Some of you are long-time readers and fellow endosisters, and some of you are new to this blog and this disease. I know many of you are friends and family wanting to know more about my situation and my upcoming surgery. I’ve decided to put together a very broad and easy to understand FAQ to not only help you guys, but also anyone who is about to have surgery and is experiencing the onslaught of questions from friends and family. Hopefully we can just post this and get back to healing!
Why are you having surgery?
I have endometriosis, which is a chronic pain disease. I am having surgery to help relieve some symptoms.
What is endometriosis?
Endometriosis can be difficult to explain. I used to sum it up in this: “internal bleeding.” But then the online community jumped down my throat because that statement seems to make no sense. I think it is a good way to begin understanding endometriosis, though, especially to males who don’t want to hear you say the word “uterus.” If you call your period “bleeding” then endometriosis is that “bleeding” internally. Neither one is actually bleeding blood, but everyone calls it that and it is easy to understand.
Here’s the slightly longer explanation: Every woman actually has the conditions of endometriosis. If you remember back to biology class, you’ll recall that the ovaries aren’t actually attached to the fallopian tubes, and if you’re like me, you probably saw that as a pretty big design flaw and wondered why it didn’t cause problems. Actually, it causes lots of problems.
See, there’s a little bit of space in those flower-looking ends of your tubes. Now, also stretching your mind back to biology class, do you remember what your period is? It’s shedding the lining of your uterus, which is called endometirum. Stay with me, I know this is getting science-class-y. It’s easy for a bit of your lining to slip out through your fallopian tubes instead of leaving your body the normal way, and in fact most scientists believe that this occurs in all women. Women with endometriosis, however, can’t seem to handle this. Healthy women’s bodies fight off the misplaced endometrium and get rid of it. For reasons not yet understood in the medical community, some women’s autoimmune systems don’t take care of it, allowing the endometrium to irritate surrounding organs and muscles, cause pain, and even grow and spread in ways similar to cancer.
It’s also hypothesized that women with endometriosis loose more endometrium through the fallopian tubes than normal, possibly causing a simple overload in your system’s ability to fight it off.
So what surgery are you having?
I’m having a procedure called a laparoscopy. A laparoscope is a small camera with friggen laser beams on its head. It is inserted through small incisions in the stomach to look at your insides and use the laser beam to burn away endo and scars from endo, which will help reduce pain.
In short, the endometriosis will be removed.
How long will you be in the hospital?
It’s a day surgery, so I’ll be able to go home afterwards. My doctor estimates me leaving the hospital around 5:00 in the evening.
After this, will you be all better?
Probably not. Endometriosis is incurable. The only goal of this operation is to reduce pain levels. While there is a small chance that I will stop having symptoms one day, it will probably not be the result of surgery. Major body changes like pregnancy or total removal of the uterus can cause the symptoms to disappear, but neither way is a guarantee and so is not considered a “cure.”
Have you had surgery before?
Yes. In fact, I have had this exact surgery twice before.
If you’ve already had this surgery, did it fail the first time? I hope it “works” this time!
The surgery always “works” in that it always removes the endo currently growing and gives your body a clean slate. But think of it like cancer that returns – removal is not a cure. It’s only a means to relieve symptoms. After my first surgery, I felt “all better” except for scattered “bad days” for about three years. After my second surgery, symptoms returned much faster. Doctors still aren’t sure why endo grows and spreads, so there’s no way to know what will be the next steps.
I heard that endometriosis means you can’t get pregnant. Is that true?
It can be true, but surgeries like the one I’m having help to keep it from getting that bad. Right now, my doctor is confident my fertility has only been mildly affected – meaning that it may be a bit harder for me to get pregnant, but not impossible or even unlikely. Having these surgeries cleans out the damage being done by endo, and as this is my third, it’s safe to say I’m doing all I can to keep it under control.
You’re still going to work and teaching colorguard lessons – if you’re still active, why are you having a surgery? Is it really that bad?
In the words of my doctor, it’s not a question of life or death, but rather one of quality of life. I am much sicker than I seem, and if you see me at work or teaching color guard, I promise I’m on pain meds and seem better than I am.
Why not just take pain medicine then?
As I mentioned earlier, endo can do irreversible damage to your body that can make it impossible to get pregnant and damage other organs in your torso (and you kind of need those). Aside from that, pain medication is very hard on your system. Most people have taken narcotics after an injury, surgery, or pulled tooth, but it was short term. You know that it made you feel loopy or sleepy, but other than that wasn’t too big a deal. Long term use of strong drugs like these can result in a lot of problems. It’s rough on your liver the same way binge drinking is, and it weakens your bones and teeth the way street drugs like meth do. I’ve had a million cavities and crowns and pulled teeth already because of it.
So do you hurt all the time?
No, but it’s unpredictable, so sometimes I go months feeling fine, and other times I may be in pain for months straight without stopping. Even moment to moment can be unpredictable, so that’s why I may cancel plans at the last minute or seem to be running late all the time.
So what makes you decide to have surgery instead of continuing pain medication?
It’s a really hard choice to make. Surgeries are expensive but necessary. My doctor monitors how fast or slow I go through bottles of pain medicine, and will usually call me in if it’s clear I’m using more than normal. If it doesn’t get better, he suggests surgery. Early this year he brought up surgery – way back in February I think. I wanted to solider on and see if I could get better. He said he wouldn’t want to wait a year to “wait and see” so I told myself that if things didn’t improve after six months, I’d give in. It hasn’t yet been six months, but my condition took a nosedive. I’m hurting non-stop when usually it comes in waves, and I’m up to taking 3 pills a day when normally I take 1 every 3 days or so. I let it go until I couldn’t any more, basically.
What can I do to help?
Leave me a nice comment. Maybe send me some funny cat videos. If you’re really moved, email me at firstname.lastname@example.org and I can give you my address if you want to send a card or care package. In the past cards have really cheered me up in the days following surgery because I can keep them close and they make me feel special. I’ve also been blessed enough to have local friends bring meals for me and my husband so that he can focus on taking care of me and not have to worry about cooking. I’m not panhandling for free stuff right now, but if you know someone who is having surgery and want to do something for them, these are great ideas that make a big impact.
While I like the idea of visitors, I honestly will probably not be fun to visit. I’ll probably be really sleepy in the days following surgery and won’t really engage in conversation very well. But if you do want to visit, plan on just dropping by for a moment. Seeing your face will make me happy, especially if it’s a quick hello, I love you, go back to sleep.
And if you want to give gifts, here are some thoughtful ones I’ve received in the past – chapstick and lotion, to help me stay comfortable in my own skin, silly toys or stuffed animals (I collect Vinylmation and people have sent me those before – extra fun because you don’t know which one you’ll get and it’s a bit of a game), pajama pants, fancy soap, tea, flowers, and my favorite – books. Because books are awesome when you can’t get out of bed.
And here’s a short list of personal to me things if you insist – Ninja Turtles, cats, disney stuff (especially anything Sorcerer Mickey), hello kitty, peppermint, bumble bees, hearts…..I dunno. Skim through the blog or my pinterest if you need more. 😉 (dood this adorable plushie is at Build a Bear right now!!!)
And if you have more questions, put them in the comments so I can make this a better guide for my future endo sisters. And, you know, answer your question.
One final note:
Remember that endo, like many illnesses, has no cure. So rather than “Get well soon,” try “Be as well as possible.” That gives me the warm fuzzies every time.