It's a bit of a rant

Endometriosis is a condition where the endometrial (uterine) tissue thickens and grows in places it’s not supposed to. Generally, this occurs on the outside of the uterus rather than on the inside, but endometrial cells will travel through a woman’s entire body. In a woman unaffected by Endometriosis, the cells will thicken, and, provided she is not pregnant, will slough off the lining of the uterine walls and pass these cells out of the body in the process known as menstruation. The process does continue, however, in a woman who has endometriosis; endometrial tissue responds to changes in a woman’s hormone levels – when her body tells her to menstruate, she does.

And if that endometrial tissue has lodged in her abdominal cavity or in her lungs, it bleeds. It can form lesions, cysts, and many other complications (including vertigo!).

It is estimated that as many as 1 in 10 women suffer from endometriosis. The World Endometriosis Research Foundation was established only in 2006, which is a little late to the gate, I think. Better late than never, though. But I’m ahead of myself….*ahem*…as many as 1 in 10 women suffer from endometriosis. It can cause a variety of symptoms, from intense cramping and extremely heavy (even constant) blood flow, extreme pain, bloating, painful intercourse, nausea, vomiting (usually related to the pain), painful or frequent urination or bowel movements, lowered fertility, and can even create susceptibility to other diseases, including some kinds of cancer.

In the past five years, I have known more than ten women who have been suffering from endometriosis for five years or more. They sometimes bleed constantly; they often have to miss work, or cannot work. They have left or stalled their educations, their careers, and their families because they bleed so heavily for two weeks a month that they cannot leave their homes, or they are in so much pain they cannot work…and chronic pain is one thing that can lead to, among other things, depression. These women are not only in constant pain, worry, and an ill state of health, but they are coddled, or their conditions are pooh-poohed by the medical profession.

This is what really burns me up. Okay, no, this is the *second* of two things that really burn me up. I’ll get back to it. If I don’t, remind me.

The first thing that really burns me up is that the first time young women hear about endometriosis is when they’ve already been through fifteen years of hell. This is something that should be **mandatory instruction** in health class for girls AND boys. ONE IN TEN WOMEN have endometriosis. Ten percent of the female population. That’s a hell of a lot of pain and bleeding. Why is Health Class not about health anymore? Why is it all about drug awareness and how to put condoms on bananas and how to wash your hands, but nobody talks about things like the clitoris and circumcision and endometriosis and prostate cancer? Why is it not preventative? Not that it’s BAD to talk about drug awareness and how to put condoms on bananas and how to wash your hands. But what health class you were ever in told girls to pee after having sex to reduce the risk of a bladder infection?

What health class talked about yeast infections and what causes them and how to get rid of them and what happens if you have sex when you have one and the fact that boys can get yeast infections too. Or bacterial vaginitis? Or testicular hernias? Sure, we all saw pictures of pubic lice, and we oooohed and aaaaahed and ‘oh GROSS’ed, but who mentioned anything about HPV (genital warts, for those of you who don’t know it yet) actually being one of the leading causes of cervical cancer? (And, as an aside, can you believe there are people who don’t think girls should have the *option* of being vaccinated against it?)

Now, on to the second thing that really burns me up.

I don’t know what it’s like to be a man, obviously. I’ve never had to go to the doctor and ‘turn my head and cough’ while someone gently cups my nutsack. And maybe this is just as bad for men; I don’t know. Young women go to the doctor complaining of cramps and bloating and painful bowel movements, and do you know what they’re told? “That’s normal.”

It is NOT normal. If you eat a healthy, balanced diet and get lots of exercise and plenty of fluids, you should really not be having incapacitating cramps, heavy bleeding, and painful bowel movements. If your hormone levels are where they should be, your periods should not last for two or three weeks. They should not be irregular and debilitating.

But this isn’t the worst. It really isn’t. Once you’ve been seeing doctors for years, going over and over and over and over these horrible symptoms…once you’ve been prescribed painkillers and antidepressants and hormone replacements and The Pill and ‘just rest’…once you’ve been through this for five, ten, fifteen, thirty years, and once the doctors figure out you might have endometriosis, do you know what happens?

Usually, dick all. Because the only test that currently completely confirms whether you have endometriosis is a laproscopic surgery, you get put on a waiting list. I knew a woman who was on that waiting list for three years. Just for the *diagnostic* procedure. She’d already had kids, and just asked for a hysterectomy in the beginning. And the doctor refused; said absolutely not because she was too young (mid thirties) and didn’t understand the implications of an hysterectomy. So she waited, in excruciating pain, lost two jobs because she could only work two weeks out of every month, just to have the laproscopic surgery, where they told her she had endometriosis and they had to schedule a hysterectomy, for which she had to wait another nine months!

It’s effing bloody ridiculous.

It’s pretty difficult for me to imagine that if there is technology that lets you see the zits on an unborn baby’s backside in utero, it can’t somehow be used to help diagnose endometriosis. Or if you can see a mitochondrial fart in an MRI or PET scan, you can’t see endometriosis. Or if you can detect West Nile Virus from a hobo’s blood sample, some kind of biopsy or blood test can’t be figured out to see if there is endometrial tissue where it oughtn’t be.

Now, the World Endometriosis Society helps to host the World Congress on Endometriosis every year (there have been ten), and that’s good news. And there is some research that indicates that some of the rise in Endometriosis rates could be environmentally linked. That kind of research is difficult, though, because the fact remains that womens’ reproductive health is still somewhat taboo. I’ll save my rant about how pissed off I get when people get ‘grossed out’ over menstrual products or how cheesed I am that some putz is making so much money off of douche and ‘scented wipes’. The bottom line, if you’ll pardon a bit of a pun there, is that since women’s reproductive health has not really been taken seriously since the ‘riddance’ of community midwives, it’s difficult to get accurate records. In 1962, a woman with endometriosis probably would just have been prescribed valium and possibly might have been assessed for ‘neuroses’.

In the 1970s, she would have been given MASSIVE amounts of estrogen and progesterone to most likely stop her periods altogether (there’s another rant about ‘birth control’ that stops a woman’s cycles for three months). It’s just really difficult to tell how long women have been suffering from this condition in these numbers.

There are several herbs, by the way, that can be used as uterine tonics. The safest is red raspberry leaves. Make a tea with the loose leaves. Of course, you should check with your doctor or midwife before you begin taking any herbal medicines.

But anyway, this has been making me peevish for the last few days. I want more mon
ey, time, and effort devoted to simple things like educating young girls about their bodies and about what conditions are common out there (and I consider 1 in 10 to be pretty bloody common), and to finding better ways of diagnosing reproductive health issues. Okay, GO!

cenobyte
cenobyte is a writer, editor, blogger, and super genius from Saskatchewan, Canada.

3 Comments

  1. would just like to add a need for hormone and “female” research and education in general rather than just throwing anti-depressants at the problem all the time. A lot of this, even endometriosis, has been traced back to hormone imbalances which can be both holistically or medically treated…in fact, how about the medical profession just taking women more serious in general?

  2. You’re on the right track as far as the medical profession goes, I think – as in “cause a stink”.
    I read that prostate cancer research and medical procedures were about 15 years behind that of breast cancer. Why?
    Because women have done for themselves and demanded better treatment. They’ve demanded to be taken seriously. That and they actually go to the doctor once in awhile.
    Go get ’em, Ceno!

  3. *ahem* I know I have been absent. For that I apologize. But this entry hit me. Hard. I am getting ready to head into that operating room in 13 days to actually help me cure this disease that has robbed me of not one but two children, a lifetime of living pain free, a healthy marriage, and a career that flourished.
    You have just described perfectly my epic-endo-journey to the center of the nine levels of hell.
    And while I am looking forward to the days after the one week stay in the hospital, and the ten weeks of recovery time, I am still scared shitless.
    The first and last time I met you, I was coming off the morophine allergic reaction from a cervial biopsy that…ironically you slaped me silly into getting done.
    How?
    Because I was complaining onine about my pain, bleeding, anemia, migraines etc etc etc..and you said oh fuck! Get to a dr already and DO something for yourself. Had you not done that I would still be that very sick person.
    So, when I am in the hospital for a week (total abdominal hysterectomy = cut from hip to hip and public bone to above the belly button so they can actually GET out all the endo) I will then really feel thankful.
    Please forgive me now for cowering and being scared and for doing the headinthesand thing.
    The up side?
    There is a dr in saskatoon who is the head of Obs and Gyno for the province who took a look at my entire history (his story) and felt so flucking bad about me not being taken seriously, that he said while he was there anyway, he’d give me a tummy tuck and disguise it as scar removeal.
    I love this Dr.
    I only wish more women could be as lucky as I am.
    I’ll let ya know about the surgery to end this endo life and start living pain free when its all over.
    peace.
    (and thanks for writing this. please consider sending it to the Leader Post or the Star Phoenix.)

i make squee noises when you tell me stuff.

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