Almost 2 years post-op

I had my endometriosis excision surgery almost two years ago. And it was life changing. I honestly didn’t remember how being pain free felt until after the endometriosis lesions had been cut out, and I had healed up from surgery. And that’s even with the gastroparesis pain I didn’t realize I was having.

It’s been about a year since I stopped my aromatase-inhibitor and progestin. I haven’t been on any hormonal control since.

And, I am terribly disappointed to admit, I think my endometriosis is flaring again. Either it wasn’t all removed, and what wasn’t removed has grown; or it has returned; or my possible adenomyosis is getting much worse and mimicking endo symptoms. No matter the mechanism that familiar pain is returning. It started just with my periods… the rectal pain, the vaginal pain, the ovarian pain, the sucker-punch to the gut… but now some of the pain is occurring between periods as well. That pressing, cranking, outward ballooning feeling… like I imagine one of those Medieval pear torture devices must feel, is currently making me miserable.

I knew endometriosis is a chronic condition, and that my journey with it was not over with my surgery, but I was hoping for a few more years before any symptoms returned.

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Gallbladder, oh gallbladder

I just got back from Dr. S’s office.

She thinks the left sided pain may be referred pain from my gallbladder, and that surgery is our best option at this point, but understands my reluctance, especially since the change of resolved problems with atypical symptoms is 41%.

So she’s agreed to do the ultrasound and run the blood work for pancreas function (amylase and lipase) when I asked her to. The ultrasound and blood work is scheduled for the 2nd. It’s pretty much the last test we can do to give us any indication if its the gallbladder, short of removing it.

So, if those results of the ultrasound and blood work don’t give us any new information that contradicts surgery, then I agreed surgery would be the best next move.

Every time I go to her office, I bring a report of everything that’s been going on since my last appointment. My reports have included information about my bladder being reluctant to empty completely, the pins and needles I get in my limbs, and the random muscle contractions that occasionally occur in my right leg– most often before bed (which she said is normal) but also have occurred when I am awake (she said that is not normal). She thinks I should see a neurologist. So I’m going to look into if I can go to the student health center over the summer, and get the student health center to refer me to a neurologist, since the insurance will pay more of the bill (90% instead of 80%) that way. If I can’t go to the student health center over the summer, Dr. S said she can refer me to the neurologist.

I really like Dr. S, and am so glad she listens to me and validates my effort, thoughts, and research into my own health. In my experience, it is rare that a doctor does that. She’s one of the good ones, which makes up for the incredibly slow speed of her office, and why I will continue to see her as long as I need to.

Now I just need to think about the financials. It’s stressful enough that my health causes “speed-bumps” in my academic work and mental functioning (I have had some cognitive dysfunction lately, often switching a wrong word for what I mean to say, and making mental connections is slower than I’d like… Which is NOT conducive to working on my preliminary exam this summer.) But the financials are getting pretty tight. Graduate students don’t make much money.

I have an annual $3000 out of pocket max on my insurance. I need to find out if the “year” is the calendar year or the school year. It’ll make a big difference if my out-of-pocket max rolls over on July 1st, or January 1st. If I’m going to have that surgery this summer, and see a neurologist- with more tests I’m sure, I really want to know if I’m looking at a new $3000 bill, or if it will be less since I’ve had, and paid for, procedures so far this calendar year.

My First Surgery – Prep.

As the days creep closer to the surgery, I’m trying not to think about it too much, lest I become far too anxious.

But of course, the surgery will be taking me “out of the game” for a while, so there have been a lot of things I’ve needed to prepare for.

First, comfort after surgery:

  • All summer I’ve been on the look out for loose clothing, like maxi skirts and dresses, and loose dresses I can wear with leggings. I’ve heard laparoscopic surgery will leave you bloated for quite a while, so I wanted enough loose and comfortable options to last longer than just a day or two after surgery.
  • A couple of weeks ago, when I first found out we’d be moving forward with the surgery but I still didn’t have a date, I bought a wedge pillow to use during recovery. I also bought some Arnica gel, which I have heard is very useful for resolving bruises and reducing pain while healing. Once my incisions are completely healed, I’ll have that on hand.

wedge pillow

  • I’ve also stocked up on Thermacare Heat wraps, to apply to my shoulders following the surgery. I’ve heard the gas pains that travel up to your shoulders can be awful.

thermacare heat packs

  • In the same vein, I bought some Gas-X and some Miralax to help things get moving after the surgery, and hopefully keep from having any bowel gas build up. After a bowel prep (yes, I did get the go ahead), surgery, and narcotic pain meds- which are known to cause constipation… and given my current bowel workings… I’m sure I’ll need these two products.
  • I also checked my cabinets for some peppermint tea, and peppermint candies, that I can sip or suck on after the surgery. Peppermint should not only help with the gas, but with any nausea- which I’ve heard can be a problem after surgery.

Second, arrangements that need to be done BEFORE surgery:

  • One of the most important things I needed to have completed before surgery was find someone to watch the pets. We’ll have to leave the house by 5 am to get to Dr. Y’s office for the pre-op appointment at 8 am. And who knows when we will get home- could be Friday afternoon or evening- or they could hold me for longer. My mom is coming down Saturday morning to help out, but couldn’t make it Friday- leaving one day unaccounted for. The dog has to go out, get fed, and take his pill after all. And the kitties would like their wet food- though they would be fine if they didn’t get it.Thankfully, A worked it out with one of his coworkers that we both trust, that they will come over and take care of the boys throughout the day Friday.
    OrionDr. PepperIcarus
  • Of next importance was writing up a sort of living will- except nothing official or legally binding. Just something that I’ve put together to give to my mom and A before the surgery, so that if anything goes wrong they know my wishes. Growing up my dad went into a coma after an aneurysm ruptured; there was A LOT of drama about what he would have wanted versus what various members of his family thought was best or what they wanted. I don’t want that kind of drama if anything ever happens to me, so wanted to make sure there was at least a document somewhere where I made my wishes known.
  • And wedding stuff. Since we will be getting married two weeks after the surgery, I realized there would still be a lot I would be limited in doing- and would therefore have to get done before the surgery instead. This past week we got our marriage license. Then, this past weekend we went and did the venue (campus horticulture gardens) walkthrough. And tomorrow I’ll be mailing off the photographers list. Plus our last few deliveries should all be here before Thursday. Although this isn’t all that needed to be completed for the wedding, the rest I should be able to easily manage even while resting and recovering- or A will have to do it.
  • Laundry! Last night I washed all the clothes that needed to be done, and a bunch of blankets. Although I won’t be needing all the laundry I cleaned, it is nice knowing they are all taken care of.
  • A bit of cleaning. My apartment is a mess. Between the dog, the cats, graduate student mess (papers, binders, books, and school work everywhere), wedding mess (there is little stuff everywhere and the cornhole boards are taking up a lot of space), and generally not feeling well enough to really clean… well you can get the picture. I’m not going to spend a lot of time cleaning or organizing (like I usually would before my mom comes to visit) because I frankly don’t have the energy… but I will make sure the bathroom is at least nice and clean.

Odds and Ends:

    • For a bit of confidence boosting before surgery, I bought this awesome shirt to wear to Dr. Y’s office and to the hospital.I’ll post a picture of me rocking it day of, sometime after the surgery.

Ova Achiever Uterus Shirt

  • I also bought a giant plush ovary (I named her Penelope) to take with me in the car.
  • Thursday morning I’m going to go get my hair cut and my layers touched up. A bit of pampering has to be good, right?
  • I bought a little sleep mask and some aloe socks to take to the hospital to make me feel more comfortable (and hopefully prevent any light sensitive migraine triggering with the bright florescent hospital lighting).

For my hospital “bag” (some things will stay in the car), I’ll be bringing:

  • Loose clothes for leaving the hospital
  • Comfortable, non-binding underwear
  • Toothbrush and toothpaste
  • Hairbrush
  • Deodorant
  • Gas-X
  • Peppermint tea bags and candies
  • Penelope, the ovary
  • A soft pillow for the car ride home- to go in between the seatbelt and my abdomen
  • Eye mask
  • Aloe socks
  • Normal socks
  • Phone Charger
  • Heat packs for shoulder
  • A few cloth pads of varying absorbancy (they will be using a uterine manipulator during the surgery, to keep it out of the way; this often leads to some bleeding after the surgery)
  • Chapstick
  • My inhaler
  • My usual meds, in case I do have to stay the night.

There are just a few more things I need to do, like pick up the things for bowel prep, show our lovely pet sitting coworker the routine, pack a hospital bag (in case I need to stay longer than I’m expected), and actually do the aforementioned bowel prep.

Just a few days left to go!

My First Surgery- PreOp Call(s)

I’m going to write a series on my first surgery. Hopefully it will be helpful for anyone else preparing to go in for endometriosis excision.

My surgery is scheduled for August 22. It will be taking place at my specialist’s (Dr. Y) hospital, 2.5 hours from my house. Thankfully, most of the pre-op management will be through phone calls, and then I will have a pre-op examination the same day as the surgery.

This week has been full of pre-op calls. Because I have never been to the hospital my surgery is being conducted at, I’ve received two calls to pre-register with the hospital and verify my information. I also received a call informing me that I would be getting a call for pre-op questioning on August 15th, between 8 and 10 am, and I should have a list of all my current medications available.

Sure enough, at 8:40am I received a call from a lovely nurse. After confirming my identity and what surgery I was going in for, we went through all of my medications- both daily and as needed. She told me to stop taking my multivitamin, tums (calcium supplement), and any Aleve or NSAIDS from now until after the surgery. She also said to make sure I take my omperazole the morning before the surgery with a sip of water, and to bring my inhaler with me to surgery.

Then we went through a list of questions about my medical history, including my current pain levels. She also asked if I consented to receiving blood products if I need them, and if I had any religious objections that they would need to know before surgery.

She gave me some instructions for the day before surgery, including don’t eat anything spicy that day, drink lots of water, don’t eat or drink anything after midnight-except that sip of water to take my pills, take a shower before bed with antibacterial soap, bring my insurance and ID to the hospital, don’t wear any jewelry or metal the day of surgery. She said to call and ask my surgeon about bowel prep (after I asked about it), and to call him if I start running a fever anytime before the surgery.

She also gave me a number to call the day before surgery to call and verify the time of the operation, and a number to call if we got delayed on the drive in.

Finally, she asked who was bringing me to the surgery (A is of course), said he’d have to stay at the hospital the whole time I was in surgery, and then told me where we could park and how to get to the women’s center where my surgery would be. She asked where my primary pharmacy was, and then she asked if I had any additional questions for her.

All and all I must say it was a fairly pleasant experience. She was very nice, in contrast to some of the medical professionals I’ve talked to. I usually have a lot of anxiety about talking on the phone, but I am glad I could talk to her on the phone- I was a lot more comfortable and put together than I would have been face-to-face in an office.

Now I just have to work up the nerves to call Dr. Y about the bowel prep…

August 22

I finally got my surgery date.
August 22nd, at 11:05 am. I’ll have pre-op at 8am that morning.
And the hospital will call me on August 15th with the pre-op instructions.

I’m so excited that I finally have a date. But I’m super nervous at the same time.

And it seems I will be missing the first week of classes, which start August 25th.
And my wedding is September 6th- so that’ll be a really long day.

But at least I have a date. A glimmer of hope that I will feel better soon.
And at the very least, at least I will have an idea of what is going on in that pelvis of mine.

I’m still waiting to hear back regarding my surgery date.
Not having a date to plan around, getting closer and closer to school and the wedding… stress is certainly building.

How long does it take to hear back from the hospital?!?! (I know it’s only been a week but it feels like forever).

Dr. Y- Revisit

A lot has been going on this summer- planning A and my wedding (were about a month away now), numerous veterinary visits for our one-eyed cat Icarus for acupuncture and trying to manage his worsening arthritis and luxating patella, work, and of course health.

In all of the drama, I have found Dr. Y again. He left his previous practice and now has a private practice. I had a lovely chat with him today and we will be scheduling my excision surgery for the next couple weeks (before classes start).

I’m excited, relieved, and terribly nervous about this decision.