Pain Journal: October 2020

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Summary of pain from Oct 2020; contains text and a graphic of a female body with red squares around abdomen

I know I’m late in publishing October’s journal, but this week is the first time I can comfortably sit at the computer, even for just an hour at a time. And I’ve updated my pain logs since surgery (finally!), as well as my data spreadsheets! I’m so excited!

I’ll update you on my surgery (what they did, what they found, what they removed) in a separate post, but the pre- and post-op pain is a night and day difference! And the pain I’m now experiencing is me healing from the intense surgery…and I mean intense.

Okay, on with the show! (I cannot wait to update you on surgery!! Stay tuned for that post!)

My entire October pain and diet tracking journal can be viewed one slide at a time here. It even includes the medications and struggles/victories while I was in the hospital for four days:

And here’s the breakdown of my pain during October on statistical scale:

Table showing pain levels throughout Oct. 2020

What are you looking at? It’s my pain levels every day during October. The green row shows my date of surgery. And the red rows are when I was on my period. I attribute all post-op pain due to the intense surgery that was done as well as my period. I wholeheartedly believe non-period pain will fade as I continue to heal from surgery.

  • We only had sex once in October (sex has become just too damn painful) and that hurt. So, sex hurt 100% of attempts during October.
  • My bowel movements hurt 89% of the time before surgery, and ZERO percent after surgery. YAY!
  • The lower left abdomen hurt 95% of the time before surgery and 27% after surgery.
  • The lower right abdomen hurt 15% of the time before and 9% after.
  • The lower mid abdomen/uterus area hurt 5% before and 45% after surgery.
  • My lower back hurt 42% of the time before surgery and 36% after, most of which was while I was laying in the hospital bed or on my period.
  • It hurt 10% of the time to pee before surgery and 0% after
  • And, of course, I had 0% incision pain before surgery and 100% after. This too shall fade!

I had to take a moment to sit back and cry yesterday when I finished updating my October tracker. Look at that difference before and after surgery!!! I can’t even!! Zero bowel movement pain. Very little lower left quadrant pain. Very little lower right quadrant pain. Zero pain when I piss. And, again, I know the rest will fade as I continue to heal! And, hell, I’m all emotional again. I can’t wait to update November’s pain tracker!

Okay, now my favorite part…the poopy pain charts!!!

Bar graph showing pain levels when pooping
Click the image to enlarge

If you can’t read the tiny numbers on the above-chart, it shows I had painful bowel movements (whether it was a solid poo or diarrhea) almost the entire month of October, some reaching as high as a 9 out of 10 on the pain-scale. It took me a few days to be able to poop after surgery, but every poop in October after surgery has been 100% pain-free!

pie chart showing 72% of poop was solid and 28% of poop was diarrhea

Again, I cannot express how pleased I am that Dr. Mel Kurtulus and Dr. Matthew Schultzel spotted and removed the Endometriosis from my guts. And then some…I cannot WAIT to write about my surgery! Take that, diarrhea!!!!

pie chart showing various pain levels with diarrhea

And want to see something that JUST NOW made me cry as I created it? October’s solid poop pain…the pain when ya pass something NOT diarrhea:

pie chart showing various pain levels with solid poop

I cannot express, CANNOT EXPRESS, how important it is to track your symptoms and diet. Sharing my pain journals with my Endometriosis excision surgeon and my colo-rectal surgeon led them straight to my Endometriosis during surgery. Straight. To. It.

I know that oftentimes Endo pain can radiate and be tricky and the lesions can be elsewhere, too, which is why it’s important to have a surgeon skilled in spotting and excising it from everywhere…BUT…I’m a firm believer that Step One is tracking. We have to do our diligent part to not only learn and know our own bodies, but do it in a way that we can share with our healthcare team.

I look forward to sharing about my surgery! And am really excited to transcribe and analyze November’s pain journal!

I hope you’re all doing well. And if you’re not doing well, I’m right here for you. Always.

Gone Fishin’…

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Da Vinci robot (surgery)

As you may know, my Endo-Surgery No. 6 is scheduled for October 21st. So, I’ll be out of commission for several weeks.

This time it’s the tag-team dream-team of my colo-rectal surgeon (Dr. Matthew Schultzel) and my Endometriosis excision surgeon (Dr. Mel Kurtulus). They’re going in to find that remaining Endometriosis that was discovered and left behind in my May 2020 surgery and remove it, which may entail a bowel resection.

We shall find out Wednesday…

It’s been a rough past few weeks of pain.

Pain chart

As you can see, a lot of my pain has been within the 1-4 range…but but it’s been rather high since October 10th, reaching the 8s and 9s. Even with the high pain days, I still carry my doubts they’ll find any Endometriosis and we’ll be back at square one.

But with sex being so painful, 91% of my bowel movements causing some sort of agony, 95% of October (so far) having pain on my lower left quadrant, 15% of the month with pain on the lower right quadrant, 5% having middle abdominal cramps (usually around a poo), 42% with mirrored lower back pain (mostly on the lower left side), and on two occasions screaming lower left ab pain when I peed…they have to find something.

*sigh* These doubts will never go away. I have them before every surgery. And even though I tell myself that every time, and that they’ve found Endo every time, I can’t shut these doubts up.

So, I won’t know until after surgery if my recovery time is just two weeks or if it’s six weeks. It all depends on what they find and if the bowel resection is required.

Be well, dear Readers, friends, and family.

I’ll keep you updated when I feel well enough to do so.

Much love,
Lisa

Feel Good Fridays

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What a painful week I’ve had. I hope your week has been better.

So all I have in me is what I stare at every day on a bracelet:

“Nevertheless, she kept on fighting.”

I have my bowel resection surgery on Wednesday at 12:15pm. I’ve never been more ready. I still harbor that small nagging doubt that they’ll open me up and not find any Endometriosis, but it was there in May. It’ll be there in October. It’d better be.

Whatever you’re going through, keep fighting. Always.

Love, Lisa

Feel Good Fridays

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Image by Sue Rickhuss from Pixabay

It’s Friday. October 9th…time is just whizzing by so quickly.

I have several friends and Warriors having surgeries this month. One of whom is my dear Nicole. You’ve met Nicole a few times on our blog…and I don’t know where I’d be in my Journey without her. I love and appreciate her so very much.

Her surgery is next week. And mine may be the following week. Two more Warriors in our local group are having hysterectomies by the end of the month. And one Warrior is recovering from her excision surgery that she had this past Tuesday. It’s a very busy October for my San Diego Endo-crew.

Surgeries are hard. But oftentimes made more bearable with our loved ones by our side until we’re wheeled off into the operating room.

But now? Covid and the pandemic have drastically changed things.

No friends. No family. You are dropped off at the curb of the hospital, a hug and kiss to your loved ones and an awkward goodbye. Alone, you trek into the hospital, pass the pandemic screening questions and tests, and check in. You wait, alone, to be taken back into the surgery prep. And lay on the bed, alone, waiting to be wheeled back into the OR.

Granted, you’re not truly alone: there’s a hustle and bustle of nurses, doctors, and hospital staff getting you all prepared and answering questions. But gone is the comforting hand of a mother, friend, significant other.

It can be terrifying.

I endured this for my May 2020 surgery. And it was a nerve-wracking, but the time passed very quickly and before I knew it I was waking up in the recovery room and soon wheeled out to the smiling face of my husband waiting for me at the car. And I did have the caring, familiar faces of those hospital staff I’ve come to know since my 2014 diagnosis.

But all of this brings me to today’s quote:

“Deep roots are not reached by the frost.”

― J.R.R. Tolkien

We have been through so much in our lives. And we know that we are incredibly strong, even when we don’t feel it. We are allowed to be nervous, scared, and lonely. But…always know that we are also strong enough to endure whatever life throws at us.

You are strong enough to make it through this. As am I.

To anyone going through anything leaving a sense of weakness or inability, know that you can get through it. And, if you want, I am right here if you need to talk.

Love, Lisa.

Blogs I updated this week:

Endometriosis & the Bladder: added a Nov. 2020 study of a 49-year-old woman who developed symptoms of increased frequency of urination. Imaging studies revealed a mass and lesion on her bladder, which surgery confirmed to be bladder endometriosis.

Endometriosis & the Bowel: added a June 2020 study of a 37-year-old woman who had Endometriosis on her cecum, which caused a small bowel obstruction.

Feel Good Fridays

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Friday. Already. Whew, I don’t know about you, but I’m exhausted this week.

No quote today. Just a plea:

Be there for one another. In any capacity that you can.

You may never fully understand how your presence, patience, understanding, friendship, or (fill in the blank) has positively influenced another in need.

Pain Journal: September 2020

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September flew by all too quickly. October is now upon us! And hopefully I’ll find out when my next surgery will be! So much to look forward to.

I was certain I was going to skip my period, but alas it just started very late. LOL. Damn thing. I was due around the week of the 8th, and I thought that I was going to start with the full-gambit of pain I had that week. But…nope. I started 15 days later.

As you can see, I had a lot of left-sided pain this month, which warranted 14 Naproxen and one-and-a-half Tramadol. Blech. If you like stats:
  • 100% of sex was painful. We only had it once in September and it hurt so much I’ve been too terrified to try again. At least my partner is incredibly patient and understanding.
  • 79% of my bowel movements were painful.
  • 80% of the month had pain on the lower left side of my abs
  • 30% of the month had pain on the lower right side of my abs
  • 10% of the month had uterine/mid-ab pain
  • 23% of the month had lower back pain

During my consult with my colo-rectal surgeon earlier this month, he took a peek up the poopchute to make sure my pain wasn’t caused by something else. He found a tiny hemorrhoid (which he has since banded), but just having the butt-speculum (anoscope) and a finger up there caused such an intense flare up on the left side, I had to take half a Tramadol to calm it down.

Here’s my daily slideshow of my pain and diet journal:

Movin’ on to the painful poopchute! It’s frustrating: never knowing if it’s going to feel like the left side of your guts is ripping out as you drop a deuce. Most times it does, sometimes it doesn’t.

I told you nearly 80% of my bowel movements were painful. Here’s that play-by-play! Blue lines indicate painful solid poops and red lines indicate painful diarrhea. If there’s no color, but there’s a date, that was a successful pain-free poo!

Chart of painful bowel movements

And, my favorite, the pie charts o’poo!

I’ll be sure to keep you posted when I get my surgery date for my bowel resection on the left side.

Do you track your symptoms? What system do you use? I’ve fallen in love with Google Slides and Google Sheets for my homemade trackin’.

EndoWarriors: Research Company is Looking for Your Feedback

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Video conference image with six different men and women
Image by mohamed Hassan from Pixabay

A clinical research company, LaGrippe Research, is looking for participants in the USA to offer feedback regarding prescription medication and Endometriosis. If you’ve been prescribed and taken any medication to manage your symptoms and are interested in providing either positive or negative feedback, please follow the instructions below.

My understanding is it will be in the form of a 60-minute web assisted interview to discuss topics related to treatment and overall management of this condition. Those who qualify and participate will be compensated $150 as a thank you. These discussions will take place October 8th – 13th. I do not have information on their client or what pharmaceutical company may be funding this. But, you know me: I will always share opportunities for you, my dear readers and fellow EndoWarriors.

If you are interested, please fill out the preliminary questions online here:  https://www.surveymonkey.com/r/N7XJQL5

If you have any questions, please contact Maggie at (847)-373-4104 or email maggie@lagripperesearch.com  

And, as always, full disclosure: for every person that qualifies and participates, LaGrippe will compensate me a small referral fee, which I have directed them to instead donate to the Endometriosis Foundation of America. A fun way to spread the word AND help fund my favorite Endometriosis organization.

Feel Good Fridays

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Friday! The last Friday of September…already? Time just goes so quickly.

This week has been rough for me. My period started 15 days late. Ha. I was certain I was going to skip September. And the only pain I’ve had on my period has been intense lower left abdominal pain and mirrored back pain. Been living on NSAIDs, pain pills, TENS unit, and herbal pain spray this week.

I received word that they may be able to schedule my bowel resection for mid-October, but still waiting on confirmation. I would love it if it could be sooner rather than later, but we’ll see.

And now? Now we wait…

“As long as I fight, I am moved by hope; and if I fight with hope, then I can wait.”

― Paulo Freire, Pedagogy of the Oppressed

May we keep hoping and fighting ❤ Have a wonderful weekend.

Blogs I updated this week:

Endometriosis & the Appendix: a 2020 study of a 45-year-old woman whose imaging studies of her appendix appeared normal, but once in surgery was found to not only have deep-infiltrating Endometriosis on her appendix, but a carcinoma! The appendix was removed and two years after her surgery, she was still symptom-free

Orilissa: if you’ve been on Orilissa and want to share your experience, whether it be positive or negative, please follow the link to the blog entry and leave a comment! We’re hoping your experience can help others deciding to start treatment

Feel Good Fridays

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Image by Alexas_Fotos from Pixabay

Happy Friday, Readers. How was your week? Let me know in the comments below. 🙂 Let’s get to know each other a little more, eh?

I’m in surgery-scheduling limbo right now; which is totally okay. I will be patient. I will wait. And I will take heart and build courage knowing it will be scheduled soon and on the books.

I’ve had a very painful week. I met with my colo-rectal surgeon to discuss surgery plans on Tuesday. He also performed a rectal exam because I was complaining of some additional pain. Just having finger and that butt-speculum (is there a technical term for it?) in there for an instant caused an intense flare of my lower left abdominal pain that lasted for a few days. I’ve popped NSAIDs and Tramadol all week. Today seems to be the first day since without *much* pain.

I know it can be hard to stay positive when all you’re doing is hurting. It can be frustrating, demeaning, and downright depressing.

But hold on tight. Talk to someone. And don’t let go.

“The only real battle in life is between hanging on and letting go.”
― Shannon L. Alder

You are definitely strong enough to hang on. And if you feel like you can’t, I’ll be right here to grab your hand and help. Just let me know.