Being a part of the invisible illness online activism community, you run in to a lot of new terms that have to do with your illness. Some, like “spoonie,” instill a sense of comradery.
Others help explain your illness in a language you hadn’t heard from your doctors, either because some doctors tend not to use “medical” terms with patients, or because it’s simply hard to explain something they understand so fully to someone who is new to it all. I don’t say this to be mean – Doctors are not teachers. Being a terrible teacher myself, I understand how truly difficult it is to teach someone something.
For me, having friends online with the same illnesses as me helped me understand a lot about myself. For instance – in the endometriosis community, I’d often see the letters PCOS pop up. I had no idea what that stood for, but I knew that it was similar to endo in many ways and was a kind of infertility. My doctor has never mentioned those letters before, but this year he said “Polycystic Ovary Syndrome” and on the car ride home it hit me that it abbreviates to PCOS – and I felt a little better because I did actually have some rudimentary knowledge of it thanks to the online community. It was still sad – no one likes to face a battle, but knowing what you’re up against can help tremendously.
But there’s a third kind of term I’ve come across – the mystery words. Words you’ve never heard before, have no idea what they mean, and that are actually rather hard to find info on. For me, it’s the use of “stages” in reference to endometriosis.
I think that there’s two reasons for this: one, I think that the stages are a sort of colloquial term used among women with endo talking to one another, but that doctors or “normal” people wouldn’t really use. Two, I don’t think it’s a common term used here in the States – many of my online “endosisters” are from Across the Pond. I theorize that there’s much higher awareness of endo in jolly old England. I think more doctors and patients know about it, and I think since there’s so much more general knowledge of it that more in-depth discussions happen more often, and that’s how people (doctors? I don’t know) came up with the “stages” of endo.
Now, the “stages” of endo aren’t like the stages of grief or something like that.
No, rather than some kind of progression or series of steps, the stages of endo are (fittingly) more like the scale used to measure tornadoes.
(This health blog is begining to double as a Texan meteorology blog with all these tornado metaphors lately.)
So with tornadoes there’s a scale of F0 – F5, with an F5 being the most severe storm. Tornadoes can start out as an F2 or F3 and move up to F5, but sometimes they’re just an F5 all of a sudden.
Endo seems to be that way, too. From what I can tell, the stages of endo measure severity as well, and you don’t have to go through each one.
Keep in mind that I don’t actually know what I’m talking about. Like I’m doing research and stuff but if you’re someone who uses these terms regularly feel free to enlighten me. I want to understand!
So anyway, the stages measure severity BUT! remember that endometriosis behaves like a made-up illness – you can have severe endo without severe symptoms, and mild endo with horrible, life-crushing symptoms. The stages measure the severity of endo physically but does not actually describe the levels of pain being felt.
So in some ways, I think this scale is kind of useless and could serve to create rifts. After all, think of how it must feel to say “I have stage I endo” but to be unable to get out of bed. Or to say “I have stage IV endo” but feel guilty because you don’t feel too bad. Of course, since this phrase is mostly being used within the community of women with endo, most people who would use or hear these terms would be educated enough to understand what they really mean. Still, I can see why doctors around here haven’t adopted this terminology. Boy, endometriosis is really confusing!
So what are the stages? They go from I to IV, and I always see them written as roman numerals. I is the most mild, while IV is the most severe.
I found this confusing chart on the subject (which is, by the way, American, so I guess it does exist here too).
As you can see, there aren’t clear-cut rules for the stages. There’s all kinds of different crazy circumstances. And points, apparently. This chart’s the first time I’ve seen talk of points. Gah, endometriosis involves math now? Could it get more evil?
I think the chart helps explain the way the ranks work, yet I couldn’t tell you (based on the chart alone) what stage I’m at. I don’t know what counts as deep or superficial or “filmy” (gross) so it’s like…ummmm?
However, it’s a good starting point. So how do we rank ourselves? How would I go about finding my rank?
Well here’s where it gets even trickier. I’ve had 3 surgeries for endo – and each time, they’ve been successful. The problem is that endo springs up in new places next time. The places where we removed endo before stay healthy – but there’s always new stuff. It’s different every time, making the chart even more confusing. This is just for me personally. My body is good at staying healed but some girls have endo that reoccurs in the same spots.
So there has to be other rules for these rankings. And I found some!
“The stage of endometriosis is based on the location, amount, depth, and size of the endometrial implants. Specific criteria include:
- The extent of the spread of the implants
- The involvement of pelvic structures in the disease
- The extent of pelvic adhesions
- The blockage of the fallopian tubes
The stage of the endometriosis does not necessarily reflect the level of pain experienced, risk of infertility, or symptoms present.”
This is from the John Hopkins Medicine website, which seems like it knows what it’s talking about. Put plainly, what we’re looking for is:
1.) How much the endo spreads (remember that endo cells grow the same way caner cells do – and that cancer also has “stages”).
2.) How many parts of the reproductive system and other systems are affected (ovaries, tubes, bladder, colon, etc.), and
3.) if the endo has blocked your tubes or not (I was recently tested for this. Good news: my tubes are open. Bad news: it was one of the most hellish tests I’ve ever gone through. But that’s a post for another day.)
And I’m not really sure what it means by the extent of adhesions – isn’t that kind of the same thing as number 1? Maybe it means how big/deep they are. I don’t know. In any case, I have a somewhat better idea at this point how to rank myself.
After reading all this, and taking in to account how many surgeries I’ve had and how they get closer and closer together but still yield just as much endo to remove, I’d have to guess I must be at a very severe stage.
If we’re talking about spread, my endo sure can spread. Like I said, I stay healthy after surgery in the spots that were treated, but the endo just finds a new place to grow. I’m not even sure I have any organs in my lower abdomen that have never had endo on them at this point.
It also spreads quickly, judging by my surgeries. There were three years between the first and second, but only a year and a half between the second and third. Now it’s been less than a year since my last surgery, and I’m already ready for another one, I just can’t afford it. That’s some fast spreading.
But hey, my tubes are both open. Open and squiggly, like a phone chord, which I thought was weird. You always see them drawn as neat curves. Doc says they move around a lot and aren’t squiggly all the time. I guess that’s just another unrealistic standard of beauty.
So I can see why my doctor might shy away from using the scale. It doesn’t indicate pain levels, and really, it would be very alarming to hear I have “Stage IV Endometriosis,” that sounds a lot scarier than the already scary diagnosis of “just” endo. I suppose I appreciate that no one’s “ranked” me.
I guess overall, I don’t see a need for the scale. To me it seems to minimize the suffering of those with stages I and II, and frighten those with stages III and IV. It’s kind of interesting to look at in the same way that it’s fun to take personality quizzes, but in the same way I think it’s not something to dwell on or put a lot of stock in. Endosister to endosister, I don’t think it really tells us that much about each other. Not as much as if we just shared how many surgeries we’ve had or what our symptoms are like. In fact, the more I think about it, it seems like I really only ever see people use the term if they’re saying “Stage IV.” I can see why, saying “Stage IV” has more shock value than just saying “I have endometriosis.”
It is reminiscent of cancer stages, which isn’t a fair comparison since these two scales rank entirely different things. I don’t think people who use the term are trying to get pity or anything, but just trying to get people’s attention. For good reason – I’m the first to say how important awareness is. But it comes off to me as a sort of buzzword. Something that sparks emotions rather than educates.
I was diagnosed with endo in 2008. I’ve been active in online communities since 2012. It’s taken me about three years to notice this scale, talk to people about it, and figure out what it means. It’s pretty confusing stuff! And if you’re trying to raise awareness, it’s probably not the best gateway. It’s confusing to hear “stage IV” and jump to conclusions only to find out it isn’t actually a connotation of pain or infertility. Once you figure out what the scale actually means, you might wonder why people are using that to fish for awareness. From there, it’s easy to wonder if you’re really fishing for awareness, or just pity/praise/attention.
So yeah, the scale kind of annoys me. I think people use it for the wrong reasons. The scale itself is a useful tool for doctors or anyone having an in-depth discussion of the physical aspects of endometriosis. I have never once seen it used that way though. It is always used as an adjective to describe living with the illness, and that is quite simply an improper use. I can’t say enough – the stages DO NOT have a connection to severity of symptoms. But people never say that – they never explain.
I’m EXTREMELY passionate about awareness, and to me there are two halves to that: education about the diseases themselves, and sharing what it’s like to live with these things. Solid facts plus emotion and humanity. Too often online activists are all emotion and no facts, and the endometriosis stages is a perfect example of this. If you only encounter this term in blogs and on twitter, you’d never know what it really means. That’s a problem. It shows that it’s being misused and ineffectual.
When you look at medical sites, you can find the real explanation. It’s confusing and complicated, but only because it’s written for doctors or by doctors – remember, a doctor is not a teacher. I hope that this post explained it well in more common terms, and I wish more people wrote posts like this. As important as sympathy is for the cause of invisible illness awareness, without clear explanation and education it will only do one of two things: win you pity, or push people away. Neither one helps our cause.
So to anyone with chronic illness, I want you to remember this isn’t a competition. We don’t need to rank how severe our illnesses are and compare. And endosisters, as if women need another thing to compete with each other over! We need to support each other, educate our friends, and do it all with a candid honesty – we need to “keep it real” as they say.
What stage of endo do I have? Without a doctor’s official word, I don’t know. It’s there, it hurts, I live – what else matters?