An Intimate Conversation With A Black Woman Dealing With Endometriosis

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As a storyteller, you tend to have a knack for knowing when someone’s story should be told! You just know that if it was shared how much people around you would appreciate it even when it’s hard. Cyrene told me she had Endometriosis earlier this year and at the time I had no idea what the disease was or even that there was any possibility that she could be dealing with such a thing.

You see with her, you do not see ‘sick’ – even typing the word ‘sick’ seems 100% wrong. Her spirit and sheer joy for life, as well as her incessant need to DIY everything provided no clues that this lady could at any point be dealing with any sort of pain or depression.

I felt a little ashamed, I loved ‘hearing’ her happy day to day stuff. I am that friend she can tell about the guy on the train that tried to hit on her by singing a song way off key or that photographer that had no clue about angles or about some out of this world DIY project that involved way too many tools for my liking. I was spoiled, I did not want to know that she was going through something that I did not even know existed.

Fast forward to this week, when we decided that the world needed to hear her story and we needed to explore the pain a little bit and not be afraid of it. I wanted to know how Endo affected my friend and with that said we needed to have an intimate conversation, something that required a ton of strength from her and a listening ear from me.

Read below:

What is Endometriosis and what symptoms do you have?

Endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus. Over 176 million women have been diagnosed with the disease. We lovingly call each other endo-sisters. Brought together in our own community by a special bond.

My symptoms were extreme pain in the abdominal area, lower back, excessive menstrual bleeding, fatigue, nausea and discomfort during intercourse. Currently, I deal with spurts of extreme fatigue.

At what age were you diagnosed with Endometriosis and what was that moment like for you?

The age I was diagnosed with endo and the time I was believed to have had it due to symptoms are vastly different in comparison.

It is believed endo for me started at 13 when I started my cycle. It abnormally lasted for 17 days. My mother did take me to the hospital and I was deemed “normal”.

I wasn’t diagnosed until I was 28. 15 years after my symptoms began with documented proof in my medical records. On average I heard it takes women 7 years for a diagnosis.

They say that every single thing in life serves a purpose whether it is good or bad – What do you think the “Why me” is for you?

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Endo definitely serves its purpose in good, bad and painful ways. Obviously living in a constant state of not knowing what was wrong with me for years and doctors telling me “You’re just a woman”.

Then drastically finding out I’m not okay and have a disease there is no cure for is a hard and heavy blow. I was depressed about it for a while. I can admit that now.

I think it takes a very special person to live through it, survival is key. To anyone reading this that might have a hard time figuring out the good part, take it from me there are good parts even with the bad.

I’m what people can describe as a doer, helper, and giver. If I can help I will, if I can do I will and if I can give I will. At the time of diagnosis, my body prevented me from doing a lot of things I wanted to do.

Getting out of bed on some days was a phenomenal feet, some days I just couldn’t do it. Those were the times I need those I was helping, doing for and giving to return the friendship, care, and love. In more ways than one they didn’t.

Maybe it was too much for them. I may never know. It used to hurt, but I take it as a lesson. As my grandmother used to say “one hand washes the other, but it takes both to wash the face”. She noticed my character long before I knew what character was.

As my illness progressed people began to be weeded out. I didn’t see the blessing in it at first. In the beginning, it hurt yes but we all are going through our own battles.

I don’t hold it against them, but at that time I was able to figure out who was for me and who wasn’t for one reason or another. It allowed me to learn how and when to say “No”. That was one of them biggest lessons of my life.

Does Endo define you?

I don’t think endo defines me. It’s a disease that I have been diagnosed with. I used to be ashamed of it because I don’t like the sound or the idea of being sick in any way.

I thought people would treat me different if they knew and to be honest most people still don’t know. I don’t make a big fuss about not feeling well. On my bad days, I deal with it and keep it moving. I do think it has made me stronger emotionally and mentally.

It’s one of those things where I might here “Well, you don’t look sick” but at the same time, my life has completely changed because of it. For example, When I was diagnosed I was in the USAF and since my treatments progressed I have been put on medical hold to determine if I was well enough to serve in the military.

Last year it was decided that I was no longer capable. Honestly, I’m not and I accept their decision. It sucks that I won’t get to retire, but it also opened the door for me to fearlessly follow my dreams.

What is your hair story, did endo affect your decision to go natural?

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Endo affected my natural hair journey 150%! I remember my doctor at the time setting an appointment to come to her office specifically to talk about my lifestyle changes

She told me that although I had been properly diagnosed with endo during the emergency surgery that the original findings didn’t appear to be as severe.

Since the biopsy showed I had a much higher stage of endo that I would have to make some lifestyle changes. Things like relaxers, perfumes, lotions, makeup and anything else with parabens and other harmful chemicals had to be removed from my daily routine.

Up until then, I had only toyed with the idea of going natural. The community was growing, but I didn’t give it any serious thought until my health became a factor.

So that was it. February of 2010 was my last relaxer. I transitioned for a year not because I was scared to cut my hair but more because I had no idea how to deal with my natural hair so I took the time to learn.

I started a Facebook group called “Naturally We”. They didn’t know it but it was a support group in a sense for me. I didn’t choose to be natural the decision was chosen for me and it was ultimately the best decision and I have no regrets.

I remember the day I stood in the bathroom and washed my hair seeing the curls mixed with the straight ends. I picked up the scissors and began to cut. It was one of the most freeing things I had ever done.

I know you have a beautiful baby girl, what have you taught her about endo?
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Thank you! I love my daughter more than anything. She’s my only child. Due to endo complications, I had a hysterectomy so she is in a sense my miracle baby.

I had a very hard pregnancy. I wasn’t diagnosed until she was 5 so the whole pregnancy when I found out about the fibroids and at the time it was believed that, that was all I had.

She knows all about endo. For a lot of it, she saw me in bed unable to get up. It hurt me to see her see me in that way. The hysterectomy was me choosing a better quality life and to be more present if I had not made that choice. She will be 12 next month and I am so blessed to have her.

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(click here for page 2)

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