People questioning if they have endometriosis regularly ask me, “What is endometriosis like?” Like with many chronic illnesses, it’s hard to answer that. But since I haven’t written about endometriosis in a while, I figured it was time. So in this post, I’m going to answer some frequently asked questions about endometriosis.

This probably goes without saying, but in case it doesn’t, this post will discuss blood and periods. Additionally, while I do my best to use gender-inclusive language, some of the quotations I use will specify women. The reason why I use gender-inclusive language is that anyone born with a uterus and/or ovaries can have endometriosis, so if that applies to you, you need to know this information regardless of your gender. If you don’t like that I try to discuss anyone who could possibly have endometriosis, no one is forcing you to read this post or my blog.

I am not a medical professional of any kind. Additionally, this post contains affiliate links. Thank you for supporting Kate the (Almost) Great®!

What Is Endometriosis Like? My Experience

If you’ve been reading KTAG for a while or you follow me on Instagram, then you might remember that when I developed endometriosis in 2015, mine showed up as episodes of 2-6 ovarian cysts rupturing over the course of 48 hours 6-8 times a year. Extremely not fun!

I was diagnosed with endometriosis after several months of exclusionary tests. We opted to go with that route versus laparoscopy because, with my rheumatoid arthritis and its medications, we decided that the risks of surgery were too great. If we did laparoscopy, regardless of whether or not we found endometriosis, I would almost definitely form additional scar tissue. So if there happened to be no endometriosis adhesions (almost definitely unlikely), I could go through that just to form scar tissue. If there were adhesions and they were removed, I would probably form scar tissue again.

Check out my tips for describing your pain to doctors here.

Additionally, while ovarian cysts rupturing have been my biggest symptoms, I do deal with the other typical endo symptoms: very painful, very heavy periods. That’s the other reason why an endometriosis diagnosis made the most sense.

However, during my surgery in May 2023, they were able to confirm that I have endometriosis because I had adhesions all over the place, and often scar tissue wrapped around the adhesions. I had plenty of scar tissue without adhesions, but almost all of my adhesions were wrapped in scar tissue. Since I was able to get treatment without doing a biopsy, I’m glad we didn’t do a biopsy that would have just caused more scar tissue, although I’d be lying if I said I wasn’t nervous about future scar tissue caused by this surgery. It was more that they found the endometriosis when doing the other parts of the surgery rather than waiting until I had more endometriosis to do the surgery, but I do know that I have/will have scar tissue from the surgery.

These days, I occasionally have a cyst or two that ruptures every year, but I’m not having episodes of a bunch of cysts rupturing over a few days. In comparison, that’s totally manageable. 

Endometriosis: The Disease Women Aren’t Talking About

What is endometriosis?

Endometriosis is a condition where endometrial-like tissue grows outside of the uterus (x). It usually means the tissue grows around the ovaries, fallopian tubes, and the area lining the pelvis. The problem is that this tissue acts like regular uterine tissue and breaks down and tries to leave the body during a period, but since it’s not in the uterus, it doesn’t have anywhere to go, which causes lots of pain. And if it’s involved with the ovaries, it can create ovarian cysts. 

But it can grow anywhere in the body and not just around the reproductive organs (x). Some of mine was up by my rib cage. 

As I mentioned, it is endometrial-like tissue. This means that it is not the endometrium itself, which is a common misconception (x). 

Endometriosis can also cause scar tissue in the areas around the reproductive organs (x). It usually affects people during their reproductive years (which, unfortunately for those of us who live with it, can be 30+ years). 190 million people with a uterus in the world have endometriosis, which is 10% of people assigned female at birth (x).

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How serious is endometriosis?

Like with other conditions, what counts as “serious” varies. For example, endometriosis can impact your bowel, bladder, kidneys, diaphragm, and more (x). While endometriosis is most commonly located in the pelvic area, it can be located anywhere in the body, including the “gastrointestinal tract, urinary tract, soft tissues, and chest” (x). 

But when endometriosis adhesions affect your organs, it can require major surgery. The NHS says, “endometriosis that’s around or inside the bladder may involve cutting away part of the bladder [and] Treatment for endometriosis that’s around or inside the bowel may involve removing a section of bowel” (x).

Additionally, endometriosis “can decrease quality of life due to severe pain, fatigue, depression, anxiety and infertility” (x). This is true for many chronic illnesses, but it has to be acknowledged as an impact of endometriosis.

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Can endometriosis be cured?

The short answer is no, as confirmed by the World Health Organization.

The longer answer is that, while many people think a hysterectomy cures endometriosis, it doesn’t (x). It can improve endometriosis, but it doesn’t cure it. After all, the whole deal is that the tissue is growing outside the uterus, and it’s endometrium-like tissue and not endometrium. 

Essentially, removing endometriosis and the uterus are treatment options, but they are not cures (x).

Think about it this way: we don’t know why endometriosis happens, so we can’t cure it. You have to know why something happens in order to know how to prevent it from ever happening again.

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How do I know if I have endometriosis?

You’re probably (hopefully) not going to start having endometriosis symptoms with a ton of cysts rupturing, so ask yourself some questions: Is your period really heavy? Are you having monster cramps? Are you also super nauseous? 

When I have an endometriosis flare, I deal with abdominal pain, nausea, and sometimes a period when I’m not supposed to be having one. According to the Mayo Clinic, other symptoms include painful sex, painful bowel movement or urination, long and heavy periods, nausea and/or vomiting, and infertility, which I’ll get into later (x). Like with all chronic illnesses, you might have all of these or just one.

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I think it’s also helpful to think about your pelvic pain in comparison to your normal pain tolerance. While I didn’t notice that I had endometriosis until the ovarian cysts started, I likely had it before that; my period pain just didn’t register as a problem to me because I was already living with excessive pain. But the fact that my period pain sometimes matched my rheumatoid arthritis pain should have raised alarm bells given how severe my RA pain is.

If you have always had really heavy and painful periods – the point where you have to stay home generally for some day(s) of your period – it’s worth looking back at that symptom list and asking your gynecologist if you might have endometriosis. 

Finally, though, I would be remiss to ignore the fact that 20-25% of endometriosis patients are asymptomatic (x). If you are dealing with infertility for no known reason but there is a history of endometriosis in your family, make sure you’ve shared that history with your medical team. 

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How many stages of endometriosis are there?

There are a lot of ways to evaluate and rank endometriosis, but the most common is in stages, of which there are four (x). Johns Hopkins says, “The stages are based on where endometrial tissue occurs in the body, how far it has spread and how much tissue is in those areas” (x). 

Stage one is when there are a few small implants or lesions (x). These lesions are “typically on superficial tissue that lines the pelvis and abdominal cavity or on nearby organs” (x).

Stage two is when there are more implants or lesions than in stage one, and they are deeper (x). The lesions in stage two “are often found in the ovaries, fallopian tubes, behind the uterus, or in the surrounding area” and are more likely to cause scar tissue (x).

Stage three is when there are many deep implants or lesions, there are cysts on one or both ovaries, and there are thick bands of scar tissue called adhesions (x). The lesions from stage three can be anywhere in the pelvic area (x).

Stage four is when endometriosis is widespread, there are many implants, there are many adhesions, and there are large cysts on one or both ovaries (x). The lesions in stage four can be anywhere in the body (x).

While no doctor has told me what stage my endometriosis is, based on these descriptions, it’s probably stage four. Again: endometriosis by my ribs.

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Can endometriosis cause infertility?

Yes, endometriosis can cause infertility (x). In fact, endometriosis is a common cause of infertility in general, as endometriosis can grow on the ovaries and fallopian tubes, as well as cause scar tissue and inflammation to them (x).

Massachusetts General Hospital says, “The normal chance of getting pregnant each month for people with no endometriosis is approximately 10-20%, while people with surgically documented endometriosis have a chance of only 1-10%” (x). More specifically, “The prevalence of endometriosis increases dramatically to as high as 25%–50% in women with infertility and 30–50% of women with endometriosis have infertility” (x).

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Is endometriosis hereditary?

Is it known for certain that there is a hereditary component? Not necessarily. Is it observed that related people tend to have it? Yes (x). Again, the not-knowing coming comes from not knowing exactly what causes endometriosis.  

I will also say that if you suspect you have endometriosis, talk to your family. There might be people with it who just haven’t announced it publicly. This can be helpful in finding a support system as well as having as much information as possible when you talk to your doctor.

There are a lot more people in my life who have endometriosis than I knew. When I started talking about it publicly, I got messages from people who had it but hadn’t shared that information publicly. Obviously there are plenty of people who keep their medical information private. Still, given that endo impacts the gynecological organs, it’s not something that many people share publicly.

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What is an endometriosis biopsy?

Like with other biopsies, this is when a sample of tissue is taken and a specialist looks at it under a microscope to confirm that it’s endometriosis (x). The tissue is generally taken during laparoscopic surgery, which is done to confirm endometriosis as well as remove the adhesions (x).

The laparoscopy itself is not a major surgery, but it still is surgery, and one that can also be used to remove things from your body (x). While your body long-term will be happier without lesions or adhesions in it, removing anything from the body is difficult short term, so make sure you’re fully aware of what the recovery will be short-term. 

It’s very important to note that an endometriosis biopsy is NOT the same thing as an endometrial biopsy, which is used to check for endometrial cancer (x). 

The reason that I’m specifying this is because when you Google “endometriosis biopsy” the first page or two of results are for endometrial biopsy, and I don’t want you to think that your doctor wants you to check for cancer when they instead want to check for endometriosis. 

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What happens if endometriosis is left untreated?

This will vary from person to person, especially because some people’s endometriosis never progresses and other people’s goes from 0 to 100 (x). Make sure you take your quality of life into account as well as the stage of your endometriosis because the stage of it does not automatically line up with its impact on your life (x). For example, someone with stage 1 endometriosis could have a bad quality of life due to pain while someone with stage 4 could have a better quality of life because their pain isn’t as intense. 

The endometriosis stage does not automatically align to pain (x). So it absolutely depends on the person whether or not treatment is worth it.

For those considering treatment, you should know that early treatment doesn’t prohibit it from ever progressing, but it can slow the process down (x). But, again, some people never have their endometriosis progress (x). 

Again, not knowing the cause of endometriosis means that we don’t fully understand why some people’s endometriosis goes to stage 4 and other people’s is asymptomatic. Plenty of people don’t discover they have endometriosis until they struggle to get pregnant (x).

That being said, if there are other people genetically related to you who have endometriosis, take your cues from them. In my personal opinion, people related to me should be aggressive with their endometriosis treatment because mine is very intense. 

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What is endometriosis treatment?

I’ve talked a bit about my endometriosis treatment in the past, as my food intolerances made taking the pill tricky. I now use the Nexplanon implant, which is an implant in the arm that prevents you from having ovulation and periods. One of the things I love about it is that I just get it replaced every couple of years, instead of taking an injection every couple of months or an additional pill every day. 

That being said, let’s talk about endometriosis treatments, both for the overall disease and for dealing with a flare.  

For the first, birth control is probably the biggest option. This can be everything from the pill to the IUD or injections. You might need to go on more than one form, which is what I did at the beginning to best manage those cyst episodes. These medications reduce the hormones that cause the tissue to be built (x). Additionally, as mentioned, some people need to have laparoscopic surgery to remove the tissue if it is causing large problems (x). 

The reason why birth control is the biggest option is because endometriosis is very heavily connected to hormones (x). This is also why endometriosis doesn’t really start until you get your period and it can generally end when you hit menopause (x). 

While we refer to birth control as, well, birth control, it does more than reduce your chance of getting pregnant. It’s the hormonal treatment that makes the difference for endometriosis patients; a condom is a form of birth control, but it’s not a form of endometriosis treatment. 

Now let’s talk about the treatment options for when someone is having a flare. Like with “regular” periods, a lot of the standard treatments can help, like heating pads, hot water bottles, and NSAIDs like ibuprofen. In my case, I have needed to put my heating pad on a higher setting than I do for fibromyalgia pain. 

Additionally, Center for Young Women’s Health has a lot of helpful tips for managing your life with endometriosis. Many of these things are things that I already do for my other chronic pain conditions, but if endometriosis is your only or largest (in terms of magnitude) condition, then it could be helpful to check out.

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