Share Your Story: Lakia

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Lakia was diagnosed with Endometriosis when she was 29 years old, after suffering with symptoms since the Sixth Grade.  Now she’s 30, living in San Diego, and she’s found our little support group.  I met Lakia just a few weeks after her diagnositic surgery and she’s recently undergone a difficult decision for her second surgery! Lakia has proven to be an amazing and incredibly strong woman, and someone I am proud to call friend.  Her story follows…

Lakia’s Journey: I always thought in my mind that my reality was normal. But what is normal? My first period was in sixth grade. I remember being so excited because I finally felt like a woman! I stuffed my bra everyday, secretly shaved my legs, and wore tinted lipgloss. But that first period felt like a rite of passage. All of the boys will like me now! Little did I know what was ahead…

Every month during school, I would bleed through my pads because of the heavy flow. I was too afraid to get up during every session at school, and didn’t want the attention constantly drawn to me when I had to leave the room with a pad or my purse. Everyone would know… Instead, I would bring jackets and sweaters to school, and keep them wrapped around my waste to soak up the leakage. This became my sixth grade’s self normal.  In high school is when I recall the pain becoming unbearable. But, all girls complained about their period. What would make mine different or more significant? When they became irregular, I finally was put on birth control pills. I took 1000mg of naproxen every 8 hours when I was in my cycle as well as the polls through college. The medicine helped with the pain for the first few years, but over time the cramps became debilitating again. After college, I decided I need to give my body a break and stopped all medication.

Fast forward to 29 years old, and I’m living in San Diego. January 2016, the year of 30 kicks off with a vengeance. The worst period of my life- vomiting, debilitating cramps, flooding from bleeding, you name it, I had it. When the bleeding stopped, the symptoms didn’t. I decided to go to the ER after trying to push through it for a week. Diagnosis was a hernia, fluid in my lungs, anemia, and fibroids in my uterus. They couldn’t do anything for me except give me pain meds and send me on my way. For the next three weeks, I visited 10 different doctors, has CT scans, ultrasounds, blood tests, X-rays with not solution. I lost close to 10 pounds living on norcos to ease the pain. In an transvaginal ultrasound, they found a softball sized mass in my uterus. The GYN wanted to operate immediately due to its location. Unfortunately, I was anemic which would likely mean I would a blood transfusion during surgery. I had a month to iron overload.

Surgery is complete.  Unfortunately, my GYN was not able to remove the mass as it was attached to my bladder. She drained it and assured me that it would be back. What should have been a laparoscopic surgery became a lapraromy as soon as they went in due to the their findings of severe stage 4 endometriosis. I got to spend a night in the ER. Post surgery, it only took about a week for the pain to return. I was told to start taking two birth control pills a day to help with the bleeding and pain. My GYN said she didn’t feel comfortable operating my endo because it was so complex, so she referred me to another doctor.

He, also after reading my surgical report didn’t feel comfortable doing a procedure, and suggested Lupron and referred me to a gynecological oncologist. I originally agreed to the shot. While I waited to have it administered, I took a month to do some soul searching and listening to my body. It wasn’t right. I couldn’t take the shot. The oncologist agreed to the surgery. He did admit to me that he felt a bit of ethical concern giving a woman who has never had children and only 30 years old a hysterectomy and gave a bit of pushback before agreeing to the surgery.

December 13, 2016- surgery day! I had a full hysterectomy. He wanted to try to keep some, but they were all obliterated by the endo. In the middle of the procedure, he had to call my dad because the disease has spread to my bowels and appendix. About 5 inches of my small intestine, 5 inches of my large intestine, and my appendix were removed requiring that he perform an organ resectomy. He predicted that I would have had to have emergency surgery due to organ failure caused by the endo within the next few months if he had not operated on it that day. My doctor was relieved that I went with my gut, and pushed for the surgery instead of waiting.

After six days of being attached to IVS, living with a draining tube coming out of my stomach, and hour long sleep sessions, I was free!!

I’m in the process of recovering still (2 months post-op), and I never would have imagined that I would feel this amazing! I know I have a long road ahead, with the possibility of the endo popping back up, but every decision made, tear shed and prayer prayed has been absolutely worth it.

Words of Advice for Us:  Sisters- two things that are so incredibly important through this whole journey… SUPPORT!- Thank God that a friend found the Bloomin’ Uterus group for me! It’s incredible to have a connection with so many strangers that can relate, mentor and just listen when you need them. And friends!!! My friends and family have completely blown me away with the amount of love, compassion, and time they have spent learning and loving me through this process. My Dad came to every single appointment with me, and I even had over 50 people show up for a going away brunch for my uterus!!! Knowing that you’re not alone is half of the battle! LISTEN TO YOUR BODY- like I said, my doctor wasn’t gung-ho about the surgery, but was incredibly happy we went through with it in the end. A hysterectomy is not the answer for everyone. It’s certainly not a cure. But push, plead, fight for what’s good for you and your body. You deserve it!!

The Last Word:  Thank you Lisa Drayton for your positive energy, informative posts, and constant encouragement!!! You are truly an incredible person!!!

If you wish to contact Lakia, you can email her here.

I want to send a special Thank You out to Lakia for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you found us and that we met, but am especially grateful that you followed your instincts!  A second surgery is never easy – ad your decision to undergo the full hysterectomy was a difficult one, but I am SO VERY HAPPY for you!  Good for you for pushing self-advocacy!!!  Wishing you a continuous good recovery!  I will walk proudly beside you on March 25th! Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Feel Good Fridays

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Welcome to another Friday morning!  I hope you’ve had a great week.

Steven Maraboli once wrote,

“Sometimes life knocks you on your ass… get up, get up, get up!!! Happiness is not the absence of problems, it’s the ability to deal with them.”

I know sometimes we’d like to wallow.  Just sit there in our suffering and cry…and that’s okay.  But, always remember that we DO have to get up and move on.  And you don’t have to do it alone – ask for help.  Extend a hand to someone you notice may need assistance “getting up.”  Be there for each other.  And, hopefully, find a little bit of happiness.

Over the past week, I’ve updated several past blog entries with new studies.  If you’re interested in giving them another looksy:

Bladder & Endometriosis: added 2 2017 studies

C-sections & Endometriosis: added Jan. 2017 study

Cervical Endometriosis: added Jan. 2017 study

Lungs & Endometriosis: added Dec. 2016 study

I hope you have an incredible week coming up!  And find time to rest.

Yours,

Lisa

Our 2017 Walk & FREE Bracelets!

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Well, our walk is 58 days away from today and we’re nearly at capacity! We have 98 registered walkers (as of this very moment) – and we are only allowed 100!  The San Diego Port Authority permit and our event insurance has maxed us out at 100 participants.

I cannot wait to walk with you!  Anyway…FREE STUFF!

Once you arrive at the Island, find our little shade structure and check-in, you’ll be able to earn your free Endometriosis Awareness Bracelet.  There will be a small sign with instructions, a box, some pens, and a bunch of freebie bracelets (one per person, please).

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Put your thinkin’ caps on!  Or be prepared to meet new people and ask them what they know about Endo!

Not going to our Walk, but still want our bracelet?  Submit an entry to our Coloring Contest (going on from now until April 1, 2017)…and see if you win!

 

New Study: Self-Tracking Your Endometriosis

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An article published in the December 2016 issue of the Journal of Participatory Medicine focused on women with Endometriosis tracking their symptoms, diet, etc.  In this day and age, there are several smartphone applications that can help you do this. Or…find your own system.

I myself use Google Slides to track my daily food & drink intake (and bowel movements), as well as any pain or symptoms I experience, and sexual activity and pain.  I’m a visual kind of person, so I also have an image that I draw little red squares where I have pain…These slideshows may come in handy at future doctor’s appointments – not to mention help me understand what may (or may not) exacerbate my symptoms.  It’s also how I learned that strawberries (mmmm delicious strawberries) really, really, REALLY wreak havoc on my bowels…ohmigawd.

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Screenshot of 10/18/16 symptom journal
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And from last week – since recovering from surgery, I have *mostly* pain-free days

Anyway – back to the study!  I’m not the only one who enjoys doing this!  Twenty-seven women in New York participated in a study wherein they tracked their pain; menstruation; diet, exercise, and weight; GI issues; fatigue, sleep, or sickness; life events; mood and emotions; comorbitities (other illnesses); and treatments.  These women also attended weekly focus group meetings at the Endometriosis Foundation of America.   It empowered these women to participate in a research study, better communicate with their providers by documenting their symptoms, and manage their symptoms by better understanding their triggers.

Like I said earlier, I enjoy Google Slides (it’s easy, accessible on all my platforms, and I can keep it organized per month).  The women in the study also learned what they liked best: some used good ol’ fashioned pen and paper, others typed notes, others used Excel spreadsheets, others used Google Docs or Google Sheets, and yet others used their electronic calendars.  Many of these women (myself included) used a smartphone application specifically for monitoring their periods.  And now there are smartphone apps specifically designed for tracking Endometriosis.

If you’d like, there are several Endometriosis tracking smartphone applications available to either Apple or Android devices.  I’m not going to recommend any here because I want you to find the best one that suits your needs.

Self-tracking can very well give you a sense of control and empowerment over Endometriosis.  If you track your symptoms, food, pain, etc., I’d love to hear from you in the comments below.  What do you use?  Any tips or tricks for our readers?  How has it helped/hindered you in any way?

Resources:

Journal of Participatory Medicine – (Article; Dec. 2016) Exploring Self-Tracking as a Participatory Research Activity Among Women with Endometriosis

 

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Feel Good Fridays!

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We did it! Wrapped up another week! And here in SoCal, it’s a soggy one! YAY! I love the rain!

Today’s quote is inspired by our present state of rain.  Written by Tony Hillerman,

“From where we stand the rain seems random. If we could stand somewhere else, we would see the order in it.”

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Again, it’s all about perspective.  Take a step away from your present chaos, try to look from the outside…see if there is, in fact, order and reason to whatever it is you may be going through.  Or at least a purpose.  Muddle through it, get wet, fight.  It will cease, and you will pull through it.

Feel Good Fridays

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We made it through yet another week! They fly by sometimes, eh?

Today’s quote is from America author, Maya Anglelou:

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”

This one hit me hard…and is very close to home.  I feel so many struggles in my life have made me who I am today – a stronger and better person.  And I hope the same for you.

❤ Lisa

 

Calling All EndoSisters

Sharing this once more! I’ve started contacting our local San Diego High schools and have met a few positive responses! If you’d like to reach out to schools in YOUR area to spread awareness about Endometriosis – here’s one way we can help!

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The Endometriosis Foundation of America needs our help! Have you been wanting to spread awareness in your local community? Educate the masses, especially young girls? The EFA has finalized their EduKit (based from their 3-years of experience teaching schools in New York about Endo). Do you work in a school? Know someone who does? Have an interest in contacting schools or even leading a course yourself? The EFA says you can even help from the comfort of your own couch! Fill out this application for more information!

https://docs.google.com/…/1FAIpQLScQir2GL0Cw22-tNr…/viewform
I’ve said that I wish I knew about this disease since High School.  Wish I had even heard of it and the symptoms so I could have talked to my doctors in my teens, 20s, and 30s.  Ugh.  Well, the EFA is taking steps to implement a nationwide education campaign and you can help in the tiniest of ways!
I really don’t have…

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A New Publication re: Abdominal Wall Endometriosis

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Some of you may have read my previous blog about Cesarean scars and Endometriosis (if you haven’t, you can read it here).  In the studies referenced in that blog entry, all of the women complained of bumps or lumps or pain in their c-section scars.  Turns out they had developed Endometriosis in their scar tissue; likely the cells were transferred during the surgical procedure.

But…correspondence published just a few days ago references a woman who was found to have Endometriosis growing within the fascia of her abdominal wall nearly 1.25 inches above her scar line.  She was 41-years-old and had complaints of the bump for the past 3 years.  It didn’t bug her; she had no symptoms.  It wasn’t discolored…it was just a mass.  A bump.  A lump…that just sat there.  She had previously undergone two c-sections (one seven years ago and one 10 years ago).  An ultrasound classified the lump as a cyst, nearly 32 x 23mm (1″ x 1.25″) in size and doppler scanning showed it had a blood flow.  So, a biopsy was taken, which revealed it was an Endometriosis mass.  It was excised and hadn’t come back within six months.  But it was, in fact, confirmed as Endometriosis.

The authors hope that this leads healthcare workers to consider the possibility that masses outside of abdominal scarring may be Endometriosis.  They’re not just limited to appearing within surgical scars.  The mass needs to be biopsied and handled accordingly.  If you’d like to read the study, it’s linked below.

Subsequent to the writing of this original blog post, I learned of another episode of abdominal wall Endometriosis (so I’m updating it here).  A 36-year-old woman who had no medical history except for a c-section complained of a lump (that didn’t hurt at all) on the left side of her lower abdomen.  An ultrasound found thickening of the abdominal muscle in that spot and an MRI was able to confirm that this thickening was a lesion which gave signs of bleeding.  Her doctor suspected abdominal wall Endometriosis and excised the mass.

A recent April 2018 study was published about a 36-year-old woman who complained of a pain along her appendectomy scar.  She had her appendix removed previously and pain had begun along her scar line two years ago. It continued to worsen until she found herself in the ER because of the severity of the pain.  A CT scan identified a mass withiin her abdominal wall.  Surgery was performed, the lump was excised (along with nearby “chocolate shaped secretion areas” which were located between internal muscles), and a biopsy confirmed the lump was Endometriosis.  Appendectomy scar Endometriosis may be incredibly difficult to diagnose without surgery.

Got a bump in or around your c-section scar?  Talk to your doctor!  Haven’t had a c-section, but still have a lump or bump?  You should still go talk to your doctor.

*Updated May 24, 2018*

Resources:

Clinical & Experimental Dermatology – (Article; Jan. 2017) Development of Abdominal Wall Endometriosis in a Region Distant from a Cesarean Scar

Journal of Clinical Urology (May 2017; Article) Abdominal Wall Endometriosis

Middle East J Dig Dis (April 2018; Article) Appendectomy Scar Endometriosis: A Case Report

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa