Feel Good Friday

Jupiter in night sky

Oh man, it’s been a while since I’ve posted one of these! I had a few weeks off of work for the holidays and man I enjoyed the R&R. But I do apologize for my lack of Feel Good Fridays.

I don’t know about you, but I’ve had several painful days between now and last August. I fear my Endo is back, or maybe it’s something as simple as adhesions, but damn it hurt. And my partner has had to watch me as I suffer, which hurts me even more. I’ve tried to hold onto the plan that I’ll be having another surgery this year to look for new lesions and hopefully have that hysterectomy (to manage the suspected Adenomyosis and period cramps). I’ve tried to keep positive and strong. But some days I failed.

And I’ve faced the hopelessness of not having medications that deal well with my pain. Naproxen is an NSAID that sometimes doesn’t work. Heating pads, ice packs, herbal pain sprays, etc. sometimes don’t work. I cannot afford regular acupuncture, pelvic floor therapy, massage, or other holistic treatments. I’ve grown sad during the painful days, at my lack of control, just succumbing to the pain. I’ve cried at appointments, had long talks with the husband, and shared with close friends. I don’t really hate my body or this disease, but I had grown to hate my inability to fight it.

But this week I had a consultation with my pain management doctor and after a very lengthy meeting, discussion, review of symptoms, and a heart-to-heart, he graciously agreed to fill a very small prescription for Tramadol: the one pill that doesn’t make me loopy or sick and does handle my high-pain days. And we’ll be scheduling nerve block injections once my insurance approves them.

I wanted to cry and hug that man. I mean, I didn’t do either because we’d just met. I was severely overwhelmed with relief. And hope. And the ability to go to work, function, and wade my way through the coming pain-days. Light at the end of the tunnel. Surgery will be coming, but I will now be able to push through the days before then.

So I wanted to take a moment to remind you…and myself:

In the darkest days, when you feel alone and hopeless, try to find a small speck of light to cling to. Reach out and find a hand to hold. Mine is always here if you need it. We will make it through this darkness together.

Just a little spark of hope can ignite so much life. I love you guys. Thank you for being here with me on my Journey, and for holding my hand and walking me through, too. May I always be there for you.

Sponsor Highlight: Erin Curlee

headshot of Erin Curlee

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor our first sponsor, Erin Curlee.

Erin made an anonymous donation, which earned her a sponsorship title! She’s been a friend of mine for many years and has been so very supportive of my Endo journey, and the journeys of my EndoSisters. Although she doesn’t reside in San Diego, her presence is well-known in our group and her support is endless.

She’s been truly amazing. And her heartfelt donation took me by surprise and made me hug her all the harder.

Our walk will take place on March 28, 2020, in San Diego, California. It has traditionally been paid by out-of-pocket expenses, but has grown so large that donations and sponsorships are now a thing! I’m truly honored and super excited to be able to do this walk yet again.

If you would like more information to be able to attend our walk, registration is free (although we are asking for optional donations). Or if you, or someone you know, would be interested in either sponsoring the event or hosting a vendor booth, please contact me! These donations, vendor fees, and sponsorships go toward paying for the cost of the event. And are tax-deductible as a donation to Gifts 2 Help.

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!

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.