Feel Good Fridays

Good morning, Readers! Welcome to another Friday. ALREADY!

A good friend of mine mentioned yesterday that she bought that hardening chocolate ice cream syrup to treat herself. She realized she needed to be nicer to herself. And treating herself was okay.

Today’s quote is sort of my 2020 New Year’s Resolution. And brought home moreso by my friend’s story yesterday.

“Talk to yourself like a cherished friend. Treat yourself with love and care. You are perfect, just as you are.”― Amy Leigh Mercree, The Compassion Revolution: 30 Days of Living from the Heart

Love yourself. Know that you’re worth it. Try to avoid self-deprecating thoughts and talk. Treat yourself well.

I decided earlier this year that I was going to invest in my health. Try to stop buying little things and fancy baubles and clothes and toys and books. And start buying things that may help me and my health.

  • I’ve invested in a veggie spiralizer and have enjoyed sweet potato and zucchini noodles.
  • I hired a personal trainer after my surgery restrictions lifted and “see” her once a week. C-19 has put us into virtual mode. The rest of the week I use her hybrid program and smartphone app.
  • I’ve learned to propagate my succulents and am filling my life with beautiful, happy li’l plants.
  • I go to acupuncture twice a month.
  • I finally purchased and take supplements/vitamins better targeted for my body, including DIM SGS, n-acetylcysteine, a great probiotic, an organic women’s multivitamin, calcium, iodine, curcumin, additional Vitamin D3, and fiber. I even purchased the Chinese herb tincture at my last acupuncture appointment to try to level out some menstrual-phase issues I’m having.
  • I bought a Tushy poop stool.
  • I purchased and am reading Stamped From the Beginning to better understand the history and ideals of racism.
  • After years of paying day-use fees, I finally purchased a membership to my favorite clothing optional resort.
  • I signed up for Sacral Space’s 6-week pelvic floor reset program.
  • And I most recently acquired a personal at-home blood pressure monitor.

And it’s been wonderful. Now, the second any of these treats-to-myself become a financial difficulty or burden, I will stop. But for now? It’s been great. I really have enjoyed treating myself. Especially to something that may help me greater in the long-run.

Whether it be chocolate syrup, a good book, a piece of nostalgia, renting a movie, or WHATEVER – what’s your favorite thing to treat yourself? Share in the comments below! 🙂

And have a beautiful weekend. You’re worth it. All of it.

Love, Lisa

Pelvic Reset: A 6-week Course

Hi guys!

Maggie Flood is a good friend of mine, and an EndoWarrior in our local San Diego group. She’s also a licensed Acupuncturist, certified Sexological Bodyworker and holistic pelvic care practitioner.

She’s put together and is hosting a six-week course on resetting your pelvic floor…and so much more. It will use Zoom for weekly meetings (which will be recorded if you can’t attend live), downloadable meditations, exercises, journaling homework, and a support community of fellow participants.

A course description:

“Pelvic Reset is a 6 week long assisted journey to guide you back to your body, uterus and root. As this course is open to all women and those with vulvas who wish to reconnect with themselves, it is especially useful for those coping with pelvic pain or female-bodied sexual dysfunction. Within this 6 week program you’ll learn the basics of embodiment, nervous system self-regulation, how to use pleasure for healing, lineage mapping your womb space, as well as new and ancient medicinal techniques to manage pain and heal from surgery or trauma. This course is designed to bring you into a new experience of your sexuality and relationship to your pelvic floor. A very special reset button, indeed.”

For more information, and to register, please check out her site. There’s a registration fee, but if you’re not happy with the program within 30 days, there’s a money back guarantee.

I’ve vowed to invest in my health this year, so I’ve already signed up. I just wanted to share in case this interested some of you.

Pain Journals: March 2020 – June 2020

Wow. It’s already July. I’m so far behind! Hahaha. Well, I wanted to catch up! So, here’s my pain journals for March through June of 2020!

One big shebang! Then I’ll get back on track of my monthly publishing!

March was ongoing pain on both the lower left and lower ride sides of my lower abs (a 4 out of 10), more intense on my period (6 out of 10). Sex and bowel movements were both with and without pain.

April also had the same ongoing pain, but the poopin’ hurt a lot less. The lower abdominal pain also intensified while I was on my period, reaching a 7 out of 10.

May’s pain journal looks terrifying. But it’s also my surgery-month. So, a lot of the pain and discomfort was post-op. But before surgery, lower abdominal pain was about a 4-6 out of 10. While on my period, that number soared to a 9 out of 10. On my period I also had mirrored lower back pain and painful urination. After surgery, I attribute most of the pain (including bowel pain) to healing from the procedure. Everything was angry.

June may still have been a lot of healing/recovery pain from surgery. Sex hurt. Poopin’ hurt (sometimes a 9 out of 10 glass-through-the-guts feeling), and a lot of lower abdominal pain. My period was a doozy and required two halves of Tramadol to control. June had a lot of pain with what I call “shifty poo pain”…pain that usually happens several minutes before I poo. Again, glass through guts. Almost always on the lower left side.

This has been a sit, wait, watch, and hope process. July’s pain journal has it’s own ups and downs (you’ll see at the end of this month), but I’m still watching, waiting, and hoping.

Below are the slideshows if you care to see my daily journals for each month.

And following are my poopy-graphs, if you’re a visual person and care to follow the pain with poopin’ journal (clicking on a month will download a PDF file). You’ll notice some painful poos in March and April, but an insane amount after the May 13th surgery. I would like to think it’s just healin’ guts…only time will tell.

March

April

May

June

Do you track your symptoms and share your trackers with your healthcare providers? If so, what do you use? Leave me a comment below! Let me know your system!

Review of the ReliefBand 2.0 for Nausea

Nicole Tamillo sportin’ her nausea ReliefBand with her cat, Meeko

Do you suffer from nausea? Did you know there’s a drug-free device that may help ease those symptoms? What??

First, an introduction: If you follow the Bloomin’ Uterus Instagram account, you’ve “met” Nicole Tamillo. She’s my friend, confidant, an Admin of our Facebook group, and fellow EndoWarrior. And she is far more tech savvy than I!

Anyway, one of Nicole’s major symptoms when she’s having an Endo-flare is nausea. Extreme nausea. I had heard about a wristband that may help with nausea, so I reached out to the company to see if it would help with Endo-induced nausea. The wonderful folks at ReliefBand offered to send her a complimentary ReliefBand Premier to try out for her Endo-nausea. HOW AMAZING!!! Nicole and I wanted to share her unbiased review, thoughts, results, and excitement with you:

Hello! My name is Nicole Tamillo. I am 27 years old. I was officially diagnosed with Endometriosis at the beginning of 2017 with laparoscopic surgery. Although I experience many different endometriosis symptoms, my two biggest complaints are pain and NAUSEA! My pain can range from uncomfortable to unbearable, but I can normally get through it with minimal complaining. Now nausea on the other hand…. nausea is the bane of my existence. I have self-diagnosed Emetophobia. What is that you ask? EXTREME fear of vomiting. I REPEAT EXTREME FEAR OF VOMITING. I am not talking about being uncomfortable with vomiting, I am talking about full-blown panic mode!! So when endometriosis causes nausea I can not function as a human being. All I can do is lay in the fetal position on my bathroom floor. And the anxiety that comes from nausea only increases my pain. It becomes a vicious vicious cycle. And I have tried so many different things to try and lessen the severity of my nausea. I have tried OTC medications, essential oils, teas, ginger chews, pressure point wristbands, and prescription medicines. But once my nausea has hit, there is no stopping it until it runs its course. That is until I tried the ReliefBand 2.0 (aka the ReliefBand Premier)! 

The ReliefBand 2.0 is a class II neuromodulation device that is cleared by the FDA for the treatment of nausea. 

How does it work?

When the device is in place on your wrist and turned on, gentle pulses stimulate the median nerve at the P6 location located on the underside of the wrist. This nerve is connected to the nerve in the brain that controls nausea. When stimulated using neuromodulation the brain signals the stomach to reduce nausea. The signals have a rebalancing effect normalizing nerve messages from the brain to the stomach reducing symptoms of nausea, retching, and vomiting.

What does it work for?

The device has been clinically tested to relieve nausea, retching and vomiting associated with motion sickness, morning sickness, chemotherapy, postoperative, and vertigo.  In addition, they’ve received FDA clearance this year to also treat nausea and vomiting associated with anxiety, physician diagnosed migraines, and hangovers!

How to use:

1. Finding the starting area (P6) on the wrist. You can use either wrist. It is approximately two fingers down from the wrist crease, between the two tendons. 

2. Clean the area and apply the provided conductive gel. You only need a thin layer about the size of a large coin.

3. Put the device on and adjust to line up the contact over the gel on the P6 location. Fasten device snugly.

4. Activate the device by pressing and holding the power on button. Adjust the intensity by using the up or down buttons. You should feel a slight “tingling” sensation in the palm or middle fingers. 

After using the Reliefband 2.0 for a few months, I can honestly say that it has helped me tremendously! I can’t imagine battling a major endometriosis flare-up without it. Although, it hasn’t been clinically proven to reduce nausea associated with endometriosis, I believe that it can make a big difference for women battling nausea related to endometriosis. 

Pros: 

  • It looks like any other fitness tracker. It has a sleek look and doesn’t stand out.
  • It is rechargeable.
  • Easily kept in your purse or bag for unexpected nausea episodes.
  • The intensity is adjustable
  • FDA Cleared
  • Drug-Free!
  • Latex Free
  • Fast Acting
  • No Side Effects

Cons:

  • The price point: $224.99. It is on the steep side.
  • When not used for a while it will die. So if you have a sudden spell of nausea and haven’t used it for a while, you will have to charge it before using it.

In my opinion, the pros definitely outweigh the cons! And the company provides a 30-day money-back guarantee. 

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If nausea is something you suffer from, have you tried the ReliefBand? They have two different models at two different prices. If you’ve tried it, we’d love to hear your experience in the comments below. Did it work? Did it not work? What else helps with your nausea? Home remedies? Pharmaceuticals? Anything? Share!

I’d like to send a HUGE thank you to ReliefBand for their interest in helping a friend. And Nicole for opening up, making herself vulnerable, and sharing her symptoms and experience! I’m so glad it has helped you!!!

Feel Good Fridays

Good morning, Readers.

I’m so sorry I missed last Friday!

I’ve been under a lot of stress recently, as I’m sure so many of us have. Yesterday was my breaking point of tears and I was left physically exhausted.

The Great Flood of May 2020 may soon be repaired. The insurance adjuster approved the contractor’s estimate, the check is in th mail, and the contract has been signed. Long conversations, lots of questions, and uncertainty for months finally closed.

Our front patio needs to be redone or the park manager will fine us. So, my husband has taken over that endeavor.

Our cats were shaved yesterday due to matting. A long one-hour process of hissing and howling. Emotionally exhausting right there.

I broke down. Wiped out. And I’m still dealing with shifty-poo pain and glass-guts whenever I poo, which leads to that li’l bug at the back of my brain telling me that the bowel resection may still need to occur.

Stress. Uncertainty. So many of us harbor so much of it.

So, today’s quote is something I really need to take to heart, repeat over and over, and hold onto:

“If the problem can be solved why worry? If the problem cannot be solved worrying will do you no good.” ~Shantideva

May we all remember to breathe and let go.

Mwah!! ~Lisa

Feel Good Fridays

No quote today, dear Readers. Just an instruction.

Long-distance hug someone you love today. Let them know how much they mean to you. And consider yourself hugged.

Social distancing has been hard for me. I’m a hugger. A big one. So, I’m reaching out and smooshing you as you read this

Feel Good Fridays

Savage Race participants help other racers make it to the top of the Colossus during the Georgia Spring 2015 Savage Race in Dallas, Ga., April 18, 2015. The Colossus was a giant 43-foot wall and one of the hardest obstacles in the course. Adding to the difficulty of it being one of the final obstacles, runners had to sprint up the barrier after they’d already sledged through more than four miles in the mud, before grabbing a rope. They would then pull themselves up to the top of the fortification. The Savage Race is an Air Force Reserve sponsored obstacle course that challenges participants in more than 20 different trials over the course of five miles. (U.S. Air Force photo/Senior Airman Daniel Phelps)

Hello Readers and Friends!

How is it Friday again? So quickly? How has your week been? Your month? Your year? Do share in the comments below!

It’s been a whirlwind week for me. I started my period. It was intense for the first two days. Not uterine cramping; no that was nearly non-existent.

Instead, I had the intense, oh-so-familiar pain on the left side of my lower abdomen, the hot poker, the rebar shoved straight through my body. Intense (and I mean a 9 out of 10 intense) pain. The ol’ familiar pre-surgery pain. The kind of pain where I needed to pop half a Tramadol, and another the next day. *sigh*

For all I know, I’m still healing from surgery. But the darker side of me fears it’s the deep-infiltrating Endometriosis that remains on my sigmoid colon. And it’s put me into a funk. Lots of sadness, loathing, fear, hopelessness.

So I leaned on my support group. I’m the Admin. The founder. The creator of the group. And still it feels wonderful to be able to be so open and vulnerable to those whom I love and share these struggles with. I never feel judged or pitied or anything less than loved. And I’m grateful. Their words of support and encouragement pulled me a smidge out of my funk. Gave me something to hang onto while I was drowning in a sea of self-pity and mourning.

So, today’s quote is inspired by the endless struggle many of us share. And struggles that you have I may not be aware of. It’s not all about Endometriosis:

“Facing it, always facing it, that’s the way to get through. Face it.”

― Conrad Joseph

May we all have the courage to continue to push on. Forge ahead. FACE IT. Head on. And fueled with whatever drive we need. And we face it, together.

Much love to you,

Lisa

Share Your Story: Melissa

Woman in hospital bed before surgery

At 27 years old, Melissa received her Endometriosis diagnosis. As a nurse, Endometriosis was briefly covered in her study curriculum, but she was still shocked and had so much to learn. Two years later, she is thriving with an educational blog about the disease and shares her story with us today:

Melissa’s JOURNEY:  

“I think you have endometriosis.” These words came from an initial visit with my new Ob-Gyn after seeking out some help with conceiving.

At that point my husband and I had been trying to conceive for over a year and had no luck. Something inside me always knew I would have trouble becoming a mom, but the reality of it had finally hit and I knew we needed to see someone about it . . . but I did not expect this.

Endometriosis. I had heard the word before. Mainly on commercials. There is the chance that it was reviewed during my Women’s Health course in Nursing School. But if it was, the topic was brief and I don’t remember it; proving that there is not enough emphasis on endometriosis education in healthcare programs. Going in for infertility issues, but coming out with education of endometriosis was mind blowing, to say the least. Even as my doctor was asking all of the questions about my HEAVY periods, mood swings, chronic pelvic pain, etc, I still didn’t think any of it was abnormal. Like so many other women, I was taught by family and healthcare professionals that my period pain was normal.

Of course, after that visit, I went home and started researching. I was met with disbelief. Fifteen years had gone by since my very first symptom (severely painful periods), and I was just now learning about this? How was it possible that I was a nurse who couldn’t even see what I might have? I went on to find out that endometriosis is not well understood by the general population and that only few specialists actually know how to surgically remove it. I felt so thankful that the first doctor I saw was a specialist. How incredible that I was lucky enough to only visit one doctor and have an answer, while so many women go through several doctors before finding an answer.

So, I went through with the surgical treatment plan my doctor talked to me about and scheduled surgery for November 8, 2017. After that, I stopped doing research. There was no need, I had my answer and my doctor was going to fix my pain and help my infertility problem. Right? I was poorly mistaken.

Although the surgery did help confirm that I have endometriosis, it made my symptoms almost 10 times worse! Over the course of 2018, I went from being able to hold a full-time job with the usual painful period symptoms that I just pushed through during my cycle, to not being able to function multiple times throughout the month. I had to go part-time and called in frequently. I almost lost my job. My pain was no longer “just” during my period and it was no longer “just” mood swings, painful cramping, and occasional dizziness. My pain was now affecting every organ system in my body.

So, being the researcher that I am, I started looking for answers (because my doctor wasn’t really giving them to me). Low and behold, I found out that my surgeon was not a true endometriosis specialist. My surgery was not the gold standard in treatment. And my surgery was likely the cause of my downward spiral in health status. First off, I was mad at myself for not doing more research from the beginning. I was mad at myself for believing my doctor, something that I never thought that I would have to question. I mean, don’t get me wrong, I have been questioning the orders of doctors since day one as a nurse. It’s literally my job to critically think and question a doctor when they give me an order that might harm the patient . . . even if the doctor is an arrogant butt. So why didn’t I do that for myself? Was it because they had the word specialist behind their title? Honestly, I am not sure, but since the day I realized my situation was the result of misinformation, I made it my mission to share my story and help others advocate for themselves.

Today, I am sitting at home recovering from my second, and hopefully final surgery. I had laparoscopic excision with a doctor that is listed on Nancy’s Nook Facebook Education Page. But even so, I still vetted him myself with every question in the book. I fought my insurance to cover it with out-of-network benefits (at the minimum). And I won. Basically, I did my research and stood up for myself and the best possible care. Today, I am 4 weeks post-op, exactly. I am in pain, but excision recovery is long and hard. However, I can honestly tell that my chronic symptoms have been addressed. Of course, only time will tell, but I have faith in my recovery and the surgical skills of my expert excision specialist.

WORDS OF ADVICE:  

My best advice to those of you on your journey to pain relief and symptom control (since there is no cure), is to do your research! Stand up for yourself. Don’t let a doctor diminish your symptoms or make you believe that it is all in your head. And be ready to fight your insurance when you do finally get to your excision specialist. The journey is hard, but I promise you, it is worth it. Because at the end of the day, you can go to sleep knowing that you did everything you could to get the best possible care available.

The Last Word:

For those endo warriors who do not have access to the excision surgery, do not lose hope. There is still so much you can do to help your symptoms. Western Medicine is not the only answer to endometriosis. In fact, most of the relief I felt before surgery, was from dietary and lifestyle changes. Pelvic floor physical therapy is great start as well. At the end of the day, education and research are still key!

If you’d like to reach out to Melissa, you can email her or follow her blog.

I want to send a special Thank You out to Melissa for being brave enough to share her personal story. You and I had surgery right around the same time this year and I hope your recovery continues to go smoothly and that you remain symptom-free. Thank you for all that you do for the Endometriosis community. And for sharing your story and some incredible words of wisdom!!!

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And if YOU would like to share your story, you can do so.  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.

Share Your Story: Chenille

Woman in yellow shirt and sunglasses

Diagnosed at 32 years old, Chenille shares her Endometriosis journey with us today, four years later. She’s had a total of seven surgeries for Endometriosis, including a hysterectomy and recurrent Endometriosis. And she has recently started seeing an immunologist. Hopefully this new course of treatment leads to long-lasting relief! Chenilles is sharing her story in the hopes that she can talk to others that have seen a similar journey of aggressive recurrent endometriosis.

Chenille’s JOURNEY:  

I have had a long, long journey that seems like it will never come to an end. When I was first diagnosed with stage 4 endo I was experiencing very painful, heavy menstrual cycles. Within 2 years and after 2 surgeries I had a complete hysterectomy.

I thought my battle was over. Boy was I wrong.

Not only did the endo return but it came with a vengeance. I had 4 surgeries in one year to excise it from my body. My surgeon even removed as many lymph nodes from my pelvis as he could thinking it could be embedded in them. It didn’t help.

I went to see a pain management doctor at the request of a surgeon who performed one of my surgeries in Boston. I did and was also diagnosed with Small Fiber Neuropathy. I tried numerous medications, none of which worked and only made me sick. I did 1 month of lidocaine infusions which only helped my developing nerve pain and not the relentless pain in my pelvis. I am not taking any hormone replacement therapy, but I do take 5mg of Letrozole daily. I have been on it for almost seven months.

I just had my 7th surgery in November of 2019. Unfortunately the surgeon who has done most of my surgeries relocated to California so I had to fly out there because no one locally would help me.

After my last surgery I had 2 wonderful months of no pelvic pain. But just like always it started to come back and I am in the same painful boat again. I am taking medical marijuana now, however it does minimal for my pelvic pain. It does great for my increasing nerve pain. I do not want to be on a narcotic pain killer. That is my last option.

So where does that leave me? I am at a loss. I do not know where to turn.

My surgeon believes that for what ever reason my tissue lining in my pelvis and where my reproductive organs used to be is just spontaneously growing the endo. He says my case is very difficult and rare. But that leaves me still in pain and not knowing where to turn. I tried reaching out to an Oncologist but he wouldn’t see me because I don’t have cancer. I would not normally post this much personal info but I need help.

I want to know if there are other cases like me and if so what they did, or who helped them. I am willing to do radical treatments in the hopes of leading a normal life. I just can’t keep having surgery forever. I am only 36 years old. I have a wonderful husband who is beyond supportive but this has affected our relationship too. My 3 young kids don’t understand why mom never feels good. I can’t run and play with them like I want to, I hurt too bad.

I hope that by sharing this someone will help, in any capacity.

WORDS OF ADVICE:  

You As hard as it is to do, stay in the fight.

If you’d like to reach out to Chenille, you can email her.

I want to send a special Thank You out to Chenille for being brave enough to share her personal story. May you find the advice and help you so desperately deserve. ❤ I’ll send ya a personal email with my thoughts.

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And if YOU would like to share your story, you can do so.  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.