31 Days Of Endo ~ Patricia Anne Young

Day 16 🙂

Everybody’s journey is unique. You have to make a personal decision to fight endometriosis and to remain positive each day. As we face the pain and limitations brought about by endo, we pray that a cure will be found soon. Despite the pain, we are keeping hope alive.

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Patricia Anne Young first shared story with Lisa of Bloomin’ Uterus early last year. She got a diagnosis over 30 years ago.

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Patti was diagnosed with Stage IV Endometriosis when she was 21 years old.  Today she is 52 years young and lives in Ontario, Canada.  She continues to suffer, but holds tightly onto Hope and has a wonderful network of supportive and understanding friends and family.  Fight on, Patti.  Fight. On. ❤

Patti’s Journey: My Endometriosis Journey, By: Patricia Anne Young

One day after school, my friend invited me back to her place for a swim. We got changed, and I told her I’d meet her outside, as I had to use the washroom… little did I know I was about to become a “Woman”. I was 12…

By the time I was 16, my periods were horrendous, painful, & very heavy, like having Montezuma’s Revenge! My family doctor kept telling me that “all girls (your age) have painful periods…” and then one day I read about Endometriosis in Chatelaine Magazine, so off I went to the library to do some research. When I brought it to the attention of my doctor, he told me to “stop spending so much time in the library and go out and have fun…” But that’s just it, I wasn’t having any fun, I was always in too much pain, or bleeding too heavily to do anything.

One day, in Grade 9, my pain/bleeding was horrible, so I signed out and walked to the bus stop to catch a ride home. While waiting, I became faint…just then the bus arrived, the driver recognized me & he got off the bus to help me on. He asked the person in the first seat to move so that I could sit there, and he could keep an eye on me. He remembered my stop and helped me off the bus. I walked home from there, which seemed like an eternity, but actually, it’s only a 5min. walk.

My mom took me to the family doctor, to find out if there was anything he could do for me. He advised putting me on birth control would alleviate the pain and length of time my period lasted. Mum wasn’t too keen on that idea, being a very strict Catholic; however, she filled the prescription for me.

While I still had quite a bit of pain, it did work for the most part. I had to keep changing prescriptions because I’d start to spot. At age 21 I became pregnant. At 10 weeks’ gestation, my boyfriend of 3 years became physically abusive and I hemorrhaged. Following the termination of my pregnancy, the pain in my uterus felt like Edward Scissorhands was living there! A few months later my appendix burst and while in the OR, the surgeon noted a lot of old blood in my abdomen and asked a gynecologist to have a look. He said: “this poor young lady has Stage 4 Endometriosis” And my journey began…

Between the years of 1987 and 2016, I have had a total of 16 surgeries, met with a number of specialists and have had numerous procedures, including ultrasounds, MRI’s, CT scans, colonoscopies, x-rays, not to mention different therapies such as massage, physio, osteo, pelvic therapy, as well as Lupron, acupuncture and botox injections. I have also been on a gamut of medications from Tylenol 3’s to Oxycodone – Fentanyl Patch to Methadone. I am currently trying Cannabis Oil, with fingers crossed that it brings my pain level below 5/10.

Following a hysterectomy and lysis of massive bowel adhesions in 2007, I was pain-free for 1 year. Then one day while doing the dishes I had an intense pain on my left side. I made an appointment to see my gynecologist, she did some blood work, and sure enough, because an ovarian remnant was left behind, adhered to the Sigmoid Colon, my endometriosis remained active. I had 3 injections, over 3 months, of Lupron, which was supposed to suppress the endo activity, but it did not. Further surgery to remove the ovarian remnant was not advised as it would have been too risky and a positive outcome couldn’t be guaranteed. I was referred to a pain clinic in Toronto for Pain Management.

In 2010 I had to stop working due to the severe daily pain, which affected not only my ability to have a career, but my relationships with family and friends, always having to cancel engagements due to pain, and I could no longer compete in equestrian events, which had been my very much loved passion from the young age of 8. Exercising is difficult, to say the least, even Yoga!  Along with the chronic abdominal pain, I have chronic issues with my digestive tract (hiatus hernia), bowel and bladder issues (IBD, LS, and Chronic Bladder infections).

This disease has greatly impaired the quality of all aspects of my life; however, having a supportive husband, sister & a few close friends have been invaluable when trying to cope with Endometriosis.

Words of Advice for Us:  Early diagnosis is key and your first surgery should be with a specialist that knows about Endometriosis, Excision, and Lysis of Adhesions. Advocate! Do your own research and speak up, don’t be shy, after all this is your body and future at stake. Having an understanding support system in place makes this journey a lot easier to get through too.

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Thank you for sharing your story, Patricia. We are inspired to keep fighting for ourselves, even when we feel like it is us against the world. To be our own advocates. We are praying and hoping that a cure will be found soon.

Keep shining, Patti!

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#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

 

 

 

 

 

 

#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 ~ 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 ~ 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.

 

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 Kenyan Endo Story: Rachel Shivachi (Part 1)

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An Endo Warrior is a fierce and brave woman, one who fights many battles that don’t meet the eye.

Over the next couple of days I will be sharing the story of Rachel Shivachi. A woman whose story has moved me to tears. She has known pain, hope, grace and strength.

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I am a mother of three young adults, a wife, sister and a friend to many. I have worked in the Telco industry for more than 15 years in the sales department, high pressure job but I enjoy it. I turned 42 years last month and I believe in Live Life, Love Life.

Here goes my journey with Endometriosis and Adenomyosis.

if you have been diagnosed with the above I can say that there are going to be long days ahead however with proper management, care & support this need not stop you from enjoying life, ladies, research and read and always seek second opinions to be able to make the right decisions. I am grateful that we now have a forum that helps demystify this disease as well as providing the much needed support.

Very little is known about these two diseases and so when in and out of hospital and people ask what you are suffering from, almost immediately one goes to Google to understand this long worded condition.

I will still not go into the details of what the disease is (this is to encourage but you to research and read about it) but I will take you through my experience from an early age.

My menses were a nightmare from an early age of 16, I would not attend school or college including work a few days before and when they came.  Instead I would spend my nights on the cold floor wailing and screaming because then it was what I knew best.

My father having given up on Buscopan and Panadol introduced me to his painkillers – Ponstan. I remember in form 2, dad was so frustrated that he traveled to Kakamega to get miti dawa coz he couldn’t take the wailing anymore. At this time we discovered Dr Nyamu and he put me on contraceptives at the age of 16 and they worked for at least 6 months. So yes there you go, the disease thrives on certain hormones. But then the contraceptives had side effects that we had to discontinue. Before my form four end of year exams, I had to get medication to hold off the periods so I don’t have the pains. This meant that we had to learn pain management.

I don’t remember the last time I traveled without a cocktail of meds in my bag. I’m the first aid box in my own rights. Remember the side effects of long term use of some of these meds. My stomach lining is eroded to mention but a few.

I’m lucky and blessed to have had children so am told but my pregnancies have always been difficult and through caesarian section. I later learnt that CS also predisposed me to the adenomyosis.

I have had 8 Surgeries in total, which started in 2005 with the accidental removal of my appendix whilst it was an orange sized cyst, and, a mass in the uterus. I have had to learn medical terms such as laparoscopy and laparotomy.

So in between the years it was ovarian cysts and abdominal mass that would be found sitting in my uterus and they would be removed through surgery.

The feeling of being pregnant all the time, endless abdominal pains, unplanned menses, long periods of menses, you name it, the disease can drive you insane. Not to mention it limits your social life as you never know when the pains will strike. Nairobi hospital ER became my go to place .

I remember the gynae recommending a one year treatment in 2012 of a hormonal drug called Lupride,  a jab to your abdomen on a monthly basis.  The treatment was expensive, about 10,000/= a jab, and although it provided relief the treatment was a nightmare. I almost lost all my family, friends to name but a few, Leah Murimi, Zulekha Osman, Juliet Kanana, Mbathi Mutuota Penny Waweru; due to the side effects, hot flushes, extreme mood swings et al, but they held my hand.  Immediately we stopped the treatment, endo came back, quite aggressively and I slid into the next phase.

Have you ever gone to the Gynae, he feels your tummy and tells you, you are pregnant and you argue until he eventually sends you for a pregnancy blood test & scan and instead it’s a mass in your uterus and not a fetus? That was the norm!

I will never forget specifically December 2013, I was in so much pain I could not sleep, sit, eat or think because of pain. The abdominal pains, the backache was extreme and I even developed diarrhea. I was over-dosing painkillers just so that another day could come whilst I was avoiding going to hospital, I had the lousiest Christmas. After Christmas and upon arriving Nairobi I was rushed to Nairobi Hospital where my gynae advised for Laparoscopy which would give me relief. Unfortunately, three months later the pain was back and worse than before and eventually in May 2014 when I couldn’t take the abdominal pain anymore I opted for a partial hysterectomy. This the doctor assured me would give me relief for several years.

This was a BIG mistake as I learned later since my ovaries were left intact and my condition was aggressive so it was in vain.

By April 2015 the abdominal pains were back and this time around I developed recurrent UTIs (Urinary Tract Infections) – every other week. Jan Mwenjwa became my office nurse for these emergencies.  Thanks to her I don’t know how I would have coped.  I always looked pregnant, was always bloated and I could only sleep on my right because I had this mass that would pull if I dared sleep otherwise. I had to wear a pad every other time just in case. I always had brownish discharge which was sometimes smelly.

I was very afraid!

In August 2015 friends and family came together and we resolved to seek specialized treatment in India.  We had a harambee and thanks to my wonderful Orange colleagues & family and in August 17th I left for India with Zulekha one of my two best friends that I have.

I’ll share part two of her story tomorrow.

If you’d like to get in touch with her, you can reach her on Facebook.

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

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

5 Ways You Can Support An EndoWarrior

Endometriosis affects 1 in 10 women. This means, if you know 10 women, you know Endometriosis.

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The fact that it’s an invisible disease makes it difficult for women to get diagnosis and for people to relate with her and the pain. Because of the nature of the disease, and the societal norms, women find it hard to speak about Endo and even reach out for help.

It is more than just a woman’s disease, it affects the society as a whole. Women, daughters and sisters are affected. Fathers, husbands and brothers too.

5 Ways Tolove on an ENDOWARRIOR

Here are a few ways that you can support a woman who has Endometriosis:

  1. Believe Her

When she says that she is in pain, believe her. When she struggles to get out of bed, believe her. When she is too inflamed and bloated to fit in her normal clothes, and takes very long to get ready, believe her. When she says sex hurts too much, believe her. When she says she’d love to meet up but she just can’t, believe her. When she says she is on the verge of giving up hope, believe her.

Believe her. Believe her. Believe her.

The best form of love and understanding stems from a place of believing without a shadow of doubt that she is in pain and not pretending.

This understanding will help you be sensitive when you ask her questions and comment on her daily struggle.

2. Listen to Her

Hear her out, don’t dismiss her pain. Listen to her dreams, her fears, her jokes and her heart. Listen to her words and also to her actions; gently encourage her when she sinks into the valley of sadness.

3. Do Your Research

Take a personal interest in the condition and seek to be knowledgeable. There is a lot of valuable information on the internet. Read up about Endo, go onto forums and ask questions. Read the leaflets that come with the medicine that she is on. Research on

4. Be Present

Let her know that you are in this together. Go for the consultations together. Take an interest in her daily routine, encourage her to do things that help her. If she goes on the Endo diet, help her plan her meals. Join her in some of the meals.

5. Love her as she is

Don’t try to change her to be the woman you remember her being or the woman of your dreams. Love her as she is. Accept the challenges that she faces and help her work around them. Speak words of life and love.

Your support means a lot.

Blessings,

Ess