by Hope Engel
I have had interstitial cystitis (1C) since April 2010. Pelvic floor dysfunction (PFD) and most likely pudendal neuralgia followed it’s evil partner in pain not long after. Like all of my fellow IC warriors, I would like nothing more than for both to miraculously take a hike from my body forever so I can walk into Tony’s, my favorite beach bar, again and order a lemon drop martini! Fantasy aside, I have spent countless desperate hours during my first three years with IC surfing the web for answers, supplements, medical treatments, alternative treatments and success stories. With every horrific flare, I would plead for something and someone to help me out of the pain of which we cannot speak, to give me back the life before what is now known as Functional Somatic Syndrome, when I could work full time, have a normal social life, not obsessively read food labels, worry about the water bill with every flush, and most important, be spontaneously intimate with my husband without anxiety!
So for years I searched and searched and, like many of you, all at the loss of a steady income. Quite often I would find a keeper, an effective supplement or herb that reduced my frequency. I kept to the IC diet faithfully. Spirulina in all it’s nasty green gunk glory became a friend of mine. I always keep D-Mannose in my kitchen cupboard. I am sure that most all of us can’t leave home without our Prelief and of course there’s that magical genie we know as baking soda. Then there were other supplements, medicines like amitriptyline, and herbs that would leave me in a curled ball of agony, or worse, send me to the ER (nothing against marshmallow root, but for me it is poison). Yes, it took years and tears and a frenzy of trial and error as I watched the days go down the toilet, longing for the right treatment to save me and my marriage. Sound familiar?
Then, in early 2014, about six months after reading Amy Stein’s book, Heal Pelvic Pain. I had a healing breakthrough. It took discipline and optimism, but having recovered from sacroiliac joint dysfunction in 2003,1 was no stranger to the merits of physical therapy. I started getting better within a few weeks. I took Yoga classes at my local YMCA where I found instructors instead of doctors. I was fortunate enough to find a no stress part-time job at a card and gift shop. I found more and more IC friendly foods and recipes, along with a few more over the counter arsenals to put in my IC toolbox. Then somewhere between year four and five, when I started to have a handle on both the IC and PFD, when the good days far outnumbered the bad, I learned to make peace with myself and my condition. I formed a spiritual treaty because I finally learned to go around the disease instead of just living with it.
For me, my new life began at age 56 in the mid-morning hours at the YMCA. There I felt a sense of ownership and empowerment as I fought off hypertonicity with each upward dog. I met other members who had their own disabilities, a woman who is legally blind, and my friend, Eric, who has muscular dystrophy. And in my weekly practice, even though I might be the only person suffering from 1C, I no longer felt as isolated. When you witness the strength of a man who can barely walk, roll his mat down and find his asanas with conviction, you find strength and hope.
It’s 2015 and I admit IC still challenges me daily. I would love to have a full time career again, go fearlessly to that outdoor concert or make plane to travel out of state. I believe that day will come. But living in the present, I have learned that I can go to a small dinner party by bringing my own food and beverage and leaving after hour three (so I only visually go to the bathroom once).
For now, I find ways to cope. I go around IC when I drink Teecino instead of coffee. I dodge a flare by taking pyridium right before we have planned sex (when I feel comfortable having sex), and taking a long shower afterwards. Even my husband has made adjustments, going from, “Can you eat this?” to reading labels with me at the grocery store. We have little silent cues when he knows I need to leave. Most importantly, I have learned the healing power of breathing and believing that you can get out of a flare. You just take the ammunition you need and know that it will not last long. We all know it is easier to retrain and relax very tight pelvic floor muscles when you surround yourself with the positive thinking; it is just finding our own way out of pain, getting ourselves out of that flare that takes inordinate amount of faith and diligence and like yoga, practice.
Last month my friend Eric’s wife passed away not long after he had to put down his dog, Ray. No one knows why the universe deals the cruelest of hands to the kindest of men. As we gathered during the memorial, the room filled with empathy for a man who even in his darkest hour was our inspiration. Eric returned to yoga class the Monday after his wife’s memorial because without this class he would feel like just another case of MS. So I continue my own practice, because of Eric, because without these classes I would just be another person with 1C and pelvic pain. I would still allow myself to be completely enveloped with this disease instead of rolling out my mat.
Yes, there are still many times I lament over losses which I have little control. I grew up in an academic family that defined themselves by their careers and financial assets rather than personal values. If that sounds familiar, redefining and then internally accepting yourself can be a very personal daily tug-of-war. Yet, if you think about it, life is frequently about redefinition during trying times. If you can find self-intervention instead of grief, you are ahead of the game. As difficult as it may be to tell your friends that you have IC/BPS, decide to have that talk, with at least one of them. When I confided to one of my friends, I learned she also has frequency because of her heart medication, we became even closer. As my friend Eric says, “We all have something.”
