GUEST POST – Living with Endometriosis

Introducing our Guest Blogger

I met Jannie (Boulanger) Hanna and her mom, Cindy, while I worked as the Human Resources Representative at N.E.W. Plastics Corp. in Luxemburg, Wisconsin from 2013 to 2015.

Jannie graduated from the University of Wisconsin-Green Bay in December 2018, her major being Elementary Education and Human Development, and a minor in ESL (English as a Second Language).

Before starting her teaching career, she worked at a daycare.  So she has always been surrounded by children.

Jannie married Tyler in 2017; as any young married couple, they want to have children.

However, Jannie has been diagnosed with a very painful, potentially life-altering disease.  One that is just now coming out into the open, because women are FINALLY talking about it.

Yes, it is still considered a ‘taboo’ subject in our world today, because it has to do with, AHEM, “down there”, and all the names associated with it.

Our conversation started with a message from Jannie with the question,

“How do you cope with something that literally has no cure?”

So here is Jannie’s story.

If you would like to share your story, whatever it may be, let’s talk.

Sending love and hugs, ~Erika~


What’s endometriosis and why haven’t I heard about it?

Well you see it seems to be a “taboo” topic because you know, it’s a women’s issue and it relates to periods.

Nobody wants to talk about that stuff. Women are taught to keep that stuff hush hush so why talk about endometriosis.

Endometriosis is where endometrial cells from the endometrium decide that it’d be fun to attach themselves to other areas in your body. Generally they’ll stay within the pelvic area, but they can land themselves on the intestines or in the colon.

They sure know how to explore don’t they?

They do lots more than just exploring!

They feel like they have a nice hiking stick with them while exploring so you know they’re there. What you don’t know though is how far they’ve explored without having a surgery (laparoscopy) performed by an OBGYN.

The surgeon can then either excise these adhesions or do an ablation.

Excision is where the surgeon cuts the cells out.

Ablation is where they burn the cells at the surface level.

I’m told you want to make sure you find a surgeon who will to the excision as it’s a longer term solution.

What I haven’t told you about endometriosis is that you will always have it. You may become symptom free, but symptoms can reappear requiring you to seek treatment …again. It’ll be a lifelong battle you’ll face.

Now that you know the basics of it, I’ll share my story with you.

My Endometriosis Story

I’m newly married (June 2017) and am young (25).

Perfect time to start a family or so I thought.

Well I knew sex may hurt the first time or so and it’s possible that it was just because we were new at this whole thing, so I didn’t think anything of it.

I always had painful periods, but nothing that a rice bag couldn’t manage. Just a part of being a woman so I never thought anything more of it.

Fast forward to June where I had pain during my period as well as after it was over. My pain didn’t stop.

I couldn’t wear jeans and even had issues with pain from the band of my undies.

No, I wasn’t gaining weight so that wasn’t it. I thought, well maybe it’s just a weird cycle so I waited it out to the next cycle. Same thing. Okay, I guess it was time to phone the good ole OBGYN office to make an appointment.

They asked lots of questions, did lots of tests and even scheduled me for a transvaginal ultrasound to check for any cysts or abnormalities. Low and behold guess what? Nothing was found, everything looked normal.

The exam hurt and so did the ultrasound. Well, the Dr. told me it could be just my body giving me grief because sometimes our bodies do that or it could be endometriosis.

Here’s the kicker, of course we women are complicated. The only way to know for sure is surgery.

I was given the option to either wait it out or do the surgery. Wanting to save surgery as a last resort since the surgery could also find nothing, I decided to wait it out. That was on a friday. Over the course of the weekend I barely slept due to the pain. It was time to call for the surgery option. I could not continue like this.

Leading up to surgery

I was nervous and hope I made the right decision.

What if they found nothing? Would I be looked at as a fool that makes up pain?

I found peace in knowing that even if the surgery found nothing that I’d at least be able to rule endometriosis out as a cause.

Surgery and Recovery

My mom and husband were with me for surgery and were supportive.

They kept the rest of my family and friends in the loop on my surgery status and then shared out the result of the surgery.

Spoiler alert-endometriosis was found and removed from behind my left ovary.

I remember waking up in recovery with 7/10 pain when the nurses confirmed with me that they found endometriosis and had removed it.

I was overwhelmed with emotions. I was happy there was a reason for my pain and that I had a diagnosis with a treatment plan, however I was heartbroken that this meant that I had a condition that will never go away for good as there is no cure.

The treatment plan included three months of Lupron Depo shots and after the shots, my husband and I could try to conceive again.

Staying positive I just had to wait three months.

Three months really isn’t that long if you think about it.  I’d be busy with student teaching so my mind would be preoccupied anyways.

These seemed like the longest three months of my life. The shot made me nauseous everyday to the point where I had to take a prescription to curve it, which sometimes that didn’t even completely help.

I wondered how in the world cancer patients do this and go to work? Man they really are superheros! If they can do it, I can too!

I’ll spare you some of the random recovery details, but I’ll summarize it in short for you.

It took me three weeks before I felt decent again. I could barely move on my own for at least three days post op.

Lots and lots of hand holding to walk to and from the bathroom.

A five pound weight restriction was also in place so I needed assistance to pour a glass of juice.

Word of advice: if you ever have pelvic surgery buy bottled beverages ahead of time or prepare some that you can take out of the fridge on your own so you don’t have to ask someone to pour you a glass of juice.  Feel like a child much? Lol.

I’m an independent person so it’s hard asking someone to do such simple tasks.

That gas though from surgery! Talk about a catch-22 where the best way to relieve it is walking, but walking even two steps is unbearable.

What am I talking about..just getting out of bed is a challenge due to pain.

Is this what pregnancy feels like or what c-section recovery feels like? If so, guess I’ll have experience if I ever have a c-section!

Fast forward three months and I had accomplished so much.

I graduated college, was at the very end of student teaching and was getting excited about being able to conceive again. I just had to wait for my period to come back!

Who knew I’d ever be so excited for my period to come?!

Well, when you’re wanting to conceive it kinda needs to happen.

Christmas Day had finally came and I got a red present, or so I thought at the time. It came with a mild cramp that had a stinging sensation to it (just like before my surgery), but I thought maybe that was just my new normal or an effect from three months with no cycle. It didn’t impact my daily life, so no biggie.

After my period came my unwanted friend again, the burning pain that made daily life a struggle.

I couldn’t put jeans on, I was nauseous, and I had to find my new wardrobe again.

A message to my Dr.’s office was in order, which then followed with an appointment and you guessed it, another exam (oh joy!).

The exam confirmed my fear. The endo decided to come back to visit.

I had two options.

I could either wait it out and try for conception with the next couple cycles or revert back to medication.

I could do the Lupron shots again for three months or try the new Orilissa medication (pill form of the shot).

Well since intimacy hurts to the point I didn’t even want to try, medication it was. Here’s to another three months of temporary menopause.

My family and friends have been extremely supportive through all this and they really are troopers for supporting me with this journey.

They’ve been there every step of the way with me with this. They really do wish there was more they could do. They don’t like watching and seeing me in pain.

They feel for me that I may never be able to experience pregnancy.

We rejoice in the fact that there is adoption and my husband and I are strongly looking into adoption. We don’t know what the future holds as it’s all up to God, but we do know that God will walk this journey with us.

We know He has a plan though we may not fully understand it. It’s not our job to understand his plan, it’s our job to find comfort in knowing that his plan is always greater than what our plan is. It is our job to trust him like a good athlete trusts their coach.

-Just a story of an endo fighter

-Jannie Hanna

Empowered

You can’t get me
I won’t let you
You found me
But you won’t defeat me
I will fight you
I will live despite you
my new normal
But it doesn’t mean I’m defeated
I’m an endo warrior
I have a support family
Despite you I will always be loved
I’m loved for me
That is the greatest blessing for me
A baby of my own is what I wish
You will decide if it will be or not
Despite what you decide
I will have a family
No matter what you decide
I will adopt if that’s what has to be
You are not my friend
But that’s okay
I will live with you
Since you decided to reside in me
I will rise above you
I am strong you see
You don’t define me
I define me
You may test my strength
But I will always win in the end
Because you can’t get me
I won’t let you

By Jannie Hanna  ©

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One thought on “GUEST POST – Living with Endometriosis

  1. I wasn’t able to get pregnant because of endometriosis.I won’t bore you with the details, but after surgery and some drugs (that they have undoubtedly improved upon by now), I was able to get pregnant. That pregnancy did something to my hormone balance that let me get pregnant again. I hope it works out for you.

    Like

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