Rectum Redemption

Posted on June 20, 2014 by erinparker75

Today was a good day: I went to the Chocolate Bar and I had a finger in my bum.

It’s the post everyone has been waiting for….just HOW does rectum play into endometriosis??

Well you’re about to learn it all, my friends. So grab a cup of coffee and settle in, and be thankful it’s me going through this, and not you.

Today I saw Dr. Snyder, the colo-rectal surgeon. After my meeting with Dr. Sutton I wasn’t too fussed. Figured when I meet the rest of the team we would just go in, he’d quickly explain his procedure and what he will do to my colon, and we’d be on our merry way.

My mom comes to get me (I was dog sitting), surprises me with a bottle of rosé (yay!), and we head over to the Med Center.

We’re pulled back and they take my vitals, then we go wait in Dr. Snyder’s office. Dr. Snyder comes in with a very handsome resident. He says that the resident will be inputting all of my information into the system, then we’ll get started.

So we chat for a bit, and I’m forced to tell him all of my embarrassing symptoms… like daily digestion woes, painful intercourse, and stabbing rectal pain. He’s a robot during the entire briefing. Zero emotion or empathy. Rude. Then without ceremony he gets up and says, “I’ll go get Dr. Snyder and we’ll start the exam.”

Blink blink. No no no. He’s mistaken. He leaves the room and I look at my mom. “What kind of exam? I think they have me confused. I’m not here for an exam.” I’m starting to panic. I’m at the COLON RECTAL CLINIC. This will not end well.

Hot Robot comes back in and I say “What do you mean by “exam?” He looks at me like I’m an idiot and says, “Well Dr. Snyder has to look at you and see what he’s dealing with.” And he turns around, waiting for me to follow him, just like it’s a normal Wednesday with people getting fingers jammed up their bums.

Now I turn into a robot. I hand my purse to my mom like I’m about to walk the Green Mile. We lock eyes and are thinking “this is really gonna suck”. I follow Hot Robot in a zombie-like state into the examination room, where he leaves me alone with the foreboding to which my imagination is prone.

I’m sitting in this cold, sterile room by myself, fluorescent lights glaring down, and trying really hard not to cry. I promptly chew off one fingernail and am about to go to town on the next when the nurse comes in and says she’s going to prep me. I look around, but there aren’t any gowns or blankets or other things you typically see when you get down and dirty at the doctor.

She says, “Pull your dress up, pull your underwear down to your knees, and come over here and get on your knees and lean over on the table.”

“What?” On my hands and knees, just so…..exposed?

I don’t think so. I stay in my chair. But she’s looking at me expectantly and pulls out the little stool for my knees, motioning for me to come over.

What choice did I have? I assume the position.

Then Dr. Snyder comes in with Hot Robot and tells me what he’s about to do. He explains everything while I’m in this position. So imagine, if you will, me on my knees, leaning forward on the table and resting on my forearms, ass up in the air, and craning my neck at an awkward angle to be able to see his face. It was demoralizing.

Sort of like this:

photo (1)

I tell him I’m nervous, and he says that if I feel uncomfortable or pain at anytime to say something and they will stop. Right now! I’m uncomfortable right now!

They file behind me ready to get up in there. “We’re just gonna raise the table up a bit….” And there’s a gentle humming as he raises me higher in the air so my bum is face level. I. Am. Mortified.

In goes one finger in the vagina, to feel for endo nodules along my vaginal wall. He asked if it hurt, but it didn’t.

Then goes the finger in the bum. He just slipped that puppy right in there with surprising speed and finesse. This is clearly no amateur around rectums. Surprisingly, no pain there either. Again, he’s feeling for nodules to see how far the endometriosis has spread down my rectal wall.

Then he gets a very scary metal instrument that I’m sure was used as a torture device in the Middle Ages. He sticks that into my bum and blows air into it which showed him if there was any tethering. After that I stop listening. I have no idea what he meant, or what could be tethered to my rectal wall, but I do remember him using that word.

Then he’s done. I think the entire exam took less than 2 minutes, and I experienced zero pain. They leave so I can pull my pants up, and my mom comes in shortly after.

Dr. Snyder, his nurse and Hot Robot all come back in. He tells me he didn’t feel any nodules, which is great news, because it means surgery will not be as long or invasive on his part, and that I’m one of the better candidates he has seen. I’m so relieved to hear this, even if it required having a finger in my bum. It’s the first piece of good news I’ve had in months. He explains how his role in the surgery will be to remove the nodules that have formed on my colon and intestines and worst case scenario, a part of my colon will have to be cut out and the 2 ends fused together.

Risk with this kind of surgery is the colon leaking which can cause a serious infection and would require emergency surgery to repair (gulp) – but those cases are rare and he’s highly doubtful I will have anything to worry about.

Then my mom takes me to The Chocolate Bar for a slice of gluten-free cake. I’d say overall, today was a win.

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Meeting My Urologist

Posted on June 18, 2014 by erinparker75

First on the list is my urologist, Dr. Sutton. His office in the Med Center is warm and full of bears – he’s from Idaho. I guess they’re known for bears?

He comes in to greet us, a bundle of energy and confidence, and starts explaining his part of the surgery.

“When is your surgery again?”

“July 8th.”

(Looking at his calendar) “Oh good, I’ll still be here.”

That’s something you guys checked before you set the date, right??

Anywho, he explains that he will go in and weave these flexible, glowing lights through my ureters all the way up to my kidneys, and it will make my body look like an airport runway at night.

The purpose is to make the ureters really obvious, because they are extremely delicate, and if Dr. Mangal accidentally lasers one during the procedure then that is bad news bears. But that’s his one job. Lights go in, and he heads back to the office, leaving the rest to Mangal.

He then asked me if I had seen the colo-rectal surgeons yet and I said no. “Good”, he said, “Because they will scare you.”

“What?”

“Oh, they’ll tell you how they may have to remove part of your colon and you will have to wear a colostomy bag for a couple weeks, but those are all worst case scenarios. I’m glad you’re seeing me first – just remember not to get freaked out by what they say.”

Too late. Already scared.

10 minutes later, we paid and left. Bada bing, bada boom! These surgeon meet and greets are gonna be a breeze! Finally a girl catches a break…

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Post-operation news

Posted on June 16, 2014 by erinparker75

Dr. Mangal walks into the exam room where my mom and I are sitting and just says, “Oh, Erin…Well, it wasn’t what we thought.”

That is not what you want to hear from your surgeon.

He sits down next to me and draws my reproductive system and then starts showing me where the endo is and what it has done with all this unsupervised time. When he finishes, I can’t even see the organs anymore.

In a nutshell, Stage IV looks like this:

  • Endo on my colon, which is stuck to the bottom part of my uterus (hence the sharp rectal pain that is common in women with endo)
  • Appendix covered with endo and curved like a hockey stick (he will remove this)
  • Endo on my ureters
  • Endo on both ovaries
  • Chocolate cyst on left ovary that is pulling my organs toward it like a black hole
  • Endo on my bladder
  • Endo on my uterus
  • Endo on my bowel/intestines

“Once I got in there and saw how bad it was, I just thought ‘How was she walking around like this?’”

There is such bitter sweetness in hearing that I wasn’t making any of this up, nor was I bipolar (one doctor’s suggestion) nor was it just a severe Vitamin D deficiency. My shit was effed, and I knew it. And Dr. Mangal confirmed. Just in time too, since I was on the verge of a mental breakdown because of this. I do not say that lightly. I’ll get more into the emotional side of endo in future posts, but the thought had crossed my mind that if things didn’t improve I would soon be institutionalized. It was taking that much of a toll.

So, now I have to travel down the worst-case scenario path. Lupron shot therapy for 3 months, continuous birth control and the big surgery scheduled for July 8, or what Dr. Mangal refers to as “the bulldozer”. He said it will be like having a c-section. There will be 2 other surgeons operating on me (urologist, colo-rectal), and the surgery will take 5-6 hours in order to get all the endo, and put my sticky, displaced organs back where they belong. Recovery is 4-6 weeks minimum.

I have a colo-rectal surgeon since my colon is stuck to my uterus. This is the cause of massive amounts of pain for me. Dr. Mangal explained that they will have to “unglue” it, and examine the damage. If it’s really bad, they will cut part of my colon out and fuse the two ends together. Gulp. Risks with that kind of surgery? Leakage. Isn’t that just the most awful word? Leakage. If that happens, it would cause a serious infection and then my death. So we don’t want that.

Am I scared of this surgery? Terrified.

I’m also excited that this could be the key to a brand new life I’ve never experienced. A pain free life!!! That’s an overwhelming amount of freedom, to no longer be a slave to pain.

I asked him if I was a really bad case and if he had operated on women who were worse off than me. If you know anything about Dr. Mangal, then you would laugh at this question. It’s like making sure God’s got everything covered. This is THE endo guy. He has patients from Colorado to Brasil fly in to operate on them.

“Oh you’re not even that bad,” he said, “Even though you’re stage IV, I’d say you’re about a 4 or 5 on that scale.” That was a huge relief. Dr. Mangal has this wonderfully soothing bedside manner, and this humble confidence about him that makes you feel like everything will be okay.

His nurse gives me the names of the 3 additional doctors that I need to see before July 8th and then we’re out of there. The whole appointment with Mangal took probably 15 minutes.

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Emergency room: check

Posted on June 11, 2014 by erinparker75

The day after surgery my mom and I spend 6 hours in the ER because I was afraid I had an infection. It was a very painful day of IVs, CT scans, diagnostic tests, more blood work (naturally) and another shot of Dilaudid. Hey-oh!

I was super bitchy cranky that day. In a hell of a lot of pain and no one seemed to be bothered by this, which added more to my foul mood.

Turns out I was really dehydrated and just didn’t know it. I am a waterrrrrr drinker. I type it that way so you will get my emphasis. My daily beverages consist of 1 cup of coffee and water. No juice, no soda. Sometimes wine. Ok, a lot of times wine. But a lot of water. So when it had been 12 hours and I hadn’t gone to the bathroom, it was only natural to assume that a serious infection had spread from my incisions to my kidneys, causing my entire abdomen to swell and therefore cut off my urethra from my bladder, which would then lead my bladder to swell and explode inside of my body and then I would die.

My sweet, patient mother listened to my fears, gave me one more grace hour to change my mind, then helped me into the car and took me to the ER with nothing but support and kindness on her lips. She sat there in the room and stroked my hair like she used to do when I was a child. It was the only thing that calmed me. Until the Dilaudid, of course.

All that time and testing just turned up one thing: Dehydration. I had been without liquids for so long that it was just taking my body time to catch up. I felt dumb. But then again, it’s better to err on the side of caution when it comes to your body. I’ll just remember for my next surgery to drink copious amounts of liquid afterwards and maybe not be so quick to imagine random organs exploding inside of me.

After 6 hours, they pull the IV out of my aching arm and we come home. 6 more days until my post-op with Dr. Mangal, when I’ll find out what exactly is going on inside this poor body of mine.

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Eliciting Endo Emotions (alliteration fun)

Posted on June 9, 2014 by erinparker75

I had a full on break down a couple of weeks ago. I was in bed at the end of the day, writing in my journal, when I was overcome with a deluge of emotions that I had kept buried since this process got rolling. Fear and anger, mostly. I’m angry about all the years that something was going on and I didn’t know. I’m angry about everything that I have been through, and will go through because of this disease. I’m afraid of my next surgery, I’m afraid to have hope, and I’m afraid I will never get my life back. This is raw, gripping fear that I finally confronted, and once I did I wound up sobbing in bed, by myself. I didn’t bother to stop the tears – I just let them come. Afterwards I felt such release.

Earlier in the day I must have sensed the emotional storm brewing, because I had phoned Melissa for advice. I was overwhelmed. I feel like a shell of a human, looking through the window at a life I once was able to live. I now have been reduced to this exhausted, anxious person who is constantly in pain. I can’t see a way out, and its hard to remember what my life was like before, when I could laugh and travel and dance and do more than one thing every other day and not want to collapse completely into my aching body. Not to mention this really terrifying surgery I have looming in my future.

I worry that I’ll never live a normal life again; my normal life. I won’t be able to take trips around the world, I won’t experience music festivals and wine tastings with my friends, I won’t be able to have a relationship and share my life with someone, and my life will whittle down to the bare minimum while I cling desperately to the shadows of what it used to be. I couldn’t bear the thought. So I called Melissa, and like always, that wise Icelandic princess talked me off the ledge. Melissa has been through more health scares and hospital stays than anyone I know, and she’s the only one I will listen to when I’m panicked, because she knows. Not only does she know, but she carries herself through life with this calm grace that very few people possess.

The main thing she said: SURRENDER. Surrender completely to the endo; don’t fight it. Let it all unfold as it wants to, stay present, and handle what comes each day instead of wasting energy on tomorrow. This is so difficult for me, because I’m always playing the “what if” game. I’m constantly worrying about next month instead of staying present in today.

The second thing she said: THIS IS TEMPORARY. I will not always feel this way. A day will come when the endo is under control and I am healthy and will feel like a normal human person again, instead of this agitated, painful wretch I’ve become.

If words were balm, hers cascaded over my wounds and sealed them shut.

SURRENDER
TEMPORARY

That was exactly what I needed to hear, and I keep saying those words over and over in my head. Daily. They are my mantras.

I don’t know how to say this without sounding cliché, so it will just have to be cliché. I am in awe of the strength and wisdom of my friends and family. No matter how well you think you know someone, you can still reach down to peel back another layer and reveal something so perfectly remarkable you wonder how you never saw it there in the first place. There is so much depth to humanity. I love that the deeper I dive, the more I witness their capacity for love. The surprise should wear off because that’s what I see every time, but it still makes me marvel.

I never asked for help in the past. I chose to do everything alone – as if that made me stronger and more independent. That was so dumb. But who knows, maybe it was a self-worth thing. I didn’t believe I deserved help or support, so I didn’t ask for it. I didn’t get it, either. Important lesson there.

That woman is a distant memory now. I have learned that there is no strength in silent suffering. The moment I need help, support, a kind word, or a hug, I ask for it. And my friends and family immediately prop me up when I can’t stand on my own. They gladly become my foundation when my own crumbles beneath me.

Ask and you shall receive. It’s such a beautiful concept, because asking and receiving fosters deeper trust, love, and cohesion within your tiny village. It brings strength to both the giver and the receiver, and forges an even tighter bond than what was there before. I have become very good at asking. I’d like to think it’s because I learned my lesson well. And you know, since embarking on this journey I can’t recall a single instance where I didn’t get what I asked for. So that’s pretty cool. 🙂

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Lupron Depot – my monthly shot therapy

Posted on June 2, 2014 by erinparker75

When you’re an insomniac, the last thing you want is someone waking you up once the dark veil of Nyx has blotted out your consciousness. But alas, these nurses had an agenda.

I had to drink an entire bottle of water and go to the bathroom before I could be released. Done and done. Then I was given a Lupron shot in my bum (those don’t hurt at all, btw!) and was told I would have one every month until my next surgery. My mind was so foggy during all this activity however, and I don’t remember anything I was told about what would happen next. In the end, I would have chosen the Lupron treatment anyway, but it’s kind of alarming that this was given to me without my consent.

The Lupron Depot shot can be daily or once a month. It’s a common treatment for women with endo and it puts your body in a low estrogen state. NOT early menopause. They are very specific about this verbiage. The shots stop the endo from growing/spreading, and in some cases it may actually shrink the tissue and make it easier to remove during surgery. Okay. Count me in.

But before your body slips into this low estrogen state, you will first experience a surge of estrogen for 1-2 weeks that is very much like having a serious PMS episode. So, for 2 weeks out of the month my hormones are high and crazy and I’m crying to Katy Perry songs because “I’m just so proud of her” (we’ve never met) and then the other 2 weeks I’m coasting along with the emotional resilience of a robot. Nothing bothers me. It’s very tumultuous and tiring.

Now let’s talk about the gas. No, not the flatulence, the GAS they fill your body cavity with in order to poke those laparoscopes around with ease. No one tells you that this is THE worst part of having a laparoscopy. Once the Dilaudid wore off a bit, it felt like a knife was lodged in my diaphragm and any tiny movement, or breathing, or just being vertical, made the knife twist violently under my sternum. It was unbearable. And it made me angry because nothing makes it feel better. I couldn’t lie on my side cause that felt like my ribs were crushing each other. Lying on my stomach was out of the question. Sitting up – forget about it.

The only thing I could do was lie on my back and not move. Literally. I was a statue. I couldn’t sleep at all post-surgery, and my body was pretty agitated coming off of general anesthesia, so I watched around 15 hours of 30 Rock on Netflix because it would keep playing episode after episode without me having to press anything. I put off going to the bathroom until the last possible moment, and the entire process sounded like a Lamaze class because instead of screaming, I was trying to breathe through it.

Later I talked to my aunt who is a nurse anesthetist, and she said the only relief she has found over the years is to lie completely flat on your back with a pillow elevating your hips slightly, and your head slightly lower than your hips. Other than that, you just gotta wait until your body absorbs it, and my body decided to take its sweet ass time. Just another way it can f*ck me over, I suppose, for neglecting it for so long. Fair play, body.

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Surgery Numero Uno

Posted on May 28, 2014 by erinparker75

I had to have an IVP done on my kidneys a week before surgery. This is what I had to drink to clean out my bowels 24 hours before. I do not recommend. They make it flavored to trick you into thinking it will taste good. It does not.

photo 1

And this is what my arms looked like after 2 weeks of blood samples and other tests. Used and abused.

photo 2 photo 3

The day of surgery, we get to the Women’s Hospital and they immediately send me into a private room to change into my super sexy hospital gown. I thought it was a bit too small, but the nurses were really busy with prep so I just dealt with it.

photo

The nurses at the hospital were so sweet. When one came in to draw blood (I don’t know why they couldn’t just use the 23 vials they took last week) she took one look at my arms and gasped. “This is not my doing,” she said. “I would never bruise you like this.” And very gently, she took my blood, and I didn’t slap her. My parents were sitting on the couch in my room with me, and I was bragging to my dad how they always find a vein and it never hurts, and that I like to watch the needle go in because I think it’s cool.

Another nurse came in and put these cool compression tights on my legs and some pretty nifty socks with traction on the bottom so I won’t slip and fall. I kind of felt like I was at a spa. She was so gentle.

When it’s time to wheel me away, I say goodbye to the parents and go to the pre-op room. I sit there for another hour. They give me a couple of magazines to read but since I care not about celebrity gossip, those got tossed aside and I had f*ck all to do. I tried to sleep in between multiple nurses coming over to verify my name, the surgery I was having, what allergies I had, etc. Dr. Mangal came in to say hi and look over my paperwork. Then a nurse came over to put in my IV.

She started with my left hand and it hurt like a MOTHER, and I’m watching my vein blow up like a balloon. I’ve never seen that before. I yell “Take it out! Take it out!” She’s calm though, and says she probably just hit a valve. That sounds safe. Then she tries the vein in my left wrist. Same thing. I’m starting to regret the cockiness I had earlier with my father. She then moves over to my right side, and I tell myself I’m going to punch her if she doesn’t get it this time. Luckily, the 3rd time was the charm and I was good to go. Although I did have a bit of trepidation, taking it as some sort of omen as to how the surgery would go….gulp.

I tell them I’m a little nervous so they give me something they call “a margarita without the calories.” Sold! Then I’m being wheeled into surgery. The operating room is bright and full of people bustling about to get everything ready. I hear Al Green on the speakers and I get excited. Is that weird? I mean, Al Green! Everything will be okay. I start dancing in my bed and I hear someone say “I think she’s feeling the meds.” Fool. I do that whether I’m on drugs or not. Then a sweet nurse says “I’m going to put this mask on your face for a bit to help you breathe.”

Next thing I know, they’re waking me up in recovery. So WEIRD how that works, right? My brain is mush and I can’t keep my eyes open, but my uterus is wrenching my body with wrath born from hell. I sit up and bend over in agony, rocking back and forth and holding my abdomen. A nurse runs over and says “Miss Parker, Miss Parker! Please lie down.” But I do a half cry, half moan and say “I can’t. My cramps. My cramps. I can’t.” I just keep rocking back and forth. I guess she leaves to go call the doctor, because the next thing I remember is her coming back and telling me that he ordered Dilaudid for me.

This moment, the moment I am finally introduced to Dilaudid, I will remember for the rest of my life. Oh sweet blessings of heaven, this drug swam through my veins and I found myself on a cloud of bliss so high I didn’t even have a uterus anymore.

I’m taken into a private room while they grab my parents. I fall back asleep during this time. They wake me up again, and my parents are sitting on the couch to my right. I lift my head and can directly see my mother. As soon as I see her face, I knew it was bad news. I choke out “How was it? Did he get it all?” She just gives me a sad look and says “No sweetheart, it was worse than he thought. You have stage 4 and he couldn’t do anything. You’ll have to have another surgery in 3 months.” I start crying, then fall back asleep 6 seconds later.

 

 

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How Endo Uses Food to Ruin Everything in Life

Posted on May 23, 2014 by erinparker75

Dr. Mangal had explained that the 2 main factors in controlling endo post-op are diet and birth control. Diet, because endo and your bowel are closely linked, and birth control to control the hormones that spike during menses. Since mine was already so bad, he speculated he would put me on continuous birth control so I would only have 4 periods a year. FOUR? Let’s just get rid of it entirely. Blood = bad news. I would not be mad at never buying tampons again. Or “elephant tranquilizers” as my friends like to call them.

The diet part made a lot of sense considering my GI tract was in the habit of giving me the middle finger daily. Here’s how Dr. Mangal explained it:

Your stomach is a lake, your bowel is a snake, and endometriosis is a tree growing by the lake. When the leaves from that tree fall into the lake, the lake gets dirty and the snake gets super agitated, and the snake stays agitated until the lake is clean. Dr. Mangal’s job is to remove the tree and leaves in the lake, but after that the lake is still dirty, and the snake is still agitated. That’s when the gastroenterologist Dr. Mathias comes in, to clean the lake and get the snake calm again through diet and medication. Dr. Mathias will be my primary doctor in controlling this thing after surgery….and probably for the rest of my life.

So in addition to pain and super glued organs, endo is also the cause of my digestive issues: daily nausea, bloating, distention, etc.

I had a little over 2 weeks until surgery. But I had serious issues with just sitting around waiting for it. Some may call it being impatient; I call it being proactive. I started researching what I could do now. Since a diet change was imminent, I figured why not go ahead and start that? Let’s get this show on the road.

I reach out to my future sister in law who has endo, had surgery with Dr. Mangal 8 years ago, and has been on an extremely restrictive diet since. Like, “I might as well kill myself” diet. But I’m serious about getting better, and if I can start anything to get the healing process underway, I’m going to, ya know? I know that the calmer my bowel is for surgery, the easier it will be on everyone.

Me: I want to go ahead and start the endo diet. What do I need to eliminate?
Her: Red meat, gluten, dairy, soy and caffeine. Those are the big 5 that are getting you.
Me: And what about….(gulp)…alcohol? please say no please say no please say no
Her: With the amount you drink, you’re fine.

SIGH OF RELIEF

This does mean saying goodbye to my frothy stouts, thick ales, and ice cold Abita Strawberry during Jazzfest. We had a good run, friends. No – we had a great run.

But in the end, there’s still wine. There’s always wine. And she will gladly carry me through this time.

Giving up coffee? There goes a piece of my soul. And CHEESE?!?! One of the greatest pleasures I take in life is ordering the cheese plate at a restaurant. One of the other greatest pleasures is going to Central Market with Marissa, buying about 5-6 cheese orphans, and having our own wine and cheese night. WHAT WILL I DO?!?!? As a self-ordained foodie, I declare this unreasonable.

I’m gonna be the salad girl. You know, the girl who only orders salad every time you go out to eat. Everyone hates that girl. “Dressing on the side, please.”

However, within 3 days of eating on my new plan, I felt a significant change. Better than I’ve felt in months. My bowel was no longer distended, my nausea and bloating went away, and most importantly, the horrific stabbing pains that made me double over in agony had subsided.

Therefore, my bitchiness eased up about 30%, which is good news for everyone around me. So maybe these doctors know what they’re talking about after all.

 

 

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The God Of Endometriosis

Posted on May 21, 2014 by erinparker75

We leave Dr. Roberson’s office and head to lunch, where I promptly call Dr. Mangal to set up an appointment. I learn that it doesn’t work that way. First, you call to request an appointment. The office will then send you paperwork to fill out, and once you send that back, they will call to tell you whether or not Dr. Mangal will accept you as a patient.

In that moment I realize this process may take much longer than I originally planned. I had figured down time of about 2 months tops, then I’d be back to my normal life. It never crossed my mind that this journey could actually be quite long. I wasn’t ready for that reality check.

I send the paperwork in on Thursday, and by the next Monday his office calls me to make an appointment for Friday. Hooray! Turns out I am sick enough. The nurse informs me that Dr. Mangal does his new patient appointments a little differently. To begin, he sees us all at once, where we will watch a couple of videos and then he will have a Q&A before he begins our individual exams.

On Friday we get there early, and watch restlessly as the clock ticks past one hour, then two hours, then three hours after my scheduled appointment time. I’m uncomfortable, in pain, and pacing the office like a mad woman. I can’t sit still. I’m straddling a fence: one side is the promise of a new life that this man will give me, the other is the wretched thought that nothing will change. I don’t know where to plant my feet.

I get my blood drawn, then I give a urine sample, then one of his nurses does an ultrasound. I see the words “right ovary cyst” on the screen and ask the nurse about it. Even though this is my first ultrasound, I know you don’t want to see those words in sequential order. But she just smiles and says the doctor will go over everything with me during my exam.

We go back into the waiting room and wait some more. I have to use the restroom, which is in the back part of the office, and there I stumble upon Dr. Mangal himself. He looks at me with open warmth and I just blurt out “You’re my doctor!” and grab his hand like he’s saving my life. He immediately grabs my hand back with both of his and introduces himself, apologizes for the wait (was in surgery) and says he will be with us momentarily. He is nothing short of delightful.

When we’re finally called, there’s 6-7 of us crammed into his office, and we watch a couple of videos. Then Dr. Mangal comes in, and he is all compassion and sunshine and I know there is no one else I want operating on me other than him.

He draws the reproductive system on his whiteboard and explains to us what happens in women with endo. It was so much information – and it is such a complicated disease. There was a girl in the room who couldn’t have been more than 12. After a while she just put her head on her mother’s shoulder and closed her eyes. I wanted to do the same thing.

He then explains how endo pain shows up in 3 different phases. The first phase is painful menstrual cramps. The second phase is painful cramps, plus random stabbing intestinal pain. The third phase is painful cramps, stabbing intestinal pain, and a persistent dull ache in your pelvis that never goes away. My heart sank as I heard this, and I instinctively reached for my lower abdomen. I can’t remember a day that it hasn’t ached.

From there we go into our exam rooms. Dr. Mangal comes in and gives me a vaginal and rectal exam. It was…..not pleasant. He could feel the endo at the bottom of my uterus through that physical. So that meant surgery was a go. The only thing he didn’t know was how far it had spread, and he wouldn’t know that until he went in with the laparoscope.

Best case scenario: He makes 4 incisions and goes in with the laparoscope and cuts all the endo tissue out. Then boom – I’m set. Get on a post-op plan to control it and I’m good.

Worst case scenario: He goes in and it’s a tornado (his words) and he maps everything out for another surgery 3 months from now which will require a team of surgeons in order to remove the tissue from all my organs. Obviously this will be very invasive, and has a 4-6 week recovery time frame.

We schedule the laparoscopy for April 22.

 

 

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It’s an Endo Party, and all of my organs are invited

Posted on May 19, 2014 by erinparker75

Endometriosis is a chronic disease. So, this puppy is sticking it out until the end (my death). You can read the scientific definition of it here, or read my quick one below:

Endometrium is what lines the inside of the uterus. Menstruation is when this lining comes out (your period). However in women with endo, the lining says “Eff this, I’m staying up in here.” And that’s exactly what it does. Except it moves around a bit, setting up shop in more comfortable places like a squishy ovary or the bottom part of your uterus that never gets any sun. Once those sons of bitches have established residency, you can’t evict them. So then every time a woman menstruates, the little buggers secrete blood as well, building on top of each other and spreading around like super glue, fusing all of your organs together into one giant blob and causing an unbelievable amount of pain, as well as infertility. You do not want an invitation to this party.

There is no cure, and no one knows what causes it.

This is the first time in 32 years that anyone has mentioned this disease to me. Then I started researching the symptoms. I have all of them, by the way:

  • Painful cramps, with pain that radiates down the leg to mid thigh
  • Painful intercourse
  • Painful bowel movements
  • Chronic pelvic pain
  • Rectal pain
  • Stabbing pain in the intestines
  • Chronic fatigue
  • Bloating
  • Nausea
  • Alternating constipation and diarrhea
  • Anxiety
  • Depression
  • Digestion problems
  • Insomnia

As long as I can remember, I’ve always had these issues, so for me they were “normal” and didn’t need mentioning. I know it’s sad, but it just never occurred to me that I should feel any other way.

Finally equipped with a possible diagnosis to explore, Dr. Roberson puts me on birth control and 50mg of progesterone, hoping the extra hormones will eliminate my pain. All of our fingers are crossed.

4 weeks later I’m back in her office, with no change in symptoms. It was time to make an appointment with Dr. Mangal, the god of endometriosis.

Posted in Endometriosis | Tagged , , , , , , , , , , , | 2 Comments