Purging my fears

As you know, this blog isn’t just a place for me to research and write about Endometriosis, or to share stories of other EndoWarriors…but it’s also my therapy.

And today I need to just let some stuff off of my chest:

Late yesterday afternoon, I received the final official confirmation that my bowel resection surgery is all approved by my insurance company.  November 26th is 10 days away. And it’s going to happen…

Prior to yesterday’s official proclamation, I was 100% purely excited.  “Get this damn disease out of me,” has been my honest response, followed by, “I’m not scared, I’m in good hands, I’m ready.”

Now? I feel as if I need to crawl into the depths of my nerve-wracked stomach.  I want to pull all the warm darkness around me and just shiver.  I’m scared.  I want to cry.  I want it to be over with.

All of the “What Ifs” come bubbling up.

What if they don’t find anything?  Even though there are photographs of big endo lesions on my small intestines…this is still my biggest What If.

What if we need to reschedule surgery because of (fill in the blank)?

What if they find more Endo and have to take MORE of my guts than originally intended?

What if I need an ileostomy bag?

What if the surgery doesn’t resolve my current pain?

What if my bowels don’t heal right, I leak, and have to go back in?

What if I suffer from future bowel blockages due to scar tissue?

What if I don’t wake up…?

I know in my heart-of-hearts that everything will be okay.  I’m in wonderful surgical hands.  I trust my surgeons completely. They’re incredible.  I’ll receive great care at Scripps Memorial Hospital for a few days until I’m released. My Mum will also be with me while I’m there.  And yet I’m still fucking terrified.

I’m terrified I’ll be perceived as weak in the hospital.  There’s a specific shoulder pain that comes with abdominal surgeries that makes me howl in pain.  It’s a noise I cannot suppress…  And for days after my prior laparoscopies, I am unable to get in and out of bed alone.  I cannot sit up without help.  I can’t use the bathroom without someone to help me get up and down.  I’m sure the nurses know this and are used to it, but I’m still worried I’ll be “that patient.”

And to top it all off?  I may very well be on my period during my surgery…

When friends, co-workers, and family members ask me, “Will this surgery fix you?” – I have to take a breath.  Then I have to tell myself I’m not broken.  THEN I explain (again) that this is an incurable disease.  That I hope it fixes it for a long while.  That I hope this specific surgery removes the source of my current pain.  

One co-worker even said, “I feel so bad for you because you’ve had so many health problems over the past few years.”  I wanted to smack her and yell, “I don’t have health problems.  I have Endometriosis.”  Such a knee-jerk reaction.   But I felt like she never really listened as I explained the illness, what it can do, why it can require so much surgery.   And it just hurt.

But having to explain it over and over again gets exhausting.

I pooped today.  The third time since 6:30 this morning.  And I cannot adequately express the agony of it.  First the right side (where my constant pain is) screamed.  Then the broken glass and barbed wire scooted across my lower abdomen…where it met up with the burning side of my left lower abdomen (which burns every time I have to shit) and finally killed me on the way out with a piercing pain.  Sitting on the toilet at work, trying hard to breathe through it and not cry out while tears escape the eyes…No good. No good at all.

Ten more days of nerves, and wondering, and playing this damn game in my head.  Ten more days of constant pain.  Ten more days of just really wanting it to be over with already.

I AM scared and nervous.  I’m in good hands.  I’m ready.  And I’m excited.

9 days, 18 hours, 59minutes, and 15 seconds to go…

And for some reason, as always, acknowledging and writing out what the heck is upsetting me always does help…at least a little bit.  So, thank you for being here to read this.   

Endometriosis & the Kidneys

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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.

My mind was blown!!

That one little abstract led me down a rabbit hole: how many others out there have had Endometriosis lesions on or inside of their kidneys…not just the bits and pieces and tubes leading up to our bean-shaped organs?

But before I get into the studies of women who had Endometriosis growing on (or inside) their kidneys, I want to outline the symptoms of what renal Endometriosis may feel like:

The Symptoms

Here’s a list of symptoms I’ve been able to find that have been associated with renal Endometriosis (you may suffer from some or none of these):

  • Blood in urine
  • Flank pain
  • Renal colic (pain that may feel like you have kidney stones)
  • Lower back pain
  • Symptoms may (or may not) get worse during menstruation
  • Swelling
  • Uretal obstruction
  • Some people had zero symptoms

As always, keep track of all of your symptoms, your pain, any triggers, and the timeline of when these symptoms appear.  It’s very important to walk in with tangible proof of your symptoms.  And, as always, these symptoms may also be signs of sooooo many other things.  It may not be Endometriosis affecting your renal system, but then again…it may.  Don’t discount it.  Please, talk to your doctor.

Published Studies of Endometriosis on the Kidneys

Besides the study referenced above, here are more examples of Endometriosis being found involving kidneys.  I could no locate several studies that were published between 1950-1970, but I still found plenty!

Be advised: renal Endo is considered incredibly rare!  That being said, feel free to print out any examples in the Resources section below if you’re wanting to talk to your doctor about it.  As mentioned in one study, “…endometriosis of kidney is a rare manifestation of a common disease.”  But be aware that it can happen.  Track your symptoms. And always talk to your doctors.

The first known published case of Endometriosis inside the kidney came out in 1943…seventy-five years ago!  Victor Marshall did a lot of research prior to publishing his study and couldn’t find any references to Endo inside the kidney, but did refer to a prior case with an instance of cells that might be Endometriosis on the exterior of the kidney.  But, back to Mr. Marshall’s case at hand:  a 40-year-old woman sought medical care.  Sixteen months prior, she developed a small mass in her upper left torso; six months later, she had complaints of constant swelling and left flank pain.  Sometimes the bump was tender, but her symptoms didn’t increase or decrease around her period.  Two months later, she vomited what she thought was blood.  A few months later, she found herself at Dr. Marshall’s clinic.  The chest and GI x-rays were normal, but the pyelogram (a type of imaging study) showed her left kidney was enlarged, deformed, and functioning less.  She was admitted to the hospital for further care.  The physical exam revealed a round firm mass where she told them it was.  Her lab results, including her urine tests, were all normal.  Surgery was performed.  The mass in the kidney oozed “old bloody fluid,” when it was pierced and they decided to remove her kidney.  Biopsy revealed several cysts inside, one of which oozed 500cc of “dark brown old blood.”  I had to look up how many ounces 500cc was.  Are you ready?  16 ounces!  That’s MORE than a 12-ounce can of soda!  All of the pathologists who reviewed the lesions inside the kidney agreed:  it was “endometrium tissue.”

A 1950 entry in The Journal of Urology is about a 29-year-old woman in 1948 who checked into a local Chicago hospital because of blood in her urine, which had occurred on and off for the past three months.  In 1946, she also had blood in her urine but it lasted for only two weeks.  Her symptoms did not coincide with her period and didn’t seem cyclical in nature.  A physical examination revealed nothing abnormal about her kidneys or abdomen.  Urine tests were positive for red blood cells. An x-ray (excretory urogram) was performed: the left kidney appeared normal, but they had a hard time visualizing the right kidney.  A cystoscopy revealed the bladder was normal.  A pyelogram found the right kidney had abnormalities.  Surgery was performed and  showed several bulging areas which had cysts, one of which was drained of 20cc of “chocolate colored fluid.”  At that point, her entire right kidney was removed.  Pathology confirmed Endometriosis.  Slides of the kidney tissue were also presented at a seminar of pathologists and the group agreed with the renal endometriosis diagnosis.  By 1950, the patient had no recurrence of symptoms.

In 1969, a 43-year old woman was admitted to a Nevada hospital for blood in her urine that had been on and off for the past three months.  She had a history of heavy and painful periods and received a surgically-confirmed Endometriosis diagnosis seven years ago.  A cystoscopy and pyelogram confirmed bloody urine was coming from her right ureter.  A large defect was also visualized on her right kidney (it was a presumed blood clot since it appeared full of blood) and a renal tumor was also observed.  Surgery was performed and they removed her right kidney and most of her right ureter.  Many small cysts were found inside the kidney, and each contained bloody fluid.  The tumor on her kidney was akin to an endometrial polyp.  There was no Endometriosis located within her ureter that was removed.  She continued to treat with her gynecologist for her Endometriosis and was placed on hormone therapy.

A 1976 study was published of a 23-year-old woman who complained of lumbar pain.  Four years earlier, she had a urinary tract infection and two prior kidney infections.   A year before she was admitted into the hospital, she complained of tenderness around her right kidney.  She was treated with antibiotics, but it didn’t diminish her pain. In fact, her lower back pain worsened and became constant.  Imaging studies of her right kidney showed a mass on her kidney.  Surgery was performed.  The 3cm mass was punctured and oozed yellow pus, which later tested positive for E. Coli presence.   While examining her kidney, another mass was found, which was a suspected clear cell carcinoma.  They removed her right kidney.  Pathology found the mass to be Endometriosis.  Since her surgery, she was symptom-free.

In 1980, a 40-year-old woman had a dull, aching pain in the right side of her body, just below her rib cage, for five to six months.  She had no other symptoms.  During a physical examination, a mass was found in her right loin.  An pyelogram was taken and showed excess fluid and loss of function of her right kidney.  Surgery was performed and her kidney was found to be enlarged.  A “glistening membranous” cyst was on her kidney wall.  Surgeons removed her kidney and biopsied the abnormality.  The cyst was filled with a “brownish gelatinous membranous fluid” (sound familiar?) and it was diagnosed that she had an Endometrioma on her kidney.

The British Journal of Obstetrics & Gynaecology published a study in 1991 about a 25-year-old woman.  In 1981, she had blood in her urine, but all tests came back normal.  Over the next three years, the presence of blood was a daily occurrence.  She also developed back pain, which got gradually worse.  Her symptoms were worse after physical activity but didn’t seem to heighten when on her period.  In 1984, imaging studies found a possible tumor on her left kidney.   A puncture test was conducted on the cyst and renal Endometriosis was suspected from the pathology results.  The young woman was referred to a gynecologist.  She underwent a laparotomy and her surgeon discovered an endometrioma on her ovary; it was excised.  No other Endometriosis was located in her pelvis or abdomen.  After surgery, she received birth control pills, which she took for six months and her period stopped.  However, blood persisted in her urine.  Four months after she stopped the birth control pills, her back pain once more became severe and she continued to have blood in her pee.  She had a laparoscopy performed and there were three 1mm endometriomas discovered.  She was given Nafarelin (a GnRH agonist) for the next 11 months.  By the fourth week of treatment, the blood in her urine and her back pain stopped.  Once she stopped the Nafarelin she had another exploratory laparoscopy, in which no Endometriosis was discovered.  But two months later…her urine once more contained blood.  A CT scan showed a new cyst at the site of the original one on her left kidney.  Another puncture test was performed, but the results came back normal.  Three months later, she once more had constant blood in her urine and a recurrence of her low back pain.  She was once more placed on Nafarelin for another eight months.  After the first month of use, she was symptom-free and remained so at the time the study was published.

In 2006, a study was published in Saudi Medical Journal about a 38-year-old gal who had abdominal pain for about two months.  She didn’t have any history of painful periods, urinary symptoms, or irregular periods.  She was described as presenting as “toxic, sick looking” and feverish.    Imaging studies found an ovarian mass and an exploratory laparotomy was performed.  Her right kidney was enlarged and had lesions on it and her right ureter had dilated.  Surgeons removed her inflamed fallopian tubes and both ovaries.  They also took a sample of the kidney lesions.  Pathology confirmed that her ovary and the kidney lesions were Endometriosis.  After the surgery, she responded well to Danazol treatments.

A 2009 report is about a 46-year-old woman who complained of three months of lower back pain.  The pain wasn’t worse on her period.  Physical examination and palpitation revealed a mass in her left upper abdomen.  Urine analysis and blood tests were normal, but an ultrasound and CT scan confirmed a mass on her lower left kidney.  They believed she had a hematoma on her kidney and inserted a catheter (for six days) to drain it.  The mass shrank a bit after the drainage but didn’t disappear.  She had a follow-up visit scheduled for a month later but had to be admitted to the hospital prior to that date because of left thigh pain that caused her issues with walking, nausea, and vomiting.  She underwent a surgery to look at her kidney; the hematoma mass was removed from beneath the surface membrane of the kidney and biopsied.  She received a renal Endometriosis diagnosis; the Endometriosis was lodged beneath the hematoma.  There was no recurrence of symptoms a month after her surgery.

Now hold onto your hats…a 2012 study was about a 13-year-old girl!  This child had blood in her urine and suffered from cramps while peeing, pain in her lower back (more on the right side), and vomiting.  Her symptoms had been on and off for about two years and were worse around her period.  Imaging studies led the doctors to believe she had a kidney stone.  Upon physical examination, her abdomen was somewhat swollen and she had some tenderness near her belly button.  She underwent a barrage of tests and multiple various imaging studies.  The kidney stone diagnosis was replaced with a renal Endometriosis diagnosis.  The clinic did not want to conduct surgery to confirm their suspicions, though (they opine that invasive techniques on teenagers isn’t justified).  She was released and told to seek a surgery consult.  The authors do state, however, that her medical history, symptom history, the fact that it follows her period, and the nodule that showed up her kidney in imaging studies was enough to confirm their suspicions.  (This study was roughly translated from Russian to English and I fear I’ve missed immense details).

In 2013, a woman complained of sudden right flank pain.  She had a history of painful periods and lower back pain.  A mass was felt in the right upper quadrant of her abdomen and a CT scan confirmed the presence of a “huge” renal tumor on her right kidney.  She received two months of conservative treatment, but the tumor did not recede.  Surgery was performed, her kidney was removed, and a biopsy confirmed it was Endometriosis.  Afterward, she was prescribed Danazol and had no recurrence at her 10-month follow-up.  (Sidenote: there’s a photo of the inside of her kidney showing the cysts within…)

Published in 2015 in the International Surgery journal, one study followed a surgery that took place in 2013.  The purpose of this study was to warn others about the misdiagnoses that may occur with renal Endometriosis.  A 37-year-old woman had recurrent dull pain in her right lower back.  The pain worsened during her period for the past six months.  She did not have any blood in her urine or even abdominal pain.  Just back pain.  She also didn’t have a history of painful periods, painful sex, or prior abdominal surgeries. An ultrasound found that she had fluid backed up into her right kidney as well as kidney stones present in the kidney and right ureter.  An x-ray confirmed these findings.  She was given drugs to treat the stones, as well as underwent shock wave therapy.  Neither made her back pain go away.  She was admitted to the hospital in October.  Further x-rays showed the stones were still present, and that her kidney was deformed.  A CT scan showed a mass on the lower right portion of her kidney.  It was thought to have been a tumor.  Surgery was performed to remove her kidney (due to the size of the suspected tumor).  No other lesions or masses were found around her kidney.  When cut, the mass contained “brown, serumlike fluid” within the kidney.  Pathology confirmed that the mass was Endometriosis, and not a tumor after all.

A later 2015 study was about a 53-year-old woman who had gone to the emergency room because of flank pain that she had for several years and she had a mild fever.  An x-ray showed she had stones in both kidneys.  An ultrasonogram also showed that her right kidney was contracted (her kidney appeared scarred and atrophied).  She was admitted for a suspected kidney infection.  A CT scan showed an abscess in her right kidney, too, which invaded into her psoas muscle.  The abscess was drained and three days later her right kidney was removed.  Lesions were found within the kidney and she was diagnosed with renal Endometriosis.   And the patient was symptom-free at her follow-up appointments.

Now what?

This blog entry is not intended to scare you.  It is meant to educate you.  Endometriosis has been documented on and inside the kidneys.

If you fear you may suffer from renal endometriosis, keep track of your symptoms.  That’s crucial.  Bring your diaries and notes and these studies to your physician.  The good news? In all of these studies, a mass was visualized in imaging studies.  And in most cases, a physical mass was felt during a physical examination.

Start there.

Even if you don’t have renal Endometriosis, you really can’t mess around with symptoms of any type of trouble with your kidneys.  Backaches? Abdominal aches?  Blood in your urine?  Run to your doctor…whatever it may be, it’s not normal and may be a sign of something far more detrimental to your health.

Resources:

BMC Research – (Article, Oct. 2015) – Endometriosis in a Kidney with Focal Xanthogranulomatous Pyelonphritis and a Perinephric Abscess

British Journal of Obstetrics & Gynaecology – (Abstract, April 1991) – Renal Endometriosis Treated with Gonadotrophin Releasing Hormone Agonist.  Case Report. (full article may be accessed here)

Child’s Health – (Abstract, 2012) – Renal Endometriosis in a Child (full article may be accessed here…head’s up – it’s in Russian.  I used DocTranslator to read it in English)

Fertility & Sterility – (Abstract, July 2009) – Renal Endometriosis Presenting with a Giant Subscapular Hematoma: Case Report (full article may be accessed here)

Il Giornale di Chirurgia – Journal of Surgery – (Article, Dec. 2017) – Renal Endometriosis Mimicking Complicated Cysts of Kidney: Report of Two Cases

International Surgery – (Article, 2015) – Renal Endometriosis Tends to be Misdiagnosed as Renal Tumor: A Rare Case Report

Journal of Endourology Case Reports – (Abstract, Oct. 2018) – Renal Endometriosis: A Case of an Endometrial Implant Mimicking a Renal Mass (full article may be accessed here)

National Cancer Institute Anatomy of the Kidney & Ureter

Saudi Medical Journal – (Article, 2006) – A Young Woman with Endometriosis of Kidney

Scandinavian Journal of Urology and Nephrology – (Abstract, March 1976) Renal Endometriosis (full may be accessed here)

The Journal of Neurology – (Abstract, March 1980) – Endometrioma of the Kidney: Case Report (full article may be accessed here)

The Journal of Urology – (Partial article, Dec. 1943) – The Occurrence of Endometrial Tissue in the Kidney (full article may be accessed here)

The Journal of Urology – (Partial article, Oct. 1950) – Endometriosis of Kidney (full article may be accessed here)

The Journal of Urology – (Partial article, Sept. 1969) – Renal Endometriosis Associated with Hematuria (full article may be accessed here)

Urological Science – (Article, March 2013) – Renal Endometriosis Mimicking an Angiomyolipoma

~ 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

The Bowel Resection is Coming!

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The red circle is the approximate area where my Endo is

If you’re one of my dedicated readers, you’ll remember that I had my third Endometriosis excision surgery on July 18th of this year.  You may remember that during that surgery it was discovered that I had a few big ol’ chunky Endo lesions on my bowels (where my small intestine and large intestine meet) that couldn’t be superficially removed.  A colo-rectal surgeon was brought into my surgery and advised that a bowel resection should take place.

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The only problems?

  1. I hadn’t prepped for a bowel resection (oh man, it’s a whole process for the few days leading up to surgery);
  2. The colo-rectal surgeon wasn’t in my insurance network.

The plan?  That surgeon was going to apply to become a member of my network and I’d have my bowel surgery with him as soon as everything was legit.  I met with the colo-rectal surgeon on August 8th for a consultation (oddly enough covered by my insurance since he poked his head into my surgery) and had a discussion of our future plans.

I was told in August that the network acceptance process could take anywhere from one to three months.  So, I sat patiently…for a while.

A month passed.  Then I called my insurance company to see if there was anything they needed from me to speed along the process.  Nope.  Then I called my colo-rectal surgeon’s office to ask the same question.  Nope.  Big fat nopes all the way around.

So I waited another month and then googled my medical group assigned by my insurance company.  On their webpage was the name and telephone number of the Director of Networking – the person to whom inquiries were to be made if you were a physician looking to join the medical group.

So what did I do? I called and left a voicemail message.  A week later, I left a second message.  And a week after that, I left a message with her secretary.

The day I left my third message…she called me back. The Director! I don’t know what I expected, but certainly not what happened next.

She apologized for not calling me back sooner but stated she was having my medical history and records pulled to review.  She found that there was no mention of any pending referral or need for a bowel resection; which wasn’t unheard of since the surgeon wasn’t (yet) an in-network physician.  BUT Dr. Schutzel (my soon-to-be-colo-rectal surgeon) likely wouldn’t be approved for another three months. Early 2019!  I wanted to cry.

I briefly filled her in. Well, that’s a flat-out lie – you know I can’t do anything “briefly.” I mean, look at this blog entry already!  Anyway…she heard me out. All of it.  And offered a suggestion:  have my gyno-surgeon put together a written request explaining my need for a bowel resection and why we wanted it to be this particular out-of-network surgeon (rather than one of the four already in-network).  Then needed to tack on a copy of my July op report, and the Directory may…and I stress the word may…be able to get a one-time-only approval to have the out-of-network (aka yet-to-be-approved) surgeon covered by my insurance to do my surgery.

I gushed my appreciation and thank yous to her and hopped on the phone with my gyno’s office.  They prepped the letter the next day and sent it off!  A few days later: *abracadabra* I get a phone call (which I missed) and listened to in my voicemail.

It was the Director of Marketing…calling me after hours to let me know that the request had been APPROVED and the next step was to coordinate the surgery date!

OMGOMGOMG

She did it!! We did it! But I never would have known it was possible if it weren’t for her taking the time to review my records, listen to my tale, and offer the suggestion!

Literally less than a week from the day we spoke to the day she called to let me know it was approved!  I’m so grateful to her and my gyno’s office!

The following morning, I called the colo-rectal surgeon’s office to see if they needed any information from me.  By lunchtime the same day…everything was all set up:

My bowel resection is scheduled for Monday, November 26, 2018, at 7:15 in the morning!

And to make things even better?

  • It will be a robotic-assisted laparoscopy, using the DaVinci system (which is what’s been used for my three prior laparoscopies); Aaaaaaaaaaaaaaaaaaaaaaannnnnnnd…
  • Dr. Kurtulus, my Endometriosis excision surgeon (and gyno and incredible human being) will be scrubbed in and at-the-ready to take a peek under the hood to look to see how I’m doing since my July surgery! And to excise any Endo they may spot along the way!

The double-whammy!!

I’m so comforted by the fact that my medical care team fought for this to be approved and scheduled so quickly.  But the super-duper comforting thought?  Dr. Kurtulus, my gyno and my surgeon, made himself available (and insisted on being present) for my colo-rectal surgery.  And influenced the decision for the surgery to be robotic-assisted.

And…this entire endeavor is a huge reminder on why we should be persistent and self-advocate.

Now here’s my question to you gals and guys:  If you’ve ever had a bowel resection, do you have any tips for surgery prep, recovery, or diet?  I have my pre-op packet and I’m sure I’ll receive a whole slew of post-op instructions…but I also like to hear your experiences and suggestions.   If so, drop me a comment below! Please!!

I’m so excited. So ready.  So appreciative!

 

 

Endometriosis Caused Leaking Out of a Hole by the Hip?

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What the heck am I talking about?

There’s a study published in August of 2018 that I just read, and it threw me for a loop. So I wanted to share it with you.

A 52-year-old woman went to her Primary Care Physician because she had a weird leaking hole near her right hip.  It just drained a nasty discharge.  He put her on antibiotics for two weeks, but it didn’t resolve.  After suffering from the drainage for two months, she went to the emergency room.  You can see a photograph of her little hip-hole here.

Her prior medical history included a nephrectomy (the removal of one or both kidneys) and a c-section.  She also denied any changes to her bowel habits, any signs of infection, or abnormal weight loss.  She didn’t have any signs of fever, her white blood cell count was normal, her blood circulation was fine, and her abdomen was a little bit tender.

A CT scan found a “cystic lesion” near her lower right pelvic area and a fistula that exited out of her body near her right hip.  Now before I go on, I had to look up what the heck a fistula was.

In my super layman understanding? It’s a hollow tube from one place to another.  In this poor woman’s case? From her bowel to the outside of her body.  The authors classified it as an enterocutaneous fistula…You can only imagine what that discharge must have been. (Ewwww)

Due to the surprising results of the CT scan and a concern for a bowel perforation, she underwent a laparoscopy.   The cystic lesion discovered in the CT scan was “severely adhered” to her pelvic floor and to her bowels where her small intestine and her large intestine meet, aka the terminal ileum.  They removed the mass and the section of intestines in one fell swoop and the biopsy results came back as positive for Endometriosis…so she received a diagnosis of Ileal Endometriosis.  The authors of the study believe that this Endometriosis caused the enterocutaneous fistula…the hole that she had been leaking discharge from her right hip.  She was released from the hospital six days later without further incident.

Not only is this incredibly rare…it’s believed to be the first case of its kind.  So please don’t panic at every oozing sore you may have on your body.  BUT…do arm yourself with the knowledge that it can happen.

I was amazed and flabbergasted by this study.  Of course, the authors don’t opine as to how the ileal endometriosis caused the enterocutaneous fistula, but chalk that up to one of the many mysteries of our illness.

Resources:

Journal of Gastrointestinal Surgery – (Abstract; Aug. 2018) Ileal Endometriosis: a Rare Cause of Enterocutaneous Fistula  – Please contact me if you’d like to read the entire article

Inner BodyTerminal Ileum

UCSF Health – Enterocutaneous Fistula

~ 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

Aly Needs Our Help: An Endometriosis Survey

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Yesterday we shared Aly’s story with you.  Today, we’d like to share an Endo project that Aly is working on…and she needs our help!

If you didn’t read Aly’s Endometriosis journey, you can do that here.  Or here’s a quick introduction from Aly regarding her project:

I have been struggling with endometriosis for 7 years now plus 7 other chronic illnesses and I am only 21. I am a graphic design student and for my senior project, I want to create a catalog/brochure that would be available in doctor’s office or clinics to:

  • give patients information about the disease
  • ways to help with the pain and symptoms
  • share stories
  • find support
  • to help bring awareness about endometriosis
  • and a way to let women know they are not alone in the fight.

She has created a survey that she is asking people to take to help her with my research to create a catalog/brochure that people won’t just throw away. She’s also open to suggestions for the content, as well.  If you’d like to participate, here is the link to her survey:  https://apps.facebook.com/my-surveys/endometriosis?from=admin_wall&seed=838

I’ve taken the survey and it took a few minutes and had some valuable questions to answer.

Just a little encouragement

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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……..

 

An addition to my Endo Tattoo

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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.

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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!

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If you’re in San Diego, I highly recommend Mia at the Jade Buddha Tattoo!!!

July 2018 Surgery Recovery

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

As you may know, I like to take extensive notes during my recovery from my Endo surgeries. This helps me better be prepared in case I have another one – just to get a sense of what was normal and what I can expect next time. And who knows – it may help you…or someone you know.

A good friend of mine, Brandie, typed up my chicken-scratch notes. (Thank you BRANDIE!) They can be read here. BUT, the “cliff notes” version is below:

DAY ONE (July 18, 2018, took 1 Percocet, 1 Zofran, 2 Gas-X): We got home from the hospital around 7:00 p.m. I don’t remember any of the ride home, which is probably good because it was freeway rush hour and probably wasn’t very pleasant. The first thing I did inside was pop a throat lozenge. My poor throat was sooore and tender. Then had a bowl of bone broth. My lower stomach pain was a 3 out of 10, and my belly button incision pain was a 5 out of 10.

At around 8pm, I tried to sit down for the first time. That tell-tale shoulder pain began to creep up with a vengeance (7 out of 10) and I only sat for 3 minutes. Well, that was a waste. I needed help getting up and down. I knew I’d have to sit again or lay down…but not yet. I popped a Percocet, a Zofran, and a Gas-X.

By 8:30, I had my first pee since I got home. It hurt soooooo much (9/10), but I figured that pain was likely because my bits were still tender from the catheter. By 9pm, I tried sitting on the couch again: no luck. Shoulder pain was a 9/10 and gave up and walked for the next 20 minutes. Then tried to lay down (propped up on pillows), but the shoulder pain flew back up to a 9 out of 10. Did a lot of walking and breathing. By this time, my incision pain was a 2/10 and my lower back pain was a 1/10. I just wanted to sleep, though…

By 9:35, we tried laying down again propped up by even more pillows. The discomfort was minimal. By 10:15pm, I was awake and had to walk around for an hour. I had to pee before going back to bed (again, urination pain 9/10), then I was overcome by nausea. Mom helped me on my hands and knees and I vomited (pain 2/10). I believe my Percocet pill from 2 hours earlier was still floating around in my stomach because my puke was a beautiful shade of blue. At 11:45pm, mom helped me back into bed, but I couldn’t fall asleep until 12:20-ish.

DAY TWO (Fiber; took 2 Gas-X):

Incision pain 2 – 6/10 (10/10 when struggled to get out of bed)

Shoulder/CO2 Gas pain 3 – 10/10

Lower abdominal pain 2 – 9/10

Lower rib pain 1 – 4/10

Lower back 1 – 4/10

Lower ab pain near right hip 2 – 8/10

Pain while urinating 1 – 6/10

Woke up nearly every hour still…poor Jim and Mom. And needed help getting on and off the toilet.

Was still passing some clots throughout the day.

Nothing to eat except bone broth and crackers.

Memorable Moments:

At 1:20am, I woke back up stiff and needing to walk. Dragged my husband out of bed to help me get out of bed and proceeded to walk around the house for an hour. Jim went back to bed. And Mom was in and out of sleep as I cruised around the living room using the walker. When I went to go back to bed, the shoulder pain came back a 10/10. Mom and Jim had to help me (panicked) out of bed and I had to calm down before we tried to reposition and go back to sleep. At 2:40am, we did just that. I slept off and on until 7:15am.

At 3:55pm, my first FART!

At 4:37pm, I can lift my leg higher than the bah tub rim!! I couldn’t do that earlier!

DAY THREE (Purelax; took 1 Gas-X; 1 Naproxen Sodium):

Incision pain 2 – 3/10

Lower abdominal pain 3 – 9/10

Lower back 1 – 8/10

Pain while urinating 1/10

Pain while farting 1/10

Was able to sleep for a few hours in a row before waking up throughout the night.

Ate soup and crackers. Snacked on a pickle. Small bowl of ice cream (I mean…like 2 small spoonfuls)

No shoulder/gas pain today!

Memorable moments:

7:20am, my first poop!!!!!

8:50am, although I still need help getting on and off the toilet, I was able to (carefully) pull up my panties by myself today!

12:58pm, was able to get off of the toilet by myself! But I still needed help getting down onto it.

1:01pm…oh dear god…the Enema Story. TEAM POOP! Rosie and Erin helped me. And let’s just say by sheer force of necessity, I was able to get myself onto and off of the toilet by myself…Needed the enema due to severe and constant lower ab cramping and figured it was poop. Yep…there was LOTS of poop. Throughout the day, continued to get on and off the toilet by myself! PROGRESS!

4:50pm, was able to slowly and gently walk down the stairs to check the mail with Rosie and Erin! One step at a time.

DAY FOUR (Purelax; 1 Naproxen Sodium):

Incision pain 1 – 6/10

Lower abdominal pain 2 – 6/10

Lower ab pain near left hip 7 – 9/10

Pain while urinating 1 – 2/10

Pain while farting 3/10

Still needed help getting in and out of bed.

Ate soup with crackers. Snacked on cracker. Nachos for dinner!

Memorable Moments:

10:10am, got into the shower by myself!!! FREEDOM!

4:00pm, getting better with the steps outside! Still one at a time, though.

10:00pm, FINALLY laid down flat to sleep. YES!! No pain. Although I did get myself out of bed alone…don’t do that again. Not yet.

DAY FIVE (Purelax):

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Lower ab pain near right hip 2/10

Ate tomato soup with crackers. Snacked on watermelon, blueberries, dolma, and pickle. Chicken balti pie for dinner.

Memorable moments:

12:55am, got up out of bed alone to go pee! Kind of waddle around like a turtle on its back, but it works.

10:10am, got dressed in REAL clothes! Skirt, tank top, and brushed my hair!

6:50pm, Jim and I went for a walk around our mobile home park for a few blocks. It was marvelous to get out of the house. Slow going. Didn’t get far.

8:50pm, pooped again! No enema needed! And no pain!

DAY SIX (Started my period! Fiber; 2 Ibuprofen):

Incision pain 2 – 3/10

Lower abdominal pain 2 – 7/10

Lower back pain 3 – 5/10

Ate miso broth. Snacked on watermelon, popcorn, apple with peanut butter, pickles, tortillas. Dinner was a pork and (very little) cheese. Yep, my appetite is BACK!

Memorable Moments:

5:26am, woke up thinking I peed the bed. Nope, just started my Ninja Period.

6:20am, BIG poop with no pain! Yep, I’m back, baby!

9:00pm, another short walk around the park with my husband.

DAY SEVEN (Fiber):

Incision pain 2 – 6/10

Lower abdominal pain 3 – 6/10

Lower ab pain near right hip 3 – 6/10

Pain while urinating 1/10

Pain while farting

Pain while pooping 5/10

Ate broth and soup. Snacked on popcorn. Dinner was fettuccine alfredo with shrimp.

Memorable moments:

I can bend over!!!

Lower left window band-aid came off! Steri-strips still in place. Looks good!

7:00pm, rode in car to go to dinner. Speed bumps and potholes hurt my lower stomach and incisions (4/10). Had to walk around the restaurant while waiting for dinner since sitting too long hurt.

DAY EIGHT (Fiber; 2 Ibuprofen): – it’s been one week since surgery!

Incision pain 2 – 8/10

Lower abdominal pain 2 – 7/10

Lower ab pain near right hip 5 – 7/10

Ate miso broth and leftover pasta. Snacked on popcorn, dried apricots, tortillas.

Memorable Moments:

6:50am, Baku walked on my stomach. Damn cat. All incision pain 7/10.

2:15pm, I can get in and out of bed easier by myself.

11:30pm, right incision pain was an 8 out of 10 and kept me awake until 1:00 a.m.

DAY NINE (Fiber; 2 Ibuprofen):

Incision pain 2 – 3/10

Lower ab pain near right hip 2 – 3/10

Pain under left rib 2/10

Ate soup & crackers, baked beans. Snacked on Hershey Kisses. Orange chicken for dinner.

Memorable Moments:

6:12pm, can still only sit upright for 10 minutes before incision pain is a 6 – 8 out of 10.

8:10pm, went for a 20 minute walk around the park with Jim. No pain!

DAY 10 (Fiber; 2 Ibuprofen):

Incision pain 2 – 7/10

Lower abdominal pain 1 – 4/10

Pain while urinating 1 – 2/10

Pain while farting 2/10

Pain while pooping 2/10

Ate scrambled eggs with cheese, soup, leftover orange chicken. Snacked on kettle corn.

Memorable Moments:

8:15am, Able to wash my calves for the first time in the shower! And I was able to blow-dry my hair! Lost left incision band-aid in the shower. Steri-strips are in place. And my belly is much less bloated!

9:00am, still can only sit upright for 10 minutes without pain.

7:00pm, walked around the grocery store for an hour with Jim. He did all the heavy lifting, but I’m exhausted.

DAY 11 (Fiber; 4 Ibuprofen):

Incision pain 2 – 6/10

Lower abdominal pain 2 – 6/10

Pain by right lower ab near hip 2 – 5/10

Pain while urinating 2/10

Pain while pooping 2/10

Ate eggs, corn beef hash, toast. Snacked on a plout and cherries. Snacked on kettle corn.

DAY 12:

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Pain while urinating 8/10

Pain by right lower ab near hip 2/10

Ate rolled tacos.

Memorable moments:

Went thrift store shopping with Jim. Exhausted and napped for 2.5 hours afterward.

DAY 13 (2 Ibuprofen):

Lower abdominal pain 1 – 5/10

Pain by right lower ab near hip 5 – 9/10

Pain while pooping 1/10

Ate fried egg sandwich. Snacked on cherries, a pluot, watermelon, and cherry tomatoes. Dinner was cauliflower, beans, corn & cheese burrito with salsa.

Memorable Moments:

Spent 2.5 hours at the library. Too much sitting on hard chairs caused a lot of pain! And the Lyft ride was brutally bumpy.

DAY 14 (Fiber):

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate nachos (with very little cheese). Snacked on an apple with peanut butter. Dinner was yellow curry with chicken and rice, golden shrimp, and crab rangoons.

Memorable Moments:

Only woke up once during the night to go pee!

DAY 15:

Incision pain 2 – 7/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 1 – 3/10

Lower back pain 1/10

Ate sushi.

DAY 16:

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate 2 eggs, french toast, and bacon. Lunch was a baked potato with sour cream and chives.

Memorable Moments:

Lost a few Steri-Strips today! Looks good.
Ran errands with brother in law: Trader Joe’s and Sprouts and Smart&Final. Minimal discomfort but exhausted. I didn’t do any heavy lifting.

Drank 3 glasses of pomegranate champagne. My first alcohol since 2 weeks before surgery!

Jim and I enjoyed a little bit of foreplay and “just the tip.” Didn’t penetrate too much and it was a lot of fun. No pain!!

DAY 17 (2 Ibuprofen):

Incision pain 1 – 4/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 2 – 4/10

Pain while pooping 3/10

Lower back pain 1/10

Lower right rib pain 4/10

Ate leftover yellow curry. Snacked on a pluot. Dinner was a chicken breast sandwich.

Memorable Moments:

Vacuumed, did laundry, and changed the cat litter. It was exhausting, but I took it slow and easy and didn’t overdo anything. But…by looking at the cumulative pain scores above, I can tell I overdid it. Crap.

DAY 18 (2 Ibuprofen):

Incision pain 2/10

Lower abdominal pain 2/10

Ate two waffles with fake butter and real maple syrup.

Ate Indian food for dinner.

Memorable moments:

Enjoyed 3 glasses of white wine. And it looks like my body recovered well from yesterday’s chores.

DAY 19 (Took 2 Ibuprofen):

Incision pain 3/10

Lower abdominal pain 3 – 8/10

Pain by right lower ab near hip

Pain while pooping

Lower back pain 3/10

Ate 2 waffles, drank three glasses (small) sangria, 1 glass wine, lots of water. Bean guacamole chips, chicken sandwich, pickles, chocolate chip cookie, lentil salad.

Memorable Moments:

Today was our Endo Support Appreciation BBQ! It was WONDERFUL to see everyone, to meet their support, and enjoy their company. I’m tired, though!

Lost another Steri-Strip!

And on DAY 20: August 6, 2018, I returned to work. It was my first time driving since surgery. And it was tough. I also had my post-op appointment that day. Dr. Kurtulus removed all of my Steri-strips and everything continues to heal well.

Today is August 27, 2018, and it still hurts to sit at the computer for too long. I have to get up and stretch/walk several times during the work day.

My advice if you’ve got a surgery recovery to look forward to? Take one day at a time. ASK FOR HELP! And listen to your body.