How do YOU KNOW what you REALLY have?

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How do YOU KNOW what you REALLY have?

Post by elitynski » Thu Jul 10, 2008 1:54 am


I have done a fair amount of reading and see people with comparable symptoms and one will be diagnosed with IC while the other might be diagnosed with PFD? Depending on the Dr. There are even some people with similar symptoms that might be diagnosed with PNE (and Web has written some very good stuff on this topic.)

We know that the cystoscopies and potassium tests aren't necessarily conclusive. Even Cystos under Hydrostention can be inconclusive. Yet - I hear the confusion and frustration from patients that go from Dr. to Dr. and get diff't diagnoses.

I don't want to blame Dr.s either because I know that many of them are frustrated by the symptoms and dont' always know what to do.

For instance - I was given a cystoscopy and my bladder looked fine so my Dr. said I have PFD. THis might be true, but I don't have a lot of trigger points so I don't feel like a true PFD case. On the other hand - I haven't identified many diet sensitivities and I don't have your typical IC pain. I also had a cysto that was normal - but haven't done the hydro yet.

I guess what I'm saying is how do you REALLY REALLY know what you have? I would just be curious for some perspectives.
Age: 49 | Onset Age: 43 | Symptoms: Some overactive bladder symptoms | Helped By: Hot Baths, relaxation, a little valium, exercise / weight loss | Worsened By: stress, possibly diet, possibly...(fill in the blank)

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Re: How do YOU KNOW what you REALLY have?

Post by Jay » Thu Jul 10, 2008 2:37 am

It's worth noting that trigger points aren't necessarily a prerequisite of PFD. I do have them, but they are located in my adductors. My major problem is actually hypertonus of the pelvic floor muscles. This sort of dysfunction means they are chronically tightened and in spasm. We don't need trigger points to find my pain, because the whole damn thing is pissed off. :laugh:

In my case ... I went through the urological battery and (like many gentlemen here) was fortunate enough to realize that bacteria isn't the answer. Not after courses of antibiotics and repeatedly clean tests. Once the urologist has ruled out what he can rule out, you are left with only so many options. Another urologist, maybe a neurologist, or some new methods like physical therapy.

At the time when my urologist had finished with me, I was very concerned about two things: PFD or PNE. I'd done a lot of research on both. In the end, and after reading HITP, I asked for my urologist's support in first pursuing a physical therapy solution (notably, he did not even think I was in the ballpark of PNE). This was the least invasive and most promising option I had, before delving into neurology and other paths.

I chose my therapist carefully. Mine treats only issues of this type, she teaches treatment to other therapists, and she is generally very knowledgeable. I knew that she would either be able to reassure and treat me, or have an idea of the next direction I should head in. Turns out that the latter was never necessary. She knew from day one what I had, because it was utterly plain to see from the initial examination. To be a little blunt, my rectal muscles were so tight that her finger went numb during the examination, and we had to get Valium from my urologist to even make the work feasible.

Eventually, it became a matter of good health for me to accept the diagnosis she had given me. She told me that I needed to do that and to stop skimming the internet for answers, because that was just going to scare the crap out of me for no good reason. My urologist, who was a good guy, said the same thing of the internet and my PNE fears, "A little knowledge can be a dangerous thing." Since that day, I have not visited a PNE site. I have not visited any other medical sites. This forum is the only place I go to, and I have otherwise accepted this and moved on.

Treatment is going to be long and difficult, but I have the assurances of a therapist whose knowledge and skills I implicitly trust. That's how I know this is what I really have. Could I have something else? Maybe, who knows? I definitely have this, however, and it needs to be treated.
I am not a physician. This is not medical advice. Consult your doctor!

Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.

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Re: How do YOU KNOW what you REALLY have?

Post by kevin » Fri Jul 11, 2008 1:23 am

elitynski wrote:I guess what I'm saying is how do you REALLY REALLY know what you have? I would just be curious for some perspectives.
Until you have a positive test for something (e.g. a physical therapist finds trigger points), you don't know.

IC, CP, and CPPS are just labels for collections of symptoms that are not well understood by doctors. There is no clear difference between IC and CPPS. People with more bladder symptoms and women TEND to be diagnosed with IC, whereas men with more prostate-focused symptoms TEND to be diagnosed with CPPS. Until researchers truly discover the cause of all pelvic pain, there will be no way to "really" tell what you have.

Don't worry about the label for the condition; just focus on your symptoms and finding things that help them.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy and mild dribbling after urination; pubic/prostate/perineal discomfort; Helped by: Afrin nasal spray, Cymbalta (these meds help me if taken 3 days straight), hydrocodone (small doses), distraction, eliminating wheat/gluten from diet. Makes worse: sex.
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Not medical advice. Consult your doctor.

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