Do PN and PNE people have IC as well?

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
hope4eva
Posts: 76
Joined: Fri Mar 23, 2012 7:06 pm

Re: Do PN and PNE people have IC as well?

Post by hope4eva »

this is trickey and where im at right now as my uro thinks ic possible even with normal bladder on cystocpy and wont do hydro cuz its invasive i tried the diet for about 2 wks with no relief but that may not b long enough most of my symptoms r outer gential pain but i get bladder burning foe a few hrs daily ugh
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kia kaha
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Joined: Tue Aug 23, 2011 1:32 am
Location: Dunedin, New Zealand
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Re: Do PN and PNE people have IC as well?

Post by kia kaha »

Violet M wrote:Her book, Heal Pelvic Pain, is sold on Amazon.
thanks, just ordered the book today, due to arrive 26th April
Chronic Pain pudendal area for 3 years, after a hard jolt to right side.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
hope4eva
Posts: 76
Joined: Fri Mar 23, 2012 7:06 pm

Re: Do PN and PNE people have IC as well?

Post by hope4eva »

im sorry ur going thru this its so hard to explain that intercourse is painful right now i deal with it but im scared if i get worse i will no longer b able to please my hubby its a horrible feeling try to talk to him in a calm way explaining everything u feel and not trying to get all personal but try giving him head that makes mine happy lol well i just wanted to say i sympathize with u u can pm me to talk if u want
hope4eva
Posts: 76
Joined: Fri Mar 23, 2012 7:06 pm

Re: Do PN and PNE people have IC as well?

Post by hope4eva »

i just orderd that book 2 damn why urs come so late i get mine nxt wk
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kia kaha
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Location: Dunedin, New Zealand
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Re: Do PN and PNE people have IC as well?

Post by kia kaha »

hope4eva wrote:i just orderd that book 2 damn why urs come so late i get mine nxt wk
I'm in New Zealand, and 10 day delivery was $30, so had to opt for the $18 delivery which was 4 weeks, I'm broke, can't work because of this pain in the butt illness!
Chronic Pain pudendal area for 3 years, after a hard jolt to right side.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
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Bathsheba
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Joined: Sat Oct 15, 2011 6:18 pm
Location: Northern, VA

Re: Do PN and PNE people have IC as well?

Post by Bathsheba »

Kia-

To follow up. How are you doing?

FYI, there's another person who posts on this board named Larry who also had PN caused by a hydrodistention of the bladder in 1999. He went from pain treatable by aspririn when he went into surgery to level 9 on a 1-10 scale when he woke up. In my case the onset of pain was masked by pain meds. About a month after the hydro surgery I had tingling in my genitals, when I went off the pain meds for IC (the urologist finally admitted I didn't have IC), the pain level skyrocketed.

I have the same urinary hesitancy that you do but not nearly as bad. I have to think about urinating and when to go for the most part. If I am ready to burst I will get a strange feeling, nothing like what I felt before. I have to concentrate on urinating-push. It isn't natural. However, I can go.

Take care and enjoy the surf when you can.
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
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kia kaha
Posts: 106
Joined: Tue Aug 23, 2011 1:32 am
Location: Dunedin, New Zealand
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Re: Do PN and PNE people have IC as well?

Post by kia kaha »

Doing much better.

Pretty much the bad symptoms that arose from the hydrodistention surgery waned after about 3-4 weeks.
Prior to that I never really had any problems with hesitancy, or frequency.
I am told i do have IC, but after the flare after the op, I still don't get the frequency/hesitancy.

I have also just been doing a series of treatments over the last few months called 'bioresonance' which have helped my IC type symptoms, mostly the pain by about 80% !

so hoping that holds, and i don't have to keep travelling the 3 hours there and back again for the appointments/treatments.
costly! and we don't have much money, also I have to lie in the car to travel , as i cant sit due to the PN/PNE symptoms.
Chronic Pain pudendal area for 3 years, after a hard jolt to right side.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
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