Endometriosis Excision Surgery 3.0

Lisa Howard - Resilience
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian; used with her permission https://www.brandysebastian.com/

On July 18, 2018, I underwent my third robotic-assisted laparoscopic excision of Endometriosis by Dr. Mel Kurtulus ( of San Diego Womens Health).  As always, I love to share my experiences with you – not only to create awareness of this illness, but in the hopes that the process of my surgery (and later recovery) may help you, or others.

Before I go on, I just want to take a moment to express my joy in the above-photograph.  I am a detached head, floating beneath a fluffy warm-air blanket in the pre-op area, enjoying a wonderful moment with an incredible surgeon and man.  Thank you, Brandy, for capturing this.  And thank you, Dr. Kurtulus, for being so marvelous!

Okay, on with the nitty-gritty!

My mom, husband, and I were awake at 6am and in the hospital by 8am to check-in.  If you’ve never been to the Scripps Hospital La Jolla, it’s glorious.  Every attention to detail and the efforts of the staff are meant to soothe and calm: beautiful artwork, a live piano player in the lobby, and compassionate staff.  It’s wonderful.  We were joined by a wonderful friend and fellow EndoSister, Brandy, to document the experience (these photographs will be shared at a later date…I’m so excited about what she is doing!)  I was rolled back for pre-op somewhere around 11:30 and wheeled back to the OR by noon.  My surgery took approximately four hours.  And here I was worried he wouldn’t find any Endometriosis…(I should know better…)  We arrived home around 7:00pm.  A very, very long day for my friends and loved ones.

procedures

The plan was to open me up and peek under the hood, so to speak.  If any Endometriosis was discovered, Dr. Kurtulus would excise it; any adhesions would be freed; the ovarian cysts that were seen in ultrasounds would be removed; my ureters would be examined and freed of any adhesions; he’d look inside my bladder for any Endo or evidence of Interstitial Cystitis; and he would (with my willing and educated permission) remove both of my Fallopian tubes.

What did he find?  Following is a page of my op report, in case you enjoy reading all of the medical terminology (like I do).  I’ll also further explain what I understand and share photographs below!

op page

In a nutshell?  I had:

  • I was laid on a table, strapped in, and tilted somewhat upside-down.  Then a tiny hole was punched in my belly, 3 liters of CO2 gas was pumped in and I was inflated, and the doc took a peek around.  Three additional ports were added (tiny incisions) so tools and the robotic arms (tiny!) could be inserted.  On with the discovery:
  • A cyst on my right ovary;
  • A cyst on my left ovary;
  • Endometriosis on my cul de sac, small intestine, near my sigmoid colon, and on my left ovary and fallopian tube;
  • My fallopian tubes were hideous, “angry”, inflamed, swollen;
  • Adhesions on/near my sigmoid colon, my bladder, my fallopian tubes;
  • My sigmoid colon was stuck to the left side of my pelvis;
  • My bladder was pinned to my uterus;
  • My left ureter was surgically detached to allow safe access to Endometriosis lesions on my left ovary, then reattached once all-clear;
  • And (hooray!!!) NO evidence of Endometriosis was found on my liver or diaphragm (discovered there in prior surgeries).

During my post-op meeting, Dr. Kurtulus let me know that this time my Endometriosis lesions were all either clear or red.  He said they were almost grape-like.  I’m so pleased that he is so skilled and thorough during these procedures!!  And grateful he knows what to look for!

Ready for photos of my insides?  I don’t know if you can click on the photos and make them full-size, so if you ARE curious about the full-sized (and zoomable) versions of these photos, you can view them here.

The Fallopian Tubes

My Mum told me that when Dr. Kurtulus showed she and my husband the photographs after the procedure, he said my fallopian tubes were “angry” and swollen.  That description will stick with her for quite a while, especially when she saw the photographs.  I am so glad we had already discussed removing my fallopian tubes before my procedure; as he likely would have removed them due to their massive state.

I had a 3cm cyst on my right ovary, which he removed while saving my ovary.  Also,  a cyst and Endometriosis lesions on my left ovary, which he excised (still saving my left ovary).

FT and ovaries copy
The yellow circles are showing Endometriosis on my fallopian tubes

My husband and I don’t want children at our age, but it doesn’t make the medical sterility any easier to bear.  I have grieved and mourned and cried and sobbed.  I am feeling much better now (although sometimes it still hits hard) after talking about it with friends and family and I wanted to share some incredible words from a few friends that they shared to comfort me:

“You may no longer have fallopian tubes, but you got one of the biggest pair of brass balls I’ve seen.” ~Barbara Carrera

“It’s a good thing to have the diseased bits out of the way.  And now you don’t have to worry about condoms.  And it’s fun to imagine your ovaries as crazy, free-floating googley-eyes!  They’ve been unleashed!!  Fly my pretties!  Fly!!”  ~Sarah Mew

Thank you, ladies.  I needed those laughs. ❤

The cul de sac (aka Pouch of Douglas)

This is my third surgery and during both of my prior surgeries, I had Endometriosis in my cul de sac.  To quote both of my first two op reports, my cul de sac was “obliterated.” What the heck is a cul de sac?  It’s the little empty space between the back of the uterus and the rectum.  It’s usually very common for Endometriosis patients to have lesions in this area.  This time, most of my Endo was on the left side, rather than everywhere in that little pouch.  And, Dr. Kurtulus excised all that he saw.

PofD Before and After

I’m flabbergasted at the difference!!! But, here are more photos of what my cul de sac looked like before I was all tidied up:

PofD Additional copy
Again, circles indicate Endometriosis lesions that I’m aware of

The Small Bowel

Two lesions were discovered on my bowel.  Dr. Kurtulus brought in a colo-rectal surgeon to look at the lesions to determine if they could be removed superficially or if something greater would be required.  The colo-rectal surgeon confirmed the spots looked like Endometriosis, but I would require a resection of that bit of small intestine.  It’s close to my appendix, on the right side.  So, it’s still in there, but I did already have a consult with that colo-rectal surgeon on August 8th.  My surgery date for the resection is pending and may take place by the end of this year!

Bowel Pics

The Bladder and Uterus

When I saw the photographs of my bladder being pinned to my uterus and held in place by a literal web of adhesions, I was amazed!  AMAZED!  I’d been having pain often when I peed and wonder if it was related to anything-Endo.  So Dr. Kurtulus freed my bladder (he’s my hero!).  He also looked extensively at the inside and outside of my bladder and found no evidence of Endometriosis or Interstitial Cystitis (aka IC).

bladder uterus copy

The Cost of it All!

As usual, I LOVE to share what this type of surgery costs.  And, to date, this was the most expensive for my insurance company!  I paid a $500 co-pay to the hospital and my insurance covered a whopping $111,814.33!  Holy moly!!!  I’m still waiting to see if the colo-rectal surgeon will submit a separate bill for his time, as it wasn’t itemized on my Estimate of Benefits form.  Other than that, there shouldn’t be any sneak attack bills…I hope.  If you’re curious what my first and second surgeries cost, check this out!

Future Plans

I had my post-op appointment with Dr. Kurtulus on August 6th.  He spent some time with me going through the details, labeling the photographs, and talking about our future plans.  Did we pick curtains or china patterns? No.  We covered prospective treatments!  I’ll see him again for an 8-week follow-up in mid-September.

He brought up birth control and remembered I don’t want to take it as I feel it truly makes me a different person.  Then he mentioned Lupron Depot and Orilissa, but acknowledged (before I could say anything), that he knew I didn’t want to take those.  So, he wonderfully respected my opinions and desires; didn’t push anything.  Didn’t make me feel like I was a “hostile patient” or making poor choices.  And he supports my desire to strive toward an anti-inflammatory diet, keep a positive attitude, and pursue the bowel resection surgery as soon as I am able.

The Recovery Process

I fully intend to fully blog about my 2-week recovery and share my notes soon.  But I wanted to also mention it briefly here.  It wasn’t easy at times, but mostly it wasn’t hard.

My pre-op Endometriosis pain is 99% gone!  Just a little bit of “ugh” near the lower-right edge of my abdomen…and I may either just be healing or it’s the last bit of Endo clinging to my bowel waving at me.  I was even on my period! And it was so pain-free that it was a Sneak Attack period and caught me by surprise (the poor bed sheets).

The first week was a whole lot of paying attention to my body, small little walks, a mostly-liquid diet, lots of lounging on the couch-bed and watching Netflix.  There was the expected post-op pain the first day, a vomit on Day One (whoever wants to do that so soon after abdominal surgery?), sleepless nights, and difficulties getting comfortable.  And those first few days of hardly any sleep wasn’t easy on my husband or mother, who had to help me get in and out of bed multiple times throughout the night.

The second week I felt far more capable, although I didn’t do much of anything other rest and be lazy.  And I returned to work on August 6th.

I had very little shoulder pain related to the CO2 gas and I blame that on my surgical team’s skill in deflating me as much as possible and getting out as much gas as they could!  For anyone who doesn’t know that absolute agony of post-laparoscopy gas pain, please, read this! I did have a few episodes of that pain, but nothing in comparison to my first surgery.

It took three days to poop.  The discomfort was so great that I opted for an enema.  That is a tale in and of itself; one you shall never read about!!

My body is still healing: sitting too long causes discomfort; stairs are from the Devil; and  I don’t allow myself to squeeze out a poo – if I have to do more than just a gentle push, it’s not time yet.  No straining.  No lifting.  No pushing. No pulling.  BUT I have been cleared to go swimming in a pool (no lakes or oceans)…and we can have sex! We were recently brave enough to give it a go and I’m happy to report there was no pain or discomfort!

The last of my steri-strips were removed at my August 6, 2018, post-op appointment and they’re healing well.

 

BEFORE I GO…

I want to thank Dr. Kurtulus and his staff for their excellent care, the incredible nurses and other surgical team members at Scripps Hospital La Jolla, Brandy for her amazing photographs and the project she is working on, my Mum for driving out (yet again) to be with me for surgery and during a hardest days of my recovery, my husband for all that he’s endured with me, Erin for taking care of me for a few days, Rosie for spending time with me during my recovery, Laura & Chris & Carrie for their wonderful company to celebrate my health, Zeiddy for constantly checking in on me, my employers and co-workers for the beautiful flowers, and all of my EndoSisters, friends, and family who also threw me well-wishes and love.

This has been an amazing experience.

Be well. All of you.

~ 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

Feel Good Fridays

Draw Drawing Canvas Black And White Artwork Artist

It’s been almost a month since I’ve posted one of these!  Life is returning to normal after my surgery and it’s time to resurrect the Feel Good Fridays posts!

Today’s quote is about embracing a new day. Run with it.  Let yesterday go.  Forge ahead.  Renew.

“Imagine a master painting that’s never finished…when you can only build on previous work, you become limited by what you can paint…If you are in the midst of painting a forest full of tall tress and hanging vines, it is rather difficult to wake up the next day and suddenly turn that paining into the beach and ocean…We have to treat each day like a black canvas on which we can paint. Yesterday might have been painting flowers, but today you can paint cars or horses. A new day represents a chance for renewal.” 
― Ian K. SmithHappy: Simple Steps to Get the Most Out of Life

Have a wonderful weekend and enjoy! Love, Lisa

EndoBelly: Before & After Pictures

One of our local San Diego EndoSisters, Michelle, had a flair-up of EndoBelly yesterday afternoon.  If you suffer from these, you know what we’re talking about.  If you’re not sure what it is, I tend to think it’s the disease inside my body inflaming and rearing its ugly head.  The bloat is severe.  The pain is thick.  The skin is stretched to an extreme.  The pants must come unbuttoned.  People would ask “When’s the baby due,” having NO idea I wasn’t pregnant.  When it happens, I must pop a pain pill and find comfort in a bed and a heating pad.  And, for me, it can pass after a few hours or a few days.

But what a difference a day makes.  Michelle granted me permission to share her image here.

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On the left (in the red) is yesterday’s EndoBelly in all it’s swollen glory.  And on the right (in the black)  is today’s deflated and back-to-normal belly.

What a difference a day makes!  And these before & after photographs bring a visible sense to an invisible illness.  Thank you, Michelle, for allowing me to share your photograph.  And your pain.  Love you, woman.

Do you suffer from EndoBelly? Tell us about it in the comments below.  Anything help you cope ’til the swelling subsides? Share away!

Livia: A Device That May Help Period Cramps & Period-Related Lower Back Pain

KIMG1692

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!  Here’s a summary of my experiences.  If you’d like to read my detailed notes, please feel free to read them here.

 

 

  • 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 zero PMS 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.

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

MyLivia.com – FAQs on the manufacturer’s page

~ 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

Share Your Story: Janis

janis pic

Janis was diagnosed with Endometriosis when she was 35.  Now 39, she shares her Journey with us:

Janis Oenbrink;  August 1, 2018

Endometriosis changes the lives of many, and in multiple ways.  Infertility, pain, fatigue, depression, and a multitude of other miserable symptoms encompass the disease of endometriosis.  I have dealt with this disease for years, and along the way, been diagnosed with Irritable Bowel Syndrome, anxiety, depression, ruptured cysts, etc.…. as well as been called crazy, lazy, and a hypochondriac.

Endometriosis is diagnosed during a laparoscopic surgery, and in my case, during my hysterectomy. Before that, I had 2 colonoscopies, one upper endoscopy and my gallbladder removed and hadn’t even considered endometriosis as an issue.  Little did I know, at that point, the symptoms I deal with are consistent with both GI issues and GYN issues. Since the hysterectomy in 2014, which removed all but one ovary and one fallopian tube I have had three endometriosis surgeries and in February 2018, removal of my remaining ovary and tube. I am 39 years old and surgically menopausal. I tried every birth control pill, hormone, pain medication, and home remedy possible. Through all this, I also consider myself extremely lucky because I have two beautiful and amazing daughters, and so many other endo sufferers are unable to have children. I know I am blessed beyond measure that my hysterectomy resulted in horrible reaction to a stitch and I ended up finding the surgeon who saved my life from misery. As strange as it sounds, I am grateful for the complication.   

While I wait to get my hormones under control, I pray that I don’t have to undergo another surgery for the pain. Although I no longer have ovaries, I am receiving estrogen replacement, and unfortunately, endometriosis is hormone dependent.

Dealing with endometriosis is different for everyone and is difficult to describe.  Endometriosis is not cured by hysterectomy; there is no cure. There is the ability to remove, or excise, the lesions, but there is no guarantee that it won’t come back, appear in a different place, or grow from microscopic lesions that were not completely removed. The amount of endometriosis does not determine the level of pain one experiences either. I have been blessed beyond measure to have a husband who has listened to me whine and cry, supported me through each surgery, and gives me hope, makes me laugh and loves me when I need it most.  Pain, adhesions, scarring, bloating, fatigue, and mood swings have put my life on hold some days, but more often than not; I have done my best to ignore the pain, to keep the miserable feelings to myself, and pretend that I am fine.

But, I am not fine. I am angry. I am bitter. I am resentful. I am jealous. And I am tired. Tired of living like this, making excuses and tired of being robbed of a normal lifestyle. I have spent too many hours clutching my heating pad, praying that the sensation of my organs being scraped out will disappear. I am tired of pretending. I am so tired of this that I am going to do something about it. I am a nurse and I will do everything in my power to spread awareness of this disease.  At this point in my life, my efforts revolve around being a wife and mother, FNP school, and attempting to find the right dose of hormones that will get me through this chapter in my life. It is difficult to wrap my head around the options, the side effects, and the effect hormones have on my future. Too many women suffer, are ignored, and stuck dealing with a lifestyle they do not choose. It is much more than the side effects of pain and bleeding mentioned in a TV ad. It is a life-changer.  One in ten women experience endometriosis, yet it is greatly under-researched and under-diagnosed. It is my goal and hope to raise awareness and become a voice that so many are praying for.

(Thank you, Janis, for reaching out and for being brave enough to share your story and thoughts in such a brutally honest way.  May you find the peace we all deserve.  And I applaud your raising awareness.)

If you would like to reach out to Janis, you may email her.

And she wants to remind us: Never, ever ignore your gut feeling that something is not right. You know your body best. Don’t let anyone make you feel bad about questioning your own health. Keep track of your symptoms, surgeries, successes and failures….be an active participant in your healthcare.

 

Words of Advice…

notebook

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)


 

Orilissa: AbbVie’s New Drug to Manage Endometriosis Symptoms

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Screenshot of FDA Drug Label for Orilissa, July 24, 2018

You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain.  I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.

I’ve been following it for a while and you can read my thoughts on this blog entry about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same.  And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance).  Orilissa is estimated to hit markets for prescriptions in August of this year.

So, here you go:

On July 23, 2018, the Food & Drug Administration approved AbbVie’s new drug to treat Endometriosis pain. You may have seen it referred to as Elagolix, but it has been officially named Orilissa. It is an oral GnRH antagonist.

Please do your own thorough research before talking to your physician.

In the Resources section below is a link to the FDA’s drug fact sheet, which includes a .pdf of the pamphlet that should come with the drug. Read it. Review the clinical trials. And decide for yourself.   You can read the .pdf which I have downloaded, or by following the link to the FDA’s site and downloading it for yourself.

It appears it has limited allowable dosing (6 months to 2 years), may cause liver issues, may cause bone loss, may cause depression and suicidal thoughts, and may interact with hormonal birth control. Some adverse reactions during clinical trials included appendicitis, abdominal pain, back pain, hot flashes, night sweats, nausea, decreased bone mass density, headache, insomnia, mood swings, depression, lack of a period, anxiety, joint pain, decreased libido, diarrhea, weight gain, dizziness, constipation, and irritability.

One participant in the clinical trials committed suicide two days after she stopped treating with the pill. She was 44 years old, had treated for one month, and had no medical history or life stressors that would have been indicative of suicidal thoughts.

Where did I get all this info? The FDA drug pamphlet.

Don’t trust me, read it for yourself.

Weigh the pros and cons.

And talk to your doctor.

We are our best advocate. Do what you feel is best for you. But, please, do it informed and do it safely.

Knowing how poorly my body handled Lupron Depot (another AbbVie product), and how I became so severely depressed and suicidal on it, I will never again subject my body to something similar.  It did nothing in the long-term to stem my Endometriosis.  And was an incredibly difficult journey while on Lupron, as well as a long while before my body cleared itself of any side effects.  That is why I choose not to take Orilissa.  The decision is an individual one.  Never again.  But, again, I will never tell you not to try something; it may very well help you cope with your symptoms.  Understand, though, that it is a band-aid.  It will mask your symptoms; not clear your body of Endometriosis.  I learned that one the hard way…

If you do your research and make a well-informed decision to start (or not start) Orilissa, I wish you all the best of luck and health.  There are no judgements here.  Only well-wishes.

Resources:

AbbVie – (July 24, 2018; Press Release) AbbVie Receives US FDA Approval of Orilissa (elagolix) for the Management of Moderate to Severe Pain Associated with Endometriosis

Business Insider (July 24, 2018; Article) A New Treatment for a Condition that Can Feel Like Tiny People Skating on Razor Blades in Your Stomach and Affects an Estimated 200 Million Women Just Got Approved

US Food & Drug Administration – Drug Database: Orilissa

~ 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

Elephants & Endometriosis

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Meet Mr. Victorious!

Hi guys!

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.

Love, Lisa