Health Organization for Pudendal Education

I had IC that was cured after the nerves started healing after my decompression surgery.
Do any of you have IC issues? Do any of you think there are people thinking they have IC when what they really have is PN or PNE?
I feel like IC people are being misdiagnosed and that is why they are not getting better when treating IC symptoms.
Just courious.

Loves

Kat

Hi Kat,

I have PN and PNE and also IC. The IC started years ago after a hysterectomy. It was mild until four years ago when a huge flair lasted many months and then after a fall on ice I ended up with serious PN symptoms.

In January I had PNE surgery with Dr Hibner. I have noticed a decrease in IC flares over the last few months and was wondering if there was a connection to the PNE. Dr Hibner said that the scar tissue entrapment was most likely due to the pelvic surgeries I had. I think you brought up an interesting topic. My PT believed that much of my IC problems were PNE related. Would be interesting to see how many others with IC have PN or PNE.

Trudy

hi.well im not for sure if it helps but i was dx.d in 96 for i.c. by 2000 i had no more options and very suicidal..so i had my bladder removed and pain free for about 6 weeks.but i didnt have the feeling like i needed to urinate every five min..i think the pain is pn or pne..never been tested but after 16 yrs my dr have no doubt..i am on ssi so i cant afford all sorts of tests plus my care for my pain..it is no stop 24/7 never below a four..but to answer yr quest..yeah..i wonder if i wasnt mis dx,d and cost me my bladder???its a thing for i.c. patients to really think about.thanks for all the great posts..deedee

I have not been officially diagnosed with PN or PNE, but thats a long story as my countrys health system is run by monkeys.

My uro/gyne operated on me a few weeks ago to 'see if Intersticial Cystitis" was causing the bladder pain (amoungst the myriad of other pudenal like symptoms).
He said he wanted to do this cystoscopy to 'cross it off the list'
The only symptom of IC I had was painful bladder when full, and once released, painful till it filled up a bit. I had no frequency or urgency symptoms characteristic of IC.

So on the 8th December I had the Cystoscopy, they hyper-distended my bladder put a camera in, and the bladder wall hemmoraged (which apparantly happens as a classic sign of IC).
So doc happily informed me I have IC, and thats that.

The part I can't understand is when waking from the general anaesthetic, I was in the most ultimate severe pain, it was not internal pain from bladder, it was mega flared pain from all my PN symptoms, especially from pubic bone to anus just going wild like I was being branded by a cow pole thing, and whipped at same time, not only on my actual skin and subskin area, but extending out about 6 inches from my body.

Now as a result of this, I have not been able to urinate myself, they have tried 4 times to remove catheter, but there is absolutely NO urge or sense to pee, I don't even feel full (even though I've had 400mls of saline squirted in there).
Also my bowels are not working now, there were issues there before, but have not passed in 12 days.
I have taken every laxative, drink mix and pill possible multiple times a day

That op certainly rarked things up.
YAY I have a diagnosis of IC, but I fear they are going to stop at that and not investigate the pudendal issues.

I wanna know if PN can MIMIC that classic symptom of IC ( the bladder lining hemmoraging upon hyperdistention)

kia kaha wrote:
So on the 8th December I had the Cystoscopy, they hyper-distended my bladder put a camera in, and the bladder wall hemmoraged (which apparantly happens as a classic sign of IC).
So doc happily informed me I have IC, and thats that.

I wanna know if PN can MIMIC that classic symptom of IC ( the bladder lining hemmoraging upon hyperdistention)

Nicola, I went back and read your original post http://www.pudendalhope.info/forum/view ... f=2&t=1893 and it's hard to see that you could have just IC and nothing else going on.

I've not heard of hemorrhaging on hydrodistention with PNE but there is a lot I don't know. That might be a good question for Dr. Antolak since he is a urologist and one of the PNE physicians who believes IC can be caused by PNE.

Violet

Upon examining the results from two previous cystoscopies and discussing my other pelvic pain issues, my new urologist explained that she did not think that I suffered from true IC, but rather Painful Bladder and urethritis. I saw a urogynecologist thereafter who diagnosed Pudendal Neuralgia causing a variety of problems in the genital area like vulvodynia,....; she took a full medical history and after identifying previous pelvic surgeries, participating in contact sports, falling on ice and bruising my tailbone, etc. - she believed all those types of events set me up for pain problems in that area. She explained that the uterus, external genitalia, bladder, rectum all have one thing in common - they all meet at the pudendal nerve.
My treatment has been holistic with different specialists involved.
(1) urogynecologist, Dr. Magali Robert in Calgary performed 3 sets of nerve blocks, and I saw improvement within the first week. She also prescribed Lyrica and xylocaine ointment (for vulva)
(2) urologist, Dr. Theresa McCallum in Leduc wanted to treat my bladder conservatively and knew nerve blocks would help (performed by doctor above). She prescribed Enablex for OAB and Pyridium for the urethra pain.
(3) GP prescribed Tramadol and Opium & Belladona suppositories for bladder/urethra spasms
(4) pelvic floor physiotherapist, Mary Wood at Cura Physical Therapies helped with a major breakthrough in bladder pain by focusing on proper posture and good breathing. Kinesio Taping used and various exercises. Now able to stop spasms by doing the suggested exercises.
If I had had IC throughout all of this, I doubt that nerve blocks, medications and especially exercises would have seen my pain decrease by 80%. I've been able to cut down on pain meds too. From my experience, it is worth being conservative with bladder problems, especially when you have other problems that are PN related.

Laurina

Today I went back to the hospital for another attempt to remove catheter,
Any yay it was sucessful, passed 350ml with no problems, painful going out, and afterwrds for a bit, so had to wait another 45 mins an 2 cups if tea, the second pee was alot harder for the ;drop down release; to kick in, and it was painful to expel, and had terrible cramps afterwards.

They did an ultrasound,and I had 35ml retained, so all good sent me home, I was so sore and exhausted I had to get an orederly to wheel chair me two blocks to the carpark to get my car and drive home, I've still got bad leg and feet pain.
it wasn't until 6 hours later that I was able to pee again, after being busting for 2 hours in pain, but when it let down it wasn't as painful.
so crashed lying on my bed in the sun and slept till almost 11pm, so needed it!!

So thats the update,
I have my 2 hour specialist appointment on thursdsy so see what turns up there.

My main goal is to get into my wettie and have a christmas day surf.. even if I just belly on my board some small ripplers on the inside it would make my Day!

So glad to hear you've finally got rid of the catheter! Hope all goes well on Thursday.

Nicola, that's great that you are improving. Hope you are able to get on the surfboard but please be careful!

Violet

well it wasn't a good appointment on Thursday.

The Gynecologist took my complete history again.
And referred back to older hospital notes especially the notes of the pain specialist I saw last year ( the one who said i was faking it to sabotage my relationship, and had googled symptoms). This gyno and the pain guy have co written a few medical papers together, so are quite chummy.

Gyno decided I have Central Sensitization (just as the pain doc had said last year), He believed it was caused from childbirth ( I had my last child nearly 19 years ago, my eldest is 25).
Funny I had no problems till 2 1/2 years ago.
He said I had IC, concurring with the surgery a few weeks back, and "perhaps there were other things going on that might be causing the Central Sensitization but wasn't willing to look into what they might be, he siad " but I'm only a gynecologist, and didn't have experience in those other areas".
When he did the internal exam, he just pushed at the muscles around the inside of my vagina and poked my cervix with a big cotton bud saying "Oh well you didn't jump off the bed, so theres nothing wrong there". He didn't go to my back passage, or check any other possible pudendal sites (whatever they are)
Also he did the usual ice cubes, prick sticks and hot vials over my tummy and inner legs.

I asked if he could look into the chronic pain in legs and feet - he said "keep taking the amitryptyline" ( I was newly prescribed this 2 weeks ago in hospital). I tried Amitryptylene in 1994 for IBS (from scoured out digestive system from antibiotics), and after 3 months was so sick on them I had to stop.
I've been taking them for 13 days and I feel ill every day, and feel so drowsy and emotional.
I cried for 6 hours today, but thats because of the completely disappointing consultation. Stupid me for having some faith that I was finally getting somewhere.

I asked about the bolts of pain through perineum when I rotate my leg outwards, (this happened 3 times when he asked me to spread my legs for the septum vag thing to go in). That squatting causes too much pain afterwards, can't sit for any length of time, can't walk for long. His answer "go see a physio" (I saw a physio and oesteopath for 7 months this year, and they were the best in the city, and they told me not to come back as there was nothing they could find or do for me.)
= central sensitization

I asked about the horrible anti arousal sensations, and shots of pain in my perineum, and that it was too painful to make love to my hubby. That any activity completely exaccerbated my symptoms. That I had a recently 'fixed' sacroiliac sprain which had been left for 18 months, still causing me pain, and chronic pain in lower back, tailbone.
= central sensitization.


He said he'd talk to Prof Theirry Vancaille in Sydney in February 4th.
But did not proceed to order the MRI that Vancaillie had suggested, the same letter in which he recommended to see this very gynecologist, to whom I passed it on to.
I asked him what he thought of vancaillies thoughts in the letter that " I certainly has elements of Pudendal Neuralgia", this is when he said he was only a gynecologist.
he said "Stop taking the Tramadol, and take the oxynorm with the amytrip, exercise and stay positive."

I have absolutely NO FAITH in this health system, and that I am ever going to get anywhere at all EVER.

I should be posting this in my own thread, but what the heck.

Its 2.15 am, I have an art commission to have completed for pickup in 8 hours with about 5 hours work left in it.
I can't believe I'm painting, when I'm so exhausted, emotionally drained, and steamrollered.
Hubby is annoyed with me I'm staying up to finish it, was supposed to do it this arvo, but was too upset.