There’s no getting around how painful and disgusting living with a fistula can be. I am fairly certain that my period was the most dreaded part of those three years of fistula doom. For those of you who have never experienced living with a fistula, let me paint you a picture:
One day, after a painful ordeal with an abscess, you learn from your doctor that you have developed what is called a “fistula.” A lame explanation accompanied by crude drawings ensues, and you learn that there is currently a tunnel connecting your rectum to an area right near your vagina. You are now constantly leaking fecal matter. Your life becomes a constant battle to keep your nether regions clean, to manage pain and discomfort, to maintain a shred of dignity and some semblance of sanity. To make things extra fun, your doctor places a giant rubber band in your ass, which hangs down and wreaks havoc on your butt cheeks and surrounding tissue. As if all of this wasn’t horrific enough, you are a woman. Once a month your uterus sheds, and suddenly an already unpleasant aspect of womanhood becomes HELL. Now, not only are you leaking fecal matter, dealing with chronic pain, and have a giant rubber band sticking out of your ass, but you are bleeding all over the place. You become intimately familiar with all of the adult diaper options. You try to come to terms with a new normal.
So, how does one cope with having a period while living with a fistula? My first piece of advice? Ditch your tampons. If your doctor hasn’t already told you this, I’m telling you now. Inserting a tampon while you are leaking fecal matter is a great way to ensure that bacteria and fecal matter will enter your vagina, which will open you up to all sorts of infections you do not need to add to your plate. If your fistula is rectovaginal, that whole area is going to be super tender and extra sensitive anyway, so you definitely don’t need a big, abrasive chunk of cotton up in there.
If you are a diva cup user (or whatever “cup” brand you prefer), the same applies. Ditch it for now for the same reasons.
Here are your options, and what worked for me:
-overnight pads with wings
-overnight pads with wings on an adult diaper for super heavy days
-for those who wish to be eco-friendly I highly recommend GladRags. They are washable, reusable pads, and are actually really good for lining your underwear for bad leakage days even when you’re not on your period. There are also a few shops on Etsy that will custom design reusable pads for you.
-frequent washing. Invest in a squeeze bottle with a spray nozzle. Clean your vagina and bottom regularly throughout the day.
-Sitz Bath every chance you get. Scroll further down for my entry on Sitz Bath and hygiene.
-ask your gynecologist about the possibility of skipping your periods altogether with birth control. This may not work for those of you who are sensitive to medication or hormones, but it is a viable option for some.
-Meditate. Seriously. Do this all month long. It really helps.
Fistulas are life-disrupting, painful, fairly gross, and can often turn in to long-term struggles and multiple surgeries. I received an e-mail from a woman who is dealing with a colorectal fistula, and she wanted to know more about how to deal with her period during all of this. I thought about it, and nobody ever gave me ANY advice about how to handle a menstrual cycle while battling a fistula of doom. Women with fistulas are constantly dealing with what I call the “Silence Factor.” Nobody wants to talk about periods, about tampons, about menstrual blood, and nobody wants to talk about anything relating to the rectum. Our reality, though, is that we have to navigate through life with these added complications that most people don’t understand, and are uncomfortable hearing about.
I’m here to deliver this very important message: You have nothing to be ashamed of. You are not gross. This shit is really hard, painful, isolating, and really depressing, and you are a warrior who is surviving it.
YOU HAVE NOTHING TO BE ASHAMED OF.
If you are a woman, or a person who has periods, and you need to reach out to someone who has been there, please shoot me an e-mail at email@example.com. Sometimes it can take me a while to respond, but I will respond.