Severe buring in clitoris with urination-

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JoyHysell
Posts: 7
Joined: Wed Apr 13, 2011 12:20 am
Location: Ohio

Severe buring in clitoris with urination-

Post by JoyHysell »

I have had severe burning in my clitoris with urination. It burns before my urine ever comes out and then it burns during and lingers for about an hour. The area gets really hot and I have to hold ice there. Sometimes I can go and it don't burn and an hour later it will. I have had this for 3 years and have been to numerous doctors all around my area with no help. Been misdiagnosed with IC, Vulvodynia,Ureathra syndrome and everything else you can think of. The only thing I can think of that may have caused this to start was a straddle injury to the front area urethra/clitoris area. Finally, I flew to California to see Dr, Aaron Filler nervemed.com and he did numerous injections and then the following day performed surgery. He went in on each side of my butt about a 1 inch incision. He cut both piriformis muscles to allow room for the nerve to run through, I had several nerve entrapments, ahsesions, and they nerve was growing in the muscle. My left side was worse than the right side but the right also had several entrapments. It has been 4 weeks tomorrow since surgery. I am just wondering if anyone else has had this symptom and how long it takes to get any relief. It is mainly severe burning when I urinate, but it even burns before I even pee. I had two cystocopy's and they both showed nothing. So I am hoping this was the culprit. I am so tired of living in pain. I am only 24 and I have had this for 3 years now.I would appreciate any advice anyone has! Thanks :) :D
Surgery with Dr. Filler March 2011
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Severe buring in clitoris with urination-

Post by ezer »

JoyHysell wrote: <snip> Finally, I flew to California to see Dr, Aaron Filler nervemed.com and he did numerous injections and then the following day performed surgery. He went in on each side of my butt about a 1 inch incision. He cut both piriformis muscles to allow room for the nerve to run through, :D
I am a bit surprised that you had surgery the day after your blocks. Usually Dr.Filler wants to assess the results from the blocks to see if you are a candidate for surgery. The day prior to surgery you have a check-up with a designated physician. Why the rush?
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
JoyHysell
Posts: 7
Joined: Wed Apr 13, 2011 12:20 am
Location: Ohio

Re: Severe buring in clitoris with urination-

Post by JoyHysell »

The injections confirmed that I had entrapments along with the MRN. I was already out there and wanted to get it fixed while I was there instead of eaiting for shots to help. The day after all the shots I was still having burning. SO, he said he thought I could really benefit from the surgery. I have had this 3 years, I really don't want to drag it out any longer. More plane tickets, rental car, hotel, it would have been much more expensive to leave and then have to fly back out in 2 weeks.
Surgery with Dr. Filler March 2011
JoyHysell
Posts: 7
Joined: Wed Apr 13, 2011 12:20 am
Location: Ohio

Re: Severe buring in clitoris with urination-

Post by JoyHysell »

Oh, by the way. The surgery was two days after the injections. I posted it wrong.
Surgery with Dr. Filler March 2011
susibee
Posts: 60
Joined: Wed Mar 16, 2011 4:12 am
Location: New Hampshire

Re: Severe buring in clitoris with urination-

Post by susibee »

Joy, I'm sorry you're suffering. Is your pain any different after the surgery? Are you on any medications specifically for nerve pain?
Vulvodynia diagnosed '01; symptom was occassional vulvar itching/rawness after sex.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Severe buring in clitoris with urination-

Post by Violet M »

Joy, I know there are people who had the same symptoms you are describing. My symptoms were more of a constant burning - not just associated with urination.

It's still pretty early after your surgery to draw a conclusion regarding whether it has been a success and I hope that you will continue to see improvements.

Unfortunately, we have not heard many success stories from Dr. Filler's surgeries, possibly because he tries to do the least invasive procedure possible which may mean the nerve does not get completely decompressed.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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