Living Life Purposefully

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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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Let’s Give Amanda Michelle a Great Birthday

On April 2nd, I had the opportunity to undergo a much-needed surgery where large fibroid masses and an ovarian cyst were removed. After battling this pain for quite some time (since I was 17), it was awesome to know that in the coming weeks, the only pain I’d feel in my abdomen area would come from the recovery process. As I started to recover, I began to think to myself, “Why did it take so long?” but more importantly, I expressed gratitude that some key people had come into my life within the past two years. Two of those people were in the medical field (my primary care physician who also serves as my main gynecologist and a fertility specialist that she works very closely with).

However, there was perhaps one person that I expressed the most gratitude for (and now that I think of it, I’m not sure I’ve ever said this to her) — my Twitter friend, Amanda Michelle. So this post is my personal “Thank you so very much for always being a person I could ask questions to (no matter how dumb they sounded to me) and I hope that you get the surgery that you so desperately need!”

You see, she has Stage Four (IV) Endometriosis which is reserved for the worst cases of endometriosis. Amanda has been presented with the opportunity to have her much-needed surgery (and this is super cool) done by the doctor who came up with the procedure, Dr.¬†Camran Nezhat(I just thought to myself, “Ahh! So much better than an episode of Grey’s Anatomy!”). But she needs our help!!!

Amanda needs $5,600 and I’ve included her budget below. So far she’s had 40 people donate enough to cover $1,278. That means, she needs $4,322 and she only has 16 days left through HopeMob (the tax-deductible and fee-free fundraising platform) to get the rest of the money.

“My Budget

It’s taken a while to hammer out the logistics with the hospital, so we’re now in crunch time with regards to getting reasonable reservations.

  • $3600: Surgery – $2500 deposit + $1100 left on the out-of-pocket max for my insurance

  • $1200: Hotel room w/ kitchen – for 5 days (endo = random food & gluten allergies)

  • $300: Car rental – 5 days

  • $500: Plane ticket – as of 5am on April 10th, this is the cheapest plane ticket

  • $5600 Total – excluding food & gas”

For those of you who are unfamiliar with endometriosis, it is “the abnormal growth of cells (endometrial cells) similar to those that form the inside or lining the tissue of the uterus, but in a location outside of the uterus” (source). It occurs normally in women of childbearing age with it being estimated that it occurs in 3% to 18% of women. On top of their being renegade uterine cells in other parts of our bodies, it can be very painful. Amanda has been diagnosed as having Stage Four (IV) endometriosis which is described below:

Stage 4: This is the most severe stage of endometriosis, with over 40 points needed for diagnosis. Patients with stage IV endometriosis will have many superficial and deep implants as well as large adhesions. Endometriosis symptoms including infertility are common in patients with stage IV endometriosis. (Source)

It is my hope that you’ll read this post and think about the ways that you can help Amanda (every little bit helps). I know that many of you who come to read my blog care about me (well, those that know me personally) and I’d like for you all to donate something. I’ve already donated to her by gifting her with $100 (because if her pain was worse than mine she DEFINITELY needs this surgery).

All of my appreciation and love to Amanda for her help. I’m rooting for you and I’m glad you have the opportunity to get this done.

Please see the links below for the appropriate places to go:

Amanda Michelle’s HopeMob Fundraising Platform

Amanda Michelle Jones’ website

Her Endometriosis Story/Introduction to HopeMob Fundraising