A Glimpse Into My Life

See it through my eyes & understand me a little more

Tag Archives: Endometriosis

The More Things Change

I had my surgery to remove my renegade fibroids and a demonic ovarian cyst due to endometriosis a little over 6 months ago. I even shared 12 Things I Wish I’d Known before the major operation. Now I’m back to give an update and share some REAL challenges because it’s been…interesting.

Let’s start with the positives (that’s always a good place to start)!

  1. I don’t look pregnant anymore! Whooooooooooo hoo! You know because I’m not. I can’t tell you how embarrassing/insulting it would be for people to ask me if I happened to be expecting because my abdomen was swollen. It was that swollen. I can recall a time where I was on an aisle of baby products buying my friend a gift for her shower and a woman arguing me down about whether or not I was with child. Tuh! So glad it’s no longer swollen.
  2. My Crohn’s doesn’t act up as often! As one of my favorite reality personalities Tamar Braxton-Herbert would say, “Hallelu!” That’s a a throw your hands up and praise shout moment because there were consecutive weekends that I would be in the Emergency Room for yet another scan. The culprit most of the time (now we know this)? Those damn fibroids. Now that they are gone, I’m only having a crisis like 30% of the time.

Now for the “They didn’t tell me this shit would still happen” part (and excuse my language).

  1. Ovulation – still painful. Matter fact, it’s so painful now that I’m just like, “Is there another cyst? Was there a hidden cyst? Let’s go find it because I’m not about this life!”
  2. My cycles – still painful. I remember my doctor saying that there was a small chance that my cycles would still be 9/10 on the pain scale painful. I should have had her clarify as to what she meant by small because guess what? It’s still a 9/10 on the pain scale painful.
  3. The birth control I was on made my boobs grow. That was an unexpected expense I didn’t want to incur and a part of me who is sorta vain wants to say, “This is a good thing.” BUT nope. My chest hurts all of the time.
  4. Exercising is interesting. Even now, I still have abdomen pain near my incision and I still have to take things easy because I have no feeling in the area of my incision. Great! Not great!
  5. My anemia is still weird. There’s really nothing else to describe that. It just is.

I mean, that’s all I have. Just wanted to update you all. Maybe in a year, I’ll be able to say, “Hey Y’all! I’m cured!”

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12 Things I Wish I Had Known Before My Surgery

The other day, I was approached by a young woman on Facebook. She sent me a message because she’s going undergoing a similar procedure (well, actually the same procedure) and she wanted to know what were things she should look out for. I sent her a pretty lengthy message and I’ve cleaned up my answers here.

If you’re going through this, I hope that this helps! Happy reading! ­čÖé

1. Ask lots of questions!

This is for everyone! The hospital staff, your insurance company, family, etc. Specifically, you want to know about hospital procedure (especially with the anesthesia), how many days you’ll have to spend in the hospital, visiting hours, and other things that might concern you. I didn’t think of this until after I had my procedure but ask things like, “Will I be in a recovery room alone or will I have to share?” Another thing that I didn’t think to ask is whether I would be at a “teaching hospital” and if any of the staff have shadows or students. If so, ask if this will this impact your procedure or your recovery, and if they say yes, ask them in what way?

2. Take it easy!

It is a major surgery so only do as much as you possibly can without getting too fatigued. Do NOT (under any circumstances) push yourself or allow someone to push you to move or do something that you may not be ready to do. I didn’t take it as easy as I should have and as a result, I pulled some of my internal incisions/sutures opened. Because of that, I was put on bedrest (which was absolutely boring) and I have to be watched for more scarring. So rest!

3. Do everything you can to avoid constipation.

People tell you this but they never tell you how. Drink lots of clear fluids (preferably water and apple juice) & take 1 Colace pill before every meal. One thing they don’t tell you is that your pain relievers may cause constipation and you can get ahead of that by taking the colace before you eat your meals. Also, if your hospital lets you pick the food that you’ll get to eat (we had a menu and could choose our own combinations), pick the vegetables. Always…pick the vegetables! If you get nothing else from this, you want to make it as easy as possible for you to go to the bathroom because you can’t push to urinate faster or evacuate your bowels. You have to sit there…and wait. And if your nurses are anything like mine, they’ll keep asking you if you’re okay (which gets annoying). So up your fiber intake and drink water.

4. Rest up…rest up!

When you get home, rest. Rest on your couch. Rest in a reclining chair. Rest…don’t do anything except rest (okay, actually do what your doctor tells you to do but rest). I’m not sure how high your bed is but I learned that if you are lying on something, you want it as low as possible. You won’t really be able to use your core muscles for the first few weeks (they’ll tell you to use your arms to lift yourself) so you’ll have to be creative in getting up. Beds are generally higher than couches, so you increase your risk of tearing your incision and you don’t want that.

5. Eat smaller portions.

The portions that you normally eat should probably be reduced. You won’t be moving that much for the first few weeks, so don’t eat like you normally would. It only leads to constipation and unnecessary weight gain.

6. Snack and snack on soft stuff.

In addition to making sure your snacks are easily digestible, you’ll want to make sure that you don’t have to work hard to eat them. Your meds will make you sleepy. Nothing worse than struggling to stay awake while eating a snack. So what do you do? Get lots of snacks that are easily digestible (i.e., pudding, jello, applesauce especially, etc.) because those will help when you have to take your medication and it is not meal time. One of the things I experienced was vomiting due to taking meds on an empty stomach (don’t do that) and I learned that you use your stomach when you vomit. So everything about that experience was painful.

7. Wear comfy clothes & super pads!

That might be a bit TMI but who am I kidding, everything about this procedure is TMI. Wear loose clothing and invest in some heavy-duty sanitary napkins. You will experience some bleeding and this is normal. But you want the overnight or super absorbent napkins for the bleeding because they hold more and you can’t use tampons.

8. Don’t lift anything heavy.

Heavy here really means like you have to strain your arm muscle. They’ll tell you twenty pounds, so you definitely want to only pick up anything under than weight. But if you ask me, just stay away from holding small kids or heavy books anything.

9. Pillows as props are the rule of thumb.

Especially when you’re sleeping. They’ll have you start to sleep on your side after a few days. When they do this, use a pillow or two behind your back. It helps with the pressure. And it also helps you in getting up.

10. You’ll have to roll to get up…but not really.

When you go to get up, use your legs and arms. I started to do this trick where I would literally pull my knees to my chest, scoot to the edge of whatever I was on, and push up with my arms. If you consider yourself to be of the “I have no upper body strength” club, then start doing push-ups. You’ll thank me in the end.

11. Ask if they’ll give you Benadryl with your pain relievers.

The pain relievers while great will probably make you itchy . That’s normal. If you feel that, ask for Benadryl IMMEDIATELY! I now have scars on my legs because I scratched them after I would take my pain relievers (not realizing that it was the medication making me itchy). Once I figured that out though, they gave me the Benadryl and it was no problem.

12. Shower time & washing your hair can be tricky!

When you bathe or shower, I suggest getting a bath chair and sitting, but that’s only if you have a problem with standing up for a long period of time. I had that issue. Try to get your hair done in a style where you won’t have to worry about it for a few weeks. I couldn’t even hold my arms up to wash my hair until like week 3 or 4 of recovery (I had braids so it wasn’t that bad).

Other things that I shared:

  • 6-8 weeks is a normal recovery time.
  • Be careful because with an abdominal myomectomy because your lower abdomen WILL be numb (they cut your nerves so you can’t feel anything).
  • Wearing heels is out of the question — for a few weeks (just thought I would throw that in as a freebie).

Here’s to happy healing! If you have any questions, post them in the comments section.

~Ms. C. Jayne

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).┬á 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

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.┬áCamran 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