Our friends at the Endometriosis Family Support Group will be hosting a free screening of the EndoWhat? documentary with a live chat room so participants can discuss the film as they watch it together!
Want to attend? It’s going to be on Thursday, May 30, 2019, at 6:00pm PST. You must register online to get access to the webinar. Register now before you forget!
Good morning and happy Friday!
I started mine off my locking my keys in my Jeep. Ha! A great way to start a holiday weekend. 🙂 So, I calmly called AAA and waited for their tow truck driver to swing on by. 15 minutes later (and a lot of frustrated grunting from the driver) and my vehicle was opened and I was reunited with my precious keys.
How’s your day goin’?
Today’s rocky start led me to today’s quote. May it give you a bit of peace and insight, too:
“Maybe it’s not about having a beautiful day, but about finding beautiful moments. Maybe a whole day is just too much to ask. I could choose to believe that in every day, in all things, no matter how dark and ugly, there are shards of beauty if I look for them.”
― Anna White, Mended: Thoughts on Life, Love, and Leaps of Faith
May you have a wonderful weekend, regardless of what’s going on. But if you do need someone to talk to, you know I’m right here for you.
Love, Lisa
Bladder & Endometriosis: added a May 2019 study of a 40-year-old woman who suffered from two years of right flank pain. After several tests and imaging studies, she was found to have an Endometriosis lesion inside her right ureter.
Dungeons & Dragons & Donuts: added our February 2019 session; Chapter 24! If you’ve been following our saga, you don’t want to miss this!
Today’s quote is a bit odd in its origin.
It’s a tattoo on my back. It’s the state motto of Kansas. It’s engraved on a plague at the Apollo 1 launch site, honoring those who fell. It’s used on Pall Mall cigarette packages.
What the heck is it and what does it have to do with Endometriosis???
“Ad astra per aspera.”
Many years ago (yes, before my Endo diagnosis), a friend helped me find myself once more. I had been lost and floundering and he pulled me out of a deep, dark pit. He came to visit for the weekend to make sure I was okay. Before he left, he wanted to make sure I remembered our long talks, our soul searching, and our discoveries.
It was to be memorialized in a tattoo. The only condition was whatever phrase we both chose, it had to be in Latin. So we scoured the internet for our independent phrases. And I found this one: Ad astra per aspera.
I’d seen it translated in two ways:
And I knew I had to have it.
When I was a little girl, I was molested by my grandfather on numerous occasions. While going through counseling as a young teenager, my counselor would have me draw and she’d analyze my drawings. One day, I drew a rose growing out of a fly-covered pile of poop. She reminded me that something beautiful could grow out of the worst, most disgusting, conditions. And that I was the rose.
The phrase reminded me of that rose. It encompassed my sexual abuse, my divorce, my losing myself. I could – no – I WOULD rise up. Through thorns to the stars!
And every time someone asks me about that tattoo, I have a renewed sense of strength. I can, and I will, rise to the stars.
And it’s made moreso relevant because of my Endo diagnosis. Through thorns, through difficulty, through a fly-covered pile of shit – we continue to reach up toward the heavens, the stars, to beauty and vast possibilities. Yes; that means you, too.
You are beautiful. You will endure. And you will flourish.
Always remember that.
Love, Lisa
…and to that friend from many moons ago, thank you. You know who you are…
Food Grade Hydrogen Peroxide – added a 2019 study of a 26-year-old woman who used a hydrogen peroxide enema.
Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!
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I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.
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I hope you all had a wonderful week! Mine has had wonderful ups and laughable downs, but here we sit at the end of the week! Happy Friday!!!
Today I’m inspired by the tenacity of my fellow EndoWarriors. Women who have been handed a nasty hand of cards, yet continue to move forward, stand tall, and are not afraid to reach out for help or comfort when needed. Even on the downer days, wrapped up in a heating pad, popping pain medications, rubbin’ on CBD oil, or crying in a ball on the floor: that inner strength remains.
We lift one another up. Hold each other when we’re down. Fight for one another when the cause arises. We are a sisterhood. An army. A mighty force. We are incredible. And moreso with the bonds we’ve forged.
“Behind her gentle character, the strength of armor was found.”
― Erin Forbes, Fire & Ice: The Kindred Woods
Whatever sort of week or day you’re having, know that you ARE a mighty Warrior. And you have the support of those around you.
Stand tall, Sisters, and consider yourself hugged.
Love, Lisa
C-Sections & Endometriosis: Added a March 2018 study of a 35-year-old woman with c-section Endo; added a February 2019 study of 8 cases of Endometriosis developing in c-section scars; and added a February 2019 study of 2 women with c-section scar Endo.
Dungeons & Dragons & Donuts: Added our January 20, 2019, adventure (Sorry we’re a little behind…). Find out how tabletop gaming can help people deal with a chronic illness, forge friendships, and disappear into a fantasy realm for a few hours once a month.
Endometriosis & the Lungs: Added a May 2019 publication of a woman who suffered from recurrent collapsed lungs NOT during her period; yet received a surgical diagnosis of thoracic endometriosis. Your symptoms do NOT have to coincide with your period. Also added another May 2019 publication of a woman who suffered repeat collapsed lungs during her period.
Endometriosis & Wine: Added a Feb. 2019 study about resveratrol and its possible anti-inflammatory benefits for fighting Endometriosis.
Do you live in the San Diego area? Are you active or retired military or a dependent of someone who is? And do you want to learn about Endometriosis, treatment options, and how to cope with the disease?
Join us for an evening with Dr. Mel Kurtulus of San Diego Women’s Health (my excision surgeon!) as he speaks about Endometriosis to the Marine Corps Community Exceptional Family Member’s Program on Wednesday, June 5th at 6:00pm at the Marine Corps Recruitment Depot in San Diego, CA. I’ll also be talking for a few minutes about our support group, our events, the family we’ve created, and how you can join us.
All military and their families are invited. Due to the location of this event, it is restricted to active/retired military and their families only.
Call 619-524-0916 or email ombfamilycaresd@usmc-mccs.org to RSVP.
Date: Wednesday, June 5, 2019
Time: 1800-1930
Location: MCRD San Diego, Building 6E Classroom
3602 Hochmuth Ave.,
San Diego, CA 92140
Soooo…I’m 40 now. And for my birthday, my gyno had me run to get a mammogram. My baseline mammo. My first. Ever. I’ve had an aunty diagnosed with boob cancer, so I take my boob-health very seriously.
All I’ve ever heard were horror stories of pain and discomfort and smashed-thin tatas. “Take an Ibuprofen about an hour before the appointment,” I’d heard from various well-experienced womenfolk of mine.
Did I? No. I completely forgot…Crap.
So how was it?!?
I checked in about 20 minutes early and was given a wrist band with my identifying info (which I forgot I was wearing ’til 9:00 that night). I was then escorted to a room with a wall of lockers and an opposite wall of dressing rooms, asked to disrobe from the waist up, and to put on a thin (yet comfy) bathrobe. My sweater and bra were locked safely away in a locker (the key was secured to a bracelet around my other wrist) and I was asked to wait in a lobby nearby. There I sat for another 30 minutes with various gals of various ages, all of us wearing bathrobes, and either reading magazines or perusing smartphones. “For the comfort of our patients, no gentleman allowed” read a nearby sign. It made me smile.
“Lisa?” My name was called by a short, portly woman and she explained she was my mammogram technician and walked me to another room…where I saw a machine similar to the one pictured above. Okay…I don’t know what I expected, but not that. While she explained the procedure, and calmed my fears of “is it going to hurt much?” I tuned out and just wondered where my boobs went on the machine: On the black surface? In the little plastic basket? WHERE? What’s the clear window for? Well…I learned quite quickly:
If you’ve never had one before, here’s what to expect (at least what my experience was):
And that’s it! She advised me that the radiologist would look at the images that afternoon and I would be receiving a letter in the mail in 7-10 business days.
I nearly shouted in excitement how it didn’t hurt one bit and there was so much hype that I was ready for catastrophic pain. She shrugged, smiled, and said “It’s never hurt me either.”
My theory? I either got a REALLY gentle machine that cared about the well-being of my boobs, or a technician who placed them super-carefully, or my boobs are less sensitive than other women, or small tatas hurt far less than big boobs on the smoosh-machine.
My mum had me look into the mammograms they do these days where you don’t have to get smooshed. I called around; my insurance only covers the smashable boob machines. A few non-smashable mammograms are available in San Diego, but only for women who have been diagnosed with aggressive boob cancer and need extra special eyes and images.
The tech advised me that mammograms are a yearly occurrence. Do I look forward to doing it again in a year? Sure, why not? I get to wear a comfy robe, stare at my phone for a while, and have warm hands on my tits. Going to the pap smear is far more uncomfortable for me than a mammo. And the hour-long wait in traffic to get home was even more painful.
Oh…and a word of advice: if you do schedule your mammogram set it for the warmer months! She said in the winter the machine surface doesn’t retain heat and it’s REALLY COLD. So, I’ll be doing mine in the spring/summer months in the future!
And next year? Next year I get to have my first colonoscopy…stay tuned!!!
I hope you’ve having a GREAT day! If you’ve had a mammogram, I’d LOVE to hear your thoughts! What made it particularly awful or great? Drop me a comment below or shoot me a note. And here’s to hoping my experience dulls some fears if you’ve got an upcoming first boob-smoosh appointment.
Free workshop on endometriosis and pelvic floor dysfunction – how do they relate and why should you include a pelvic floor PT in your team?
Saturday, June 22, 2019, from 2:15pm – 4:15pm at the Mission Valley Library’s Community Room; 2123 Fenton Parkway in San Diego, California.
At this workshop, Jandra Mueller, DPT, of Synchronicity Physical Therapy will be discussing the role that the physical therapy plays – or should be playing – in your care. Jandra will discuss what the pelvic floor is, its functions, as well as treatments that may also benefit women suffering from endometriosis such as painful intercourse, “interstitial cystitis,” irritable bowel syndrome “IBS,” and small intestinal bacterial overgrowth “SIBO,” as well as the importance and tools to regulate the central nervous system. Jandra would also like to answer any questions you all may have regarding pelvic floor physical therapy! She has been working with women with endometriosis for the past several years and has also been one of the many women to suffer from this disease, so she understands firsthand how frustrating this condition can be! Please come join us on June 22nd for this exciting event!
Seating is limited, so please reserve your spot today.
We here at Bloomin’ Uterus are VERY excited to be able to help bring this event to San Diego. Jandra is an incredible EndoWarrior and friend.
Free tickets are available on Eventbrite. You can also feel free to RSVP on Facebook, but please secure a seat via Eventbrite. We are limited to 100 seats. If you do not wish to register via Eventbrite or Facebook, please contact me and I’ll put your name on the list of attendees.
And to those that cannot attend, we will *try* to videotape it and share the link.
While not Endometriosis-related, I feel this story needs to be shared. It may help someone make a similar decision…and save lives.
A longtime friend of mine whom we shall call Johnny Doe recently had a terrifying experience that almost killed him. And, had he not eventually decided to go to urgent care…he’d be dead. He’s allowed me to share his tale here with the world .
So, pay attention to your bodies. And do get medical care if you need it…I’m glad Johnny is still with us today…and has a renewed passion for living. Stay with us for a long while longer, Johnny. ❤
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So here’s what happened. I had been sick for the past 3 or 4 months. Possibly longer. I thought I was just getting a series of colds and flu. But it slowly got worse. I started eating less because food just became gross. I lost 30 lbs. I became increasingly physically exhausted. I started having an increasingly difficult time thinking… things stopped making sense. I started getting these very intense shivers, like I was freezing cold, and then i’d vomit. That started happening increasingly often, and when it became a couple times a day, that’s when I decided to go to urgent care.
By this time, I could barely walk, because of exhaustion. I guess I looked like death, because they took me back quickly. Blood test showed that my sugar was over 500 (i’m diabetic) and that my kidneys had stopped functioning because of a very severe infection. By then, I was kind of out of my head, and things happened fast. The catheter bag had a small amount of dark red urine and nothing more coming out, and so they decided I needed dialysis. So those months of colds and flu that I tried to ignore, was actually me being poisoned by my blood because it was no longer being cleaned by my kidneys. My blood had effectively stopped bringing energy too.
I do not remember getting the hemodialysis catheter put in my chest. I just looked down, and I had tubes coming out of the right side of my chest, and a couple extras in my forearms and in my right thigh. When things happen out of my control, I tend to go along with it. So I was in the mindset of do what you have to do to get through. But even then, it was like getting slapped by a buick. I was stunned.
It wasn’t until hours later, when I was in the hospital room, that all the discussions with the doctors started to really sink in. My kidneys were dead, and my life was dialysis to stay alive. I panicked pretty bad, and got really depressed. What was I going to do for work? Could I work on my car anymore? What is my life going to be like now? I was in the hospital for 2 weeks, while they tried to get a handle on the infection. They even thought it was cancer, I had a lovely and very painful bone marrow biopsy done. Came out ok.
To be totally honest, I enjoyed the hospital stay. No stress of work or home, got to lay in bed and sleep all day, food was brought to me. I eventually was able to eat some of it too. I was stunned that I had no energy. I could barely stand up. I basically had to build up the strength and energy to walk. That really knocked me for a loop. I got healthy enough that they sent me home. After the second day, I started vomiting and shivering again, so I went to the emergency room. The infection returned with a vengeance, and put me back in the hospital for a couple of days. New super antibiotic, and I started feeling better.
I now go to a dialysis clinic. It was 3 times a week for 4 hrs a time, but has been cut to 2 times a week, for 3 hrs. It’s not bad. Nice, friendly people there. You sit in a recliner, and they connect a couple of tubes from a machine about the size of a filing cabinet to the tubes coming out of my chest. Then you lay back, and watch TV. I bring a laptop and read some internet and then nap. It doesn’t hurt or anything, but I sometimes feel some weird random light cramps. Considering my blood is being pumped out, cleaned, and pumped back in, i’m ok with it.
My time was cut back, because my kidneys started working again. I’m currently at 30%, and if they continue to improve, I won’t need dialysis again. I’m what’s called “acute failure”, meaning my kidneys didn’t fail from genetic problems, or over use or abuse, but from an outside cause… an infection. I’m one of the very,very lucky few. I suspect they’ll fail eventually because of diabetes, but hopefully in the far future.
To be honest, this whole experience radically changed me. I smell and taste things differently now. I eat healthy and love it. I now have a desire to take care of my health, and I lost a lot of fears about the future and getting older. I faced a lot of things I was running from. I was terrified of dialysis, but I learned to accept it, and now i’m extremely grateful for it. It’s a wonderful, incredible technology that can literally save your life.
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Bloomin' Uterus 