Vulvodynia: A Real Pain in the Vagina

By Jessie Carr

In my 18 years of battling various chronic illnesses, with all the terrible symptoms and the terrible doctors and the even more terrible social and emotional challenges of being a “sick” person, nothing has been so debilitating as my ongoing war with
vulvodynia.

In the early days of my diagnosis, when I turned to the Internet for information and a glimmer of hope (as I am sure you, Dear Reader, are also doing), a sentence like that would have moved me to yet another round of tears. But I will not mince words.

I owe that to my fellow sufferers who live in a world where the utterance of the word “vagina” is often met with snickers or blushing or disgust, when of course the vagina is just another body part—an important one at that—and sometimes it gets sick, too.

I make this ominous proclamation to
underline the gravity of this condition
and to validate your suffering.

But I will follow it up with an equally important proclamation: this condition is manageable, and you will be able to enjoy your life again one day. I won’t lie: it may not be easy. But it will happen.

So, altogether now, let’s do this.
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Interstitial Cystitis and FM:

Separate but Overlapping

 

Many people with fibromyalgia may also be diagnosed with interstitial cystitis, or vice versa. As in many chronic pain cases, it’s quite common for two or more pain syndromes to overlap.
Depositphotos_33851191_m

Interstitial cystitis (IC) is a chronic pelvic pain disorder that affects an estimated 847,000 adults, 94% of whom are women. Symptoms vary from case to case and even in the same individual. They range from mild discomfort, pressure, and tenderness to intense pain in the bladder and pelvic area.

Oftentimes, patients with IC are
misdiagnosed with irritable bladder,
prostatitis, cystitis, urethral syndrome,
or are even sent away without a diagnosis.

A diagnosis of IC is based on the presence of urinary urgency, urinary frequency—people with severe cases may urinate as many as 60 times a day—bladder or pelvic pain, ulcers, and inflammation of the bladder wall. The inflammation can lead to a scarring or stiffening of the bladder, a reduced capacity to hold the bladder, and glomerulations (pinpoint bleeding in the bladder lining caused by recurrent irritation).

Overlapping but Not Equal

One 21-year-old patient, Amanda, saw two separate physicians who both diagnosed her with an “irritable bladder,” and both told her that her fibromyalgia (FM) was the cause of her reoccurring pelvic pain. But a third urologist, who had considerable experience working with pelvic pain conditions, ordered a cystoscopy with hydrodistention, which helped confirm her IC diagnosis.

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The Calculus of Pain

By David L. Katz, MD; Chief Medical Officer of the Community Pain Center

 

My wife and I have 5 children, and as they’ve grown up and become more independent, it has become ever more complicated, and ever less common, to get all 7 of us together. Like all families, we have an almost limitless capacity to drive one another crazy–but we all really love one another. So those occasions to convene the whole tribe are precious to us all.

Katz Family

We had just such an occasion planned last spring for Family Weekend at the University of Florida, where one of our daughters recently completed her freshman year. We were starting from Connecticut, New York, and Massachusetts–and the plan was to converge on Gainesville. But out of the 6 of us with tickets, only 5 got on their planes. My daughter living in Boston didn’t make the trip, because at the last minute, she was afflicted with abdominal pain, nausea, and vomiting pretty much out of the blue. So out of the blue she stayed, stuck in bed. She described the episode to me, and in a young healthy person, it sounded like a trivial, if ill-timed, bout of gastroenteritis–perhaps food poisoning. I thought nothing more of it. We missed her in Florida, but she promptly recovered–and life resumed its customary cadences for us all.

“When you hear hoof beats,
think horse not zebra.”

Until several weeks ago, when my daughter called me from Boston. My wife is far more the family concierge than I; all reports of routine comings and goings tend to come to her. When I get a direct call, it is almost invariably of the “please send money, Dad” or “does this need stitches?” variety. This was, predictably, one of those. My daughter was having another bout virtually identical to the first. And that changed the calculus entirely. In medical school, we are taught that “when you hear hoof beats, think horse not zebra.”
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