Health Organization for Pudendal Education

I'm sorry it went so badly for you, Nicola. I think we've all seen our share of physicians who don't have a clue and it sounds like this one has no desire to really help you figure anything out. Wish you could get over to Dr. V.

What are you painting?

Violet

Violet M wrote:I'm sorry it went so badly for you, Nicola. I think we've all seen our share of physicians who don't have a clue and it sounds like this one has no desire to really help you figure anything out. Wish you could get over to Dr. V.

What are you painting?

Violet

Just a copy of a previous artwork I had done a few years back for a commissioned christmas pressie.

And I did get my surf in today, just squeezed into me wetti, and hubby took my board out I walked and got my first wave in on my tummy, first one in 360 days!
And second wave I stood up and got a few turns on, so was totally stoked, totally SORE NOW!!!

It's beautiful, Nicola! You are so talented.

Glad you were able to get out on your board -- sometimes it's worth the risk just to feel a bit of your old life again even for a short time.

well big mistake the christmas surf.

spent 5 hours in ED with a major new pain flare..
They readjusted my pain meds, which was in part a cause of the flare, them not being effective enough..
And my symptoms suggested a bladder infection.
I did a piddle sample which had blood and white cells in, but infection not confirmed, will have to wait for results..
So could have been from having catheter in for 12 days and only coming out 4 days prior with no extra antibiotics to support me.

The new pain flare is however a new symptom, which I guess I should put on my own thread.
but its bowel related, with left leg movement.. it just get crazier and crazier.
I really think I am possessed.

Hi

My non-MD answer: I guess it's possible for someone to have both conditions, but I bet there are a lot of people with pudendal neuralgia who have been misdiagnosed with IC. There are no tests for interstitial cystitis. The diagnosis is arrived at by excluding other sources of urinary frequency and pelvic pain like "female problems," bladder infections, chronic appendicitis, cancer (colon, bladder), bladder stones, etc. If you have none of these problems, you may have IC. Or not.

I was misdiagnosed and my urologist put me under general anesthetic and blew up my bladder to much larger than its normal size not once but three times to teach a resident. Before this hydrodistention, I had what seems in retrospect a relatively mild case of PN (treatable with 100 mg tramadol every 4 hyrs), but this procedure ramped the damage to my pudendal nerve up a thousandfold (lots of breakthrough pain on a 75 mg. fentanyl patch).

Unfortunately, there are probably people over on the IC chat line who have PN and don't know it. What's more, I would guess their doctors don't even realize the potential for pudendal neuralgia to be the cause of their problems. My urologist said I had "suprapubic" pain on my paper work. He never used this word with me because I didn't have pain over my pubic bone but much farther up and nowhere near where a normal bladder is in a female. Not being a doctor, I had no idea a normal bladder in a female sits very low in the pelvis.

One good thing is that the American Urological Association (the people who board certify urologists) has come out and banned the use of this bladder blow up procedure to diagnose IC and has limited its use to cases where someone has already gotten a diagnosis of interstitial cystitis because of the presence of glomurations. I spoke with the public relations officer of the Interstitial Cystitis Association and she told me that urologists are not even asked any IC questions when they take the exams to get board certified.

Bathsheba

Hi Bathsheba,

thanks for your reply.

Interesting to note that after being hyperdistended your PN symptoms ramed up greatly.

This is what happened to me.
My Uretha sphincter also decided to stop woring for 12 days.

Now it is under control.
I got a bladder infection from having the catheter in for 12 days, although I was actually on antibiotics while the catheter was in, turns out afer an ED presentation and urine test, the bacteria present was not affected by the antibiotic given,so have a new lot, almost finished, and feeling much better.

Although the surgeon has diagnosed me with IC, as I hemoraged with the hyperdistention, I do not have the frequency and urgency symptoms, aliong withh sensitivity with certain foods that classic IC has.

So I am just puttting the bladder pain down to a symptom of PN, even though I don't even have an official diagnosis of PN.
Still working on that.

today I had my follow up from the cystoscopy last year, and again he says i have IC, because my bladder hemorrhaged when they did the hyperdistention, and he showed me the photos.

But good thing is, my badgering of another doctor has resulted in a possible pudendal nerve block soon, have no Idea when, how etc.

I have had symptoms of mild IC off and on for years -- without knowing what it was. When the PNE/vulvadynia hit -- so did IC symptoms -- and really bad. I follow the IC diet and the did the relaxation and stretching that is recommended by PT Amy Stein for IC -- and the symptoms went away. When i had PT for pelvic floor disorder -- the PT said she didnt think i had real IC and that the only tightness i had "down there" were in muscles that cross the pudendal nerve. In other words, i have PNE not IC.

Interesting my PT says my pelvic floor is good, and not even tight.
But any activity or exercise that stretches the pelvic floor exacerbates the pain in every area.

where would I find Amy Steins exercises?

Her book, Heal Pelvic Pain, is sold on Amazon.