Interstistial cystitis

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Interstistial cystitis

Post by calluna »

Hi Torbjorn

I notice that you take Lyrica - blurred vision is a well known side effect of this drug. I get it myself and it always seems worse when I am having a pain flare, I have no idea why it happens like this but maybe this is something to bear in mind.

I hope that things improve for you soon.
Torbjorn
Posts: 14
Joined: Sun Jul 24, 2011 1:02 pm

Re: Interstistial cystitis

Post by Torbjorn »

hi just wondered does anyone have allergy related problems. I had my physio check the pn, i came out in hives everywhere my vulver and anus where itchy and sore bulging. i felt generally like my insides were like a rotten apple. Ive felt flue like symptoms since the exam. very very weak. im super allergic to food s anyway , is this all part of pn.I cant seem to find anyone responding to this, I feel I may be alone in these symptoms.Helen
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Interstistial cystitis

Post by HerMajesty »

I have zero allergies but wasted a lot of time on allergists before I figured this out, bcause i have neuropathic itch. Neuropathic itch shows up on an emg same as pain but your brain processes the sensation different. A neuropathy can cause any kind of change in sensation, not just pain. Then your skin gets torn up from scratching. If you have not already done this, please get food allergy testing from a Board certified allergist before accepting that you have allergies to food or anything else, or that the skin problems you have are allergic hives. Depending on how well you were evaluated, you might be allergy free but be suffering from neuropathic itch, If so, your skin can recover by focus on neuropathy treatment, and by preventing scratching of itchy areas. I minimze my discomfort by wearing loose clothing (boxers under hippie skirts mainly), and instead of scratching I use topical capsacin in a VERY dilute form (Get Capsacin HP in the arthritis aisle and dilute by mixing a bit of it into a small tub of vaseline or diaper resh cream), and/or topical menthol products.

edit: if it only happened after physio exam it could be latex allergy as well, to the physio's gloves.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Interstistial cystitis

Post by calluna »

Oh good call HM!

I bet you are right, and it is latex allergy. My other half has this, it can be quite a dramatic reaction and make you feel pretty ill. Torbjorn, I hope you are feeling better now.
Torbjorn
Posts: 14
Joined: Sun Jul 24, 2011 1:02 pm

Re: Interstistial cystitis

Post by Torbjorn »

Thanks all I have decided to go with a pysio, and check out mu pudendal nerve. Have anyone of you had allergies to perfume foods or tosins, fuel etc thanks Helen x
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Interstistial cystitis

Post by calluna »

Allergies - no. Wheat sensitivity - yes. But that is not related to my PN.

Helen, the symptoms of feeling so ill, and the swelling, itching, soreness, coming out in hives, flu-like symptoms - that all came on after the visit to the physio? Did she wear latex gloves to examine you?

If so, you may be allergic to latex, as HM suggests. This can make you feel quite ill. When you go back, please make sure that she uses latex-free gloves. Just to be on the safe side!
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