscopy where The Gynaecologist lasered the extra endometrium tissue that covered my ovaries and fallopian tubes and he put a Mirena Coil so that my fertility wouldn’t be compromised. I had stage 4 of Endo at this point.

 

Relief at last

 

For the first time in 13 years I had no pain.

 

I loved my life; a zeal for it (which I still have) was born. You know when someone tells you to live life to the fullest and do what you want to do and wave your hands in the air like you don’t care?? Lol, yeah I did that for 3 good months before the pain came back.

 

Back to reality

 

As I write this I have the worst headache ever and my back and shoulders have decided to kick into level 400. The last two days have been brutal because I am ovulating and I can feel the damn egg travelling.

 

I could change my diet again or find some radical something that will help “ease or get rid of” the pain, maybe even look at the spiritual aspects of it, but my reality is that I am meant to have this pain. I’m just supposed to rise above it and live life to the fullest and that’s not an easy task.

 

Yoga helps me. And meditation. And maybe some teas here and there. Lemon, ginger and honey is amazing. I generally try and avoid junk and fast foods and sodas. I’ve been on a general healthy diet from the word go. My mom has always been conscious about food.

 

Endo and Family

My family is very open with each other; my mom and sister also have endo and my brother was told early on about our periods. The extended family is a whole different story. I like avoiding them as they disturb my positive energy fields.

 

I would love a whole football team of children lol.

 

Endo is genetic, my mom and I traced it back to her grandmother (her dads mom) so for me it doesn’t really matter if I have a daughter or son, I’m going to have to tell them asap about endo. And what they can do from the word go.

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To my queens and princesses I agree it is so not fair that we endure this pain.

Search for your solutions and remedies. Don’t let anyone stop you. 

However do not forget to live life to the fullest. Do what makes you happy; love yourself and play in the rain.

Oh and please be kind to your sister queen / princess. Seriously, we women can be brutal to each other and it’s about time we stopped.

You can check out Nurah’s online home here.

Follow her on Twitter and Instagram.

Thank you Nurah for sharing your story with us. Keep fighting, shining and dazzling.

 

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.

Fight and Shine

There is no shortcut to treating Endometriosis. Nope, non at all. You have to put in work, and try different pain management strategies. The truth is some may work and others may not work as well. Endometriosis affects different women differently. In the same way, one treatment method may work for one woman and give another woman -a hell on earth- experience.

The first time I looked at the Endometriosis diet I concluded that all I could eat was air. My diet at the time was predominantly made up of everything that I ‘wasn’t’ supposed to eat. I was conflicted between wanting to be pain free and needing to eat for comfort.

It was hard. Every thing about that season was difficult. I felt as though Endo was taking too much away from me – first my ability to perform and then my comfort food. What was a girl to do?

It had never occurred to me that I was an addict. I was addicted to the bad foods. My body was in serious pain but I couldn’t comprehend how I would survive without my staple foods. Coffee without milk seemed like a bad dream. Sugar-free tea seemed like a punishment, and my body needed a reprieve.

DEAR eNDO wARRIOR,ONE DAY YOU WILL FIND WHAT WORKS!

A lot has changed since then, I am stronger and wiser now. I have tried many things: hormones, pain killers and diet changes. Through the process the question that I have learned to ask is, ‘ How does this form of treatment make me feel?’. The first couple of days of quitting wheat made me feel depressed, foggy and sluggish. Earlier in the journey, I would throw in the towel on the third day because the headaches were driving me nuts. Little did I know that freedom from wheat lay a few days down the road.

There is no one-size-fits-all treatment. What one woman sings at the top of her lungs works, may have you crawling on the cold floor in regret. Take the advice and suggestions that you receive with a pinch of salt. Do your research, pray and then give it a go.

Hormonal acne has humbled me. It has taught me that not everything I try will work. And I have tried lots of things. I remember one time, I read that if you apply your morning urine on your face, your acne will disappear. The good Lord saved me from trying out that option, through it crossed my mind severally. But I have tried neem soap and lotion, shea butter, tomato juice, potatoes, lemon, honey, yogurt, steroids, black soap, coconut oil, olive oil, almond oil, sandal wood, turmeric, apple cider vinegar, rose water, lots of cleansers and moisturizers. Phew, that’s a mouthful but I’ve tried many things and most of them have not worked. I’m still here, hopeful that I will find what works.

I’m now trying to treat it from the inside-out. I’m diligently taking my morning elixir  which consists of ACV, honey and cinnamon in warm water. I’m using bentonite clay on my face, we have to thank God for this gem, it works. I’m drinking lots of water and I have cut out dairy from my diet.

I won’t stop trying. I believe that one day, God willing, I will hit the jackpot.

Hang in there, dear warrior. Keep trying, keep fighting and keep shining.

Ess

 

The Diary Kenyan Endo Warrior: My Journey With Hormonal Acne

I’ve struggled with hormonal acne for well over ten years. As a teen it was nerve wrecking. One day I woke up with pimples on my face that seemed more like mountains, and they just wouldn’t go back to where they came from. I was told that apparently acne during puberty runs in the family and that it would disappear once puberty was over. I waited with baited breath, but it never disappeared. I’m well in to my twenties and I still struggle with acne.

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Seeing a dermatologist didn’t quite help, the medication set me up for greater disappointment. I tried topical creams, oral medication, different facial cleansers, toners and moisturizers. The only time that my skin has been smooth, I have been on a form of hormonal therapy. Smooth skin and manageable periods were about the only positive effects of the hormones on my body. Despite the acne, I am much happier off the hormones.

The acne intensified when I had recurring ovarian cysts. But not even that prepared me for the horror that was acne during my first pregnancy. Oh my word! I had pimples on my face, chest, back and arms. It was horrible. Horrible! They weren’t just pimples, they were cystic bumps, that would scar if you tried to burst them. Yes, I know that shouldn’t burst a pimple, but man, sometimes all the things that you should do don’t seem to work, so you result to throwing your hands up in the air and just bursting them. Because they are yellow, shiny and ripe (read: gross) and you can’t wish them away. The number of prayers that I have said for my face, I think that there is a scribe in heaven who has almost run out ink.

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I was listening to a podcast on hormonal acne and endometriosis, and the thing that shocked me is that Paige’s dermatologist told her that the life cycle of a pimple is about two months. That means that a topical treatment may not be enough to get rid of the pimple. You need to heal from the inside out.

An endo sister encouraged me to choose three products and just be consistent. So I chose to keep it simple with more like five products. I am using the Simple cleanser, Rose water to tone and Simple moisturizer. I scrub twice a week and put a sandalwood and turmeric mask every week. Keeping my hair off my face is also helping, goodbye versatile hairstyles.

On the inside, I am still pursuing (the somewhat elusive) hormonal balance. I’ve been craving (and satisfying the craving for) lots of dairy. I need to find alternative sources of calcium and take my supplements. I want to detox again to help reset my body and then I can watch what I eat.

I decided a couple of months ago not to reduce my self esteem or worth to the presence or absence of pimples on my face or chest, arms and back.

The truth is, it’s not the worst that it’s been, and I am relieved, but I’d like to balance my hormones naturally. So, here’s to resetting my hormones and getting smooth(er) skin.

Have you struggled with hormonal acne? I’d love to hear what has worked for you.

Blessings,

Ess

 

 

5 Things To Do Before You Start An Endo Diet

A few years after I was diagnosed with Endometriosis, I found the Endo diet. It was nice to look at, but it was so much work. it meant giving up all that I knew, and so I started it for a short while, then I quickly fell off the bandwagon because I had not taken certain things into consideration.

Over the last couple of weeks, I’ve seen many women asking about the diet, and I thought I’d share some tips that I’ve learned over the years.

First off, IT WORKS! For the Endo warrior wondering if changing your diet makes a difference, well, it does, It may not reduce the pain completely but it makes you feel so much better.

5 things to do before starting an Endo Diet

 

Before you start the diet, I’d encourage you to:

1) Read about the diet

Do your research about the diet and internalize why you need to reduce the intake of certain foods. Understand the hormonal balance that you are trying to attain using food. When you begin to view food as medicine, it changes your thought process when you are serving food on your plate.

2) Know what you are dealing with

Endometriosis cannot be treated in isolation. Look back at your medical history and identify any food allergies and take them into consideration. What is good for one woman may not be great for you. If you have Irritable Bowel Syndrome or Ulcers, be sure to avoid any trigger foods that may seem healthy.

3) Make a plan

What they should tell you is that eating clean is not easy, Nah! It isn’t. It takes hard work, planning and self control. The food you are supposed to avoid is so easily accessible. Wheat products, taste and smell so good. They are affordable too, well in the short run.

If you want to be successful, you need to plan your meals in advance. Anticipate hunger. Find restaurants that serve foods that you can eat and enjoy. Look for locally accessible food substitutes. The ingredients that you read about online, may be costly. Remember that food is medicine.

Make your food exciting, eating clean doesn’t have to mean eating boring food.

4) Keep a food and feeling diary

The first couple of days, it is easy to get discouraged especially because you feel horrible being off wheat, dairy, soy and caffeine ( they are the popular ones).

Keep a food diary that allows you to write what you eat and how feel physically and emotionally each day. Remember that you may see results immediately, but you shouldn’t write it off until you’ve tried it for 2 months.

5) Love on yourself

Enjoy the journey. Invest in yourself, speak kind words to yourself. The battle is won in the mind, so you can’t expect to succeed in the eating department if you constantly belittle and doubt yourself. Love yourself for who you are and where you are at. View the diet change as something you are doing for yourself, not necessarily because the doctor or friend suggested it.

Some days we fall off, but we have to get back up. If food has been a crutch, try and find a new activity to do.

All in all, I wish you the very best. If you have any questions, please feel free to send me an email via yellowendoflower@gmail.com

Blessings,

Ess