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.

**

Feel Good Fridays!

Desert Oasis by Rennett Stowe; a pond in the desert surrounded by joshua trees at sunset
“Desert Oasis” by Rennett Stowe

Here we are, again! Already. FRIDAY!

As I saw contemplating what quote to find today, I thought of my closest friend. My seester, Rosie. We’ve known each other for over a decade, and have had some amazing adventures and have been there to hold each other as we cried over loss and turmoil.

I don’t want to imagine my life without her. We are to grow old together, rock that light-purple tinted hair (or blue), and cruise around the country in a short bus until we die.

Thinking of her made me think of all of my other sisters; my EndoSisters. And I realized that I, too, want to grow old with them, hold their hands as they cry, celebrate our victories together, and cannot imagine my life without them.

So, today’s quote is inspired by you, Rosie:

“Best friend, my wellspring in the wilderness!” ~George Elliott

Your friendship truly is an oasis in the desert. I mourn your absence. And spending our birthdays apart was hard. Know that I love you…as I know you love me. You truly are my other significant other.

And my EndoSisters, you truly are my family.

Research OutSmarts Endometriosis Study is ongoing

ROSE-logo-FINAL1

The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help.  They received the 2018 Innovation Challenge Award for researching potential diagnostic tests for menstrual effluent (aka period blood) – congratulations you guys!!  I’ve participated in the study and so can you. Yes, you!!  But you must be over the age of 18 and NOT pregnant or breastfeeding.   Don’t live in the New York area and feel like you can’t help in any way? That’s not true!  You can work via e-mail and express mail.

What’s the study all about?  Per their webpage, “The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis…Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system.”

What do you have to do?  You sign a consent and answer a few questionnaires.  Once enrolled, you provide a DNA sample either through a mouth swab or a blood sample (if you’re local), provide an authorization to collect tissue samples from your prior/future surgery(ies), and provide a sample of your menstrual blood (this part is totally optional). When I first participated in the study in late 2014, they only used a diva cup for collecting menstrual blood (which, due to my double cervix, I couldn’t do). But now they’ve offered the use of a small sponge to collect menstrual fluid, too. SO I GET TO DO IT NOW! 😀

I’ve also kept in touch with my contact with the ROSE study and sent them the op reports, pathology reports, and photographs from my 2016 and two 2018 surgeries. If you’ve already participated in the ROSE study and have had subsequent surgeries, please feel free to keep them updated!

Also, the folks at ROSE still need the help of parents, siblings, or children of someone who suffers from Endometriosis.  This goes for men and women!  I know I’ve poked my brothers and mum to help with this one!  Please feel free to pass the ROSE Study link on to your immediate family members! They would answer a questionnaire, provide that same mouth swab DNA sample (or a blood sample), and have the option to provide some period blood (well, the ladies would).  I always hear, “I wish there was something I can do to help…” and now they can!

Don’t have Endometriosis?  YOU CAN STILL HELP!  The ROSE study is looking for control groups (aka women without Endometriosis) to compare to those with Endometriosis.  You’d go through the same process:  questionnaire, DNA sample, period sample (again…this last bit is totally up to you).

Reach out to someone on the ROSE team by contacting them:

Telephone: (516) 562-ENDO (3636)

Email: ROSE@northwell.edu

Webpage: https://www.feinsteininstitute.org/rose-research-outsmarts-endometriosis/how-get-involved/

A flyer for the ROSE Study can be read here if you’d like more information: ROSE Endo Flyer 2018_0522

*And if you talk to Margaret, tell her Lisa and Bloomin’ Uterus say hello*

Together we can help push for a better understanding of Endometriosis…and one day: a cure.

April 2019 Pain Journal

April 2019 pain summary

April is over with! Which means, time to share my pain & poop journals! (Is it weird that this is now one of my favorite blogging days?)

But first: the synopsis: I skipped another period. I mean, really, who wants a cycle in April? I only had a few days where I’d literally have like one tiny clot or one instance of a bit of brown goo when I wiped after I peed; I couldn’t consider that a period. I discussed my skipped February and April periods with my gyno; we’re gonna monitor it and see if it continues to happen.

Most of April was pain-free, and the pain or discomfort I felt was due to eating too much or not pooping for a day. Hubby and I had one instance of painful sex, and that was with deep penetration hitting the cervix. And one day I had a sharp, stabbing pain in my lower left abs that wasn’t like my usual “I ate too much” poo-discomfort. I wasn’t able to identify the trigger, but it luckily didn’t last long. And I didn’t have one single painful bowel movement. I love the new Endo-free guts! Zero need for over-the-counter pain medications or prescription pain medications this month!

And here we go! If you’d like to review the day-by-day pain and food journal, here it is.

And for your viewing pleasure, my poop journal! I’m learning the new pattern: if I haven’t pooped in a day, I’m bound to have diarrhea the next day. Sometimes lots of it…