Part 2: my journey -road to hysterectomy

After my surgery, I was optimistic for the first time in a long time. If my doctor has just removed all of the endometriosis cells he could find, I’d be good, right?

Well, it is true that removal of endometriosis through excision is the best way to combat that disease, but there’s always the chance of missing something, and the next five years were a steady climb up the pain ladder.

I had relief for a while–relief meaning LESS pain, not none–but it wasn’t great. My first period after surgery was one of the most painful things I’d ever felt, EVER.

In many ways, life just sort of went back to normal. I still had painful periods, and the pain lasted around 3 days or so, but within a few months, I started to also have painful ovulation. Suddenly, I was having pain two separate times a month and it was lasting a little longer each time. Now every other week, I was hurting. Sometimes it wasn’t awful, but other times, I couldn’t leave my bed.

My doctor and I decided on pain management since I’d responded well to the heavy meds I’d used since surgery. I am a responsible patient, and I follow all of the rules, so I was able to keep access to my heavy pain killers which I use judiciously.

For another 3 years I continued in that way. But as each year passed, I noticed (and so did my husband) that the pain seemed to be getting worse.

What was once 3 bad days a month had become 4 bad days twice a month. And now it was more like 6 days twice a month. And then it was like two full weeks every month.

These painful days had escalated.

I regularly ended up on the floor of my empty classroom, crying on the cold tile when my students were in electives. More than once I was wheeled away to the nurse’s office where I laid on a cot next to a sneezing seventh grader and tried to keep my crying quiet. Other days, I couldn’t get out of bed at all. The pain travels up and down my legs and back, so walking is hard. Times when I did decide to walk, I’d sometimes get so lightheaded that the 30 steps to the kitchen ended with me sitting on the floor, white as a sheet. I passed out dozens of times at home and at work because my body just couldn’t take the pain. I’d fall to my hands and knees on my way to the bathroom.

And still, I was stagnant.

Partially because this had somehow become a twisted version of NORMALCY, and in part out of pride.

See, when you have endometriosis, everyone and their dog thinks they have the right answer for you. Friends, acquaintances, and strangers would tell me how I should OBVIOUSLY have a hysterectomy already! It worked for their aunt! Their cousin had bad periods but ablation worked for her! Their grandma just had a couple of kids and poof! No more pain!

But I’m a researcher. I study.

I know that HYSTERECTOMY DOES NOT CURE ENDOMETRIOSIS. That’s not a thing.

Think about it. Endo is when these rogue cells are growing all over your insides! On intestines/abdominal wall/bladder/appendix. THESE CELLS AREN’T IN YOUR UTERUS. Removing the uterus, while removing the period, does NOT stop the pain for such a large percentage of women.

And in my case, all of the visible endo had already been removed. So either some was missed, or new spots had grown, or… endo wasn’t my only problem.

Turns out, as my doctor had suspected for years, I had a high likelihood of a sister disease: Adenomyosis. Adeno is when cells (a lot like endometriosis cells) grow in the walls of your uterus itself. That combined with the way my ovaries are being trapped by the web-like adhesions to limit their mobility means that for ME, my uterus and ovaries ARE a big part of the problem.

So they’ve got to go.

I supposed I’m writing this to document that my decision was NOT arrived at lightly. Hysterectomy is NOT an obvious or easy choice. It is NOT a sure thing. It is NOT something I “should have done years ago.”

This is my journey, and I’m hopeful that this decision will reduce my pain and give me back some of my life. Whether it’s 20% or 60% or 100% improved, it’s worth it to try and get back some of who I am and who I want to be.

Missed part 1 of my journey? Click here.

 

pain

But who can remember pain, once it’s over? All that remains of it is a shadow, not in the mind even, in the flesh. Pain marks you, but too deep to see. Out of sight, out of mind.
-Margaret Atwood, The Handmaid’s Tale

A lovely couple of ladies I know run an interactive art collective, and one of the prompts is this Maraget Atwood quote. 

It resonated with me because I think about pain a lot. 

I’ve never thought of myself as a strong person. In fact, I usually think of myself as pretty weak. But this week, as I’ve spent time at the hospital and with my doctor for pre-op stuff, I’ve been called strong more than once. 

In my head, maybe, strength has always meant not feeling pain. But really, that doesn’t make sense. Strength must be about feeling pain, and also about living with it. Strength might even be about not suffering alone or not wishing it away while doing nothing. 

Daron has held me while I’ve screamed in pain. He’s watched tears pour down my face and he’s heard me beg for everything to just go away. He’s been beside me when I’m–for all intents and purposes–helpless. 

But that doesn’t mean pain makes me weak. 

I’ve survived 20 years of pain. 

In the moments, hours, and days between  surges of pain, I’ve thought about how the effects of pain linger like bruises. Even when the pain is gone, it’s still left a smoking, cauterized space behind. 
When the fire goes out, there is still ash and char–there is still smoke and heat. 

The flame or blow or wound or fall isn’t the only thing that hurts.

The hollow that follows aches too. Sometimes worse. Sometimes for longer. 

The effect my pain has had on me will live beneath my skin for a long time, like a handprint left once the grip has gone slack. 

But it will not create weakness in me. It will, as it always has, give me strength. 

Kelsey’s uterus’s going away party 

I knew weeks and weeks ago that if want to have a little party before going under the knife. 

I was sure I’d want an opportunity to get together with a small number of very dear friends (mostly people who had seen me at my worst) and celebrate my approaching freedom. 

I wanted to be silly and make jokes and be irreverent in the face of a big, scary operation. That sort of thing helps me feel 1) in control 2) less scared. 

My friend, Jessica, let me have it at her house (cause my house is quickly becoming recovery central), and we kept it simple but we had SO much fun. 

  • Uterus piñata! I found a heart shaped Mylar balloon and Jessica helped me mix the flour and water to cover it with paper mache. You better believe I beat the CRAP Out of that thing. (I packed it full of little pouches of jelly beans as a small pert favor for my friends to say “thanks for BEAN here!”

  • Snacks! I wanted to make funny signs for all the snacks–some were funnier than others. But these helped set the tone for the party. It helped establish the event as a place to talk some serious sh*t about my mean old uterus. (“I wanna PUNCH my uterus in the face / FUN*fetti cupcakes – *about 300% more fun than my period / veg-at-jays / chips and hot [FLASH] sauce.)

  • Pin the eviction notice on the uterus: I used some post its to make little eviction notes so that my friends could write down some of those reasons this is the right choice to make. It can be hard to remember when you’re facing a big operation. It was so funny to read all the comments after about how RUDE my uterus is, and how much she deserves to GET OUT. 

  • I had a spare pillow form laying around, so I went to the craft store and bought some colored felt, iron on bonder, and a clearance white t-shirt. I created the little felt shapes, bonded them togerher and stuck them to the shirt, stuffed the pillow in and bonded the edges closed. Super cheap little recovery pillow! I even had enough felt leftover to make a pocket on the back. (Perfect to hold an ice pack, or in the case of the party–perfect for holding sweet notes from friends that I’ll read in my recovery room. ❤️

  • The “BYE STUPID” sign Jessica made for me was the icing on the HILARIOUS cake. She “gets” me. I’m so grateful for my sweet friend–I can’t think of a day we’ve spent together that we didn’t lose half of our time doubled over in laughter. 

The real reason I wanted this party was because I wanted to have some time with my women. Lady friends are such a gift. Girlfriends make moments like this so much easier to tackle. At the end of the party, we raised our cups and toasted to her departure. It felt so good to say, “Bye, Felicia!” and know that I’m surrounded by love. 

one week from now

One week from now, I’ll be in surgery.

A doctor will be making some little cuts and using his fancy robot video game thing to remove some bits of Me.

My emotions have been all over the place for the past many weeks. Some days, I just cry to myself for 3o seconds at a time before wiping them away and going back to binge watching OITNB or Gilmore Girls. Other days, I’m indignant and defiant and SO ready to get this DEMON organ out of me–this organ that’s caused me so much pain.

When I’m around friends who have seen the worst days, it’s harder not to cry. I’m one of those people who always gets choked up when someone loves on me. Always have been. I’m constantly one hug away from being misty-eyed.

I’m a logical person. I know that my womanness isn’t wrapped up in my body parts. I know that being a woman really and truly, is NOT just about biology. I know that because of my love for my Trans friends, ladies who embody the Female spirit no matter what their chromosomes say. I know that because of friends who’ve had mastectomies after breast cancer. I know that because of friends who’ve lost children, or never had them at all.

But I also know that because of how I feel about this experience.

I admit it. I have wept at the idea of losing the body parts that society says are “what makes me a woman” through this surgery. I have. But I’ve also felt very connected to the non-physical part of my femininity over the past few days too. Which has made me think a lot about what being a woman really is.

Being a woman is about being confident and self-assured and sometimes insecure.

Being a woman is about being strong in a culture that wasn’t necessarily designed to build up your identity.

Being a woman is wearing the clothes you want because you want to.

Being a woman is being a creator… of music or words or babies or cupcakes or bookshelves or good conversation or earrings or guitars or relationships or napkin origami or silence.

Being a woman is being told who you are and what you’re supposed to be by other people all the time and still having the fortitude to define yourself (and redefine yourself again and again).

Being a woman is loving who you are, exactly as you are, even when you’re a little bit weird/rude/annoying/silly/perfect.

Being a woman is about liking what you like and not apologizing for it.

Being a woman is about being open and transparent if you want and private and isolated if you want.

Being a woman is about knowing yourself and getting to know yourself at the same time.

It’s funny. This experience has shown me that being a woman is simply about being a woman. There are no  rules. No criteria.

I keep telling myself over and over that even when women lose their ovaries or breasts or hair or WHATEVER physical component of a person society says are solely for girls, they’re still whole.

Somehow, human beings are always more than the sum of their parts. It’s a miracle, really, that people can lose things and still be complete.

I am scared.

But not about losing my womanhood.

There isn’t a surgery in the world that can take that.

ciyaudluyaakjel

bye, felicia

On July 1st, I’ll be having a kinda major surgery: a laparoscopic hysterectomy and bilateral salpingo-oophorectomy.
 
Okay. Typing that was the hard part.
 
Most of you know that I’ve lived with a debilitating medical condition which has become increasingly difficult to live with–endometriosis. You may not know that most of my pain actually comes from a sister-condition called adenomyosis. These conditions mean that my body has cell growth in places it shouldn’t (endo, all throughout the abdominal cavity; adeno, within the musculature of the uterine walls).
 
I’m sure this sounds boring. I’m not getting this out the way I’d hoped.
 
I’d wanted to write something funny and irreverent about kicking my wicked reproductive organs to the curb, but it’s a complicated thing.
 
I’m scared.
 
I work with one of the world’s best endo doctors, which is why I have finally decided to take this chance. Even though my pain is linked to my periods, hysterectomy does NOT cure endo. Most women who have hysterectomies to cure endo are crushed when their pain comes back. The only reason this is a good option for me and my body is because of the presence of that sister-condition, adeno. It means that the removal of *my* uterus might actually help.
 
So on July 1st, it’s coming out.
 
Even though it’s laparoscopic, this is not a minor thing. I’ll be in the hospital overnight, and recovery is projected to take anywhere from 4 to 8 weeks. (after the first 2-3 weeks, fatigue is the hardest part to beat.)
 
I am a person who deals with life through connection with other people. I recognize that it might seem weird that I’m posting about this online, but hey–that’s me. That’s what I need in order to be okay with all of the things I’ve got in my head.
 
I’m posting about this because I need to be able to share this information with my friends and family. And I want to be able to blog about my feelings and my experiences and know that someone else might be comforted some day to read that I lived through the same pain they’re dealing with.
 
Last little bits of info:
 
1. Surgery is expensive. My doctor is brilliant, but insurance companies don’t understand our disease. So when my doctor does a 7 hour surgery on somebody, they try to pay him for a 90-minute appendectomy. In short, he doesn’t take insurance. I hope to file for out-of-network benefits, but that’s still a lot of money. So, to help offset that cost, I’m having a virtual garage sale. I’ll be selling lots of cute planner stuff I don’t need. Some books. Some bags. Please join my event and share it and help out if you can. https://www.facebook.com/events/1189983017700160/
 
2. I’m blogging about my thoughts and feelings on my old wordpress blog. You can keep up to speed there: kelsnotchels.wordpress.com
 
3. I’ve had the BEST time being a Jamberry consultant for the past year. I’ve made some great friends and great cash selling nail stickers that I LOVE. But priorities change. So, I’m hosting my last Jamberry party too. If you’d like to place an order, you can by visiting kelsnotchels.jamberry.com. I’ll be selling my personal back stock in the garage sale link above too.
 
Your thoughts and prayers mean the most though, so please keep those coming.
 
I’ve recently named my uterus “Felicia.” And now it’s time to say BYE.
 

Part 1: my journey – to and through endometriosis

For almost twenty years, I have lived with pain.

As a teen, that pain came each month, and lasted two or three days. I would have a hard time getting out of bed, or I’d be unable to go out with friends, or I’d pass out in front of Nordstrom at the mall and my mom would go buy me a peanut butter pretzel to help with my “blood sugar”.

I didn’t know it wasn’t normal. I told my doctor about it, and he routinely made me feel many shades of stupid. He’d tell me–at fifteen years old–that once I grew up and got pregnant, all that pain would go away. Even at sixteen, I told him I didn’t foresee motherhood. At one point, I even asked him if hysterectomy was possible.

He told me it wasn’t… not just because I was “too young” but because I’d change my mind. I was too young to know what I’d want in the future.

Of course there was a possibility he’d be right.

Of course, as it turns out, he wasn’t.

That was the first doctor who told me it was “all in my head”, “it wasn’t real”, and “stop exaggerating.”

But he wasn’t the last.

I was young, and I didn’t know what was or wasn’t okay in regards to how a doctor interacts with a patient. I didn’t realize at the time that I should have been standing up for myself more fervently. It was over a decade–at least–before anyone mentioned the word “endometriosis” to me.

I can’t even be totally sure how I put the pieces together in the end, but I know it wasn’t because a doctor helped me do it. I’m sure it came about from some combination of searching Dr. Internet, ruling out imminent death, and giving myself a diagnosis. I started to look for doctors who specialize in the condition feeling sure I’d fly myself across the world to see one, if that’s what it took.

Even then, when my condition created only about 3-5 bad days each month, I felt like my life was being sacrificed to a brutal deity and was ready to demand the care I deserved.

I cried when I discovered a world-renowned endo specialist in Texas–four minutes from my house.

When I met with him for the first time, my walls were sky high.

I entered with a chip on my shoulder and bile in my mouth. I was ready to defend myself against accusations of lying for pain meds and time off work.

He just said, “I believe you.”

I cried some more

I said, “I want it all taken out. All of it! I don’t want kids, and I want my life back.”

He said, “If that’s what you want, fine. But a hysterectomy does not cure endo. If your pain is caused by this disease, and I take your uterus, don’t expect it to make you better.”

I was confused. Uhhh, my pain was about my period. No uterus, no period, no pain.

I was so wrong. He taught me a lot that day, and then my little research train brain took off on its own and I began to seriously study the disease.

I learned that endo is when cells similar to those in my uterine lining grow in places outside my uterus. I learned that if I had endo, it wasn’t in my uterus–that’s the whole problem. It might be on my ovaries, on my abdominal wall, on my intestines, behind my bladder, or any number of other places inside my body.

Taking out my uterus would stop my period, and it might stop some pain, but it wouldn’t necessarily stop pain caused by endometriosis. ‘Cause that’s not where it lives.

We started going through tests, brainstorming options, developing a plan, and shortly after, we decided to do a laparoscopic procedure which would 1) confirm the presence of the disease (which does not appear on scans) and 2) remove the endometriosis cells from any place he was able to find it.

My surgery was scheduled for November. I was frightened, but optimistic. He was going to remove this disease.

I was going to be cured.

If only it had been that easy.

 

To read part 2 of my journey, click here.