Various symptoms of Endometriosis
What an incredible Journey leading up to my fifth surgery! Covid-19 postponed my surgery date by a week but, just in the nick of time, California’s governor lifted some lockdown restrictions that allowed for my surgery to move back to it’s original date of May 13, 2020. Today, June 10, 2020, marks one month since my surgery! Already! I am overjoyed with the results and the skilled hands of my surgeons.
Heather was diagnosed when she was 24 years old. Now 41, she shares her Journey and what steps she’s taken to spread awareness about this disease.
Heather’s Journey: My name is Heather Marie Kobza. I was diagnosed with Endometriosis at the age of 24. I’m 41 years old and live in Kentucky with my husband and two chihuahuas.
I’ve suffered with Endometriosis half of my life. I’ve had 5 surgeries and all were unsuccessful. I did 2 Lupron injections 8 years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.
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If you’ve followed my blog for a while, you may have already seen the entry about c-section scars developing lumps of Endometriosis. If you haven’t already read it, you can follow the link or just know there are a lot of women that develop a painful mass in or around their c-section scar that turns out to be Endometriosis. It’s not just limited to c-section scars, but those are mostly the reported instances of scar Endo. Most of the time, that lump is removed and the symptoms fade; recurrence seems rare.
An article hit my inbox this week that had me breathing heavy. I had to take a few days to calm down before I wrote today’s entry.
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Wait? What?!
You read that right. Another instance of cutaneous Endometriosis: this time between a woman’s breasts! Yeah yeah, I know cutaneous Endo is SUPER DUPER rare…but it does happen…
On December 17, 2019, the Journal of Endometriosis and Pelvic Pain Disorders published an abstract online. The physicians, surgery center, and laboratory are all located in Iran, so I’m assuming the patient is also located in Iran. I don’t have access to the full literature, but the here’s my brief synopsis on the abstract.
A 24-year-old woman complained of a lesion between her breasts that would occasionally discharge fluid. She underwent various diagnostic tests and eventually the lesion was excised and biopsied. The abstract leads one to believe it was diagnosed as Endometriosis.
Again, I cannot stress enough: if you have a weird lump, bump, mass, or lesion where it shouldn’t be: go to your doc and get it checked out. If you haven’t already read my blog on Endometriosis and the skin, please go give it a read for several other examples. Thanks and have a great day!
Journal of Endometriosis and Pelvic Pain Disorders (Dec. 2019, Abstract) – Skin Endometriosis Between the Breasts of a Young Girl: A Case Study and Literature Review
~ 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
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:
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.
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.
Recently, a study hit my inbox about Endometriosis mimicking an inguinal hernia. So, of course, my interest was piqued and research had to take place! Be warned, though, it’s considered VERY rare. In all the literature I’ve read, only 42 cases have been referenced as being documented inguinal Endo. But when has rarity stopped me from sharing something about Endometriosis? Yeah. Never. Here we go!
An inguinal hernia is the most common type of hernia (about 70% of hernias are inguinal) and usually manifests as a small lump in the groin area. Both men and women can get inguinal hernias, but it’s apparently more common in men. It occurs if there’s a small hole in your abdominal cavity which allows fat or intestines to seep through, which can a lump or swelling to occur.
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So last Thursday I had another pelvic ultrasound (both transvaginal and the traditional techniques).
The ultrasound tech noted that the cyst on my right ovary appeared to have ruptured and there was evidence of fluid around the ovary. There were also a series of very tiny cysts on the right ovary, which she commented was normal.
The left ovary still had a cyst on it, and it had nearly doubled in size since July. It’s now 2.3 cm (a little under 1-inch). What appeared previously to be an endometrioma now appeared to be a simple, non-complex cyst.
So, I stowed that information away for a few days until I met with my gynecologist/surgeon yesterday. And it was a good meeting.
He agreed with the ultrasound tech:
Simply wait. Don’t dwell on the fact that it may or may not be. Thinking about it won’t solve anything. Hold onto the hope that they were both simple cysts. And continue to monitor any symptoms.
I also took some time to talk about my uber-painful period day in late August. He’s not opposed to filling a painkiller prescription for me (yay!), but I’ve asked that we wait to see what happens with my next period.
We’re both in good spirits over the news. And I go back in two months for another pelvic ultrasound to see what my ovaries are up to.
If you read my post from a few weeks ago, you already know that I have three hemorrhoids inside my butt. Yep. Three. What can I say? I’m an overachiever. (Update 5/13/21: I’ve had A LOT more since first writing this blog entry. On 5/11/21, I had internal hemmy #7 banded, and have #8 & #9 to be handled in a few months. I’ve also had 2 external hemmies cut off)..
Why am I writing about hemorrhoids on my Endometriosis blog? Well, that’s because any one of you (yes, even you), can get them. Especially if you’re having to fight constipation, diarrhea, or both. And what do a lot of us with Endo have? Pooper-problems: yep. Constipation and diarrhea.
Today was the big day to remove the first of the three: the band ligation. Was I nervous? Of course. I didn’t truly know what to expect other than a tiny rubber band would be going around my lumpy li’l hemorrhoid. I already verified with my surgeon’s office that the band didn’t have any latex (I have an allergy), so that was a relief. Google didn’t help answer my “is it gonna hurt afterward” inquiries. I envisioned myself squirming for days, sitting on a donut pillow, walking like I had just ridden in a rodeo.
Am I? Nope!
(Update 7/6/21: hemorrhoid #9 band ligation was so painful that I had to take a day off of work. The poopchute pain was about an 8 out of 10, that radiated to the perineum, and I even feel it in my vaginal canal. Driving home was hard…to say the least. Popped a tramadol when I got he and dropped the pain down to about a 2.)
SO I wanted to share my experience, in case any of you were ever diagnosed with internal hemorrhoids and needed to undergo band ligation. But, realize that every person is different…and this is my experience.
Once in the exam room, the nurse took my blood pressure and laughed at my lame jokes. Then, I was asked to strip from the waist down and to drape the paper blanket over my lap. He left and gave me the privacy to shed my pants and skivvies, I took a precursory look at the small tray of tools and blob of lube, and hopped onto the exam table.
I was literally in and out of that office in 20 minutes: start to finish. The actual procedure took less than five minutes!
Dr. Matthew Schulztel arrived with big smiles and a warm handshake and it was time!
I was worried there’d be some type of numbing injection. Nope. Nothing but the calm, soothing voice of my colo-rectal surgeon warning me of sensations I may experience as tools went in and out.
Did it feel good? Nope. Was it painful? Nope. But it was uncomfortable…mostly just awkward. The doc lubed me up real well first, then a big metal tube went into my butt (I presumed to hold it wide open). Once my body acclimated to the intrusion, it wasn’t too uncomfortable. Then he inserted the little metal rod device that had the rubber band on it. I could feel it as the tool bumped around inside my poopchute, and could feel an odd sensation as the hollow-tube that housed the band surrounded my hemorrhoid. “You’re gonna feel a pinch,” he warned. And yep, just a slight pinch as the band was placed at the base of my ‘rrhoid. A few deep breaths, the tools were removed, and all was back to normal.
As I laid there on my side, knees together up to my chest, all I could think of while he was inside was how oddly similar this felt to a pap smear; just in a different hole. It really wasn’t as awful as my brain thought it was going to be!
I go in on August 28th for my second hemorrhoid to be similarly attacked.
He did warn that I may feel like I have to poop because of the weird band around my ‘rrhoid; at least until it fell off in one to four days, he even thought it may just fall off today! As I got dressed, I marveled on how I couldn’t feel anything. I even sat down on the chair (gingerly, at first) to put my boots on. I didn’t feel a darn thing!
But as I walked toward my car in the parking lot, I felt exactly what he was talking about. And the car ride back to work. And even now as I type this up for you. An unmistakable urge to just go void my bowels. I’m glad he gave me the head’s up. Have I tried to poo yet? Nah. I’m just gonna nurse this li’l feeling for a while.
Curious about the tools used? Let’s see what Dr. Google shows us. There are lots and lots of brands of tools, and I’m clueless what he used, but here’s a general idea:
And, of course, luuuuuuuuuuuuube!
If you’re going to have your own internal hemorrhoid ligation, I hope this eased some fears for ya and answered some questions. I’m all set to go in and do this again in another month!
Bye bye hemorrhoids!!!
(Updated 7/6/21)
~ 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
Bloomin' Uterus 