March is National Endometriosis Awareness Month, and I can vouch that we definitely need more awareness about the condition. I was 10 when I started having issues, but it wasn’t until I was 22 that I finally got diagnosed with endometriosis, and my 12-year journey isn’t atypical. On average, it takes 7 to 10 years to get the diagnosis, and for it to take longer is common.
For me, it was a condition I’d heard about here and there, but I didn’t really know the basics, much less how well my various symptoms fit. Doctors weren’t sharing the knowledge, and I didn’t know anyone with it, despite the fact that 1 in 10 women suffer from it. Nowadays, I am active in a number of endo support groups, and I notice other women facing the same lack of information – so let’s start the conversation!
I also want to say, while I will be using the term women in this post, this is not meant to indicate women are the only ones who suffer from endometriosis, just the most common. Anyone can have endometriosis, and while the likelihood is significantly decreased if you don’t and have never had a uterus, it is NOT impossible!
What is endometriosis?
Caveat: I’m not a doctor.
Before I was diagnosed, I’d been told that endo was basically when the tissue lining the inside of a uterus grew on the outside. That’s how everyone I knew understood it. And sure, that’s a super-simple, not entirely inaccurate description, but it’s also not completely true.
Essentially, endo isn’t actually the uterus-lining tissue, but a different tissue that is just remarkably similar. However, while tissue inside the uterus bleeds monthly and is flushed out of the body (and that’s how we get periods, kids!), the endo tissue bleeds into the abdominal cavity where there is no exit. The other major difference is the uterine tissue relies on the body’s hormone cycles, whereas studies are showing that endometriosis can develop its own hormone supply, as well as its own nerves and blood vessels. That means the hormone fluctuations that irritate endo may not match the body’s standard hormone cycles.
The endometrial tissue gets irritated by these hormones and bleeds into the abdominal cavity. This forms adhesions to form, essentially little ropes of scar tissue, and these adhesions need somewhere to land, for instance, the appendix, the intestines, or the bowels. Now the patient has ropes of scar tissue connecting these organs to the uterus, and when the endometrial tissue gets irritated again, the adhesions get yanked around, which pulls on the organs. More irritation, more scar tissue. It’s a never-ending cycle.
What causes endometriosis?
We’re not entirely sure. I’ve seen studies and hypotheses that it has a genetic component (which seems to be proven true in my family), that it may have environmental causes, that it may be luck of the draw. I just read a study the other day that indicates that roughly 10% of still-born fetuses have endometriosis present, indicating it’s there from birth, even if symptoms don’t start until later. Regardless of the causes, there’s no indication right now that there’s any way to prevent endo.
What are the symptoms of endometriosis?
This is a complicated question because the symptoms can vary pretty significantly. One common one is pain. Imagine normal menstrual cramps (so I hear..) times a billion. And the pain doesn’t have to come once a month. It can come around your period, it can come randomly, it can come everyday. As much as endo is considered to be a reproductive health issue, it has fairly little to do with a person’s reproductive cycle.
However, as common as pain is, not having much pain, or not having pain at all, doesn’t mean endo is off the table, and pain levels are absolutely no help for determining the severity of endo. Plenty of people have stage 1 endo but suffer from extreme pain, and a number of people have stage 4 with no pain and few, if any, symptoms.
Other symptoms might include infertility, diarrhea and constipation, fatigue, nausea, and bloating. Even heavy periods can be a symptom, but more so because adenomyosis often goes hand-in-hand with endo.
How is endometriosis diagnosed?
As you can see, the symptoms are vague enough to indicate any number of conditions, so they aren’t much help towards diagnosing the condition (although with any of those symptoms, endo should be on the list of things to look for – and it’s not!). Doctors may suspect endo and prescribe birth control for management, or may even “diagnose” endo from the presence of those symptoms, but…
There is only one way to diagnose endo and that’s through surgery.
Despite claims otherwise, it is not guaranteed to see endometriosis on xrays, CT scans, MRIs, or even ultrasounds, and what is seen on those scans may not actually be endometriosis. Reduction of symptoms on birth control does not guarantee endometriosis as the cause, and a lack of response to birth control does not rule it out.
How is endometriosis treated?
So, it’s important to note that in most cases, endo can’t be cured. (I won’t say all, because I’ve heard of some people who managed to have all the affected tissue removed, and haven’t experienced any regrowth…but I will say this has not been my experience in the least). What can be done is simple management, and it varies from case to case. Some people have luck slowing the growth of endo by taking hormonal birth control, while for others, this may have no effect, or even be detrimental.
More effective treatments are surgically-based. Many women have ablation done, where the endo lesions are burned off, but this is really only effective on smaller lesions, and it can’t reach the roots of deeply-infiltrating endo. The gold standard for treatment is actually excision, where the lesions are cut out, all the way down to the base. However, it can be very hard to find a doctor who is properly trained in this technique, and it can only be done on visible lesions, so it’s very hard for them to get all of the cells.
Regardless, ablation and excision can do wonders for pain levels – in my case, I had excision, and it bought me six wonderful pain-free months after my first surgery, and three months after my second. And after my second, it’s taken a decade to reach the point where I can’t really postpone another surgery any more. For me, the surgery is absolutely worth it.
It should be noted as well that a hysterectomy won’t cure endometriosis – but that doesn’t mean it can’t help. I had adenomyosis as well, so my hysterectomy did cure that, but it also gave the adhesions one less thing to yank on when they are irritated (which is constantly!), so no uterus means a lot less pain for me. On top of that, I have a weird, unnamed hormone issue that manifests in multiple ways, but irritated my endo, and by having a radical hysterectomy, my body is now misinterpreting less hormones, which seems to help. Is it perfect? No. But if your doctor suggests a hysterectomy, it may be worth considering for your case (and consider it very carefully – it is NOT the right choice for everyone!).
How to help
If you have had any issues and symptoms, you may want to discuss the possibility of endo with your doctor, and know that you have the right to find a different doctor if you feel like you’re not being heard.
But for people who don’t have endo, we could use your help too! On an intimate level, support the people around you who have endo. Understand when they cancel plans – sometimes it just hurts too much to put pants on! Bring them tea and a heating pad, and watch a movie instead. Listen to them complain about pain and never never brush it off – we feel like we’re weak or crazy already. Maybe go to doctor appointments with them for moral support – it can be hard to get taken seriously, and it helps to know there’s one person in the room who doesn’t think we’re exaggerating (and that one person often isn’t us).
On a larger scale, we need more research into endometriosis. Donating or raising money for endo groups, such as EndoFound, the Endometriosis Coalition, and the American End Of Endo Project, can have widespread effects as far as finding better treatments, learning more about causes, and educating people so that they don’t have to suffer from an unknown condition for years before they get answers.