The Parallels of Severe Asthma and (Apparently) Chronic Pain

For more than a year and a half, I have had what is apparently, as I have been told, chronic pelvic pain. Just like shortness of breath—or dyspnea, the subjective sensation of shortness of breath — not only does everybody experience pain differently, there are different manifestations of pain itself.

In fact, I do not think I realized what I was experiencing, known as vulvodynia, was chronic pain manifesting mostly as a burning sensation or itching or "rawness," until the fourth doctor and second gynecologist told me, more than once, with a great deal of compassion, “We will get your pain managed."

An hour after my last specialist gynecologist appointment, I saw my family doctor. As he refilled my prescriptions at his computer he leaned back and, with that exact same amount of compassion, asked "How has your breathing been?"

Parallels between my chronic pain and my asthma

While on occasion after a prolonged bout of bad breathing, my shoulders will be sore, asthma is not generally something that causes pain. However, while they do not flare up at the same time, and are not caused by the same things, I can see similar ebbs and flows in general patterns of my vulvodynia and my asthma.

There is a baseline of symptoms

Sometimes hardly noticeable or what I deem my status quo. For asthma, it is the 14 years of daily chronic cough, episodic breathlessness, and chest tightness, ebbing and flowing often within the day, or sometimes week, or rarely, month. For my pain, it is the relief from pain when standing (usually) but occasional periods of time when for whatever unknown reason I am simply asymptomatic when I might expect to have pain. Sometimes the burning sensation is less disruptive or distracting, other times much more so.

With both breathing issues and chronic pain, I know both are real sensations. I have objective information. They are not just in my head. But I have begun to wonder at times, are these symptoms actually worse...or is my brain just focusing on the discomfort more, or differently? And if my brain is just focusing on it more...is that just my brain overreacting as brains do, or is it because my actual pain or breathing is worse and I am in a flare?

Nailing down the cause

Unlike asthma, which has clear criteria, vulvodynia is known as a "wastebasket diagnosis" in which a solid cause cannot be identified - technically a symptom rather than a disease itself. Many with chronic vulvar pain cannot figure out the exact cause for their pain, be it allergic, dermatologic, neuropathic, myopathic, or a combination of all.

Through this process, common to many chronic diseases that do not manifest exactly the same for all, I am reminded deeply of my years-long quest to get my asthma under control, the multiple treatment changes, trial-and-error, and experiments. I will cover this more in another article, but that trial-and-error is happening, with many parallels to my asthma experience.

Talking about it

Another difference, however, is that people are even more reluctant to talk about their vulvar pain than they are to talk about asthma--and as we well know, it can be hard to find people with asthma to talk to even though there are tons of us out there.

According to data from 2020, approximately 25 million people in the United States are living with asthma. In a different study, approximately 16% of people with vulvas in the United States will experience vulvar pain in their life. ^1,2

Guess what? We are conditioned to not talk about gynecological and similar issues. I have started talking about it because that does not work for me, as people will continue not to get the care they deserve.

I certainly do not think everyone needs to overshare like I do, or that they should: it is super individual. However, there are so many parallels to my asthma experience. Much like I felt when I put my first asthma blog post out in 2009, I felt not just the push to share to help myself and others, an odd asynchronous form of group therapy perhaps, but that it was past time for me for documenting the challenges of chronic disease publicly.

Similar to my wonderings of where the teenage asthmatics were back then, I now wonder if I might be helping someone I know who had been dealing with pelvic pain to talk about it.

Without much information about my own situation, I was vague at first, posting on Instagram after my subspecialist gynecologist appointment, 13.5 months into what I would learn was chronic pain. With an odd hesitance given my oversharing nature, after another vague post, I finally wrote and hit post on an Instagram post mentioning vulvodynia on September 17. And in the comments, again, people showed me it was needed.

Similarities in the experience of asthma and chronic pain

Multiple doctors. Lifestyle changes. Painstakingly figuring out potential causes or triggers. Medication trials. As I have discussed with friends with different chronic illnesses, we experience so many parallels even with different disease processes.

And, at least in my experience, asthma, and chronic pain are no exception.

Editor's Note: Read Part 2 of this article here.