Endometriosis 101: A Crash Course

It's possible that everyone visiting this blog at this point already knows me and therefore knows allllll about endometriosis since, frankly, I feel like I never shut up about it. But on the off-chance that some of you are new friends (hi!), and since March is endometriosis awareness month, I figured it would be best to get this blog going with a crash course in endo. If you already know everything, then...I guess move along. But since most doctors don't even understand it...

I saw this meme last night on the  @endostrong Instagram account  and have not stopped laughing.

I saw this meme last night on the @endostrong Instagram account and have not stopped laughing.

Here are the basics (in not-too-clinical terms):

I am 99 percent sure this Bitmoji was created by someone who has endo.

I am 99 percent sure this Bitmoji was created by someone who has endo.

  • In normally functioning reproductive systems, when a woman has her period every month, she is shedding her uterine lining (the endometrium). When a woman has endometriosis, tissue similar to the endometrium grows outside of her uterus.
  • Outside could mean anywhere -- around the bowel, ovaries, uterus, and around the peritoneum, the thin membrane that I suppose we can basically just call an organ sack. But the tissue doesn't just have to remain in the abdomen; rogue tissue has been found in some patients as far away as the lungs or the brain (wtf).
  • Endometriosis is chronic and cumulative. This means there is no cure, and with every menstrual cycle it worsens. The tissue causes scarring, and the organs around it may become stuck to each other and the peritoneum.
  • Some women may experience nothing at all. But for others, the pain is excruciating. It starts with painful periods, progresses to pain in between periods, and eventually some women have only a few pain-free days a month.
  • Other symptoms include abnormally long and heavy periods, painful sex, crazy bloating (endo belly), bowel and urinary problems, neuropathy (nerve pain in the legs), infertility, and fatigue (it's exhausting being in pain all the time). 
  • No one knows the cause, and it is regularly misdiagnosed for YEARS despite the fact that it is estimated that 176 million women have it worldwide (that's one in 10).
  • There is evidence that the best treatment option for women with endo is laparoscopic excision, in which a trained specialist cuts the evil tissue away. Yet the majority of women are treated with hormonal contraceptives or by general gynecologists who perform ablation, in which they burn the tissue away. The end result is women with endometriosis wind up having multiple surgeries over the courses of their lives with the hope of only having some relief for at least a few months at a time.

OK, so why am I writing about it? Wouldn't I rather be writing about other things lifestyle bloggers are writing about? Fun things, like food, accessories, workouts? Well yes, and I'm going to. But endo is the linchpin of Cramped Style, and here's why.

For starters, IDGAF about people who are squeamish over periods anymore. In fact, I'm on a mission to get everyone to GET OVER IT and start talking about these things. Endometriosis is extremely under-researched, under-diagnosed, and under-treated in this country and around the world, and I am over it. The first step in finding a cure is to get people to listen, to raise awareness, and to dispel the myths around it.

Secondly, I selfishly need a silver lining, and it can't just be "well it could be worse." Because sure, my endo COULD be worse. I could have something worse than endo. It could ALWAYS BE WORSE. But since people seem to like my writing, I may as well put my voice and my lemon body to use and relentlessly talk about what it's like living with this chronic, debilitating disease.

So please feel free to share my stories you read here. Follow me on Instagram @crampedstyleblog. Come tell me YOUR stories. I want to hear them because I remember how isolating it was when the doctors seemed mystified why my first surgery didn't help. Tell everyone you know, male and female. Nothing about being a woman should be stigmatized anymore, least of all, abnormal menstrual cycles.

LET'S MAKE PERIODS GREAT AGAIN.

Big thanks to my homegirl Sarah for this amazing #MPGA bag that she sent me after my second surgery. Photo by Ryan Detter.

Big thanks to my homegirl Sarah for this amazing #MPGA bag that she sent me after my second surgery. Photo by Ryan Detter.

If you haven't read my Medium series from 2016 on my life with endo, please start here, with "My Hormones Hate Me." But ever the editor, I have to tell you there are a few errors in these essays I'd like to clear up. I've learned a lot since 2016, including that many of the things my doctors told me then were false. And I don't want to be someone who continues to spread endo myths, however small or nuanced they may seem. So corrections by essay:

  • In My Hormones Hate Me, I said: "For those who don’t know, endometriosis is a condition in which tissue that grows inside of the uterus begins to grow outside of it." As noted above, this is not exactly true; the tissue that grows outside of the uterus is SIMILAR to that which grows inside of it. It is not the same.
  • Not endo-related, but in He's Just Not That Into Your Endometriosis, I said: "I still don’t think Nicky is the bad guy he said he was, but suddenly I stopped seeing him as some poor, misunderstood guy plagued by an easily curable case of self-doubt and clearly saw him as a scared, immature little boy who had buckled under the weight of self-induced pressure to be “perfect” when all I needed was for him to simply be there." It turns out I was wrong x 2. It wasn't self-doubt and immaturity. I found out after publishing this essay that he had actually cheated on me the week I had surgery, so maybe he IS the bad guy he said he was.
  • In He's Just Not That Into Your Endometriosis, I said: "Hell, Donald Trump might come along and make a serious run at becoming leader of the free world." WELL SHIT.
  • In Are You There, Doctors?, I said: "But I was convinced something was wrong with my hormones; she had fixed everything structurally during the surgery, so it must be hormonal." My first surgery was an ablation surgery, in which the doctor burns away the tissue. This leaves the tissue stuck to your organs behind and causes additional scarring. So the doctor did not, in fact, fix ANYTHING structurally.
  • In Are You There, Doctors?, I said, "He planned to give me two three-month injections of a pituitary gland hormone that would put me in menopause temporarily without putting me at risk for another clot. This, he said, would burn away the microscopic tissue and give my distraught ovaries a well-deserved break." While this drug, Lupron, does give you a break in the form of menopause, it DOES NOT burn away endometriosis tissue. This is patently a lie, and I have a LOT to say about that, so I will address it in more detail in a later post.

But for now, I'm off to continue plotting ways to make periods great again. 

xo,
S