In the past, I’ve researched how Endometriosis can affect the renal system, specifically the bladder or ureters, and how that could even cause blockages that cause kidney issues and severe problems.
Today, I’m going to talk about Endometriosis and the actual kidney.
A study published in October of 2018 discussed a 45-year-old woman who had flank pain and blood in her urine. Imaging studies found a mass on her left kidney. A surgery was performed to remove the suspected renal mass and a portion of her kidney, and pathology confirmed it was an Endometriosis lesion. It was removed from her “renal parenchyma,” which is the solid part of the kidney that filters blood and makes urine.
So, as part of our 2019 Endo Walk, I’m offering the opportunity for our attendees to say something about Endo on their name badges…and if I can share those blurbs with the world.
So, you’ll be seeing them shared from time to time…and here’s the first. She didn’t write it, and we don’t know who did…but it’s too awesome not to share.
Gain strength from it today. And tomorrow. And the next day. And the next……..
Many of you already know I have a large tattoo on my left shoulder, which represents my journey after I was diagnosed with Endometriosis in 2014. And many of you also know that each time I have a surgery because of Endometriosis, I add a blood droplet to that tattoo. And each time, my best friend and Seester (Rosie) comes to be with me during the tattoo session.
So, this year I not only wanted to add another blood drop but I felt a need to somehow honor my sterility since my fallopian tubes were removed, and with them any chance or choice of continuing our family line.
Knowing I’ll never give him a son or daughter, knowing we’ll never hold them in our arms, change diapers, watch them grow up, all the glorified things that my heart aches for. About a year ago, Jim and I shot a film project for a friend of ours. We were parents of a beautiful infant girl, Emily. And while we weren’t filming, he continued to hold her and just seeing him rock her in his arms, coo at her, smile when she made cute bubbly baby noises, smell her head – it filled me to the brim with warm feel-goods.
Although both my husband and I have wanted children at some point during our lives (or shall I say our prior-to-meeting-each-other lives), we no longer felt like we did at our age (I’m pushing 40, he’s pushing 50). So why couldn’t I stop sobbing? During my grieving process, I tried to better understand why I was so very upset. Lots of soul searching led me to a conclusion.
Yes, the chance to procreate and to hold our own child in our arms was now gone. We could adopt, but as I stated above, we truly did not want children at our age. But if one happened by mistake…we both would have been so happy. Wait…I’m digressing once more. I already covered that.
So, where was I? Yes, my sterility. The choice to remove my fallopian tubes was made prior to my laparoscopy. If it even remotely had any chance of ceasing the progression of Endometriosis, let’s do it (yeah, yeah, I know – retrograde menstruation is a sneered-upon theory, but it’s worth a shot). And even if the decision hadn’t already have been made, my fallopian tubes would have been removed during surgery anyway because of the state they were in. But…they are gone. My uterus is a now a sealed tomb that will still continue to shed and bleed and remind me each month that it, at least, is still there and functioning.
Wait…I digressed again. Obviously, I’m still dealing. Back to the tattoo…
I wanted something that represented not only my sterility, the end of our bloodline (well, I have brothers, a niece, and a nephew, but I mean the direct bloodline of myself and my husband), and my coming to terms with it, but truly accepting the fact that my illness has robbed me of something I did want so many moons ago…
And suddenly it came to me. I wanted a lit candle, burnt almost to the point of extinction. Smoldering. If you’ve followed my previous tattoo posts, you may remember that my artist’s name was Will Novotny. Sadly, he passed away last year…I’ve been his client since 2009 and no only had the pleasure of being his client, but of becoming his friend. And now my choice of tattoo had an even greater meaning: not only am I expressing my sterility and acceptance, but I am also lighting a candle in memory of Will…directly adjacent to the last tattoo he inked onto me.
I wrote my friend, Mia, who is a tattoo artist here in San Diego at the Jade Buddha Tattoo studio and explained what I had in mind.
Mia added the suggestion of the candle being held in the palm of a hand, wax dripping. Then she expanded on that thought: have it held in my hand. Our waning existence, mortality slipping between my fingers, and me grasping and accepting that very concept. It was brilliant.
Then the creative process took off! Not only did I love the journey, but it was so therapeutic talking about it. And a HUGE thank you to Rosie for being there to comfort me during the painful 4.5-hour session. And to Mia for her friendship, understanding, and talent! This piece means SO very much to me. It’s incredibly beautiful, seamlessly wound into my existing Endo tattoo, and it’s amazing! I want to cry even just typing about its meaning and yesterday’s wonderful experience. Oh, and if you can’t find it, the third blood drop is lingering at the bottom of one of the pieces of dripping wax.
A smidge of humor 😛
Some photos! You can click on a thumbnail, and click once more on the image it opens and it will open a full-size version.
And here’s a few videos trying to better show the entirety of the piece! Neither the photos or videos do it justice!
(don’t mind the little peeling flecks all over the tattoo haha)
oh…and if you’ve made it all the way to the bottom…here’s my favorite photo taken during the session! God, this piece hurt so much. So worth it!
If you’re in San Diego, I highly recommend Mia at the Jade Buddha Tattoo!!!
My good friend Exxes Hauffen owns Compass Media Productions. One day he asked me, “What’s all this uterus business about?” – regarding all of my Facebook posts. So, I told him about Endometriosis and his next question was, “How can I help?”
Some of you may be asking “What is Livia?” It’s been hyped in the news and social media since 2016 and has recently made a comeback in my Facebook newsfeed. Livia recently won the Gold for Women’s Wellbeing at the Edison Awards. Imagine a tiny device that you can wear around discreetly all day. It retails for roughly $150 on MyLivia’s webpage and Amazon and you can purchase additional gel pads to use for future cycles.
Some have compared the Livia to a TENS unit. TENS units can be large, bulky, cumbersome, and not to mention intimidating with all of the buttons, wires, and knobs. Sure, I can figure it out…but then I’d also have to lug that thing to work, out shopping, etc. The Livia is a small, discreet, and incredibly user-friendly medical device. It supposedly works by tricking the mind by keeping it busy with a little electric pulsing that deflects or confuses the pain signals going up to your brain…I had my doubts.
A study of 163 women who suffered from severely painful periods was conducted, and 80% of them reported that Livia either “helped to either significantly or completely eliminate their use of pain medications while menstruating.” There was a recent 2018 study conducted on the effectiveness of Livia to treat painful periods, and those results will hopefully be released by the end of the year.
As a side note regarding Endometriosis pain (which, as we know, can be far more severe than normal menstrual cramps), Livia’s manufacturer can’t recommend Livia for use in treating endometriosis until an independent clinical study among endometriosis patients is completed in 2019. However, dozens of endometriosis suffers have posted messages reviews on Amazon and other places saying that Livia is very effective in reducing or eliminating their endometriosis pain.
On June 17, 2018, I wrote Livia to inquire if I could connect with someone at the company to discuss their product and how it has helped women with Endometriosis. I also asked if they’d be able to provide me customer testimonials by women who suffer from Endometriosis. I explained who I was and that I suffer from Endometriosis and write a blog about the illness.
A day later, I had a response. After answering a few questions about my blog and my intentions, Livia offered to mail me a unit in exchange for my unbiased opinion and review.
I jumped at the chance!
It arrived from Israel on June 27, 2018. I took copious notes and wanted to share my experiences with you!
The Great Unboxing!
As of the writing of this blog (July 9, 2018), I used the Livia from June 28, 2018 through July 4, 2018. I expected to start my period the week of June 28, 2018. I experienced all sorts of cramping and PMS symptoms, but alas, my period never came (sometimes I skip a month). But, my pain was elevated enough where I believe the Livia got a good test run. And I look forward to testing it out on future painful days. I also had another excision surgery on July 18, 2018, so it will be a few months before I will be well enough to test the Livia again. But test I shall! Stay tuned!
I also learned that Livia is only intended to be used for menstrual cramps and lower back pain associated with menstrual cramps. Due to my Endometriosis and resulting scar tissue, I also experience pain on the lower edges of my pelvic region near my hip bones, and along the underside of my ribs. The Livia is not intended for use in those areas. In fact, any placement of the Livia gel pads near the thoracic region is strictly forbidden. And I asked about the use of Livia for neck or shoulder pain: again, please do not use the Livia for any other area of the body except menstrual cramps and menstrual-related lower back pain.
Okay, on with the show! Below is a summary of my experiences (unless you’d rather read my detailed notes).
June 28, 2018: It tickles. But you soon forget about the tickle and pretty much forget you’re wearing it. For me, my ideal setting was hitting the + Button twice. So, let’s call it Level Two. Anything beyond a pleasant tickle is too much, according to the user manual.
June 28, 2018: PMS cramping pain was a 4-5 out of 10. It dropped to a 1 out of 10 just 17 minutes later. Within an hour of turning it on, I had zeroPMS cramping. I turned off the unit, and my pain returned an hour and 15 minutes later.
June 28, 2018: PMS cramping pain was a 4 out of 10. Within 45 minutes (took some time to adjust the settings), the pain had reduced to zero! Sometimes it crept back up to a one but dropped back down quickly to zero. Turned off the device an hour after turning it on.
June 28, 2018: PMS cramping pain returned within an hour of turning off the Livia. It was a 4 out of 10, but within 15 minutes of wearing the Livia on Level 2, it had once more reduced my pain to a zero out of 10!! Turned off the device after an hour of having it on.
June 28, 2018: Pain returned within 10 minutes of shutting off the device. It was now a 5 out of 10. Turned it back on to Level 2 and within 20 minutes, pain reduced to zero…again! Kept it on for about an hour.
June 28, 2018: My biggest tip to pass on about the Livia? When you have to use the restroom, instead of unclipping the unit from your pants or dress or shirt, simply turn the device off and unplug the gel pads cable from the unit. Mind the dangling “tail” as you pee, then reattach it when you’re done.
June 29, 2018: PMS cramping returned at a 5 out of 10 and I reached for my trusty Livia, turning it on to Level 2. Within 15 minutes, the cramps subsided to a zero out of 10! It turned off the Livia five minutes later. While driving, my Livia pad felt a little squiggly on my skin, and I pulled over and looked down. It had peeled half-way off. Not off of my skin, but off of the flower pad. So I peeled it all the way off and stuck it back on, smooshing real hard. It remained on the rest of the day.
July 3, 2018: I didn’t have any cramps for the past few days, but they came back at a 6 out of 10. So I turned my Livia on to a Level 2 for 15 minutes and my cramps were reduced to a 1 out of 10.
July 4, 2018: Cramping was a 6 out of 10. I grabbed my Livia, slapped on my pads, and plugged it in, turning it up to Level 2. I couldn’t feel the usual buzzing-tickle on Level 2, so I bumped it up to Level 3. About 20 minutes later, my cramps were back down to a wonderful 1 out of 10.
All of the pain I’ve felt since July 4th has been in areas that I was recommended not to use my Livia: my lower pelvis near my hips, my under-ribs, and a weird spot near a cyst that I know exists.
I never tried the Livia on my lower back since that pain was been super manageable at a 1-2 out of 10. But, when that pain exceeds a 2 or 3, I’ll be sure to try it out.
I am the most skeptical person you’ll ever meet. Especially when it comes to products that are marketed specifically for conditions that a large population suffers from: like painful periods. But this device was truly incredible. I’m elated. And flabbergasted. And amazed. And excited.
But was it worth it? Of course, it was for me since I didn’t have to pay. But would it be worth it for $150? I’d like to say, “Yes.” At least for me. Livia offers a 120 Day Money Back Guarantee, although some online reviews mention that you have to pay a sometimes hefty international shipping charge to send it back to Israel. And there’s a 2-year warranty on the product when you purchase it, so if it breaks during that time, you’re covered!
It’s small.
It’s adorable.
It’s easy to use.
It recharges on any mini-USB charger.
And, for me, it worked like a charm!
Granted, I couldn’t give it the 100% Endometriosis-period test…but it did help with a lot of my PMS pain and cramping. And I also will be doing another full review after my surgery if my painful Endometriosis symptoms return. Again…stay tuned!
Would I recommend it? I’m gonna have to say Yes…but I will also highly recommend you keep your own notes and evaluate how well it works (or doesn’t) for you. And take advantage of that money back guarantee if it doesn’t. There is no shame in returning something.
what others thought:
A few of our blog readers have also started using the Livia unit with mixed results. Everyone’s bodies are different and, of course, not everyone will have the results that I did. So I wanted to share their experiences here:
4/24/19: A fellow EndoWarrior, Kitty, purchased a new Livia unit and calendared the date she had to return it in order to get her refund, if needed. Here’s her short report: My pain was not too bad this month, but uncomfortable enough that I had to take Advil. There are times when Advil doesn’t work. I used Livia a few days straight and a few hours at a time. I can no conclude that Livia or TENS does not work for me. Not even slightly. I am returning the device and I am glad that I am able to ship it back to Atlanta and not Israel.
If YOU would like to share your review of the Livia unit on our blog to help others make their own decisions to try it out, please contact me.
(Updated April 24, 2019)
Resources:
Clinicaltrials.gov – The Effectiveness and Safety of LIVIA Transcutaneous Electrical Nerve Stimulation (TENS) in Women Suffering from Primary Dysmenorrhea.
HealthcareDive.com – (Press Release) Livia – Drug Free Solution for Menstrual Pain Now HAS FDA, CE, and Health Canada
~ 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
On Sunday, August 5, 2018, our little support group hosted a BBQ to honor those who support us: our friends, our families, our partners, and fellow Sisters. It was BEAUTIFUL!
One aspect that was born out of the BBQ was this Advice Notebook. Literally words of wisdom and encouragement from:
Endosisters to Endosisters
Endosisters to Support
Support to Endosisters, and
Support to Support
We left the book out and invited anyone who wanted to write in it to do so. And we will carry this book to each support group meeting, future event, and walks and supply a pen or two.
For your reading pleasure, I present their incredible words (and will continue to update this list as more entries are added):
Advice to Endo Partners,
You will find yourself expanding the bounds and upper limits of your patience for your partners as they ride the rollercoaster of pain and emotional distress that is Endo.
You will be torn apart and feel helpless when your partner is in pain. You will find yourself wishing your partner was up to a walk or a hike when they are exhausted from the day-to-day continual recuperation they are in.
You will find yourself struggling to understand their rationale when they are in a battle with their hormones to function rationally.
You will find yourself angry at every doctor and drug manufacturer as you see ineptitude and false claims of a cure.
You will become enraged when you recognize charlatans who prey on the loved one you have, who peddle snake oil and magic crystals to “cure” a very serious and real condition.
You will come to hate the word “cure,” as it is a false promise.
You will hear of others who are saints to their partners, and you will be envious.
You will hear of those who fail in their emotional support of their partner, and it will anger you.
You will have this strange yet detached empathic bond with women you don’t know, but know they have Endo…though you will have difficulties being open at times to their path of treatment in their struggle knowing the Hell it put your partner through.
You will be seen as your partner’s greatest Hero when you are supportive, but the greatest villain when you are not available to be supportive. Fret not, the perception is temporary.
There will be times you surrender your “you time” to meet a need for your partner. You will never get that time back, but your compassion level grows with your sacrifice.
You will come to hate every bottle of painkillers in the house for what they do to your partner’s clarity, but you are conflicted because they assist to relieve the pain.
When you spot a profiteer who makes prey of your partner and her Sisters, your blood pressure will rise.
You may find yourself bitter at some of your partner’s friends that do not have Endo, and become judgmental of them for their lack of understanding and emotional support to your partner.
You will occasionally feel that you are being dragged along as your partner takes you to some support function, and it may tire you…Remember how tired your partner is. She seeks constant support because the sickness she endures is such a mystery to those who sincerely try to treat it. Endo is under-researched and over-treated by those who take stabs in the dark at it, because so little is known about it.
You will try to cage your anger as you try to learn about it, and run across three bad articles for every one good article that has some form of truth or meaning in it.
Your own gut will feel pierced when your partner screams after surgery.
Your heart will ache every time she doubles over.
So the advice to the partner is to breathe, first of all, open your understanding and stay receptive. Take time for yourself without guilt. Talk with your partner. Let go your anger when you can and do not displace it onto your partner when it is the Endo you are actually angry at.
(A little up arrow to the above entry) Ditto to all of this. Thank you. I’ve never heard this stated so truly or clearly. ❤
Practice self-compassion. Be kind and patient with yourself, especially in the moments when it feels that the whole world is against you.
Be patient even in your most painful days when you want to do something but you cant. ~Angel (husband)
Just be there for your Endo-warrior! Patient – kind – it’s a long, painful, misunderstood road for them. Be patient with yourself…do what you can — when you want to do so much more. Love my Endo-warrior. ~(mom)
There is strength in numbers. Continue the fight but always know that you are NOT ALONE in this fight! ~(husband)
To my fellow EndoSister:
Follow your gut instinct and don’t take no or maybe for an answer. You know your body best, not any doctor or nurse unless they themselves have had Endo will they truly understand. Give yourself the days you need to sleep, cry, be angry – always remember those are temporary feelings. Take time to get grounded and feel joy amongst the pain and frustration. Find a group. Bloomin’ Uterus has been instrumental in saving my life every day. These women get it, completely. Talk about it every chance you get and fight for your rights as an Endo Survivor. This will lead to greater awareness that will lead to better care for future generations. Realize that not everyone can handle the pain you feel because it’s not on the outside. Find those who can support you and be there for you unconditionally because you deserve it and are worth it. Know that you are loved.
It’s okay to get unmotivated, to feel defeated. It’s okay to not want to take all your damn meds and just lay in bed. But never, never, NEVER give up! We have the support of all our EndoSisters to push us a little when we need it. But do not give up on the fight. So many days it may feel like this is not getting better but we can keep fighting for more research and more solutions. It just simply has to be okay. ~(EndoWarrior)
Dear Endo Warriors,
There are a growing number of us in the world, in San Diego, in your community who have your back. You may feel like you’re alone. Even if you don’t feel that way now, maybe you used to. You’re not alone. Be patient with us support people (or don’t. Snap at us if you want to…sometimes we need and deserve it!)…It takes most of us some time to learn and understand, but we’ll get there. ❤
Dear Support People,
It’s so hard not to be able to “fix it.” I don’t have any advice, we all kind of figure it out as we go along. Keep listening to your loved one(s), find what they need, and offer it without asking. Keep sharing with other people who don’t have Endo…that’s how the world/medical community will eventually change and start to provide better care and research, right?! ❤
Dear EndoWarrior,
When you are doubled over in pain – reaching for your pain meds and heating pad…remember this: This is not all in your head! YOU ARE NOT CRAZY! Our society is crazy for not supporting our healing treatment and pain management…OR A CURE! Your pain and suffering is not your fault. Just because you had a cheat day with wine does not make you a “Bad” EndoWarrior. Just lay back and focus on the last time something really made you laugh so hard that you peed a little. That always helps me. There is no “right” way to deal with this disease – the only way to do any of this right is to listen to your body and your intuition. That’s the best gift you can give yourself. Love yourself. Breathe. And lean on your support system. And take those cheat days when you really need them. Life is too short to be the “perfect” EndoWarrior. ❤ Love you ❤
Dear Supporters,
Never forget your strength and that of your partner. There is no map for this territory, you are bold to go into it together! Don’t forget that your affection and loyalty is foundational throughout this challenge. Continue to communicate. Continue to empathize. Be flexible and humble and wise. This lesson belongs to you, too. Do not let it pass you bay. In solidarity.
Dear Amazonian Endo Warriors –
I have watched one of the smartest, strongest, most precious person go through her pain and ups and downs with this silent monster problem and illness. It has never ceased to amaze me how she can tell her mom how tough the past few days have been and then meet me with a smile and hug later that day. She reminds me how lucky I am to have my life and not have to face Endo each day. She is my Hero and one magnificent person. Being here today with everyone makes me see how many other Amazonian Warriors there are around me each day, walking in silence. I cheer you all and quietly salute you. Carry on!!! ~ (An Admirer)
I will later give you a full update of my July 18, 2018, surgery and current recovery, but first wanted to share something super important and amazing!
For those of you who may have read the title and thought elephants have Endo, alas, this isn’t that blog – I haven’t done that research yet. But, please keep reading…
My Mum surprised me with a gift after my July 18, 2018, excision surgery: the stuffed elephant pictured above, whom she named Mr. Victorious. 🙂 And inside the bag was this incredible note, that I share today with her blessing:
“Lisa, I was in the gift shop feeling like there was something in there for me to get you. I had no idea what it was…
Until I saw the elephant!
Elephants in areas like Africa when one finally finds water underground will let out a trumpet call that goes out for miles around. The elephants that hear the call come running to where that elephant is and they form a circle. Then they all stay in place and stomp their feet repeatedly. All of a sudden, the water rises to the surface and they are all able to drink.
This elephant reminds me of you and your Endo Sisters.
You let out that call and you and your Sisters found each other.
Someday a cure will rise to the surface and you will all be able to drink.
I love you Lisa.
Mom”
Pardon me as I, yet again, grab a tissue. It’s true, dear Sisters. We rally together. We are here for one another. Always.
And, Mum, thank you for such a special gift and incredibly touching words. I will cherish your letter, and Mr. Victorious, forever. Gonna go lay back down now and continue to heal up and relax.
My third robotic-assisted laparoscopic surgery is now seven days away. As I lay awake in bed last night, my mind wandered to the process: pre-op/intake, placement of the IV, a conversation with my surgeon, trying to wear a brave face as my Mom and husband do the same, the ride down the hallway with the overhead lights (just like in the movies), the surgery room doors opening, and being greeted by staff as they make last-minute preparations for the procedure. Then the moment of being placed on the operating table, getting strapped in, and the anesthesiologist coming to send me off to sleep.
It’s not easy. It’s not a grand adventure. But, partially it IS an adventure: the hope of relief, of a returning quality of life, a possibility of normalcy. But, let’s be honest…it’s terrifying, it’s scary, and it’s going to hurt when you wake up…and the recovery takes weeks just to function; months to feel normal. And for some women: they never get that sense of normalcy.
So, last night as these thoughts tumbled through my brain, I reached my hand out to my husband and laid it on his hip. Before I knew what I was saying, the words “I’m nervous,” gently babbled out of my mouth.
He reached down and stroked my hand with his, then he pulled my hand up to his heart and held it there. I closed my eyes and silently let the tears flow. And he just held my hand firmly against his beating heart. Until I fell asleep.
I love him. So very, very much.
I often get asked, “How does your husband deal with your illness?”
This. This is how.
I don’t know where I would be in this Journey without him.
June 30, 2014: a day I went in to have a cyst removed from my ovary and instead awoke to a diagnosis of Endometriosis. Answers. Vindication. My years of pain had a name.
So, I celebrate this day.
I am writing this on Friday, June 29th since I will be away from my computer on Saturday. And today (Friday) I just scheduled my third excision surgery. It will take place on August 15, 2018…almost two years since my last surgery.
June 30, 2014: D-Day (yep, Diagnosis Day); performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.
September 21, 2016: Surgery No. 2; performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.
August 15, 2018: Scheduled Surgery No. 3 (with the possibility of being sooner if there is an opening in the hospital’s schedule); to be performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.
This blog wouldn’t exist without the events that took place on June 30, 2014.
I wouldn’t be seeking answers. Wouldn’t be honoring my body. Wouldn’t be connecting with others.
Our Bloomin’ Uterus support group wouldn’t exist.
There would be no annual walks or monthly get-togethers.
I would have no idea about the other women who suffer with me.
No camaraderie.
No support.
I would still be alone, thinking my pain was normal and that I was weak.
And now I know that I am none of those things.
I am surrounded by Sisters and family. Warriors! Our pain is anything but normal. And none of us are weak.
My life has been made better by being told I have a chronic, incurable illness. And I have met some incredibly strong people because of it. May we continue to hold each other high as we make this Journey together. It’s not easy. But we have each other.
Bloomin' Uterus 