The Bare Basics
This blog may be responsible for bringing some new words into your consciousness - yes, we have the beloved vagina, uterus, and pelvis - but a central focus of the previous blog posts in the Invisible Illness series has been endometriosis.
Before I give y'all a front row seat to my treatment plans, testing, and doctor's appointments, I wanted to go back a bit and start with the bare basics.
What is endometriosis?
According to Mayo Clinic, endometriosis is "an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis."
So, basically, tissue that is meant to live and grow within one centralized part of your body moves out of its little home and tries to make a new neighborhood in another part of your body.
Like any new construction, this tissue's quest to build a new neighborhood causes some disruptions. In a female body, endometrium grows, swells, and sheds from the body during a monthly menstrual cycle. When the endometrium lives within the area it's supposed to call home, this cycle typically isn't an issue.
In the case of someone with endometriosis, just because the cells move location doesn't mean they stop doing their job. Each month these cells still try to act as they would if they lived within the uterus. The cells swell up with blood, thicken, and then bleed out. Oh yeah, baby, period talk time! This isn't your average period, though, because it's as if the sewer system wasn't connected in this new neighborhood. The uterus has a direct opening to release these cells through the vagina (hence, a period), but other areas of the body, like the your bowels, appendix, and ovaries, have no direct pathway to release these cells. So, they get trapped and, to try and escape the new neighborhood, basically jackhammer all around your body looking for an escape route.
And that, my friends, is Endo for Dummies brought to you by Erin! (See, I told you all I wasn't even close to being a doctor!!)
I already know what some of you are thinking (am I psychic? maybe...)
Erin - if the menstrual cycle is what agitates these pains, why wouldn't birth control just fix all of these issues?!
Well, imaginary Internet friend, I don't know! I have attempted to use hormonal and non-hormonal birth control options to control my pains with no luck. For some women, birth control solves all pain related issues. For others, pregnancy can stop their endo pain all together. And, for another lucky batch like me, hormone suppressions make no difference in their level of pain.
Want to know another little fun fact?
With endometriosis, your pain level has no correlation to the severity of your diagnosis. You can have trace amounts of endometriosis cells that cause huge amounts of pain or you can have a moderate pain level and be jam packed with those extra cells.
Wild times happening in the pelvic regions of women around the world.
How common is this problem, anyway?
According to The U.S. Department of Health and Human Service's Office on Women's Health, endometriosis effects more than 11% of women between the ages of 15 and 44 in the United States. That equates to more than 6.5 million women suffering from this disease.
So, diagnosis and treatment has to be pretty easy then... right?
Unfortunately, it's not. Research suggests that it takes women an average of 8 years to receive a formal diagnosis of endometriosis. Endometriosis does not always show up on ultrasounds or other internal images. While symptoms remain consistent, pain levels often fluctuate, making it a difficult disease to describe and track. And, honestly, there's a huge lack of knowledge about endometriosis - to both the public and healthcare providers.
Ok, but once you get diagnosed you can get cured...right... right?
Wrong. Even after a diagnosis, endometriosis cannot be cured. Patients can receive treatment, and may even see a decrease in pain and other symptoms, but endometriosis is not a curable disease.
Hm. Well this got grim. Are there any other issues that endo can cause?
I'm glad you asked!
Yes, endometriosis is known to cause related issues in patients. My muscle disorders, for example, were caused by the cyclic pain from endometriosis.
Other potential issues include (but aren't limited to!): infertility, continuous pain during sex, weakening of the bladder and bowel, fatigue, and even an increased risk of ovarian cancer.
If I had to guess, I would say it also causes continuous feelings of isolation and, potentially, depression since you're so often alone when dealing with an invisible illness.
Ah, the gift that keeps on giving.
What else do I need to know?
Endometriosis is one of many health issues women face that is specific to the pelvic region. Other common disorders and issues include:
Adenomyosis: an increase of endometrial cells that grow within the uterus
Vulvodynia: chronic pain in and around a woman's vulva
Uterine Fibroids: noncancerous growths in the uterus
Polycystic Ovary Syndrome: a hormone disorder that commonly leads to struggles with fertility due to enlarged ovaries and a decreased estrogen level
Pelvic Inflammatory Disease: an infection of the fallopian tubes, ovaries, uterus, and cervix
How can I help someone with any of these health issues?
Be nice. Ask the person how they're doing. Be conscious of what you invite them to - standing room only events may not be ideal. Let them be the last of the group to walk up the stairs, it can be embarrassing to be white knuckling the railing because you're in a flare up and can't walk.
Read things like my blog (heey!). Pay attention to your friend's moods and attitudes, especially if you know they're flaring up. Ask someone what it feels like when they have a flare up. Just help make people feel less alone.
The Invisible Illness series will now be published on exclusively on Mondays. detailing my journey with chronic pelvic pain and the various treatments I am prescribed. The next post of the series will cover my current physical therapy regimen and my first set of trigger point injections!