Well, it’s (late) March, and that means it’s Endometriosis Awareness Month! Not much to be excited about, sorry – except for bringing awareness to such a terrible disease. I was officially diagnosed last year, and that diagnosis took approximately five years to finally hear. That said, I think it’s important to talk about this under-reported disease.
This is a long read with some gory details, but that’s naturally part of the disease. I understand if you’re not comfortable reading about it, I get that way, too. I’m not one who’d feel comfortable spreading awareness about this in person, so a post is a much easier way for me to talk about it.
**I am not a doctor, so please don’t rely on this information completely – I’ve Googled as best as I can, plus added my own experience, so things may not be perfect!
Endometriosis is when endometrial tissue grows outside of the uterus where it usually resides. It causes growths on organs (I’m using the term “growth” widely, as there are many different terms including adhesions, lesions, deposits, implants, etc.)
It can cause organs to fuse together and become displaced, often causes excruciating pain and fatigue, and is defined as a chronic disease as often times it grows back even when it has been treated – though, read on to understand the different ways of removing it and why it may come back.
There seems to be a blanket of secret-ism around the disease, maybe due to what kind of disease it is, and the symptoms it can cause. That’s why awareness is so important.
SOME BASIC STATISTICS
Across the globe, around 176 million women have Endo.
In the US, 1 in 10 women have it.
I couldn’t source an exact answer, but from what I did find, it takes an average of 7-10 years to receive an official diagnosis. Yes, years!
Depression and suicide rates are higher with Endo patients. Understandably so, as chronic pain, loneliness, isolation, lost hope, feeling unable to talk about it, and lack of help and understanding seem like the all too common story.
Since it’s not a very rare disease, and it is hereditary, why don’t more people know about it? Why are symptoms brushed off by society and the medical community that delay the diagnosis and required treatment? The longer it sits brewing in the body, the more harm it may cause. Not just physically, but mentally as well.
- pelvic pain
- abdominal pain (which may very well just be pelvic pain disguising itself… I thought I had stomach issues, and maybe I do, but now I think most of it could be chalked up to the festering Endo)
- bloating – called “Endo belly”
- painful menstrual cramps
- excess bleeding
- fainting (from pain, blood loss)
- pain with urination, bowel movements, intercourse
- loose stools
- lower back pain
- leg pain
- ovarian cysts and cysts specific to Endo, called Endometriomas (or “chocolate cysts”)
…and much more.
WHAT ARE THE STAGES?
The different stages, broken down in simple terms, basically refer to how much Endo is found, where it’s growing, and how deep it infiltrates. Stages range from 1-through-4; 1 is Minimal, 2 is Mild, 3 is Moderate, and 4 is Severe.
An interesting aspect of this disease is that the amount of pain you have doesn’t always directly correlate with the stage you’re diagnosed with. For instance, if you experience excruciating pain, you could have one little spot and could ultimately be diagnosed with Stage 1. Someone with little to no pain or symptoms might have it discovered in surgery for an unrelated issue, only to find out they’re covered in Endo, and they could be labeled at Stage 4.
WHERE CAN IT GROW?
It mostly sticks around the pelvic area: common on the ovaries, Fallopian tubes, surface of the uterus, and the bladder and bowel are somewhat common, too. Endo can actually grow anywhere in the body. I’ve read cases of it even growing on the brain, heart, lungs, diaphragm, and the skin.
Endo represents in thousands of ways, I believe. Red or purple splotches, web-like, black spots, and so on.
HOW RISKY IS IT?
I believe that depends on where/how it’s growing.
If it has damaged the ovaries or Fallopian tubes (and other organs that can “go” safely) so badly there’s no chance of repair, they’ll probably need to be removed.
If on the bowel, sometimes a bowel resection is necessary.
If on the lungs, that may lead to lung collapse (Catamenial Pneumothorax), sometimes once a month!
These are just examples. This is not to mention when depression and suicidal thoughts or attempts are involved.
ISN’T IT PAINFUL ONLY ONCE A MONTH?
Well, for some women Endo does rear its ugly head only during their time of month, but for others it’s more affecting. The pain could be all the time, some of the time, sometimes the pain is very sporadic. For me, it was most – if not all – of the time.
HOW IS IT DIAGNOSED?
The official way is with laparoscopic surgery: through several small incisions, a camera and tools are inserted to poke around and remove any Endo that’s found. This means that diagnosis and treatment is the same procedure.
The first step in seeking an answer, though, is usually to get a scan of some sort, such as an ultrasound, CT scan, or MRI – though ultrasound seems to be most common. Ultrasounds usually do not pick up Endo, unless there’s an Endometrioma big enough to be seen by the scan, or if organs are displaced.
HOW IS IT TREATED?
Hormonal treatment, such as the birth control pill, can help manage symptoms before diagnosis/surgery, but in a way that’s kind of like a bandaid approach. The best current treatment for Endometriosis (as of writing this, March 2017) is Excision surgery. Hormonal treatment is more effective afterward since there’s a “fresh start”, if that makes sense. I encourage seeking a specialist who uses the excision technique, which is physically cutting out the Endo, but I know just how hard they are to find, let alone afford.
Most doctors seem to practice methods that use lasers (these methods are called ablation or cauterization) to burn the Endo, but unfortunately that just gets the surface; it doesn’t remove the whole thing. There are “roots” to Endo which, if not removed, will most likely cause it to pop back up. That was why I looked so hard to find an excision specialist. Some women need a surgery or two each year. The more surgeries you have, the more scarring that can occur, which can just lead to more Endo!
Hysterectomy, to my knowledge, is not a sure thing for “curing” Endo. I’ve heard a lot of women having them as a last resort. This is because Endo can still grow even without the uterus, I’m guessing either if the Endo wasn’t removed properly or if it was hiding in another area. That’s a worry of mine… What if it’s hiding in other places?
In my journey to an answer, I was offered surgery by several OB-GYNs and specialists. I saw other OB-GYNs in between who didn’t offer surgery. All of them mentioned trying birth control pills or Lupron-Depot shots (which put you in a fake menopausal state) first. That was always the reply I got. “Have you tried birth control pills?”
Well, I knew my body doesn’t react kindly to them. When I finally caved and tried a progesterone-only pill (because I learned that estrogen isn’t good for Endo), I found it did control the pain, which is a helpful indicator that the problem is likely Endo or another hormomal-based issue. The side effects I had from progesterone, however, were increased depression and anxiety, heart palpitations, chest pain, and much worsened acne.
The pill was a last resort for me, and I think it helped prove which direction to go. I didn’t stay on it for long, and I recovered from the side effects pretty quickly after stopping them. Some doctors even instruct you avoid controlling the Endo right before surgery because it can shrink the current Endo growths, thus they’d more difficult to find in surgery.
Surgery is a big step to take, especially when you’re not sure what you’re working with…
What happened for me, was that I visited a specialist who performed an ultrasound themselves and pointed out things to me on the screen that seemed amiss. The anxiety that takes place when a technician, not a specialist, performs an ultrasound and can’t tell you what they find is downright agonizing, so this was great… not great in the usual sense, but a great start. A great start to a diagnosis.
When my specialist told me they were almost certain I had Endo and possibly its sister disease called Adenomyosis (Endo growing in the wall of the uterus), I felt much more reassured going ahead with surgery. I had heard of Adenomyosis a little bit before hearing that I might have it. Hearing that I most likely have one, if not both conditions, made my outlook that much more bleak. I grew teary and in my head, I was thinking, “Really?”
Post surgery, it was concluded that I have Mild to Moderate Endo, accompanied by a most likely case of Adenomyosis, but that can’t really be confirmed without either an MRI (which isn’t always accurate for this diagnosis) or a hysterectomy where they dissect and biopsy the uterus to see if it’s in there. The only real cure for Adenomyosis is hysterectomy. More on the Adenomyosis later, I suppose…
I’m not on any medication to control things right now because I don’t have any options to work with. Unfortunately, in addition to Endo and Adenomyosis, I was diagnosed with PCOS, or Polycystic Ovary Syndrome. That is what is referred to as “the trifecta.”
I fear taking estrogen will cause the Endo to come back, progesterone isn’t good for my PCOS, and besides all that, hormonal medications tend to increase my anxiety and depression to an unmanageable level – plus the awful physical side effects like heart palpitations, and the risk of blood clotting or stroke. So I don’t have any options in that regard.
I have tried natural herbal supplements but they caused negative side effects, and for one month I tried an herbal supplement marketed directly for Endo that seemed to help slightly – but it’s too expensive, and I’m still curious to see how the surgery may have helped, anyway. It can take 6 months or so to really notice improvements.
I’m not following a strict diet either for my Endo – avoiding certain foods that cause inflammation, including dairy, meat, gluten, and sugar can help some women’s flare-ups.
According to my specialist’s opinion, there’s a very low chance of the Endo coming back. Once it’s excised, there’s a high chance it’s gone for good.
Is it really chronic, then? (after excision treatment?) It sure feels that way. But I have lots more going on as well. How annoying it is to not know what is causing each pain…
Do I believe it’ll come back? Maybe. I’m feeling pessimistic at the moment.
WHAT CAUSES IT IN THE FIRST PLACE?
There are many theories on why Endo occurs, but not one that’s simply agreed upon yet. Perhaps there’s more than one reason. I don’t understand medical stuff too well, so bear with me! I’ve forgotten more than I can remember!
Having previous pelvic surgeries, such as a C-section, may leave you with scarring or adhesions, and in some cases, the migration of endometrial cells (sorry, that’s all I got! I’m very tired.)
Maybe you were born with it. Theories state as a fetus developed, something “went wrong” and some endometrial cells were left outside the uterus (or something along those lines.)
Menstruation flowing the wrong way, back through the Fallopian tubes and transferring endometrial cells into the pelvic/abdominal cavities (called retrograde menstruation.)
A scary theory called the “induction theory” theorizes that peritoneal cells can transform into endometrial cells! Another theory hypothesizes that endometrial cells travel through the bloodstream… None of these are very comforting.
There are many more theories out there…
Lastly, and one of the most devastating side effects that can accompany Endo, is infertility. This can result from ovarian cysts/endometriomas, blocked or damaged tubes, scarring in the pelvis, and just a mess of things overall. If things aren’t where and how they should be, things likely will not work the way they are supposed to. There is much debate on this topic, and I sympathize with those of you who are going through this, especially on top of having this terrible disease.
Some women bloat so much that they appear pregnant, and if they’re already struggling with fertility, that is like a big slap in the face. The bloating, a.k.a. “Endo Belly”, makes it that much more difficult to look in the mirror and wear fitting clothing without appearing to have a bun in the oven.
HOW TO SPREAD AWARENESS
Listen, learn, be supportive, perk your ears up when you hear someone you know has Endometriosis or any of the symptoms, understand that it’s debilitating at times, and how lonely it can feel to be trapped in a body that is conspiring against itself.
Try to remember that a visible person may have an invisible illness, and not everyone is exaggerating their pain.
Share, comment, like, etc. #EndometriosisAwarenessMonth
Do you or anyone you know have Endo? What was your journey like? Do you suspect you may have Endo?
Best wishes, and thank you for reading.
Photo from Pixabay.com, by ArtsyBee