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

 

Preparing To Visit To The Gynecologist

Visiting a gynecologist for the first time can be confusing and exhausting. I was ill-prepared for my first visit, I barely knew what to expect which made my experience harder than it needed to be.

Over the years, I have come up with a preparation strategy that has yielded great results. I find my visits to the gynecologist now more comprehensive, and the waiting room does not discourage me.

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Here are some tips to help you prepare for your visits to the gynecologist.

1. Call in advance

Doctors are busy people. It is wise to call in advance and make sure that the doctor will be in on the day that you want to go. If the Doctor is very busy and constantly in theatre, call on the day to confirm that he will be in.

If the doctor sees patients by appointment only, be sure to make an appointment in advance.

If the doctor sees patients on a first come, first served basis, find out what time he comes in and leaves, then plan to be there in good time.

Confirm payment terms in advance; if you are using insurance, find out if they accept your insurance cover and if you have to co-pay. If you are paying cash, confirm the amount for first visit and subsequent visits. Clarify the terms of payment accepted, if they accept credit card or M-Pesa or cash.

 2. Write down the key points of your story 

For the doctor to treat you well, it is best if s/he hears the whole story, from the beginning. Write down the key points of your story so that you can refer to them, when asked ‘How can I help you today?’.

Points you can consider:

When did you start your periods? How were they? Your current cycle pattern? If you’ve had a diagnosis made, note down dates. Current symptoms you are experiencing and when they begun. Any family history that s/he should be aware of? Which medicines have you tried and what was your experience? Any drug allergies

3. Carry supporting documents

If you’ve had diagnostic tests done, carry the results so that the doctor can have a look at them . If you are currently taking any medication, carry it for the doctor to see.

4. Write down questions and concerns you may have

Did you read something on google that sparked a number of questions? Note them down. As you ask the questions, remember that google is not a Doctor.

5. Have a meal and carry a form of entertainment

Waiting rooms can be boring and morbid. Sometimes you meet happy-go-lucky people, and sometimes you meet people who’d rather sit in silence. To avoid prolonged small talk that may or may not be appreciated, carry a form of entertainment to keep your mind off of the time you spend waiting.

Waiting can make you hungry, if you can, have a meal before you enter the waiting room.

All the best. As you go, pray that God who knit you in your mother’s womb will give the doctor divine wisdom to treat you.

Blessings,

Ess