Feel Good Fridays

Stairs

It’s FRIDAY!

It’s DECEMBER! What?!? ALREADY?

Today’s quote is brought to you by Erin…a good friend of mine who’s been there for me during my Journey.

“Don’t let the entire staircase overwhelm you. Just focus on that first step. One step at a time…”

Literally, take it one step at a time, one day at a time, one small victory at a time, or one battle at a time. And know that you’re never alone. We can grace these stairs together.

Love, Lisa

Pain Journal: November 2019

Summary of my November 2019 pain

November was gone in the blink of an eye, but while it WAS November, it felt slow! And this was my most painful month since last year’s excision and bowel resection.

I still get mild staple discomfort if I eat too much. And my bowels still react if I have too much cheese or alcohol.

On November 2nd, I started feeling some pain in my lower right abdomen area, but I figure that was bowel-related since I had some diarrhea that day. November 4th, however, brought pain to my lower left abdomen and the same mirrored location on my left lower back. Not pain at my uterus! That pain started as a 3 out of 10, but escalated to a 6 out of 10 as the day progressed. Heat didn’t help. I wasn’t allowed to take any Naproxen or other NSAIDs (Aleve, Advil, etc.) because of a colonoscopy I had scheduled for November 8th.

Why all the pain? November 5th: I started my period. Great. And the pain progressed. It now hurt when I went pee, the pain never ended the night before and interrupted my sleep, and the pain levels of that same spot in my lower left abs and lower left back spiked to a 8-9 out of 10. So, I popped Tylenol when I could, I used herbal pain spray, my Livia unit, my heating pad, and even hopped in the shower. Nothing really worked, but the pain fluctuated between a 6-9 throughout the day. A day that I took off work to be miserable at home. I had to drive to a pre-planned appointment with my excision surgeon to discuss some ultrasound results. My pain during that visit was an 8-9 out of 10 and I couldn’t help but do the usual bend-myself-in-half trying to choke out the pain and I cried in the lobby like a boob. He gave me a referral to a pain management doctor (which I’m still trying to set up the appointment), and we had “The Talk” about another excision surgery and hopefully a hysterectomy. I will see Dr. Kurtulus again in February to give my body a few months to see what happens with my pain and the pain management referral.

On the 6th, I woke up NO pain! I was so excited, but it all flooded back (once more only on the lower left side of my abdomen) by 8am when I drove to work. It fluctuated between a 0-7 out of 10 throughout the day and I took Tylenol when the pain was too intense.

The next day, driving once more to work brought my pain from a 0 to a 6 out of 10, once more only on that lower left side of my pelvis and back. But I didn’t take any Tylenol because of the colonoscopy scheduled for the following morning.

On the 8th and 9th, I had some residual pain on that lower left abdomen, but that was it. I didn’t have any further pain until I started my period…again…on November 29th.

An interesting note, sex hasn’t been painful (we avoid doggy style, though) all year. But on November 27th, we couldn’t do it because I was in severe discomfort with insertion, even well-lubed and aroused. I suspected my period was looming. Two days later: she hit.

November 29th: I woke up with uterine cramps (yay, not in the lower left like last time!). The cramping was about a 4-6 out of 10, but I had been dreaming of period cramps. A hot shower didn’t help. I took a few Naproxen that day (the pain fluctuated up to an 8) and helped reduce my pain.

November 30th’s cramps were between a 0-7, and again I had to take Naproxen a few times.

Day 3 of my period (December 1st) brought small cramps throughout the day (0-6/10), but they were quick pulses that came and went, rather than a constant pain. I’m now on Day 4 and have had even less cramps.

I’m glad that my pain appears to only be when I’m on my period, but am extremely disheartened to I think my Endometriosis is back. Especially with how intense my early-November period was. But am pleased to wait for the pain management doctor and February’s consult. If you’d like to watch my daily food, beverage, poo & pain tracker, here it is:

The good news? It still doesn’t hurt when I poo. 😀 Although the bowel prep was lengthy and violent: I poo’d 32 times on November 7th after I drank the prep, and another 43 times on the morning of the 8th before my procedure! But…NONE OF THAT HURT.

Speaking of poo, here’s my poo-chart! Would you look at that “Diarrhea” chart during my bowel prep?!!?? OHMYGOD, may it never be that high again!

December is here. I’m already on my period. And, if my counting is correct, I’ll be on it again for Christmas…we’ll wait and see how that one does!

Today is my one-year resectionversary!

One year ago today, I had my bowel resection surgery to remove to visible lesions of Endometriosis off of my small intestine. A section of my right intestine, as well as appendix and cecum were also removed. All biopsies came back as Endometriosis, including microscopic Endo on my appendix, and cecum.

I documented my healing process with photos! If you follow my personal page on Facebook, you already knew that. BUT I made a one-year anniversary video of my healing process!

How has my quality of life been since my surgery? Once my body recovered from the trauma of the surgery, it’s been pretty awesome. I mean, I’ve had to make some adjustments to diet, monitor my alcohol intake, stumble along the way.

BUT…I haven’t endured a single painful poop since my surgery! In the past, it’s felt like I poo’d glass and razor blades and barbed wire. The guts felt like they were packed with the sharp objects and just cutting along the interior as I poo’d.

That is long gone. Good riddance. Never come back.

I cannot say it enough: Thank you Dr. Schultzel and Dr. Kurtulus for your expertise, professionalism, and genuine desire to help your patience!

And my words of advice to you? Always track your symptoms. Write them down. Voice them to your doctor. Bring in copies of your pain journal. Find a doctor knowledgeable in Endometriosis and excision. Pursue answers and proper treatment!

Here’s to hoping the rest of my body stays Endo-free, too…

Feel Good Fridays

Happy Friday, my lovelies!

May you find inspiration to keep going, and may today’s quote help you get there!

“Being strong doesn’t mean that you never break! Being strong means that even if you break into a million pieces, you still have the courage to pick those pieces up, put them back together, and keep going on.”

― Manprit Kaur

We can keep going. And we will. Together.

Love, Lisa

Blogs I updated this week

Endometriosis & the eyes: added an August 2019 study of a 41-year-old woman with Endometriosis on the outside of her eyelid!

Feel Good Fridays

Message in a bottle
Message in a Bottle Sea” by Antonios Ntoumas

Happy Friday! The end of the week (another one?!)! I hope that you’re all able to have a wonderful and fulfilling weekend.

My husband and I have been attending twice-a-week yoga classes through a local community college, and it’s been great. This past Tuesday, we did our first guided meditation in the class: find yourself in your favorite natural setting. Of course, I was in the mountains, propped on a log sitting in front of a campfire at dusk. Then our instructor threw in a body of water nearby, so I walked toward a lake. Laying on the shores was a bottle with a message inside. I popped open the bottle, pulled out the message, and unfurled it.

It was a message to me, from me.

And it was four words, written in incredible, beautiful calligraphy (which I don’t do, by the way):

“Everything will be okay.”

I took a moment to soak that in, then opened my eyes in the darkened classroom and just let the words wash over me. Everything: finances, my Endo, the colon polyp biopsy, next year’s possible surgery. Everything. Everything will be okay.

It was weird: crying silently in a blackened room with six other people laying down nearby on their respective yoga mats, oblivious to what was going on in my head. I can’t even explain the relief that flooded over my being. I wiped my tears, took a few deep breaths, and closed my eyes.

And that mantra has been something I’ve now whispered to myself every day since.

May it work it’s way into your thoughts today, too.

Much love, Lisa.

My First Colonoscopy

If you’re in the Southern California area and need a colonscopy, may I recommend The Endoscopy Center in Encinitas with Dr. Seeger? Everyone there was incredible and super friendly! What I was afraid would be a painful experience wasn’t painful at all. And it was sooo easy. Truly the hardest thing is drinkin’ the bowel prep and enduring a few hours on the toilet.

Why did I need a colonoscopy at 40 years old? My colo-rectal surgeon sprung it on me: one is needed a year after a bowel resection; just to make sure everything is okay inside.

Okay, on with the findings: a small polyp was discovered inside my sigmoid colon and removed for biopsy. The rest of my guts looked great! Wanna see?

Colonoscopy photos of my guts

My favorite thing I learned from your colonoscopy? I still have my ileocecal valve! I thought that bad boy was removed during my bowel resection. Seems like I still have it, according to the photos! I’ll ask my colo-rectal surgeon when I see him. Yay! And I like that they could see, and photograph, the section where my guts were stapled together!

Drinkin’ my Suprep

Thursday night’s bowel prep was…a lot. I thought I poo’d a lot for my November 2018 bowel resection? Oh my god…I poo’d 32 times. Thirty-two!

And more Suprep Friday morning

And Friday morning’s prep? I crapped 41 times! Including 20 minutes before the camera went up my bum! Apparently my rectum is competitive and had to beat the record from the night before. One day I’ll log the times, etc., but not today.

The plan? Wait for the biopsy results, discuss with my physician, and have another colonoscopy in five years!

A huge thanks to The Endoscopy Center crew for making my first colonoscopy wonderful: the receptionist, Tanya, the nurses (Elaine, Allison, and Lia), and Dr. Seeger. I wasn’t gassy or sore or bloated or anything I feared afterward. It was truly a pleasant experience (well, except for the prep ha!).

PS – if you’re ever afraid that you’ve still got some liquid-poo inside your guts and you’re going to just poo all over the staff during your colonoscopy, rest assured: they’ve got suction at the end of that li’l camera! It was my one big fear; and they alleviated it by explaining the suction! YAY!

Feel Good Fridays

The week is over! And what a week it’s been!

All I can say today for your inspirational quote of the week, “Be brave.”

Whatever it is you’re dealing with…just be brave. You can do this. Put one foot in front of the other and trudge forward. And remember, it’s brave to even ask for help.

If you ever need anything, please reach out.

PS – we all need a wee bit of a bravery reminder, eh? Even myself. ❤

The good news, the not-so-good news, and the plan!

A sheet of paper with the word PLAN written on top

Yesterday was horrendous to get through. My pain was almost always an 8 to 9 out of 10. It was SO bad I reminded me of my periods during my 20s. HORRENDOUS. In a ball, crying, and couldn’t find any relief in any position. I barely got five hours of sleep last night, but I’m at work today with my pain down in the 4-level. I can do this.

I met with my gyno/surgeon yesterday to discuss my recent ultrasound: my left cyst is shrinking! It’s down from a 2.3cm to a 1.2cm. Both he and the radiologist feel it’s a simple cyst that is resolving itself. No more need for another ultrasound in two months! YAY!

My explosive pain on Day One of my period yesterday was met with options. He cannot prescribe Tramadol (which is the only thing that works for me when Naproxen doesn’t) because it’s an opioid. So, back to those options:

  • Lupron Depot: no
  • Orilissa: no
  • Birth control pills: no
  • IUD: no
  • Depo Provera: no
  • Surgery: maybe
  • Acupuncture: I can’t afford it
  • Pelvic floor therapy: I can’t afford it
  • Pain Management doctor: yes

So, the plan: Get the referral to a pain management doctor (he recommended one and I already emailed my PCP for the referral) and see how that goes. Head on back to Dr. Kurtulus in February to discuss how things are going.

If still desired at that time, discuss another excision surgery and a hysterectomy to remove at least the cervix and uterus (they still suspect I have Adenomyosis), leave both ovaries if both can remain; remove one if one appears it needs to be removed. And excise any Endometriosis he may find, as well as adhesions an restore anatomy to its rightful place.

I was in so much pain in the appointment that I just cried. I felt like such a boob.

Today’s pain levels are much more manageable. And I just received word that this Friday’s colonoscopy is approved by my insurance, so I’m glad I didn’t take any NSAIDs yesterday.

Having a plan, even one that is so far in advance, helps with the mental aspects of coping. And I’m grateful for even that much. And thank you to everyone for your support yesterday!

PS – I love my doctor and his staff. Even though I wasn’t in my best mood and form, they were all so super supportive and positive and loving.

Days like today suck

So last night I started having cramping on my lower left side. I have a colonoscopy scheduled for this Friday so I can’t take any NSAIDs. I also have lower back pain in the same exact spot where my abs hurt. The pain ranged between a 4 to a 6 out of 10. All night long.

I have a doctor’s appointment this afternoon just by circumstance with my gynecologist / excision surgeon to discuss an ultrasound from last week. So 2:30 can’t come quick enough. Rather than just update my pain journal, I decided I would draw on my body where the pain is. So some of the marks are from last night and some of the marker marks are from today. I’m absolutely going to pull my pants down in my appointment.

I had a heating pad on all night and it really didn’t do anything.

Today, the pain is in the same area but intensified. It now ranges from a 6 to a 9 out of 10. I decided to go to work thinking I could just pull through, but I was there for half an hour before I realized I needed to go home. I popped two Tylenol before I left, and an hour later, it’s not done a damn thing for the pain.

The pain was so intense while driving home that at one point all I could do was pull over, cry, and scream.

But I’m home now. I have my heating pad on again which I did bring to work but the pain was so intense I couldn’t focus. At least now I’m on my couch in my bathrobe curled into a ball with my heating pad clenched to my abdomen and I’m talking to my phone as it types what I say.

I don’t know what I expect out of today’s appointment. And I really am grateful that this pain is only present one or two days a month while I’m on my period. But I find it ridiculous that all of my pain is on the lower left side and none of it is where my uterus is, so it terrifies me into thinking something is back.

Supposedly the cyst on my left side is shrinking and they do still believe it to be a simple cyst. If that’s the case, explain away my pain. The only thing I have in mind: In the past the endometriosis is super heavy on my left side. So is it back already?

Perhaps today I’ll schedule that long awaited hysterectomy. I don’t want kids at my age. My tubes are already gone. I know it’s not a cure. But if they suspect I have adenomyosis and if I only have pain around my periods maybe it’ll help?

While driving home, after having pulled over to cry and scream because the cramping became too intense, I freaking shouted the words, “I can’t do this anymore.” To nobody. To my steering wheel. To the air. To myself.

Not words of suicidal ideation, but the words of pure desperation that this pain is just too fucking much regardless of the fact that I only get it once every few months if that. I don’t want any more surgeries. I don’t want any more pills. I don’t want any more pain. I shouldn’t have to curl up into a ball clutching my heating pad on the floor at work. Something needs to be done.

But with how bad today is, how bad August was oh, and the fact that I’ve skipped 5 periods this year, something is amiss. I fear I’m going to go in and ask for one more surgery.

August was intense but not as intense as this. I missed a day of work then, too. This! A 9 out of 10, constant, and nothing is helping? Days like today suck.

Maybe it is back. Maybe it isn’t. But I feel like I’m dying today.