Well, I had my ultrasound today with Dr. Kurtulus.

And we talked for about 30 minutes afterward. My suspected chocolate cyst has grown another 1/2 centimeter, which wasn’t distressing to him yet. But we discussed my journal, my symptoms, my pain, my concerns, my vacation plans, and a possible hysterectomy.

If I opted to go to Burning Man this year, I’d deplete any vacation time if I needed surgery later this year. And be left with no option but to suffer until next year when my vacation time renewed. And who knows what can happen in six months…

Due to my pain levels as of late and my progressing symptoms (and growing cyst), there’s no time like the present. Why delay? Me first? As my cousin whispers in my ear each time we hug, “You be good…to you.”

I asked about a hysterectomy. Jim and I aren’t planning on having children. And although it’s not a cure, it may help with a large part of my pain every month. After lengthy discussions of pros and cons, as well as several doodles of my fancy dual-cervix and septated vaginal canal, we shall wait on the hysterectomy. My bits are complicated.

So, in a month or two, we’re gonna peek under the hood and have a look.

The chocolate cyst will be removed.

Any Endometriosis lesions will be excised. (Assuming he finds any)

Any adhesions will be freed.

And my anatomy shall be restored as best as possible.

Now what about this new under-the-rib pain that I’ve been enduring for the past two weeks? He knows, as do I, that I have Endometriosis on my diaphragm. It was one little spot, as memory serves. But he’ll do his best to analyze the underside of my diaphragm while he’s poking around my pelvic cavity…And we’ll discuss future surgical options (which would require the skills of a cardiothoracic surgeon) from there if he feels that it may have worsened or migrated.

Going in today feeling strong about that pending discussion made it easier to walk out with a smile on my face. And I could be in no better hands than his. He has my utmost trust and respect.

But it still takes the wind out of my sails, so to speak.

I called my husband. Then my mom. And my work was very understanding. I’ve told a few friends. And I’ve formally canceled my Burning Man plans.

But here I sit. Blabbing and letting it all hang out. I want to throw up. I want to cry (hell, I am crying). But I still feel strongly that this is the best decision for me right now. And if he opens me up and doesn’t find any Endo, it will open up avenues to explore what is causing this pain.

I love you, Sisters and readers.

I hate this disease.

Have an Endometriosis surgery scheduled?  Here’s a list of things a few of my EndoSisters and I recommend having handy!!  If you’d like to add something, please leave a comment below. 🙂

In Your Purse:

Chapstick

Lozenges (to soothe that post-surgery throat)

Snacks for afterward, especially if you have any food allergies or intolerances.

Have ready in the car for that drive home:

Blankets

Bottle of water

Chewing gum (it has helped some gals with nausea on the drive home)

Ice packs

Overnight bag with clothes, toiletries, etc (just in case you have to stay in the hospital overnight)

Pillows

Sleep Mask (one of those eye covers; you may get ill with all of the movement of passing cars and landscape)

Travel pillow (for stuffing between your stomach and your seatbelt!)

Vomit bag

For Home:

A friend or family member (seriously for like the first 3 days…don’t be alone. You don’t know what your body can and can’t do…and you should be resting)

Comfy clothes. Nothing that binds. Think giant t-shirt, moomoo, or even naked!

Fiber!! (oh man…you need to keep poopin’)

Footstool (to help get in and out of bed)

Gas-X (helps break up the surgery gas that’s floating around inside your body still)

Grabby-stick-thingy (you know, that old people use to get stuff off of the top shelf)

Heating Pad

Ice Packs

Pads (yep…you may be bleeding afterward

Pillow with armrests (keeps you propped up, while lounging, and keeps pressure off your abs.)

Pre-made, easy meals (soups, crackers, etc.)

Prescriptions (painkillers AND anti-nausea medication)

Stool softener!!!!!

Squatty-Potty or something similar

Tape your cell phone charger to your headboard (you don’t want to bend down to get it!)

Walker (yeah, with tennis balls and everything – seriously helps you get around…not to mention sit/stand)

Going in for a surgery for Endometriosis?  Not sure what to ask? Here’s a list of questions you may want to bring with you.

Some of these may seem like common sense…but it’s good to have them written down to ask. You may forget while overwhelmed or in a fog! Feel free to add to these!  Have any suggestions you’d like me to add? Drop me a comment below. 🙂

Pre-Op Appointment Questions:

What will you do if you open me up and see Endometriosis? (Ask this, because many women have their diagnostic surgery and NONE of the endo is removed – just a confirmed diagnosis and a referral to another doctor to deal with the Endo).

Do you plan to excise (cut out) the Endo or burn (ablation) them? (Excision is considered the best way to deal with it as ablation may not get all of the lesion. Some surgeons only burn away the lesion if it’s in a difficult location to cut. Some surgeons ONLY use ablation and do not cut away the lesions.)

Will you remove adhesions? (Adhesions are scar tissue, oftentimes spider-web like and can twist organs or weave them together).

What’s the worst case scenario?

Will you take photographs or video? If yes, may I have a copy? (if you get photographs, make sure they’re labeled so you know what you’re looking at)

If you find Endometriosis on other organs, such as my bowels, bladder, liver, ureter, diaphragm, etc., are will you be able to remove it? Or will you call in a specialist to assist with the surgery? Or will a second surgery need to be scheduled to handle it?

May I have any painkiller and/or anti-nausea medications filled prior to the surgery date?

Anything you can do to lessen the gas pain that occurs in my right shoulder? Tilt my head? Warm gas? Expel more gas before closing me up? What are the complications of any of these methods? (This may help with the shoulder pain many women complain about after a laparoscopy.)

How long do you expect the surgery to last? Any way someone can update my (person who is in the waiting room) as they wait in the lobby once surgery begins? (My first surgery they expected surgery to last 1.5 hours and it lasted 4; nobody updated them on status and it was stressful and worrisome for them.)

Any “best” position to sleep while recovering?

Anything I can do to make this surgery easier on you?

Before Discharged from Hospital Questions:

What did you find?

Is it normal for my incisions to bleed or ooze?

How long shall I keep on the bandage for the belly button?

How long shall I keep on the bandages for the small incisions?

What do I do if a stitch/staple/glue edge sticks out?

When can I shower?

When should I be worried if I don’t poop?  Three days? Less? More?

Make sure you understand the restrictions while healing. Every surgeon is different. You may not be able to lift something over a certain amount of weight for a few weeks, etc.

Make sure you get the telephone number for the Nurse or Doctor in case of emergencies. They generally have it written on a sheet of paper. Put that somewhere handy!

Post-Op Visit Questions:

May I have a copy of the photographs/video taken during surgery (yeah, I know we asked that in pre-op…but no harm at your post-op)

What Stage of Endometriosis do I have? (there are four stages…each stage depicts a level of infiltration, but not necessary dictates your levels of pain. You can have Stage I Endo with SO MUCH PAIN or Stage IV Endo with no pain whatsoever. It’s just something good to know.)

How long until we can have sex? Swim? Go to gym? Return to work?

Now what?

**Updated July 11, 2018**