Free Pelvic Floor Therapy Workshop

Free pelvic floor therapy workshop flyer

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.

A Life-Saving Trip to Urgent Care

Emergency room sign

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. ❤

**

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.

**

How much did your physician get paid?

Chart showing Top 10 physicians paid by Abbvie Inc in 2017
Screenshot of Abbvie General Payments, 2017.
Is your doctor on this list? Curious how yours lines up? Feel free to run a search.

There’s a site available where we can now look up our physicians to see what they’ve been paid by companies for their time at speaking engagements, travel, training, and even research.

Why is this helpful?

It might not be. But it’s a wonderful way to get a snapshot of what companies may be lining the pockets, and possibly influencing the choices, of your doctor. (Yes, that’s the conspiracy theorist in me coming out).

Open Payments Data is run by the Center for Medicare and Medicaid Services has a searchable database where you plug in your physician’s info and it brings up their data for the past few years. Or you can search by company! According to CMS, the site was created “to provide the public with a more transparent healthcare system.”

For example, the image above is a breakdown of the top 10 physicians paid by Abbvie, Inc. in 2017 for speaking at events, consulting fees, grants, royalties, education, travel, food, and lodging.

A further breakdown of payments is available, telling you how much a physician was paid for each category (speaking, food, lodging, etc.). If you have questions about what the payments were for, it’s best to reach out to your physician and ask. The site doesn’t provide specifics; just data.

I’ve already looked up my excision surgeon, my colorectal surgeon, my primary care physician, and a few other surgeons I’ve heard of. It’s been fun! Have at it…and strike up a conversation with your physician if you feel so inclined.

Here’s the 2017 general payments breakdown for my excision surgeon, Dr. Mel Kurtulus:

Snapshot of OpenPaymentsData 2017 General Payments to Dr. Mel Kurtulus

And here’s the 2017 general payments breakdown for a popular Endometriosis physician down here in San Diego, Dr. Sanjay Agarwal:

Snapshot of OpenPaymentsData of 2017 General Payments to Dr. Sanjay Agarwal

Notice the difference? I sure did…

Happy hunting!

~ 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

An Update on my Insides

Various clocks, all showing 12:45pm

On April 22, 2019, I met with my excision surgeon and gynecologist, Dr. Mel Kurtulus to discuss the results of my annual pap smear, ultrasound, and blood work.

The pap smear came back normal for both of my cervixes. Yay! The blood work came back stellar. The ultrasound; however, had some not-so-welcome results:

  1. My left ovary is developing a cyst. Not just any cyst, but it’s either a hemorrhagic cyst… or (wait for it…) an endometrioma. Right now it is small, coming in at 1.5cm (a little over 1/2 an inch); and,
  2. Small abnormalities within my uterine wall may be signs of adenomyosis. This came as a surprise…but I let him know I was familiar with the condition as many of my EndoSisters had it as well. I’d done research and blogged about it back in 2016.

The plan? To remain positive – it’s a small enough cyst that doesn’t warrant any action (yet), I’m not in ANY pain, I’ll have a follow-up ultrasound in late July, and I’ll meet with Dr. Kurtulus in early August to discuss those results. I will continue tracking my diet, pain, and symptoms in the meantime. And if anything sparks up horribly before then, I’ll call for a consult.

We spent several minutes afterward discussing an upcoming event that we’re hosting together, as well as a few concerns about ultrasound and post-op procedures. The meeting ended in our usual smiles and hugs.

I think if I were in pain, being positive would be harder to maintain. But the only indication that I have anything wrong on the inside (or the possibility that my endometriosis is coming back) is my ultrasound. But will I need surgery in the future? Only time will tell. And will I miss out on future vacations, like Burning Man (a place lovingly referred to as Home, a week spent making amazing memories with friends)? I haven’t been able to return since 2015…and I miss it. Who knows. My best friend and other-love-of-my-life, Rosie, lifted my spirits yesterday with “…you are more Home for me than any place. We don’t need any destination.” So if I am robbed of another two weeks vacation in the future due to a need for another surgery, I won’t lament. I will make other plans with those that I love.

Forging lasting relationships with your medical providers and their staff can lead to amazing experiences and friendships. These people aren’t just my doctor, his nurses, or administrative staff. I consider them my friends. And we’re all in this together.

I don’t know how I got so lucky. I was randomly assigned this gynecologist by my Primary Care Provider back in 2013 because I moved to San Diego, had new insurance, and was in need of a pap smear. And I am so very, very, very grateful.

A friend, fellow EndoWarrior and Sister of our local support group sent me a study showing results of N-Acetylcysteine reducing the size of endometriomas in a small study group. So, I’m going to give it a try. She had previously received a “it can’t hurt” approval from Dr. K when she brought it up to him for herself, so I’m sticking to the study dosing, three times a day, and will see how it looks in July.

So, the plan is in motion. The appointments are on my calendar. And life goes on.

And jokes are always a good thing: “Your an ova-achiever” and “Stop growing so much stuff!” and “At least your left ovary is still working well” are all fun observations since yesterday. They all made me laugh. Still do.

All is well

Woman standing in towel showing stomach after laparoscopic surgery a week earlier; four incisions covered by bandages. Taken by Lisa Howard, July 2018
© Lisa Howard; 2018

Thank you to everyone for the outpouring of support from my emotional Friday. I’ve received so many virtual and in-person hugs. It’s awesome. You guys are awesome.

I wanted to let you know I’m doing well. I look forward to my meeting with my physician on April 22nd to go over the ultrasound results and have a heart-to-heart talk. And trying to remain positive.

What’s up with the above-photo? I recently developed a roll of black & white film that had been in my camera for the past several months. I couldn’t remember what was on it, but I do have one rule when it comes to my photography: one weird, creative, or special selfie must be taken. It’s often hit and miss as it’s an old camera (a Minolta XG-1 from 1982) as there’s no auto focus…haha, but it always makes for a fun project.

Yesterday I picked up my pictures from the developer here in San Diego. And the above photograph is the very first one in the pile. I had totally forgotten about taking it. Was clueless it was on there. And wasn’t prepared for the flood of emotions that boiled up to the surface. This was taken about a week after my July surgery.

I felt sad, then angry at this relentless disease, then sad again. Overwhelmingly so. But as I stared at the photo while safely tucked inside my Jeep parked in the parking garage in downtown San Diego trying not to cry, those negative feelings morphed into something else: a sense of pride, strength, and courage.

There I was, a week after my surgery: I felt well enough to shower alone. And set up the camera on the bathroom counter, tinker with settings, and cross my fingers hoping it would come out. Unashamed of the broken body that the camera would capture, I stood tall and strong.

And this photograph captured that moment.

My moment.

Our moment. I know that you, EndoWarriors, have stared into the mirror at your incisions, your bandages, your scars, your pain. Stand tall with me.

We can get through this.

All is well.

Regardless of the journey…We are alive, and we are in this together.

A positive spin on a painful situation

Maggie Flood selfie

Our friend and local EndoSister, Maggie Flood of Sacral Spaces, shared something very uplifting in our support group’s page today and I wanted to share it with you:

Just wanted to share a little piece of my weekend with you guys! I posted this on Insta because I am feeling SO GOOD today after my weekend flair-up, and here’s why:
….
I had what I can only describe as a flair-up of some sort this weekend. Is it “autoimmune”? Yeah, probably. Is it from “endometriosis”? Eh, maybe. Is there something wrong with me? No, everything is correct, because the diagnosis nor the label matter. What matters is that something happened, and I knew what it was that set me off. On Friday night I let myself get too hungry before we went to a friend’s birthday gathering at a crappy bar. I felt faint and needed SOMETHING so I ate a piece of a friend’s quesadilla in utter desperation. Fast forward through two days and my abdomen felt like burning charcoals from the inside, the skin all over my body feeling like a bruise to the touch… random shooting pains like electricity through my wrists, fingers, and hips.
.
Here’s where I can choose to say “life is awful – I can’t even have some cheese without being in pain.” Instead I choose to say, “Life is amazing. My body is AMAZING! It’s BEAUTIFUL how sensitive I am. I’m so grateful that I have a body that can tell me what’s right and what’s wrong.” Only I can experience what I experience.
.
Instead of forcing myself to do more than I could, I laid on the beach and continued my research on trauma and autoimmune disorders yesterday (how beautifully hilarious and timely). When I felt them I took some moments to close my eyes and allow the electric shocks run through me, felt my body recalibrating. I imagined the sun soaking them up. I felt the cold spring wind. I laughed. I’m alive, and I’m human. This is what I signed up for.

Thank you, Maggie. I oftentimes bemoan the fact that I can’t have this or can’t have that. And I truly hope that your positive body thinking reminds me later that I am grateful for the body I have and the awareness that comes with it.

Maggie will be teaching a class on Navigating Painful Sex on May 19th in San Diego. If you’re interested in joining us, we’d love to have you!

Endo Support for Moms, Dads, Partners, Family & Friends

Icons of computers, email, worldwide web

As a few of our attendees talked during our recent walk, it came out that they, as a supporter of someone with Endometriosis, would like a place to be able to continue conversations, ask questions, etc. with each other. Some don’t have Facebook, so we started a Google Group (which will allow you to correspond with each other either via email or a forum online).  Feel free to join:

If you’re a mom of an EndoWarrior and want to talk to other EndoMoms, please check out our new email-based Google Group, EndoMoms.

If you’re a dad of an EndoWarrior and want to talk to other EndoDads, please check out our new email-based Google Group, EndoDads.

If you’re a partner of an EndoWarrior and want to talk to other partners, please check out our new email-based Google Group, EndoPartners.

If you’re a supporter (friends or other family member) of an EndoWarrior and want to talk to other supporters, please check out our new email-based Google Group, EndoCircle

And if you’re an EndoWarrior, please feel free to either join our private Facebook group or our Google Group.

(This is all in the beginning stages…but it’s a baby step that needed to be taken)

And thanks to the Moms who got together and voiced this idea to me. ❤

Calling all Oklahoma-based EndoSisters

Outline of Oklahoma with a yellow awareness ribbon

Do we have any Oklahoma EndoSisters? We have a blog reader who lives in Idabel, Oklahoma who is looking for Sisters to connect with. Not only connect with you via email, but also either find a support group nearby or start one!

If you’re anywhere near Idabel, Oklahoma…or in Oklahoma ANYWHERE…or want to connect with this EndoSister in Oklahoma, please drop me a comment or send me an email and I’ll connect you. It’s never good to feel alone in your area…

Free Webinar: Discussion with Dr. Aykut Bayrak

Flyer from Endometriosis Family Support Group for Dr. Aykut Bayrak's webinar on March 20, 2019

The Endometriosis Family Support Group hosted a free webinar on Wednesday, March 20, 2019, at 4:00pm (PST) featuring a discussion with Dr. Aykut Bayrak with LA IVF. He discussed Endometriosis diagnosis and treatment options.  If interested, please e-mail Megan at megan@RMCcharity.org to register.  If you cannot attend on March 20th, we will share the recording once we receive the link.

If you missed the live broadcast, here’s the recording!