How I dealt with the worry of a lack of known diagnosis (or why finding out I needed surgery was a huge relief)

Have you ever had a cold sore? If you’ve had one, you know that they are painful and horrifying and only ever develop right before picture day or a first date or your wedding day or whatever. It only takes one cold sore to realize that you never want to have a cold sore again, so you become pretty vigilant at recognizing the signs. A few days before Mount Vesuvias intends to erupt on your face you have tingling, and dry lips. Neither the tingling nor the dry lips are particularly malicious, but they are moderately annoying. You’ve had a few cold sores, so you recognize the signs, you buy some abreva, and you wait for Mt. Vesuvias. Except it never comes. You keep having the tingling, and the dryness, but you never get the cold sore. But you’re sure you’re going to get a cold sore, because you’ve had them before. So you monitor your symptoms. You take note of when the tingling is better and worse, and when the dryness reaches Sahara Desert levels. You had some anxiety about the fact that you were going to have a cold sore, but you weirdly have more anxiety about the fact that you don’t have one. Because not having a cold sore doesn’t fit in your outline of how the world works and what these symptoms mean. That’s what November through January was like for me – I constantly felt like I was on the cusp of an infection and like I was just waiting for the other shoe to drop. I felt like something was wrong, so it wasn’t surprising to me that doctors kept giving me antibiotics, which is how I ended up on over 30 days of them, even though I know the risks of over medicating. 

So you never get a cold sore, but you keep feeling like you’re just about to. You turn to the internet for what else it could be. The internet tells you that tingling lips could be caused by something inane like chapped lips, but that it could also be caused by allergic reactions, nerve damage, and multiple sclerosis. When you can’t put the pieces of the puzzle (symptoms, time frame, appearance) together in a familiar way, you start to lean towards the unfamiliar. I couldn’t make sense of my constant urge to urinate, suprapubic pain, and changing intensity of symptoms so I started changing things I could change or control to try to make sense of my situation. I cut caffeine, alcohol, and citrus. I did kegels. I did pelvic floor push – outs. I did a lot of deep squatting with timed breathing and pelvic floor relaxation. The longer the symptoms went on, the more I thought about them, searching for an answer. In the meantime, I have people in my life – friends, classmates, medical practitioners telling me that I’m making something out of nothing, and that I probably just have the pelvic equivalent to chapped lips (there’s definitely a labia joke in there somewhere).

By now, the symptoms have gone on for so long, and so many people have told me that I am making something out of nothing, that I start to doubt my experience. I tell myself that it’s just chapped lips (I’m drinking more water because of all of the antibiotics, I’ve made myself pee too often out of nervousness, I just have cramps from my IUD). But my symptoms still haven’t gone away, now I just feel crazy thinking about them. I feel dramatic bringing it up, and I know that everyone is tired of hearing about my vagina. Lets be clear – I’m tired of thinking about my vagina. But now I’m left to worry alone, and without an outlet to talk about it, my symptoms seem to be getting worse. Even though I knew it was irrational, I was sure I had cancer – and I couldn’t talk to anyone about it, which only made me more sure that I had cancer.

This is why seeing a doctor who was concerned about the nodule was a relief. This is why finding out that my problem was surgical (even though the recovery was going to suck was a relief). Because at least now my feelings about my symptoms were validated. It turned out that I wasn’t crazy. I knew my body better than other people did. It wasn’t just chapped lips. 

When I found out that my symptoms were real and that my problem had a name, while my reaction was less than positive, my symptoms decreased dramatically. There are people that will tell you that this happened because I’m a drama queen and I’m making it up, but there’s actually a lot of research on this phenomena, and it’s not just about feeling like you have to pee. Most of the research is actually about chronic pain, and what it shows is that understanding the source of your symptoms (why you are feeling what you’re feeling) can decrease your experience of those symptoms. In my case, I knew that surgery was going to fix the source of my symptoms, but even though I didn’t have the surgery (scheduled for the end of April), my symptoms decreased anyway. There are a lot of suggested mechanisms for why this may be, but the one I like the best is this – your body prefers homeostasis – there are setting that your body works optimally at. When those settings get out of whack, you may feel things like fatigue, pain, or constantly having to pee. Your body knows the settings are messed up, but they don’t know why – they don’t know if it’s because you didn’t get enough sleep last night or if it’s because something is broken and your whole system is about to fall apart piece by piece. That ambiguity increases anxiety and anxiety increases pain, which is why meditation and breathing exercises can be an effective treatment for things like chronic pain.

Unfortunately, the source of my symptoms is ongoing, and will continue until I have surgery to remove the outcropping in my urethra, so no amount of deep breathing and self talk is going to resolve my urge to urinate. However, it can help decrease the intensity of my symptoms, and is especially helpful when things in my life start piling up. When my pain increases or my bathroom trips seems more urgent, I remind myself that my body is not disintegrating, I don’t have cancer, and my symptoms are not some big red flag of doom. And while all of that is true, I also acknowledge that my symptoms are real, there is a reason for them, and I’m not crazy. It may not be MS, but it’s not just chapped lips either. Luckily, in any case, deep breathing and a positive attitude can actually be a treatment.