Endometriosis Sufferers: Women Warriors

“ ’Tis most strange, Nature should be so conversant with pain” ~William Shakespeare (Pericles, III, ii)

I have endured 396 rounds of torture. I am a woman warrior.

Every month of every year for the past 33 years, I have withstood the attempts of my uterus to slowly and silently kill me. And for the past 10 years or so, the ovaries and other parts of my pelvic region have joined in the war on my pain receptors. Like millions of other women, I have endometriosis, and I have no doubt they will all agree with me that is it exceptionally awful.

I read a news article just the other day that told the story of a physician in England who is lobbying to convince UK employers to offer paid “menstrual leave” each month to women employees (beyond regular sick leave), and especially to those that suffer from endometriosis and painful periods. Apparently this already exists in Japan and China. I was amazed that there are workplaces in the world that recognize this as a serious issue and are willing to acknowledge the toll it can have on their workers — after all, half the workforce in many countries is made up of women, the grand majority of whom deal with this issue every single month!

So why aren’t we having this discussion in the American workplace?!

I would lobby in Washington for this benefit. There have been many times I have had to either call in sick or leave work due to my period and endometriosis pain. I’ve had to call my parents to come pick me up — a grown, capable woman — because my period pain was so bad that I almost fainted and didn’t feel I could safely drive home. Once I rode the bus to work but my period started after I got there. After an hour doubled over in pain in the women’s restroom, I had to call my mom to come get me since I didn’t have my car; if I’d stayed at work that day, I guarantee you I would’ve been curled up in a ball on the floor of my cube, unable to sit upright, much less able to concentrate on actual work. I would hope most bosses would agree that’s not exactly a productive outcome…but would most of them care enough to create a new leave policy about it?

THIS IS NOT OUR FAULT AND WE CAN’T JUST “GET OVER IT”!”— I want to yell to my fellow women warriors who have to deal with this scourge for one week every month (or even more, if your symptoms also flare up around ovulation), and to the male bosses and coworkers and family members who cannot ever truly understand what we go through, what we dread as we stand and stare at the calendar and count down to another personal horror movie, over and over again. I know that we are strong women (hear us roar), but truthfully, how many of you out there have wished more than once that you could’ve been born a boy? A blissful, ignorant, carefree, never-have-to-time-the-planning-of-every-life-event-around-your-period, boy?

Endometriosis is a widespread condition suffered by millions of women around the world.

It consists of endometrial tissue — the tissue that lines the inside of the uterus and is what normally sloughs off each month during a woman’s period—migrating outside of the uterus to other parts of the body and forming tissue lesions where they aren’t supposed to be. Usually it just wanders around inside the pelvic region and attaches itself as lesions to the ovaries, fallopian tubes, the outside of the uterus, the pelvic floor, and inside of the pelvic walls. However it can also attach itself to the bladder, the bowel, the stomach, even the lungs in some cases. It’s a horrible condition with no known permanent cure. It also causes life-altering problems of infertility for many women.

The lesions of this endometrial tissue act like scar tissue, except it’s not supposed to be there, and instead of healing a wound like normal scar tissue, it hinders the activity of other organs and can cause them to malfunction. Also, just like normal endometrial tissue inside the uterus that bleeds once/month, so do all these other endometrial tissues — they bleed where they are attached to other places, and that blood — leaking out into areas it’s not supposed to — causes incredible pain. Frustratingly, doctors and researchers don’t yet really understand what causes the endometrial tissue to start migrating outside of the uterus in the first place; once they do, hopefully a cure and better treatments can start to be realized quickly thereafter.

From the very beginning, my periods were always very painful. Eighth grade and age 13 for a girl is already wrought with tough times, but add in crippling period pain and embarrassing rushed trips to the girls’ bathroom several times a day, and that was pretty much the worst school year, ever. Back then, for some cruel and unknown reason, there was no sanitary waste disposal in each bathroom at my school, so all the girls unlucky enough to have already started their cycles would just leave their used items rolled up on the floor next to the toilet; it was traumatic and disgusting to me. It was a horrible start to that phase of my life, and I felt I was doomed to suffer in silence from that point on each month until (what seemed like it would be) the end of time.

Also from the beginning, and lasting to this day, it’s not just my uterus and abdominal region that aches and burns and hurts during each cycle (the best way I can describe it is like a hundred tiny dull knives trying to stab their way out of my abdomen, which also feels like a vice is clamping down on it as hard as possible every few minutes, then letting go, then clamping down again); I also get the joy of experiencing extreme pounding pain in my right thigh, I guess there must be a nerve that runs to that region that carries all the pain in it, but whatever the reason, it’s horrendous. I can remember one time when I was about 18, driving on a highway to get home from a job I was doing about 30 miles south of town…the period pain in my right thigh was so incredibly bad that I started hitting and punching it with my fist over and over, trying to abate the pain or somehow knock it out of me. I was bruised black and blue on that leg for days thereafter.

About 10 years ago, I started having problems with ovarian cysts. At first they were just simple cysts (fluid filled ones that would come and go on their own, they’re fairly common and normal), but after a few years, my period pain started getting much worse (which I didn’t think possible, but it was) and an ultrasound diagnosed several large “chocolate” cysts. What a horrible word to associate with a horrible condition; chocolate is supposed to be a good thing, but it’s not in this case. The other term for them is endometriomal cysts — large, solid cysts filled with old blood and other organic materials that have attached themselves to and within both of my ovaries. (They are apparently the color and consistency of chocolate when a surgeon removes them, hence the name.)

Surgery isn’t an option for me at this point; if they went in to take out the cysts, they’re so ingrained within my ovaries that they’d have to take those out too, which would throw me into immediate “artificial” or surgical menopause — which I’m not willing or ready to do, and which my doctor doesn’t recommend if we can avoid it. Surgical menopause can cause issues down the line with reduced overall lifespan and other serious health issues that I’m not willing to risk. I know for some women, things get so incredibly debilitating and bad from their endometriosis that surgery is the only option; the surgeons have to do exploratory surgery (the only true complete diagnostic method at this point) and scrape off or laser-cut out all the lesions they can find — and even then, the lesions will often return, sometimes every worse than before. (I also get horrible throbbing pain on my pelvic floor region, which makes it impossible to sleep some nights and also makes my doctor and I think there may be some lesions that have self-attached in that area as well.)

Every woman has to make their own decision regarding what’s best for her.

I hope I don’t get to that point or that the endometriosis doesn’t worsen for me — I’m trying to hold off and wait for menopause to occur naturally, which I’m hoping and begging comes as early as possible for me. I never thought I’d wish that for myself, but I bet I’m not alone in wanting these monthly torture-fests to abate ASAP.

So for the past six years, my doctor and I have just been in a watching and waiting mode; twice a year I go in for an ultrasound and exam to check the size of the cysts and make sure they’re not exploding in growth. We also check certain blood test levels to check for out-of-control inflammation. So far, I feel lucky to say my cysts have stayed pretty steady; some months they do get bigger or an extra one pops up, but other months they actually shrink a little bit. I even feel a little sorry for my poor ovaries, it always looks on the ultrasound screen like they’re being suffocated or consumed alive by these looming little dark round monsters. I guess we’re all living with monsters of some kind within us though, aren’t we?

But for my fellow women dealing with endometriosis, I salute you. Waging war every month, repeatedly, for most of your life — it’s exhausting, both physically and mentally.

There are countless relief strategies out there that are touted to help us get through it, although I’m not sure any of them work too well. Ibuprofen helps me a bit, sometimes, but if I really took the amount I wanted to in order to get the pain levels to manageable, then my stomach and kidneys would seriously suffer. I drink a gallon of ginger tea during my week each month, willing its anti-inflammatory effects to somehow make a difference (it helps with the dehydration that is also inevitable due to the severe diarrhea that endometriosis often causes for many). I’ve also cut way down on my dietary intake of soy because of it’s estrogenic properties (endometrial tissue feeds on estrogen). Caffeine should be avoided if possible, exercise if you’re able, and eating fresh, natural foods will help to replete some of the energy that the endometriosis is all too happy to zap from you.

For me, it’s more the mental battle and strength of mind that gets me through it most times. I know that if I can just make it through the first 48 hours of my period each month, I’ve won the war for that round. I call those first two days my “Survival Days,” and I give myself some slack during that time. I sleep later if I can, or allow myself a nap; if I need to spend an hour (or two or five) stretched out flat on my living room floor or curled up in a ball in bed, that’s what I do. I try to stay distracted when possible, anything to make the time go by faster. And then those two days are up…I’ve survived; at least for another 26 days or so.

Do what YOU need to do to get through it, and don’t feel bad about it. We ARE women warriors.

Image courtesy of Unsplash.