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.
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.
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.
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.”
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
Another month is behind us. I have my consultation with my surgeon on September 15th to discuss my deep-infiltrating Endometriosis on my sigmoid colon and (hopefully) schedule a surgery with he and my colo-rectal surgeon to handle it.
So, in preparation for those meetings, I’ve been tinkering with my pain journal with how better to visualize or express my symptoms to others. And here’s what I’ve come up with:
As you can see, while I was on my period (the cells shaded red), pain levels were higher across the board, and more consistent on a daily basis. The “glass guts” feeling when I poop has calmed down a lot to where it’s just a painful sharp stabbing when I go half the time. And pretty much most of the other pain I experienced during the month is an odd sharp stabbing or ache every once in a while on the right or left of my lower abs.
A third of the month, I experienced days of pain of the lower left side (hello, Sigmoid Colon?). And 20% of the month had pain on the lower right abs, don’t ask me why. Most of the 12-16% of lower uterine/middle abdomen pain and lower back pain occurred while I was on my period.
Here’s the usual daily pain and food tracker, if you’re ever interested in the play-by-play:
And I still track my bowel movements and pain on a separate tracker. What goes in must come out, eh? This chart will be of particular importance to me as I head in for my bowel consultations.
During the month of August, I poo’d 41 times. Only 25 of those times were pain-free, so a little more than half. Every date on this chart represents a poo. If there’s multiple dates (like the 3rd, for example), I poo’d multiple times that day. If there’s a blue line, it means it hurt with a regular poo. If there’s a red line, it was diarrhea with pain. So, for example, on August 14 I poo’d and it stabbed through my guts with an 8 out of 10 pain level. Ugh. And the most painful poos (8 out of 10) only occurred while I was on my period. If there’s a date with no blue or red line, it was a pain-free poo.
And the charts continue! Of my August poops, 63% of them were diarrhea. That’s alotta shit. Well, a lot of loose shit…
And of those loose and watery bowel movements, a whopping 64% of them were pain-free. But when it did hurt, it varied between a 1-8 on the pain scale.
What about the logs? Of those solid non-liquid poos, half of them were pain-free also. And when it hurt, it ranged from a 1-8 out of 10 as well.
Overall, I’m super pleased with August. I only needed one Naproxen for my pain, and that was during my period. The four Ibuprofen I took in August were for headaches and not related to any Endometriosis pain.
I’m intrigued with the poo-data and look forward to sharing with my doctors. And would still like to pursue a path of colo-rectal surgery to look at and remove the DIE on my sigmoid colon. Perhaps after it’s gone, my bowel movements can become more consistently pain-free and solid.
I absolutely cannot believe it’s August already. This year has flown by. And what a weird year, indeed.
So here’s my July pain, symptom, and diet tracker.
I’ve had A LOT less pain in July. And also skipped my period, which may explain that (plus the benefits of my excision surgery). But when I did have pain, it was on both the lower right side and lower left side of my lower abdomen (pain ranged from 2-8 out of 10). I also had some lower abdomen pain, like uterine cramping for a few days (1-3 out of 10) with mirrored lower back pain. And I went through the emotional gambit of a period, even though I was blood-less.
I still what what I call “Shifty Poo Pain” from time to time, which is that glass-guts feeling that makes it way through the middle of my guts and especially prevalent on the left side of my guts before I poo. Once I have shifty-poo pain, I usually poop within 20 minutes. Glass-Guts shifty pre-poo pain ranged from a 3-9 out of 10.
And the act of dropping a deuce itself? Now that depends. My graphs have evolved to better help me process (haha there’s a pun in there somewhere) the information!
Of the 50 times I pooped in July, a third of it was diarrhea.
And of the regular poos, here’s my pain levels on a scale of 1 to 10 (10 being the WORST pain EVER). A not-so-whopping 22% of my poopin’ caused me 0 pain:
And of the Liquid Shits (aka MudButt aka Diarrhea), the majority (64%) remained painless:
Why did I alter my Poopy Pain charts? I have my consult on September 1st to discuss ongoing symptoms regarding the deep-infiltrating Endometriosis on my sigmoid colon and I wanted to arm myself with statistics. My own statistics. 🙂
All-in-all, I’m pleased with July’s outcome. I’m sad about the ongoing glass-guts feeling, but take heart in knowing I have an appointment in September to discuss it.
Maggie Flood is a good friend of mine, and an EndoWarrior in our local San Diego group. She’s also a licensed Acupuncturist, certified Sexological Bodyworker and holistic pelvic care practitioner.
She’s put together and is hosting a six-week course on resetting your pelvic floor…and so much more. It will use Zoom for weekly meetings (which will be recorded if you can’t attend live), downloadable meditations, exercises, journaling homework, and a support community of fellow participants.
A course description:
“Pelvic Reset is a 6 week long assisted journey to guide you back to your body, uterus and root. As this course is open to all women and those with vulvas who wish to reconnect with themselves, it is especially useful for those coping with pelvic pain or female-bodied sexual dysfunction. Within this 6 week program you’ll learn the basics of embodiment, nervous system self-regulation, how to use pleasure for healing, lineage mapping your womb space, as well as new and ancient medicinal techniques to manage pain and heal from surgery or trauma. This course is designed to bring you into a new experience of your sexuality and relationship to your pelvic floor. A very special reset button, indeed.”
For more information, and to register, please check out her site. There’s a registration fee, but if you’re not happy with the program within 30 days, there’s a money back guarantee.
I’ve vowed to invest in my health this year, so I’ve already signed up. I just wanted to share in case this interested some of you.
Wow. It’s already July. I’m so far behind! Hahaha. Well, I wanted to catch up! So, here’s my pain journals for March through June of 2020!
One big shebang! Then I’ll get back on track of my monthly publishing!
March was ongoing pain on both the lower left and lower ride sides of my lower abs (a 4 out of 10), more intense on my period (6 out of 10). Sex and bowel movements were both with and without pain.
April also had the same ongoing pain, but the poopin’ hurt a lot less. The lower abdominal pain also intensified while I was on my period, reaching a 7 out of 10.
May’s pain journal looks terrifying. But it’s also my surgery-month. So, a lot of the pain and discomfort was post-op. But before surgery, lower abdominal pain was about a 4-6 out of 10. While on my period, that number soared to a 9 out of 10. On my period I also had mirrored lower back pain and painful urination. After surgery, I attribute most of the pain (including bowel pain) to healing from the procedure. Everything was angry.
June may still have been a lot of healing/recovery pain from surgery. Sex hurt. Poopin’ hurt (sometimes a 9 out of 10 glass-through-the-guts feeling), and a lot of lower abdominal pain. My period was a doozy and required two halves of Tramadol to control. June had a lot of pain with what I call “shifty poo pain”…pain that usually happens several minutes before I poo. Again, glass through guts. Almost always on the lower left side.
This has been a sit, wait, watch, and hope process. July’s pain journal has it’s own ups and downs (you’ll see at the end of this month), but I’m still watching, waiting, and hoping.
Below are the slideshows if you care to see my daily journals for each month.
And following are my poopy-graphs, if you’re a visual person and care to follow the pain with poopin’ journal (clicking on a month will download a PDF file). You’ll notice some painful poos in March and April, but an insane amount after the May 13th surgery. I would like to think it’s just healin’ guts…only time will tell.
Do you track your symptoms and share your trackers with your healthcare providers? If so, what do you use? Leave me a comment below! Let me know your system!
Nicole Tamillo sportin’ her nausea ReliefBand with her cat, Meeko
Do you suffer from nausea? Did you know there’s a drug-free device that may help ease those symptoms? What??
First, an introduction: If you follow the Bloomin’ Uterus Instagram account, you’ve “met” Nicole Tamillo. She’s my friend, confidant, an Admin of our Facebook group, and fellow EndoWarrior. And she is far more tech savvy than I!
Anyway, one of Nicole’s major symptoms when she’s having an Endo-flare is nausea. Extreme nausea. I had heard about a wristband that may help with nausea, so I reached out to the company to see if it would help with Endo-induced nausea. The wonderful folks at ReliefBand offered to send her a complimentary ReliefBand Premier to try out for her Endo-nausea. HOW AMAZING!!! Nicole and I wanted to share her unbiased review, thoughts, results, and excitement with you:
Hello! My name is Nicole Tamillo. I am 27 years old. I was officially diagnosed with Endometriosis at the beginning of 2017 with laparoscopic surgery. Although I experience many different endometriosis symptoms, my two biggest complaints are pain and NAUSEA! My pain can range from uncomfortable to unbearable, but I can normally get through it with minimal complaining. Now nausea on the other hand…. nausea is the bane of my existence. I have self-diagnosed Emetophobia. What is that you ask? EXTREME fear of vomiting. I REPEAT EXTREME FEAR OF VOMITING. I am not talking about being uncomfortable with vomiting, I am talking about full-blown panic mode!! So when endometriosis causes nausea I can not function as a human being. All I can do is lay in the fetal position on my bathroom floor. And the anxiety that comes from nausea only increases my pain. It becomes a vicious vicious cycle. And I have tried so many different things to try and lessen the severity of my nausea. I have tried OTC medications, essential oils, teas, ginger chews, pressure point wristbands, and prescription medicines. But once my nausea has hit, there is no stopping it until it runs its course. That is until I tried the ReliefBand 2.0 (aka the ReliefBand Premier)!
The ReliefBand 2.0 is a class II neuromodulation device that is cleared by the FDA for the treatment of nausea.
How does it work?
When the device is in place on your wrist and turned on, gentle pulses stimulate the median nerve at the P6 location located on the underside of the wrist. This nerve is connected to the nerve in the brain that controls nausea. When stimulated using neuromodulation the brain signals the stomach to reduce nausea. The signals have a rebalancing effect normalizing nerve messages from the brain to the stomach reducing symptoms of nausea, retching, and vomiting.
What does it work for?
The device has been clinically tested to relieve nausea, retching and vomiting associated with motion sickness, morning sickness, chemotherapy, postoperative, and vertigo. In addition, they’ve received FDA clearance this year to also treat nausea and vomiting associated with anxiety, physician diagnosed migraines, and hangovers!
How to use:
1. Finding the starting area (P6) on the wrist. You can use either wrist. It is approximately two fingers down from the wrist crease, between the two tendons.
2. Clean the area and apply the provided conductive gel. You only need a thin layer about the size of a large coin.
3. Put the device on and adjust to line up the contact over the gel on the P6 location. Fasten device snugly.
4. Activate the device by pressing and holding the power on button. Adjust the intensity by using the up or down buttons. You should feel a slight “tingling” sensation in the palm or middle fingers.
After using the Reliefband 2.0 for a few months, I can honestly say that it has helped me tremendously! I can’t imagine battling a major endometriosis flare-up without it. Although, it hasn’t been clinically proven to reduce nausea associated with endometriosis, I believe that it can make a big difference for women battling nausea related to endometriosis.
Pros:
It looks like any other fitness tracker. It has a sleek look and doesn’t stand out.
It is rechargeable.
Easily kept in your purse or bag for unexpected nausea episodes.
The intensity is adjustable
FDA Cleared
Drug-Free!
Latex Free
Fast Acting
No Side Effects
Cons:
The price point: $224.99. It is on the steep side.
When not used for a while it will die. So if you have a sudden spell of nausea and haven’t used it for a while, you will have to charge it before using it.
In my opinion, the pros definitely outweigh the cons! And the company provides a 30-day money-back guarantee.
**
If nausea is something you suffer from, have you tried the ReliefBand? They have two different models at two different prices. If you’ve tried it, we’d love to hear your experience in the comments below. Did it work? Did it not work? What else helps with your nausea? Home remedies? Pharmaceuticals? Anything? Share!
I’d like to send a HUGE thank you to ReliefBand for their interest in helping a friend. And Nicole for opening up, making herself vulnerable, and sharing her symptoms and experience! I’m so glad it has helped you!!!
