Since I outed myself as a sufferer of IC (Interstitial Cystitis), I have had a glorious handful of friends, acquaintances and strangers contact me about it. Usually the conversations start like this:
"Can you describe how you feel during a flair-up? I think I might have this, except that my doctor keeps telling me that nothing's wrong with me."
SO. INFURIATING. Not the talking to me about it part, no, I love that. But the doctors who don't take their patients seriously part. I spent years trying to be taken seriously about my symptoms.
"Oh here, go pee in this cup. Oh, no infection? Guess it's all in your head then."
"I'll run some cultures. They came back negative? Just take some probiotics anyway. You'll be fine soon."
"Sometimes pain is more psychological than physical. Consider talking to a therapist and I'm sure you'll feel better."
Doctors, PLEASE STOP THIS! I get that there are hypochondriacs out there, but puh-leeze take your patients more seriously! Just because I don't have a medical degree does NOT mean that I don't know my own body. I do. We do. Trust us and help us.
Anyway, my whole point in this post was not to call every doctor to repentance out there, but to offer what little knowledge I have of IC to anyone who is curious about it or is in need of some advice from a fellow sufferer.
All I Know About IC Flare-Ups
IC flare-ups vary so much from person to person. I'll only talk about my experiences with IC - how flare-ups feel, what triggers them, how I manage during them, and what you can do to avoid giving up.
How Do Flare-Ups Feel?
Like death. Just kidding, but only sort of.
At the beginning, I feel a gnawing discomfort in my pelvic area. If I'm able to stay on top of it (I'll get more into that later), then I can usually keep it at this level. If I don't do the things I need to to manage it, then it grows into an intense burning in my bladder and urethra, an aching in my bladder and lower back, and a sharp, stabbing pain throughout that whole area (vulva, vagina, etc). I have to urinate constantly but always feel like I can't get it all out. And when I am able to urinate, it feels like tiny glass shards. I also sometimes get these little twinges of electric-shock-like pain throughout my more sensitive areas. Sorry for the vagueness here... I'm just not ready to use anatomical terms yet. Forgive! If you are experiencing IC and need some more direct noun-age for the body parts I'm not specifying, please email me. I'm like, way less inhibited over email.
My flare-ups have lasted anywhere from a day to a year. On average, though, I'd say they usually last about a month. If it's a food flare-up, it lasts maybe an hour or two.
First and foremost for me, is dehydration. If I'm not extremely well-hydrated, I start to have a burning sensation in my bladder that quickly spreads into an all-out flare-up. I'm pretty sure that my last flare-up was triggered by the intense dehydration that comes after having the stomach flu. I threw up for days and just couldn't get my body hydrated. Because of that, when I finally was able to hold liquids, my bladder was extremely irritated by the acidity of my urine, and then even more irritated when I drank like gallons of water and filled it too quickly. It's a vicious cycle.
Next would definitely be diet. I have learned by trial-and-error that most spicy foods irritate my bladder and cause horrible burning throughout my bladder, urethra and everything else in the surrounding areas. Most acidic foods - tomatoes, chocolate, pineapple. So basically everything I love ;). I don't drink alcohol or coffee, but I've heard that these are two major irritants. Sometimes tart things can cause pain - berries, citrus fruits and sour candy. Over-doing it on sugar never feels good, either.
I think it's important to remember during a flare-up to only eat things you are SURE you're okay with. It is really hard for me to do this, because I only know of a few foods that are actually soothing to my bladder - pears, green beans, unseasoned, baked chicken breast, vanilla ice cream, water, peppermint herbal tea. So after having enough flare-ups, I pretty much hate these foods, but I eat them anyway because I know that they'll help. Or at least not hinder.
Clothing is a huge one, too. Cotton undies. Don't wear anything else, please. Tight pants! Oh my word, pants. How I miss you! I can wear leggings most of the time if they don't push against my crotch, and I think it's because they're cotton and light-weight. I can't really wear jeans or nylons at all during a flare-up. When it's really bad, I just go commando in a nightgown and hope I don't scar my children for life if they happen to glimpse anything by mistake. You know, typical IC Mom problems.
When I wear tight pants (or really most pants), nylons, or tight underwear, I almost immediately feel a burning, tearing sensation throughout my urethra. If I don't change right away, then I know a flare-up is imminent.
This is awkward to talk about. Or write about. But intimacy can be a trigger as well, unfortunately. And by intimacy I mean physical... uh.. you know? Okay. So anyway. I feel like it's important to note that even if you have IC, your intimate-life with your spouse or whoever doesn't have to just end. You just need to learn to work around your flare-ups and live a lifestyle that keeps you as healthy as can be so that intimacy doesn't HAVE to become a trigger. But if you are in even the smallest amount of discomfort or pain, avoid it. It becomes a bad cycle if you think, "Ah, I'll just go ahead with it, I don't hurt that badly." Because then, afterwards, you want to die and it kind of like breaks your heart AND your spouse's heart. So be careful with that one.
Any type of vaginal infection can cause a flare-up. I don't know why, except that pain begets pain in that part of your body since everything is so close and so inter-connected. If you are suspicious of an infection, get it checked out and treated. If your results come up negative, then just treat your IC hoping and believing that this is just a weird flare-up. If your infection symptoms persist, keep treating your IC but get back to the doctor (or find a new, better one) and force them to take you seriously.
I've found that random things, like certain cleaning agents I use around the house can lead to flare-ups. I think that if you keep a journal of your own personal triggers, you'll find that IC is much more manageable than it seems. Even though it's still the worst.
Imagine that the kind of pain you're feeling in your pelvic area is in your face or your arm. Would you be using that part of your body? Would you be up and about, volunteering here and hosting a dinner there? Of course not. You'd be in bed, probably crying, talking to your mom on the phone while watching Netflix. The dumb thing about chronic pelvic pain is that it carries shame around with it. You can't just be like, "Oh, sorry boss. I can't come to work. My bladder is full of battery acid today." Or, "Nope, can't play the organ in church today. I have to pee every four minutes but NOT A SINGLE DROP OF URINE IS COMING OUT!" Would I like the world to be a more tolerant, open place so that we could feel like respected human beings while still being open about our pelvic pain? Heck yes. But I don't believe the world is there yet. Baby steps. Hey, if you can talk about your IC with people outside your close circle, awesome. I admire you! Teach me how.
First, dress comfortably. If you are in a career where you have to dress a certain way, find a way to keep constricting clothes AWAY. Wear a maxi skirt and granny panties. When you get home, go commando or wear your husband's sweats.
Second, REST. I cannot express to you how important rest is. When I'm having a particularly violent flare-up, I'm exhausted all the time. By three or four PM, I can't keep my eyes open. If the opportunity comes for me to nap, I always take it. And you know what? For two or three blissful minutes after I wake up, my pain is gone. Once I am up and moving, it returns with a vengeance, but I firmly believe that rest is way, way more important than we realize.
Side note here: resting during the day has always been something that makes me somehow lose my sense of self-worth. I feel lazy and gluttonous. Learning to do what my body needs has been incredibly difficult, but so important.
Third, eat and drink like a champ. Forgive yourself for the bagels and cream cheese that you are going to now be subsisting on. Remember that you're just trying to get through this flare-up. EAT WHAT WORKS FOR YOU. And don't even attempt anything that can be a trigger food because I promise you will hate yourself if you do.
As far as hydration, I've learned that regular sips rather than gulps is way easier on my bladder. During bad flare-ups, I set a timer on my phone reminding me to sip every five minutes.
Fourth, heat. Hot baths and hot pads are great to soothe your cruel pelvis. I practically live in the bath during bad flare-ups.
Fifth, distract yourself from your pain. This only works when you're not in the I-Would-Rather-Die-Than-Go-Through-This pain. I'm talking like... the uncomfortable, close-to-tears-but-not-quite pain. Okay, got it? Boy, I'm struggling with my adjectives right now. Anyway, I've learned that obsessing over it - why? how? what else can I do? - only makes it worse. When I engulf myself in a project or a good book, my mind gets taken away (somewhat) and I get a brief vacation from the pain.
Sixth, find someone who you can really talk to. It took me years to learn this. I never wanted to burden my husband with something so hard and sad, but he eventually convinced me that he needed me to confide in him just as much as I need it. You need someone who you can look at, and say (without fear of being judged, "Right now I'm doubting everything I believe in because I would rather just die right now than go through one more minute of this." You need someone who will just pull you into his/her arms and then draw you a bath and brew some peppermint tea and tell you that you look absolutely beautiful in his pants and baggy tee-shirt. Look, you might not be married or in a serious relationship. You don't need to be. A brother or sister or parents or best friend would suit this role just as perfectly. But please don't go through this alone. Please.
Seventh, delete stress from your life. Everything I have ever read about IC points to stress as a main trigger for flare-ups. I can personally attest to this. I'll be fine and then something stressful will happen, and boom. It feels like a glass vase has just busted inside of my pelvic floor. Avoiding stress is hard in a world where stress is like a drug, but there are things you can do to get rid of at least some kinds of stress.
-If there are people in your life who cause you stress, oh my heck, don't spend time with them! I deleted my facebook account a couple months ago for lots of reasons, but one of them was because every time I saw this one person's status my eyeballs wanted to explode from annoyance. This is not good for me, I realized. Boom, gone. Don't spend time with people you don't want to spend time with! Easy-Peezy.
- Learn stress-management techniques: yoga, meditation. Seriously. Don't roll your eyes! They work!
- Spirituality. Hey, I like my religion like I like my desk: organized ;), but if you don't, no worries! Find beauty and truth and hold onto it like it's going to save your life. Because I'm pretty sure it is going to save your life.
- Dole out responsibilities. This is a hard one! But allowing people to serve you is so important. Having a flare-up so bad that you are throwing up and can't walk straight? Let your best friend watch your kids for a few hours! You know what I mean? Let the people who love you, serve you. Don't think anyone out there loves you? Well, you are very wrong. You are loved!
You Don't Have to Accept This As Your Life
Okay, wow. This has been emotional to type out! I like it!
One of the hardest parts of having IC has been that I constantly feel like I'm hitting brick walls. Every doctor, specialist, nature path, etc., tells me at some point that they've exhausted all possibilities (and our bank account) and that I am on my own from then on. Do you know how discouraging that is? I finally felt empowered last year by my physical therapist, Kelly, to never give up. I have been given a wonderful, magical body. It has a right to feel good. I believe in healing, I believe in health. I believe that trials are meant to be overcome. Why is this one any different?
If you are like me and NEED a plan of attack, here are some things I know of that you can look into involving IC.
Guys, this was seriously a Godsend for me. When I went to Kelly the first time, she listened to my whole story (I was completely in tears at the end), grabbed my hand and said, "You will feel better. This is treatable." After she left the room, I fell onto my knees and prayed with more gratitude than I'd ever felt in my life. I want you to know the same thing. Even if you don't have a PT as awesome as Kelly, there are plenty of physical therapists out there who specialize in women's health. You need to find someone who understands the pelvic floor. Preferably an awesome person who you can name your child after ;), but you know, even if they don't become one of your idols and best friends, anyone who is confidant that they can help you is probably good.
During an IC flare-up, your pelvic floor can tighten. If a charlie horse in the calf can make a grown man cry, imagine one in your privates! Death, I tell you! And with IC, you don't even notice that the muscles are so kinked. Intense physical therapy involving biofeedback, massage, and stretching can bring circulation and dexterity back to those muscles. Give it a shot.
Vaginal Vallium Suppositories
Now, I have never tried these... but they sound pretty freaking amazing! If you are in intense pain, you might want to try these bad boys out. I don't think pain medication is a permanent fix for anything, but I do think that you deserve a break. And breaking up the cycle of pain might be just what your body needs to relax and start to heal.
I haven't tried these for IC either, but I just ordered a ton to make some blends that were suggested to me by a fellow IC sufferer. Anything homeopathic I'm like, heck yeah, let's try. I will let you know how it goes. These things can be expensive, but I mean, I just got a $1500 bill from my last gynecologist so really at this point a $200 order of oils is like kind of underwhelming.
Specialists! Expensive, I know. Trust me. We probably could've owned a house by now if it weren't for the money we've spent on IC. BUT, for every fifty stupid doctors that tell you that it's all in your head, there is one institute, one specialist, one saint out there who is desperately trying to understand women's pelvic pain and wants to help you.
I'm in the midst of trying to get an appointment with Dr. Echenburg in Pennsylvania. He is one of many doctors across the US who takes chronic pelvic pain seriously. If you're not in a place right now to travel in order to meet with a specialist or if finances are tight and you just can't afford it, save as much as you can with a goal date in mind. Ask family or friends for help. Call and find out if they finance or if they are willing to give you some kind of discount. Don't have insurance? Let them know. They will work with you.
And An Important Thing To Say:
Flare-ups end. I promise. It might not be for a long time, but they do! (Mostly? I've never heard of one NOT ending. I've heard of them going on for a few years, but not like a lifetime or anything close to that). If you are like most of the IC populace, your flare-up will end. I promise. Don't forget that.
There have been months when I have eaten vats of spicy Indian food, had a perfectly active -ahem- intimate life with my husband and worn cute skinny jeans without pain. Some discomfort maybe, but no pain.
Know that you will feel okay again. You will! And hang in there until you do. You are a warrior and a trooper and an amazing person. Hang in there.
Okay, I just re-read this and I sound like some kind of Amazon Warrior Champion of Women's Sexual Health. I am actually a huge ninny and I spend most of my flare-ups crying in my bedroom, drowning in my own self-pity. I am learning how to handle this.
But I want you to know something. And future posterity, too. And Future Brooke (hey, me!). I am not going to give up. I AM going to feel better. It's going to happen. I WILL have a normal life. I WILL be able to be the woman I want to be - with health, energy, enthusiasm, and strength. And I believe that if you want this too, you will have it.
Please contact me if you want support or have questions. I am so, so, so willing to help as much as I can. brookeredfern(at)gmail(dot)com