What is Endometriosis Anyway?

I realize most of this blog centers around my struggle with (suspected) endometriosis, and yet I’ve never explained what endometriosis is.

Endometriosis is a chronic inflammatory condition. The inflammation is caused by tissues which grow in areas they aren’t supposed to- specifically, when tissue like the lining of the uterus grows outside of the uterus. (Adenomyosis is closely related to endometriosis; it occurs when tissue like the lining of the uterus grows within the muscle of the uterus. It is suspected that I have this condition as well).

These tissues form lesions which produce their own estrogens and other inflammatory compounds, agitating and damaging the surrounding tissues. The agitation and damage can become so severe that the body builds adhesions- or scar tissue bridges- hiding the lesions and gluing tissues and organs together.

To get a simplified idea of endometriosis- think of pimples. A pimple is caused by local inflammation as the body reacts to something (bacteria, dirt, etc.) trapped in the pores. As part of the inflammatory response the tissue grows red and swells, becoming painful as there are local areas of damage. If you pop a pimple, a scab will form to seal off the damaged area. Eventually pimple resolves as the immune system takes care of whatever caused the inflammatory response in the first place, and the pain from that pimple disappears with it.

Except, with endometriosis this is an internal process, and the tissue that is causing the inflammatory response never disappears (unless surgically excised), and the ‘scabs’ over the damaged tissue still form- as adhesions, which don’t resolve but stick the surrounding tissues together (unless surgically removed). And endometriosis can be much more painful than even your worse pimples.

There are numerous theories about how this aberrant tissue gets to locations outside of the uterus- most commonly on the peritoneum (abdominal lining), ovaries, and bowels, but also possibly the diaphragm, and even areas outside of the abdomen, such as the lungs.

The most common and persistent theory is Sampson’s Theory of Retrograde Menstruation.This theory states that during menses, shedding endometrium (uterine lining) and blood doesn’t always flow out of the uterus through the cervix and out the vagina- but rather some of that shedding tissue flows up through the oviducts (Fallopian tubes) and out into the pelvic cavity. There are a number of holes in this theory though- the largest being that studies have shown that both women with and without endometriosis experience retrograde menstruation every time they menstruate, and those without endometriosis never develop it. It’s also been shown that endometriosis lesions follow somewhat predictable patterns, and once the endometriosis lesions have invaded one area of tissue they can invade further locally (and with more depth into the tissue) but not spread to distant tissues. If free-floating menstrual products were causing endometriosis lesions, then a more unpredictable and structurally diverse location of lesions would be seen. Finally, Sampson’s Theory makes it incredibly difficult to explain the cases of endometriosis which have been confirmed in males undergoing estrogen treatments for prostate disease, or fetal tissues- both cases where exposure to menstrual products never occurs.

The far less popular, but more plausible theory, is that endometriosis lesions arise as a result of abnormal embryologic patterning and development. The aberrant tissue is always there, but becomes active as puberty is reached and after years of exposure to estrogens.

Regardless of origin theory subscribed to, endometriosis is a troubling and difficult disease to bear. It can only be diagnosed through surgical biopsy and pathological examination (adenomyosis can only be positively diagnosed by a tissue biopsy or hysterectomy), and many doctors are not trained to find the subtle and vast possible appearances of the lesions. Most people who are suspected of having endometriosis are rather given hormonal treatments (birth control pills, GnRH antagonists such as Lurpon, or aromatase-inhibitors like I’m on) to try to manage symptoms. However these treatment options do not actually treat the disease at all. For some individuals, they do work to effectively manage symptoms- but for others, like myself, they do not. And we must push for surgical treatment.

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).