A Glimpse Into My Life

See it through my eyes & understand me a little more

My Endometriosis Story

Have you ever felt that something was wrong with you but because so many people told you that nothing was there, you started to think that you were crazy?

Well, that’s how I would describe the past 9 years of my life. For as long as I can remember, I complained about pain in my abdomen and side. The pain, which was pretty consistent, happened daily and got worse about midway through my cycle. I’d bring this up to people and I was told everything from “It’s all in your head” to “Maybe it’s gas.” At one point in college, I was in the ER almost every week so that people could help me get a handle on what they were calling GERD (a very severe form of Acid Reflux).  These years were also the most embarrassing. Because of the bloating and cramping that came along with my diagnosed incorrectly problem, I would wear certain types of clothing – always loose and never really form-fitting unless I was going someplace that was dark.

But the craziest part of it all were the comments from other people.

I heard things from people like, “Oh! When are you expecting?” because there were some days that I looked like a sorta pregnant lady (it was actually because of this question that I invested in sweatshirts). I heard things like, “Oh! She’s too young to have a kid. I hope the Dad sticks around.” to which I would always respond, “I’m not pregnant. I’m just bloated or some shit. And I can hear you.” But the most hurtful comments came from Medical Professionals. That’s right, those pesky people that we pay hundreds and thousands of dollars to reassure us that there is nothing wrong with us AND if there is, then they will fix it. But perhaps the most painful comment was, “Well, you know…you could have that type of pain from multiple sex partners. Young women like you often run into this problem. Your cervix might have shifted a bit.”

This was told to me after I explained to my lily-white doctor that I was not having sex, my cycles were painful, and I always felt faint and had trouble keeping food down.

After this comment, I just decided to stop going to see gynecologists who were white and practiced in rural areas where they probably never dealt with Black people. This decision meant that I didn’t go to a gynecologist for about 3 years. It would be another 3 years (so six total) before I was seen by anyone because I didn’t have insurance…and that’s another saga all on its own.

But more recently, my faith in good doctors has once again been restored. I have a wonderful doctor that took me seriously the very first appointment. Once I explained to her the comments I heard and my fear around coming back in to be seen, she reassured me that she would figure out what was causing the issue AND that she was opened to working with the other doctors to figure out what the problem was. After being seen by her, I had to go through a few ultrasounds because they found some growths in my uterus and she also wanted to get an idea of why my cycles were super heavy and painful.

And they found some growths (I named two of them Bruno and Endi) which my friends and family have reacted to by saying: “Dang! Those are like lil babies!” because they were sorta big (oh, I’m tiny. I’m 5’2″ on my license which means I fudged the numbers up a bit).

Now meet Bruno and Endi!

photo-5

Bruno is the seven pound fibroid removed from my uterus on April 2, 2013. This was the smaller of the two (I have no pic of the larger 11 pound fibroid also removed). Endi, the ovarian cyst removed from my right ovary, is that lil thing next to Bruno.

On April 2, 2013, I had a life-changing surgery where two large fibroids and a painful ovarian cyst were removed. To say I feel like a new woman would be an understatement. Because of their positioning, these masses made even simple tasks such as walking or running for my streetcar pretty painful.

Today, I’m at a point now where the big issues have been taken care of and I’m looking forward to simple pleasures in life that some (read: most) women might take for granted. The removal of the fibroids and cyst means that I can be monitored more closely. In the future, it’s likely I’ll be able to have a baby. And although that picture looks quite gross (it is kids, don’t worry if you felt this way), just think of this fact – I didn’t have the worst type of Endometriosis. That’s right, there are cases out there that are worse than mine.

So I’ll close this post expressing my deep gratitude that I finally have a doctor in my corner that LISTENS to me. I’ll also give myself some kudos for listening to my body and never giving up (I’m not a crazy woman with a problem y’all). Then finally, I’ll ask those of y’all mosey on over to my other post for my friend’s story about her challenge with Stage 4 Endometriosis. On top of all of that, all growths came back benign (no cancer for me!) after there was some concern over the rate that they grew at and the amount of growths they found in my uterus and other areas (it was starting to attach to my intestines).

I’m finally looking forward to doing fun stuff in life, like walking with no pain.

~Ms. C. Jayne

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5 responses to “My Endometriosis Story

  1. pynkkashmere April 28, 2013 at 10:33 am

    Wow. Glad you feel much better.

    • Miss C. Jayne May 10, 2013 at 7:56 pm

      Thank you! I appreciate the comment. It has been life-changing and I’m glad to finally feel some relief.

      ~Ms. C. Jayne

  2. dianapoulsen June 30, 2013 at 2:20 pm

    I had fibriods too. I got mine removed in Feb 2013. Yup, people tell you all sorts of stuff to make you think you are crazy. I was having mini strokes because I had lost so much blood because the clinic just kept saying “It’s just your period honey.” “That’s normal.” Or basically you are a sissy to complain so much. I guess passing out from the pain or feeling it in my heart was me being a sissy? And if you cry they just think you are a hysterical woman.

    I’m poking my head in to say I’m slowly going to write about it as well and I understand how bloody frustrating it is. Fibriods are so common, why on earth did it take 6 years for anyone to take me seriously? I even said “I have a history of fibriods” to one clinic doctor. When I finally got a family doctor that’s when stuff started to happen. I adore her.

    I love the internet because you find people who have similar experiences.

    All the best on your road to recovery.

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