Her Story

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…

 

 

 

 

Endometriosis is a full-body disease

In the months since my surgery, I’ve been “diagnosed” with two other chronic ailments.

Adenomyosis, which I discussed in a previous post, and interstitial cystitis, a painful bladder condition that also increases my need to go number one.

I use the quotes on diagnosed because both of these condition, much like endo, require some work to actually (officially) make a proper diagnosis. To diagnose adenomyosis, I’d need to have a doctor look at my uterus outside my body. Yeah, I’d have to get a hysterectomy. For IC, a different doctor has to perform a cystoscopy to view the inside lining of my bladder. (I had a cystoscopy last week but I have not had the diagnosis or results of the procedure revealed to me).

Research shows that IC, as well as a multitude of other conditions, are closely related to endo in that women who suffer from endo tend to also need treatment for these conditions. My endo surgeon removed a lot of endo from one of my ureters – a tube that carries urine from the kidneys to the bladder). Could this be why I am having issues with frequent urinary tract infections, pain in my bladder and the constant need to go pee?

A number of foods trigger my endo symptoms, as well as my IC symptoms and I have been trying to be more conscientious of what those are. For example, I know that drinking large amounts of coffee can cause pain in my bladder. Same goes for spicy foods and alcohol. All of these foods, plus wheat, dairy and red meat make me feel sick and cause my endo to just explode. It’s quite sad. really.

I regret taking for granted those days I could eat whatever all day long and not worry about bloat, nausea and bouts of pain for the next several days.

Recently, I began having an awful pain in my pelvis. In my uterus. I know it’s my uterus because I remember the horrific pain that was the Mirena insertion. The pain is in that spot. So I know, it’s the Mirena.

Since I started the Mirena, I’ve noticed a 180-change in my mood. I’m more anxious, nervous and foggy. I’ve gained weight, in spite of me meal prepping my breakfast, lunch and dinners for seven days out and in spite of me working out three to four times a week. The only thing that has changed in a month or so is the Mirena insertion. The Mirena was meant to help alleviate my adeno symptoms, which I feel it has failed to do. The side effects are not worth any relief I might have felt down the road.

On Friday, I have an emergency appointment with my Nook surgeon and I’m going to ask him to remove it. It’s the only thing I can think to do. Then I guess, I’ll go back on my regularly scheduled Nuva Ring. I never huge had issues with that.

Three months post excision

It’s been three months since my excision surgery. (I feel like I’m talking to a priest in a confessional here a la “it’s been two months since my last confession…” etc.)

I guess the question I keep asking myself is, do I feel better now than before my surgery? Have I found any relief?

That’s a tough question. Since my excision surgery in February, I know a million times more information about endometriosis than I did right before I had the surgery. Why? Because I’m obsessive (thanks to me being a high-functioning anxiety-ridden reporter with a fear of letting go of my perfectionist tendencies), so most of the time I spent in bed following the surgery, I read. I read other women’s stories. Stories about how much their lives sucked and stories about how horrified they were to learn that they’d be struggling with this debilitating disease for the foreseeable future. I also read a lot of great advice from other women who had surgeries like mine. I explored Nancy’s Nook on Facebook, where if you haven’t checked it out, I implore you to do so. Nancy has a plethora of information and provides it to anyone who is interested in educating themselves about endo and how it can affect one’s life.

Nancy has the most up-to-date information on endo that I have found online. Every now and then I search various endo topics on Google (or Bing) and find old, archaic definitions of the disease. It’s no wonder we can’t get anyone to listen to us. No doctor agrees on what it is, how it spreads, why it spreads and how to help patients achieve the highest and best degree of relief from it.

Endo sisters on Facebook groups, I found, know far more than their own gynecologists. It’s depressing when you have to tell your gyno that removing your uterus will not “cure” your endo. It won’t. Stop asking us to do it.

Yes, it sucks that there isn’t a cure. It sucks that I still have to see my doctor several times over the course of the year (several times during the past two months alone). It sucks that I have been to the ER for endo-related issues about three times in less than six months. It sucks. I’m sorry, but there is not a more eloquent way to say this.

Being a woman with endometriosis, isn’t simply an inconvenience. It doesn’t just affect one area of your life. It’s not like a period, where you have it for five to seven days out of the month and then forget about it when it’s over. It’s not a mildly annoying pain in your back or head either.

A full-blown “endo flare” can leave me on my knees, crying. It can completely debilitate me and take away any ounce of energy I remotely thought I had. During a flare, my back burns, an excruciating pain in my pelvis causes me to hobble around like a penguin and my abdomen can appear as though I’m about to give birth.

And that irony is not lost on me. A large number of women with endo have trouble conceiving, so there goes any shot at having my own baby.

If it sounds like I’m upset about this, well then maybe I’m not making myself clear. I’m not upset about this. I’m livid.

One in 10 women have this unpreventable disease (is it preventable? I don’t know. Who knows? Do you know? Does your gyno know? Tell them to call me). One in 10 women have endometriosis. That’s millions of women. ALL. OVER. THE. WORLD.  And yet, many women everywhere are still getting zero relief from the prescribed ways known to treat endo.

So am I feeling better? I have been lying in bed for the past four hours after an 8-hour shift, where I struggled to work due to the severe pain in my pelvis and lower back. Just like many women across the country, I suffer with the embarrassment, the shame and side effects this paralyzing disease leaves in its wake.

So after two surgeries to help with this endo, I don’t really know what to say to those who ask me about whether I’m “feeling better.” All I can say is what all endo sisters,who struggle with excessive pain everyday (my 6 is your 10 babe), tell each other – I hope you have a relatively pain-free day. That’s all I can hope for at this point.

Two months post op

For about seven weeks all I could think about was the pain.

My abdomen had swelled to the size of a watermelon. I had to pee every five minutes. I couldn’t stand for more than three hours every day. I could FEEL my uterus inside my body, burning and twisting, trying to claw its way out of my vaginal canal.

My womb was larger than average. It was swollen, my doctor had said, adding that it was sort of like a football-shaped balloon.

Maybe if I associated my abnormal uterus with an everyday, pretty mundane object like a football, an object that many people can visualize or relate to, maybe I’d be able to relax.

I mean at least my uterus didn’t look like some obscure relic from the 18th century that I had never heard of.

My uterus looked like a big football. I’m OK. Footballs are normal. My uterus is normal.

But my uterus is NOT normal.

Because buried inside its tissue are blisters. Painful ones.

Adenomyosis was a secondary diagnosis to my endometriosis, an illness I will carry with me for the rest of the foreseeable future.

Endo is what causes most of my pain. The hottest heating pad burns my back, but barely touch my sore lower back muscles.

I thought that by two months post op, I’d notice a difference in the pain. I mean, I didn’t believe I’d be a completely different person but I thought I’d find some relief. Instead, I’m noticing new pain or returning pain that diminished after a previous surgery.

Intercourse hurts even more now. Bowel movements are hell and my lower back keeps a steady rhythm of burning and ache.

Is it too soon to tell if there is a difference between post op and pre op?

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?

Operation Pets Alive

Since the endometriosis resection surgery last week, I find myself having a lot of free time. Especially because I took time off from work at my doctor’s request to recover.

He said at the minimum, I should be resting for three weeks. If I push myself, I can risk getting a hernia, tearing tissue, ripping my belly button open or worse. That leaves me with little to do in the way of actual work.

I decided to foster a dog from a kill-shelter. Operations Pets Alive, a rescue group in Montgomery County, had selected several dogs from the Conroe and Montgomery County shelters and needed fosters badly. The dogs would be kept with the foster for two weeks and then shipped up north to a no-kill shelter where they can be adopted.

I immediately applied and found a tiny, cute Corgi mix called Snuggles. She is adorable and has been keeping me company, sleeping next to me while I type or watch Netflix.

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We found out she has a cold and reached out to the rescue. We then took her to the vet to make sure she is OK and they gave us antibiotics, so we’ll have to see how it goes. we’re hoping it’s something treatable like kennel cough and not something deadly like distemper.

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It’s only been a couple of days but I am in love. I know I can’t keep her though. The goal is to successfully foster her to get her ready for a new family who will cherish her. That makes me feel good.

 

 

 

Taking it easy?

I haven’t exactly been sleeping.

You’d think that with the amount of horse tranquilizer I’m on, I’d be comatose. Quite the opposite.  Perhaps the doctors prescribed me something else because I’m bouncing off the walls here.

I tried being stingy with my pain pills for a couple of days just to see what would happen. The result was a bit harsh. I was achy, and my belly button felt like exploding. I also felt a whole lot of pangs in my abdomen I hadn’t noticed before. Deep, dull pain in my right side that throbbed ever slightly – just enough that if you thought about something else for a second, you wouldn’t have known it was there. But much of the pain just became more prominent and like a more focused exponential gnawing inside my uterus.

The pain at my incision, where doctors cut a roughly 2 cm hole through my belly button is a rapid, steady fiery pulse. Brup brup brup brup.

The incision itself is starting to look better. The glue that’s holding the belly button in place has proven itself, even in spite of the bloat and gas that could have pushed my intestines straight through the tiny opening doctors used to pull out my endometriosis.

These are the things I think about when I’m shuffling about.

But the belly button pain is persistent.

I ignore it mostly and do the dishes, which involves bending over, unloading the dishwasher and putting everything away. Spoon, fork, knife, mug with a fading football logo, plastic cup from last year’s renfaire, last remaining champagne glass from a set of four…

Then I reload the dishwasher, jammed packed with crummy, sticky plates and silverware. Tupperware galore. I wipe down the counters with 409.

My back starts to throb.

I finish and turn on the dishwasher. It’s the third time I’ve practiced the ritual this week. I’m a pro.

Next I move toward the laundry area and start loading the washer. It’s a small load because I’ve already washed and dried all the clothes in the house, some of it twice.

I do a walk-through of the tiny 500-square foot apartment.

This book doesn’t belong on the coffee table, I think and move it to the shelf. An Xbox controller is off the charger. I put it back. My backpack is on the floor, I lean over and pick it and set it in a basket. I do tiny tasks like this about a dozen times a day this week.

Thursday is the worst.

I decide to drive. With the dogs. To the vet.

A 45-minute wait later, where I spent the majority of the time outside standing with two inpatient dogs, my abdomen is on fire. My back is goo and my legs swell. I need to sit down and go to sleep.

Needless to say, today I will spend my time in bed watching old episodes of the original Law and Order. No More Driving.

Come at me Lennie Briscoe.

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Feeling better

Nausea subsided for a bit yesterday, so that I could eat one of my fiance’s awesome homemade sliders during the Superbowl.

After the endometriosis excision surgery, I wasn’t able to truly eat and successfully keep anything down. So since Friday, I had been nibbling here and there. Crackers, chocolate pudding, beans, chicken broth…

But Sunday, I downed a slider, a handful of French fries and half a pickle mozzarella stick. Yum.

My belly also looks slightly less bloated. It still feels tender and if I let up on the vicodin, excruciating pain follows. Yet, overall it looks like some of the inflammation has subsided. I’ve been drinking a lot of water and taking the ibuprofen round-the-clock at scheduled/ prescribed doses.

(It also helps that I was able to finally have a bowel movement. 💩💩✨💫👌🏽)

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I stood for a couple of hours today, much longer than the past two days. I mean I’m already walking but I’ve been taking breaks by lying back down. Today I stood, then sat upright for a few hours while my best friend dyed my hair pink.

It’s weird because I feel like I should be up and about running circles and cleaning/cooking, working but then when I get exhausted or start clutching my side do I remember that a doctor recently cut a hole in my belly button to scrape off endometrium from the backside of my uterus. OH YEAH! IT HURTS!

The morning following the surgery, the doctor also came in and was like:

By the way, we tore your cervix while we were in there. Just in case you reach into your vagina and find the stitches and you’re bleeding. It’s not a big deal.

I haven’t decided how I should feel about that yet.