Endometriosis Is Real and Resilient-32 Surgeries Later

Time and time again, I meet a woman who has been strongly advised to have her uterus removed because it’s removal will cure Endometriosis.

This myth needs to be dispelled from the mountain tops.

“A hysterectomy is not a cure for Endometriosis.”

Meet Patricia Roy, a woman with strength beyond words. A woman whose had 32 surgeries because of Endometriosis. From her we learn that Endo is real. Endo is resilient; but we are more than Endo.

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Hi! My name is Patricia and I am 41 years old. My period started at the age of 14, and I couldn’t wait to start my period. It meant I was a woman in my eyes. I started having period issues at 15 years old. My mom took me to my sisters gyno because my sister had endometriosis and I was showing symptoms. After I saw the gyno he did surgery and I was diagnosed with endometriosis at 16.

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

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

 

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

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

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I currently started writing for a magazine called  Streetfashion I am the beauty editor. Although at the moment it doesn’t pay, so I look at it as a learning experience. I always wanted to be a writer since I was little. I write poetry and song lyrics. My writing has gotten me through a lot of dark times, dealing with this disease.

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

My favorite flowers are Daisy or Calalily. My favorite color is light purple.

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

Be encouraged, you are not alone. Shine where you are.

Blessings,

Ess

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Why I Keep A Period Diary

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Ever since I was a little girl , I always kept a diary. It was my outlet and a way of keeping a record of the little details of my life.  Unfortunately, I was not very detailed about my periods and their patterns, so when I needed this information, it was nowhere to be found. I answered the doctor with a lot of ‘Umm, I can’t quite remember’ and blank looks with several breaks in between as I tried to run up and down the corridors of my memory trying to remember key details. I am sure that there are many ‘little’ important details that I left out during these consultations.

After many years of trying (and failing) to recall from memory I finally discovered the Period Diary app and it literally changed my life. I was finally able to document my period journey daily, and a couple of months later I begun to recognize patterns in my cycle.

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I quickly realized that my menstrual cycle is not just about the day(s) that I shed the lining  of my uterus. It is about what I experience through the whole cycle, my emotions, diet , ovulation. It is the vaginal discharge all through, the color and texture of the actual shedding. Keeping a period diary has helped me to be more in control of my body, as I know what it’s triggers are and what to anticipate at different times. I am definitely more prepared for the occasional pain, PMS symptoms and actual periods.

Keeping a diary has helped me to see the cause and effect of different things that I’ve tried. For instance, when I detoxed and started taking an Apple Cider Vinegar elixir every morning the inflammation and pain during my cycle significantly reduced. I also figured out that the monthly headaches were reducing over the months, so I was definitely doing something right.

I recommend keeping a period diary to all women, both young and old, whether you have complications or not. It helps you to understand your body, it’s functions and your emotions.

Mothers with teenage daughters, I urge you to ask your girls to keep a period diary as soon as they start their periods. After every couple of months, sit down and review it with them. Talk about the patterns that you both recognize. Many girls don’t know what a normal period is. They often just take their periods as they are,  persevere, until they are adults and realize that something was wrong all along.

There are several period diary apps that you can choose from on the Play store. This is the one that has worked best for me.

If you opt to keep a physical diary, these are some of the details to record:

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Blessings,

Ess

Seeking A Second Opinion

Never be afraid to ask questions about  your body and the things that you have been told it has or doesn’t have or can and can’t do.

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After a long time of searching for someone to believe your symptoms and give you a diagnosis, it is possible to feel an allegiance to the doctor who finally puts a name to the pain or discomfort. Sometimes it is important to get a second opinion, to confirm that the diagnosis and suggested methods of treatment are the most appropriate for your case.

You need to notify your current doctor so that they can avail copies of your imaging studies, medical records, lab and test results for review. Some doctors may be uneasy about you getting a second opinion, in such cases, stick to your gut feeling and go in with an open mind.

Look for a doctor:

a) who doesn’t have a personal or professional relationship with your current doctor. This will help your healthcare to remain the primary objective.

b) who has the training and experience to offer fresh insight into your condition. Do not move from a Gynecologist to a General Practitioner when dealing with Endometriosis.

It is important to note that different doctors’ school of thought, training, exposure and methods may cause them to differ in opinion. The diagnosis may even change. If the opinions of these doctors differ to a large extent then it may be wise to seek a third opinion to make a decision, and hope that the diagnosis and treatment methods lean more to one of the two.

All in all, my prayer is that you find a specialist who will walk with you and give you the care that you need.

Blessings,

Ess

 

10 Factors To Consider When Choosing A Gynaecologist

My first visit to the gynecologist was not what I expected; I was confused, afraid and uncomfortable. After many hours in the waiting room, I finally walked in and saw him. The doctor was a middle aged man who was not too chatty or ‘warm’ but he got the job done. I was young and naive; I was scared because the pain in my abdomen was getting worse as the days went by. I was all alone and looking for consolation but the doctor’s personality was not very warm. In retrospect, I would have chosen differently.

I didn’t really have a criteria when choosing the doctor. After various campus clinic with recurrent pain, the campus doctor just told me to go see one of the doctors on the insurance list. I used the nursery rhyme ‘inky pinky ponky’ to help me choose one. There was nothing objective about this choice; though the campus doctor backed my decision.

Over the years, as I’ve turned different chapters in my health story I’ve had to choose other gynecologists. A couple of doctors later, I finally have a list of factors that I consider before I settle on a gynecologist.

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1. Your need

It is important to know why you are looking for a gynecologist. Is it for a routine visit-pap smear, mammogram, vaccine? Are you looking for an obstetrician to walk with you through your pregnancy? Are you having complications with your period-pain, irregular menses, other condition such as PID, Endometriosis, PCOS? Are you having a difficult time conceiving?

2. The doctors speciality

Gynecologists are not exactly a one size fits all.

Some conditions are better treated by a specialist. Based on your need, consider what the doctor specializes in, then narrow down the list. If your struggling to conceive, a fertility specialist would be a better fit compared to an Obs/Gyn.

3. Payment services

If you are using an insurance cover, find out if the doctor take your insurance cover and what the limit is. It is also important to inquire what the consultation fee is, just incase you need to pay the consultant out of pocket.

4. Availability

Does the doctor have very long lines? Are they only available on certain days? Are they available on phone in case of an emergency? If your current schedule is not flexible then a busy doctor will be difficult to keep up with.

5. Hospitals They Can Operate At

Incase you need to be admitted and have a surgery, find out if the doctor can perform the surgery at your preferred hospitals.

6. Testimonials

Ask around and objectively analyze other people’s experiences with the doctor. Remember that everyone’s experience is personal and two people may differ in opinion.

Personal Preferences

7. Gender

Do you feel more comfortable with a male or female doctor? Your doctor should make you feel comfortable and not like your privacy is being infringed upon.

8. Age

Do you prefer a young doctor or an older one with more motherly or fatherly tendencies? Consider which age group makes you feel more at ease.

9. Faith/Religion

If you feel a doctor who shares your faith beliefs will be able to walk with you better, look for one.

10. Your Instinct

Visit the doctor and trust your instinct, listen to your inner voice. Make sure you settle for a doctor who inspires confidence, and lets you know that you’ve been heard and are in safe hands.

All the best in your search.

Blessings,

Ess

The Lonely Side Of Endometriosis

I’ve been unwell the last couple of days. The levels of pain reminded me of an Endo flare and the memories all came flooding back.

Yestermorning, I read the story of the woman who hemorrhaged for twelve years and had spent all her money on physicians in Luke 8. They couldn’t find a cure.

43 A woman in the crowd had suffered for twelve years with constant bleeding,[g] and she could find no cure. 44 Coming up behind Jesus, she touched the fringe of his robe. Immediately, the bleeding stopped.

45 “Who touched me?” Jesus asked.

Everyone denied it, and Peter said, “Master, this whole crowd is pressing up against you.”

46 But Jesus said, “Someone deliberately touched me, for I felt healing power go out from me.” 47 When the woman realized that she could not stay hidden, she began to tremble and fell to her knees in front of him. The whole crowd heard her explain why she had touched him and that she had been immediately healed.48 “Daughter,” he said to her, “your faith has made you well. Go in peace.”

This really reminded me of Endometriosis, and my heart just went out to all the women suffering from Endometriosis. The truth is that unless we too, figure out how to touch the hem of His garment all we are doing is simply trying to manage the condition. There is no known medical cure for Endometriosis. 

After being sick for such a long time, you realize who your true friends are. Your life comes to a stand still. The vibrant life you once led now becomes a distant memory. As much as you would like to, you are not physically able to do everything you’d like to do. And it hurts. It hurts to watch a part of your life fade away. It’s sad when getting out of bed was the biggest achievement of the day.

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The shame. The questions. The roller coaster of emotions. The question “You are STILL sick?” becomes a constant. The labels are disheartening. The despair. The dismay. The disappointment. The discouragement. All these other things that come with Endometriosis make it a very lonely journey. Not many people are able to understand the turmoil and pain that you experience. Not many people understand the desperation to get well. Often we see people do seemingly crazy things in the hope of getting better. What I’ve learned is that unless you walked in the person’s shoes, you are better off shelving your judgement. You don’t know their pain. I know that I too have had crazy thoughts; I have been desperate for the pain to end. In those moments I was willing to do almost anything to take the pain away.

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Today I just want to encourage all women who feel like hope is lost, that you are not alone. As you lay in fetal position and cry your heart out, you are not alone. The Lord who knit you in your mother’s womb is right there. Do not stop pressing in, keep believing.

Sending you love and light,

‘Big Sis’

The Other Side of Endometriosis

Happy new month (:

For several years, I have spent time and money dealing with the symptoms of endometriosis. There have been countless doctor visits, lots of pills swallowed, scary surgeries. I mean, any surgery is scary, lots of anxiety, insomniac nights and worry.

However, when it comes to dealing with the root cause, I shy away. All of a sudden, I am too busy, or suddenly, some things seem to private; yet I have seen countless of doctors trying to decide what was wrong with my privates. The irony.

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A couple of weeks ago, I decided to go on an emotional journey, one of trying to figure out what triggered Endometriosis symptoms. This has been perhaps one of the hardest journeys I have ever been on. It makes the countless visits to the gynecologist , even the scary surgeries, seem like nothing.

Here I have had to get real with myself. Accept that I have been hurt, in fact, I am still hurting and what do you know, it is okay. It is not too late to receive healing. It is not too late to work through these emotions. Walking down this road of emotions can easily ruin my day, because I never quite know what I will find. I am so used to keeping up face that I almost forgot what I really look and feel like, without all the plastic ‘I am doing great’ smiles.

For years, I would gnash my teeth as I slept. If you ask anyone in my home of origin, they will tell you that Bruxism was synonymous to me. I was sometimes too embarrassed to go sleep out of the house because people would hear my not so musical tunes; worse still, they would judge me. Yet contrary to popular belief it was not something I had control over.

After I got married in 2012, it stopped after a couple of months. Oh thank God, it stopped. I finally felt safe. There were days I would wail myself to sleep, trying to sort out my emotions, but it looks like those tears cleansed me of anxiety. Now I don’t gnash my teeth anymore, I am sure my husband is so relieved.

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So maybe other Endo symptoms are a lot like Bruxism. You don’t have much control over them when you experience them. But, if you are willing to make a few changes in your lifestyle here and there, the severity might reduce.

Maybe we need to deal with Endometriosis from the inside out. Get healing from the inside out.

I was awaken, when I have joined EndoPositive™ International, and over there it was brought to my attention that endometriosis is a psychosomatic disease. I thought then, psycho what? I realized, we live in the world, where we will so much easier accept pills, surgeries over work on ourselves! Only when I realized, how serious it could get, if I continue to overlook my unconscious mind, I finally woke up! And I am glad I did!

Today, I continue working towards the self love, forgiveness and self awareness. Perhaps you could give it a try. You will be surprised how many things you will find out. If you feel, you are not ready, consider

I originally posted this article on EndoPositive™ International’s website in September ’15 under the title ‘What if you have been looking at Endometriosis all wrong’. My journey has been difficult, refreshing and healing all at the same time. I am still a work in progress, not where I was when I originally penned down this article. My health is at a better place.

 

Have you considered that there could be more to Endo than meets the eye? How has your journey been?

‘Big Sis’

 

I Wasn’t A Hypochondriac Afterall

I almost hugged the doctor the day he have me a diagnosis. I couldn’t pronounce ‘Endometriosis’, and I barely knew anything about it, but it was a diagnosis, and it somewhat explained the pain I’d been feeling. Also, in retrospect, I don’t think that the Doctor would have appreciated the hugs as much as I would have.

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After years of being labelled a hypochondriac and sickly child, it was so refreshing to hear someone finally give a name to the condition I’d been facing. Granted that no one likes to hear they are sick or get a diagnosis they can’t pronounce, but after years of crying in fetal position in pain, getting a diagnosis was music to my ears.

I felt validated , like someone understood me and my pain. I didn’t understand the intricate details, but I understood this:

a) someone believed me

b) the pain was not all in my head

c) we could try to manage it

I had been trying to tell the world for six years that periods this painful were not normal. I struggled with feelings of guilt and depression when getting out of bed seemed like a task too big for me.

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Invisible illness is sometimes very difficult to diagnose. It’s possible to get several misdiagnosis especially when the symptoms are similar to other illnesses.

When the doctor mentioned surgery, I was just like ‘bring it on!!!’. My fear of going under the knife was less than my fear of living in this pain. If this surgery could help, then I wanted it, I needed it stat. Prior to this, I had a surgery that I didn’t need and got an inconclusive diagnosis because the Endometriosis symptoms had manifested in my bladder.

I wasn’t a hypochondriac after all.

Have you been labelled a hypochondriac? Don’t give up on looking for a diagnosis.

‘Big Sis’

I Was Labelled A Hypochondriac

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“It’s all in your head!” is a phrase I heard one too many times. Looking back, I somewhat see where these people were coming from. I mean the symptoms I was experiencing were just all over the place-painful periods, severe bloating, chronic fatigue, irritable bowel syndrome, recurrent urinary tract infections, backaches, the list is quite long. I was constantly in pain. My period had turned into a monster. Rearing it’s head at every point of my cycle. It wasn’t really a cycle, the length kept changing every month. While most of my girlfriends bragged about being regular, I was as irregular as it got. Anywhere from 24-37 days. So much for being able to predict when I’d be rolling.

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I saw several doctors but they weren’t quite sure what was wrong with me. In fact I became a regular at the clinics, the doctors could almost predict what I was going to complain about. They’d heard it all. There is something about hospital waiting rooms that makes you feel sicker than you actually are.

The most deflating moment is when the doc would say “I can’t seem to find anything wrong with you.” One even went ahead to add, “I think you are imagining the pain. It’s all in your head.” In addition to the swollen belly and physical pain, I left his office, with medicine he wasn’t  sure I needed and dampened spirits. Most times I would just go home and cry. I was that girl crying in the lift, not because I had received a diagnosis, but because the professional was trying to make me believe that I had brought the pain upon myself. How I hoped I could just wish it away, or sleep and it would all be over.

 

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My journey taught me to trust my inner voice. To keep searching for an answer; a diagnosis. To never give up on myself, even though others dismissed me. Tough times show us who we really are, we find reserves of strength we knew nothing about.

Have you been labelled a hypochondriac? Have you given up looking for a diagnosis?

In part 2 I will talk about the day I got vindicated; when I finally received a diagnosis. It was the beginning of a difficult chapter, but it was far much better than not knowing what was wrong with me.

‘Big sis’

 

How I Became A Rookie Pharmacist

Up until a couple of years ago, I was a self-proclaimed, self-medicating, rookie pharmacist.

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Let me explain how it came about. A few months into my period, I started experiencing painful cramps. Every time I brought up the issue, I was told that the pain was normal. Though deep within me, I knew that pain that intense was everything but normal. In fact, I had monthly visit to the high school nurse, where I could predict the order of the day. She would quickly draw a picture of my uterus, explain that it was shedding its lining and hand me two Paracetamols as she sent me back to class.

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The emergency room was not very helpful initially, a painful period is not on the top of the ’emergency conditions’ list. I  remember ever so vividly rushing to hospital because of painful periods but being kept waiting for over two hours because it ‘wasn’t an emergency enough’. That is until my blood pressure would spike and the doctors would wonder how I was walking with all that pain.

To avoid the inconvenience of the hospital, I would self medicate when the pain would get intense. The method was simple: I would mix up all the remaining stock that I had. One Buscopan Plus, One Ponstan , One…. you get the drift. I was self prescribing a cocktail that left me in a happy place; read: pain free, albeit for a few hours. Then I would need a repeat dosage.

My poor body. What I didn’t know then was that this cocktail could have adverse effects on my health. I was young and foolish, I didn’t bother to read the pamphlets. I thought  I was being a good steward of my time, studying for exams instead of reading pamphlets in font 2 [ I understand that they are trying to fit a lot of information on a small piece of paper, BUT, how does that font size motivate the target audience to read it?]

Also, I foolishly believed that I wouldn’t have any allergic reactions, I always prayed that I fell in the percentage that did not display any reaction to the drug. The desire to be pain free overshadowed every form of good sense in me. I was desperate, I needed relief; ever so urgently.

 

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I am now reformed. I get a proper prescription from a certified professional and religiously read the medicine pamphlets; in fact, I get very irritated when I’m sold a few tablets in an envelope without a pamphlet. I could be slowly poisoning myself for all I know. I read on the internet and make an informed decision when I take medicine and know what to look out for in terms of allergic reactions.

Are you a rookie pharmacist? Do you take time to read medicine pamphlets? Have you experienced any allergic reactions to the cocktail of meds?

‘Big Sis’

 

I Call Her Red

My little toddler found a packet of pads a few days ago. I told her they are called ‘pads’; for some reason she thought they were diapers for her toys.

I had the option of telling her a coloured lie, BUT, I am trying to make our home a truth zone. Also, the fact that I believed pads were mkate/bread, is rather bewildering. When my husband read my first post he called me laughing, wondering how now brown cow I was told they were bread; better yet, how I believed it. Oh the folly of youth. I’m yet to understand it myself.

When I got my period, I wasn’t sure what to refer to it as. Was it a ‘he’ or a ‘she’ or just an ‘it’? I rejected the nickname that was introduced to me, ‘kunyesha’ which means to rain.

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Also, I’ve always wondered why some people call it period and other periods. Does the pluralism indicate severity? Just food for thought.

When I asked my peers, I learned there was a better nickname, ‘Rolling’, you know, like the stone that gathers no moss. And so it stuck, until this rolling felt like tumbling down under. The pain was something else.

I then decided that my period was a she with the prefix ‘Red’. At some point it was so painful, all I could think of calling her was ‘Red Devil’ because the pain was outta this world. Now she is just Red. Red signifies her color, the fact that she stands..er..seeps out and finally the fact, that my vagina is a no go zone while she is in town.

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Other nicknames I have come across are:

  • Shark week
  • Aunty Flo is in town
  • Red Robot
  • TOM {Time of the month} is here

What do you call your period? Does it live up to it’s name?

You can find other interesting nicknames here and here.

‘Big Sis’