It’s. Just. A. Flare.
Four little words that pack a lot of power for me, because they instantly put the brakes on an impending panic attack.
This wasn’t always the case. Used to be that when I’d have a flare-up of my pelvic pain symptoms, it would devastate me sending me into a panic-filled dark hole. But after some good communication with my PT, and frankly, getting to the other side of a handful of nasty flares, I had an epiphany, one that changed the course of my recovery.
My hope is that by sharing what I’ve learned about flares, I can help others who are on the roller coaster ride of pelvic pain healing. So here goes.
As anyone who has gone through the treatment process for pelvic pain can attest to, it’s a long, and oftentimes, complicated journey. There is no pill, surgery, set number of PT sessions, or any other secret sauce that will get you better. What does get you better is a “multidisciplinary treatment approach.” Basically, what this means is that you have to first assemble the right team of medical providers. Then you yourself have to be an active member of that team. Throw in a heaping dose of persistence and patience, and that’s how you heal from pelvic pain.
At any given time, my treatment team has consisted of a pelvic floor physical therapist, a physiatrist (pain management doc) and a urogynocologist. Treatments I have had include: trigger point injections, Botox injections, epidural injections, nerve blocks, medication, and a self-treatment routine that included pelvic floor down training (drops) and internal pelvic floor muscle stretching with a “crystal wand”. In a previous blog post, I shared my entire pelvic pain story.
As my previous post explains, I consider myself a pelvic pain success story. Oftentimes, however, healing has felt a lot like taking one step forward and two steps backward. And flares happened. At the beginning they happened A LOT. Even as I write this I can still recall the feeling of utter despair that would envelop me when I’d have an off-the-pain-scale flare up. For me, a pain flare meant and continues to mean an intense urethral/vestibular/vulvar burning coupled with burning sit bone pain, and maddening urinary urgency/frequency. A flare would come unexpectedly. I would be having a good day, or a few good weeks and then BAM! I’d feel as though I was back at square one.
Sometimes I could connect a specific incident to the flare. A long car trip, sitting for too long, wearing the wrong pants, having sex, traveling, a urinary tract infection; all could set off a three-alarm flare. But other times, a flare would just seemingly come out of nowhere.
Whatever was behind the flare, my reaction was always the same: I would hop on the catastrophizing train in my mind. “All that progress out the window,” I’d think. “I’ll never get better, I’ll never enjoy [insert activity here] again.” “My husband is going to leave me.” “I’ll never be able to have children.” “My family and friends are going to abandon me.” “I’m going to grow old alone.” “Should I ask my doctor if I should try [insert name of drug or type of injection] here?” “I’ve got to make a plan!!!” And on and on the train would race.
I would find myself in a true state of panic, and the anxiety would in turn feed the flames of my pain, and up up up my pain levels would go.
It wasn’t until I began getting regular physical therapy with Stephanie and Liz, who began to educate me about the healing process, that I was finally able to stop the train on its tracks. With their help, I was able to get to the other side of a flare without going into full-scale panic mode. Not only that, but they helped me to develop tools that I could use to actually get myself through a flare faster.
First, I want to share with you what I learned from Stephanie and Liz about flares.
Stephanie and Liz explained to me that:
Flares may happen as a result of very predictable things, such as a UTI or yeast infection, a bout of food poisoning, overdoing it at the gym, or even repetitive coughing because of the flu. It’s simply not always possible to avoid a triggering event, even when you know what your triggers are. For instance, stress, travel, and diet are common triggers that are often unavoidable.
In addition, when a pain flare can’t be tied to any tangible event, the central nervous system can be the culprit. This is because the central nervous system can generate pain without there being tissue damage. This is a key concept. Pain can occur in response to an actual threat like an a UTI or it can spontaneously occur on its own because the brain remembers what that UTI felt like.
I also learned that on occasion—not always because as mentioned above, sometimes there aren’t any triggering events behind a flare—a flare is your pelvic floor’s way of telling you it’s not ready for you to add a particular activity into the mix.
For instance, when I began to wear pants again, I realized that there were certain kinds of pants, tight yoga pants for example, that would flare me up. The pants were the triggering event because, as Stephanie explained to me, my tissues were still impaired. So I gave my cute, new yoga pants to my co-worker, and went back to my looser fitting yoga pants.
Along those same lines, it often happens that as we begin to feel better we start doing more, and sometimes flares are a reminder to pull back, and to slow down. Here’s some wise advice from neuroscientist Lorimer Moseley that I like: “Do more than you did the day before, but just a little more.”
Another thing that was explained to me which has really helped me keep flares in perspective, is that once you reach a level of healing, no matter the intensity of the flare, your body can, and will get back to that level.
These words of wisdom helped me because I could finally stop feeling as if I had gone backward every time I had a flare—that all the progress I had made had gone out the window. Instead, I realized that the flare was just a temporary hiccup, and that made all the difference! It enabled me to keep the alarms in my brain from going off. In a calm manner, I could then take my bag of tools off the shelf and do what I needed to do to take care of myself.
This was key for me, because I quickly learned that a negative response to flares could make the flare worse, and further aggravate my nervous system. So for me, it was really important to remain calm and relaxed during a flare. “Easier said than done” may be your first response to this advice; however, trusting that my flare was temporary really made an enormous difference in my overall healing process.
Since everyone’s symptoms are different, what worked (and continues to work because I still get the occasional flare) for me may not be the thing for you. Yet I still want to share the contents of my “flare tool box” to reflect how you can be proactive in overcoming a flare.
I’ve already mentioned the first trick in my bag, but because it’s so effective, it bears mentioning again. I literally take a deep breath and say these words either out loud or in my head. “It’s. Just. A. Flare.”
I wasn’t sure why this worked, so I asked Rose Hartzell, Ph.D., a certified sex educator and therapist at San Diego Sexual Medicine. Dr. Hartzell explained that, “you can look at these words that you say to yourself as ‘balanced thought’. You are not discounting that there is something going on, but you are also not ‘catastrophizing’ that it is something major to get worried about. You are trying to look at it as what it is.”
“There’s also some evidence from neuroscience that naming or verbalizing difficult feelings decreases some of their emotional reactivity—‘name it to tame it,’” adds Erica Marchand, Ph.D., a licensed psychologist specializing in couples and sex therapy in Los Angeles. “Pain often provokes an automatic emotional reaction, but if we can name it and think about it (what to do about it, what has helped in the past, how long it will last, how to take care of ourselves) it gives us more choice about how to respond.”
This balanced thought instantly clears my head, and enables me to go about the business of dealing with it. Take a look at the other tricks in my bag to see how it happens:
- Ice Pack: “Ice.” It sounds so simple, and it is, and to this day it still surprises me how effective icing is. It ALWAYS makes me feel better. What I usually do is call it an early night, line up a few of my favorite shows on Netflix or On Demand, and relax in bed with my trusty ice pack (a little chocolate helps too). Typically I’ll apply the ice pack to my hot spots for ten minutes or so. Take a break, repeat, and so on for a few hours until I fall asleep. And voila! Not only will I feel better in real time, I’ll wake up the next day feeling a remarkable improvement in my pain levels, especially my sit bone pain. (I want to acknowledge here that many people with nerve pain can’t tolerate ice. These folks benefit more from heat. Also, for many chocolate is a bladder irritant.)
- Stretching: The crystal wand has long been a tool that I’ve used for self-treatment. When I flare, I find that a gentle stretch with my crystal wand (which I keep in the ‘fridge, so it’s always nice and cool) will make me feel better both during the stretching and the following day. I am careful to use an adequate amount of lubrication (which I also keep in the ‘fridge). I find that the cool wand and lubrication help to cool the tissue.
- Medication: As I mentioned above, I have a physiatrist as a member of my treatment team, and she has given me specific medication to take in the event of a flare.
(Again, I want to reiterate that every patient with pelvic pain is different and while these tools work for me, they may not work for everyone. Except for the one below; that one is universal.)
- Boundaries: When you deal with a chronic pain issue, one of the things that happens is that you inevitably disappoint your family and friends. We all want to make the people we care about happy. It’s part of being human. But when I slip into flare mode, I know from experience, that just as important as the ice and the stretching and the medication are rest, relaxation, and keeping my stress levels as low as possible. So I’ve learned to be okay with turning down invitations or telling my husband that I need to have a quiet, relaxing day/night/weekend. Emails and telephone calls will inevitably go unanswered, and I’ve learned to be okay with that, even knowing that the folks on the other end might not be.
I hope this blog post has helped put flares in perspective for you. Healing from pelvic pain can be a roller-coaster ride, but learning to keep calm through a pain flare can really take some of the bumps out.
Please share your thoughts on flare-ups in the comment section below. I’d especially love to hear what tools you have in your “flare tool box”!
All my best,