But you don’t look sick…

Thank you.

I appreciate the compliment. Whether it’s makeup, what I wear, or how I speak, I put in a lot of effort in how I present myself every day.

It’s takes a lot of work to put on a smile, especially when my back feels like it’s going to collapse in on itself or my uterus keeps trying to claw its way out of my vag.

And pretending happens anywhere I go. At home, work, with friends and family and at events throughout the year. Endometriosis sucks the life out of me; I have to act like a “normal person” everywhere I go just to have a semi-decent life. It’s exhausting.

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Having an invisible illness means that for the most part people look at me and just assume I have it all together. That because I got that surgery  awhile back and took “took those seven weeks off” for recovery, so I must be cured.

They don’t see the eight pills I take every morning just to function. Yes, eight pills. Then all the of the pain medication that I may take throughout the day. Plus the alternative ways I may choose to treat myself: heating pad, ice pack, ginger tea, various types of oils, turmeric pills… the list goes on.

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To top that off, endo warriors, myself included, have a plethora of bowel and urinary frustrations, so we might go the bathroom more than 20 times a day (or more).

I’m four months out from my surgery and all I’m thinking about is whether I feel better or worse. I’m always tired. My back hurts. I just had an X-ray, Fortunately, nothing scary popped showed up but my doctor wants me to continue my PT sessions for awhile.

I’m also getting an MRI soon to check my nerves. I’m exhausted.

You can see it in my face, when I don’t have on makeup. I’m carrying around a lot of stress, but I’m learning ways to cope. The nausea is ongoing, ever present and never subsides. I hardly eat.

I’m already stressed about my next surgery…

 

 

 

 

Mirena IUD- Insertion

I was not expecting that level of pain.

Having the Mirena inserted was like having a tiny troll with a sword stab my uterus repetitively then take his small fist and grab some uterine lining and pinch it with all his might multiple times.

I cried.

The four 200-mg Advil pills I took just 15 minutes prior to the procedure did nothing to shield the pain.

Imagine one of the worst kind of cramps in the center of your pelvis. It’s warm, dull and achey and it makes you nauseous. Add some sharp pangs and a doctor asking you to relax every 2 seconds –that’s the Mirena insertion.

I thought they’d numb me. They should have. Heck I should have gotten an epidural.

The Mirena is for my adenomyosis. The next option is to remove my uterus altogether. Doctor says that’s the best option if there are no kids in the works.

No doctor- stop trying to make kids happen. It’s not going to happen!

I am #1In10

Resharing my post from instagram: Myshellie23

I am one in 10. Being a woman with endometriosis means I am always in pain. It means I push past the pain and go to work anyways. It means sitting at an office when I really just want to curl up into fetal position. It means smiling when I’m actually gritting my teeth. It means laughing when I want to cry. It means telling my partner, “No” when I really want to say, “Yes.” It’s saying, “I’m fine” when I actually mean, “Take me to the ER again.” It’s people telling me that I’m lazy or that I’m not dedicated. It’s knowing I can’t eat that pizza, that hamburger, that steak or drink that cocktail for fear I’ll have even worse pain. It’s looking like I’m five months pregnant when I can’t even conceive. It’s walking when I want to run. It’s doing the scaled versions of some workouts when I wish I could do the intense ones. It’s pretending I’m OK when I’m at a party/event that I forced myself to go to in the first place. It’s getting surgery after surgery to “fix it” but no relief. It means people will see nothing looks wrong with me and think I’m a liar. It’s caring what they think when I know I shouldn’t. It means finding the strength I didn’t know I had. It means finding new ways to enjoy life I hadn’t thought about. It’s being happy in spite of the pain or the devastating news I’ve received from my doctor. Being a woman with endometriosis is knowing I will get through all of this even when I’ve had days where I wanted to quit. 🎗🎗

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#endometriosis #endo #endometriosisawareness #1In10 #adenomyosis @theendo.co @endowhat @supportendometriosisawareness

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Endo in my endo

I’ve had a rough few days with intense aches, pain and nausea.

My symptoms got so bad this weekend that by Sunday night, I was struggling to walk. I had chills, night sweats and excruciating abdominal pain. I couldn’t breathe it was so bad. My belly button also looked weird – to me. Anxiety kicked into overdrive.

On Monday when my pain didn’t subside even with painkillers (and became worse), I frantically called my doctor. The nurse asked that I go in immediately.

They made me pee in a cup. My two doctors also did a physical examination.

It was then when they decided to share the lab results from the laparoscopic surgery with me. They had done an extensive endometriosis resection and removed endo from my ureters, pelvic walls, rectum, right ovary and underneath my uterus. I had no crazy adhesions from the previous surgery and no endo on my diaphragm or lungs (woot!).

They also told me that they had diagnosed me with adenomyosis on top of the endometriosis, which I’ve learned is not uncommon for women with endo.

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My uterus, according to my doctor, is enlarged (swollen), which is one sign of adenomyosis. It’s kind of like endometriosis inside my uterus (or endo inside my endo…geezus). I have a thick uterus lining, another symptom.

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My belly button was looking great, they said.

They said my new pain that started on Thursday could be a uterine infection or soreness from my operation. Or it could be something as simple as a UTI, which I’ve had before and know the symptoms. I won’t know whether it’s a UTI until tomorrow but as a precaution, they prescribed meds for that and not meds for a uterine infection. It’s been 24 hours and to be honest, I can’t tell whether they are doing anything. We’ll have to wait and see, I suppose.

The doctors disagreed whether inserting an IUD would help alleviate the adeno symptoms. One doctor said that my swollen uterus wouldn’t support the insertion at this time and the other doctor said it could help. I didn’t get it inserted.

A few years ago, I was diagnosed with tuberculosis and was given a 6-month treatment of antibiotics to heal from it. I’m not a doctor (obviously) but the symptoms I present sound like uterine tuberculosis as well.

Let’s just hope it’s not uterine cancer or something insane, right?

Belly button

My body has changed so much after the endometriosis surgery. I know it’s still too early and that in a week it will look entirely different. I’ve never seen it this big before. Even after my recent appendectomy, my abdomen didn’t swell or bruise this bad.

Here’s a before and after:

In the before shot, you can see the appendectomy scar in my belly button. I was hoping that would go away and my belly button would be Hollywood ready. 😂

I don’t think that’s the going to happen. The scarring looks atrocious.

I guess we’ll just have to wait and see.

Please let me know in the comments if you have questions about the surgery.

Pain management at home

The last 36 hours have been excruciating.

I’ve just had a single excision endometriosis resection surgery, where Dr. Guan said he cut away so many implants that were hiding underneath my uterus. He lifted and moved my swollen uterus and cut below it. Thankfully, I did not have any adhesions around my ovaries or on my fallopian tubes.

He and Dr. Bardawell were able to cut away implants near my bowels. Apparently, my uterus is swollen and shaped like a football – enlarged and filled with endometrial-like tissue that is impossible to reach. To get at it, Dr. Guan said the next step would be a total vaginal hysterectomy.

I’m just not there yet.

A few expectations I had about this surgery: It’s meant to be the near end-all of the endo pain and symptoms I’ve been suffering from over the years. It’s meant to alleviate most of my symptoms, including painful intercourse, nausea, excessive bleeding, lower back pain and abdominal pain. It was a single incision, meaning the scarring is straight through my belly button – only one hole.

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Here is the reality I’m facing so far: My stomach now looks like I am eight weeks pregnant. My belly button looks awful with scarring and purple bruises all around it. I feel bloated. I’m nauseated. Peeing is hard. Walking is hard. I haven’t had a bowel movement. I’m irritable and the pain meds are not entirely working. Food tastes awful. I have no appetite. I’m dizzy from all the meds. My clothes, especially my pants, don’t fit. I’m tired.

I’m hoping these symptoms go away quickly. That by the middle of next week, I’m feeling more like myself. I currently want to vomit.

Endo sucks. This surgery sucks.

The only good that has come from this is the outpouring of support from my friends, fiancé and family. The love is great and makes me feel like I can keep pushing on.

I can’t wait until I am back on my feet, working out, eating right and feeling good.

Let me know if you have any questions about this. I am still finding ways to cope with the pain and sadness, so it’s a daily struggle. I know that I will find something that works for me soon.

 

The aftermath so far: painful

So my day surgery turned into an overnight stay at the hospital due to severe pain, the inability to use some of my bodily functions and the nausea.

Dr. Guan and a female fellow surgeon (I can’t remember her name) handled me with precision. My surgery was scheduled for 7:30 a.m., but I didn’t actually make it into the OR until after 8. And I don’t even remember that part because as soon I signed the anesthesia consent form, it was lights out for me❗️

The doctors worked for at least three hours during the Da Vinci single incision endometriosis surgery, cutting away endometriosis implants around my uterus, ovaries and bowels.  My uterus itself was twice the size it should have been, according to Guan.

Apparently, I had quite a bit of endometrial-like tissue inside my uterus that caused the swelling, and they were unable to get it out. They assured us (fiance & sister) it would only cause problems during my period and that I’d no longer experience the horrific pain I experienced every day as a result of my endo.

I remember waking up in the recovery area with my cheerful, sweet (and handsome) nurse Tom, who I eventually nicknamed Tom Cruise.

After several doses of morphine, which did absolutely nothing for me, Tom got approval to use a fentanyl pain injection, another narcotic that did nada. I had experience with both, as I had used them for my first excision surgery and for my appendectomy last year. The pain did not subside. At this point my pain was bouncing around between a 7 and an 8 or between ☹️and a 😫.

Then Tom – God bless him – got me dilaudid (hydromorphone) and sure enough my pain eased up. I started cracking jokes about how I was feeling so little pain, I’d make it to my Olympic weightlifting class in the morning and snatch and deadlift a few hundred pounds here and there.img_2842
But by 5 p.m. shortly after they brought me back to the day surgery area, the pain came back with a vengeance and Tom was no longer my nurse. I couldn’t pee and my anxiety skyrocketed. My nurse gave me an anti-anxiety but no painkillers.

I started to cry. Did she not believe me?

That couldn’t have been it, because they asked me to stay the night to get the pain under control, which I wasn’t originally meant to do. Then came the Toradol, an anti-inflammatory med intended to treat pain. My pain went from 😫 to 😖. Not much relief there and I told her that, but she said that because I had taken an anti-anxiety pill, I couldn’t take a narcotic. 🤷🏽‍♀️

After they admitted me into the hospital, my new nurse JR tried to get approval for something stronger. We tried morphine. Again nothing.

By 7:30 p.m., I was in tears practically screaming in agony. Eventually, JR got approval for several painkillers, including dilaudid, from the fellow surgeon who also said she’d stop by in the morning to check in on me. That was definitely good to hear; I liked her.

I’ve been drinking so much apple juice, ginger ale and water. I don’t understand how I haven’t yet exploded because going to the bathroom is nearly impossible. It’s a task, it hurts and barely any liquid comes out of my body.

“That’s normal,” Nurse JR said. “Your body is still coming off the anesthesia and you had surgery on those delicate areas. Try not to push yourself.”

That’s easy, I thought to myself. Trying to pee is uncomfortable, so I’d rather not do it even if the urge is there.

About an hour ago (it’s about 5:30 a.m.), JR gave me more dilaudid after my pain shot up from a 😏 to a 😩.

He’s coming back in awhile to give me more Toradol and liquid Tylenol. Then the Oxy, which surprisingly and unfortunately does little for me.

Needless to say, working on pain management has been an unfortunate chore, one I haven’t been able to get right.

I asked JR if I’d be able to sleep in my own bed tonight. He said it all depended on how well I managed pain on pills like Oxy. It’s disheartening because I don’t know what to do. Why isn’t my body receptive to these crazy drugs? I wish the morphine would take care of everything.

Hopefully when this is all over, I’ll truly be pain free.

Countdown to painfree

I can’t stop shaking. Even as I type this my hands tremble gently.

Tomorrow is the big day. I’ll be out of surgery by this time tomorrow (hopefully).

I’m sitting here on my lunch break, trying to calm myself. Telling myself over and over that it’s an outpatient procedure, so I shouldn’t be this nervous. It’s a common procedure, a blip on a doctor’s schedule. Next!

This isn’t a brain transplant. I’ll be fine.

Starting at 6 p.m., I need to avoid certain foods, drinks. Nothing too heavy. Stick to toast, apple juice, cranberry juice. NO Orange juice, they tell me. I’m not sure why.

I talked to Danny last night and said that he needed to make sure that under no circumstance is he allowed to give in to my certain incessant future pleas for fast food following the surgery. No cheeseburgers. No pizza. No chocolate cake. No comfort food to ease the pain.

I’m hopeful the anesthesia will make me nauseated enough to ignore any possible cravings I’ll experience. For now, the anxiety I feel is enough to curb my appetite.

I took half an Ativan. Where’s the other half?

It’ll be OK. Tomorrow will come and go and by next week, I’ll be so thankful I chose to undergo this endometriosis excision surgery. All I can do now is be patient, calm and hopeful.

Minimally invasive

In less than 48 hours, I’ll be under the knife with an endometriosis specialist looking inside my abdomen using a tiny camera attached to a robotic arm.

But unlike my 2016 surgery where the doctor made three incisions around my belly button, the team this time around will need to make only a single 1.5 to 2.5-centimeter incision inside my belly button.

“We take belly buttons extremely seriously here,” a woman doctor told me during my pre-op visit Monday.

I already have scarring in my belly button and around my abdomen from a previous excision and appendectomy, so naturally I assumed the doctors on Thursday (the day of my surgery) would re-use the holes. But that wouldn’t be necessary, the doctor told me. More than 90 percent of all the surgeries Dr. Guam performs only necessitates one opening – and it’s through the belly button, meaning any surgery scar can stay inconspicuous.

The thought is mildly comforting.

I still have to undergo the procedure, which according to some estimates can last up to four hours (or more); I have to tolerate the anesthesia, wake up, heal and go about normally using all my bodily functions. Not to mention to pain and the excessive amounts of vaginal bleeding that is sure to occur following the operation. Then there’s that tiny part in there where they don’t want you to lift more than 10 pounds for six weeks.

Goodbye Crossfit. Goodbye Olympic lifting. (At least for six weeks.)

Last year, my endo problems felt like they were getting worse. My poor lifestyle choices, including horrible nutrition and lack of exercise exacerbated the pain. When I began to do crossfit last April, I instantly felt happier and when I coupled that with better food choices, my body thanked me. In more ways than one.

Not only were some of my endo symptoms beginning to feel like they were under control, I started to lose weight, build muscle and get strong.

But right in the middle of that, I had to have an appendectomy and it significantly slowed me down healthwise. I was eventually able to get back on track and lose a total of 20 pounds between April and November, but it wasn’t easy.

I’m afraid this endo surgery, even though it’s meant to do more good than harm, is going to derail me from my overall health goals. Losing weight, getting strong – that felt good. I felt the difference, physically and emotionally, between non-training days and crossfit days.

My endo symptoms – the bloat, the digestive issues, the back pain, headaches – it all felt minor next to the feel-good muscle soreness I got from a tough workout.

Here’s to hoping that recovery from this surgery is swift.

Overwhelming insecurities

Less than a week remains until my surgery and I’m all nerves.

This is the second surgery I’ve had for endometriosis, but it doesn’t lessen the anxiety that has begun to manifest itself in different ways throughout my body.

I’m eating more again. I don’t want to get up. I have racing thoughts. Can’t focus. My body feels weak, fatigue spreading through my once proud and strong arms. Everything is blurry.

I know these symptoms all too well. They dominated my life in 2017. But I persevered. Stuck it out.  

After my last surgery in 2016, I couldn’t walk for a week. I thought –foolishly—that I’d be up and out the door, back to work in two days at the most. The pain that followed that surgery was worse than before. I called the doctor multiple times. Ultrasound, vaginal ultrasound, physical vaginal inspection, another ultrasound, pee in a cup.

“There’s nothing we can do.”

The pain on my left side, where my ovary would be, was unlike any pain I’d ever felt. I asked for my painkillers, but I used them sparingly.

The surgery was supposed to help, but it just intensified what I was already experiencing. I later learned that cauterizing the endo implants only created scar tissue that could created more problems in the body.

That was nearly two years ago.

For my second surgery, I am hoping that he cuts away most – if not all—the endo implants that have taken over my uterus, ovaries and bowels.

I can be hopeful. It helps ease my anxiety.