New here - could use any help / advice!
Posted: Wed Sep 28, 2011 2:52 pm
Sept 28, 2011
My Pudendal Story -
Hello my name is Monica and I am very new to the pudendal ordeal. I guess I am still very confused on a lot of issues and ended up here looking for more information. I will try to sum up my road to here (sorry if my story is a bit long) and I would appreciate any feedback from anyone -
My journey started in April 2010, when I started having what I thought was bladder issues and went to my OBGYN. He thought I had a bladder infection, which was not the case. He gave me a couple of different medicines to try to help with bladder spasms. After about a month of this he then referred me to a Urologist. Well trying to make somewhat a shorter story of this - after two different Urologists and a multitude of different tests and procedures I was told that I had Interstitial Cystitis Syndrome. I was started on something called “Bladder injections” and told to follow a special diet very strictly, which I did. As I am going thru this process I keep trying to explain how much pain I am feeling and that I feel what is being done is not helping. The Urologist then tells me that she feels I am having “pelvic floor dysfunction” along with the ICS and refers me on to a PT. Ok, so now I feel by some strange luck that what helped me get to where I needed to be. After my first visit with the PT - she was great - very caring and informative. After discussing my concerns of not feeling like I was making any improvements she gave me a Dr’s name in Houston, Tx of a Gyno/Urologist - now we are still thinking that I have ICS. Now fast forward a little bit…..do not have ICS - he referred my on to Dr Charles Popeney, Neurologist in Tx …..
First please let me say that I have no problems with Dr Popeney. The things he has done has given me great
relief - but feel that all things are not quite explained in full detail….
1st visit - completed a questionnaire and explained how I ended up there. Told short life history. Have worked the same desk job for 30 years, no type of accident / surgery that could pin point injury to pudendal nerve - Scheduled a second visit with a EMG/NCS test planned along with my first CT guided nerve block - with the plan that if I got any relief from this nerve block a second one would be done in 30 days.
2nd visit - March 2011 EMG/NCS test completed - do not understand results -
Summary reads - normal study. The RT distal motor pudendal latency was 1.1 ms and the LT was
2.2ms (NL<4MS) The RT BCR was 29ms and the LT was 30ms (NL <45ms) EMG WAS NL.
Had first CT guided nerve block at Memorial Herman Hosp in Houston Tx -
(seemed to make my symptoms worse at first then some relief)
Called and let Dr Popeney’s know that yes there was definitely come relief from the nerve block …so he scheduled 2nd one for April 2011.
Well I can say that I was very excited after receiving the 2nd one - I had complete relief (after the initial period of worsening) …..yes complete ….I was not experiencing any pain and felt like my old self for the first time in a year. My relief lasted for almost 5 months…..which when I called the Dr’s office was told that seemed very good and they would schedule another CT guided nerve block - Sept 23, 2011. Well today is Sept 28th and yes the block has started to give me more relief. I guess I am confused….is this what I will have to do for the REST OF MY LIFE??? …..continue getting nerve blocks periodically ….. When I asked the nurse this question it was answered as yes more than likely without any further explanations. …
Well that is my story of how I got here……now sorry but still have more questions…..SYMPTOMS???
I have read plenty of stories here and there on the internet and understand that everyone may vary in /symptoms. Here is what I experience and was wondering if they seem to fit in ….I seem to have what I guess is the “normal” symptoms…all of my pains seem to be in my vaginal area - pelvic floor and / or bladder area ….stabbing pain while sitting, driving, the urgency in urinations -pain seems to come on somewhat strong when my bladder fills and right after urinating, constipation also seems to be a problem when I am in what I call a “flare up”. Now I guess my most confusing symptom (which I have not run across on here ) is sometime getting extreme stabbing pains while I am walking??? This pain can catch me mid stride or once I get up from a sitting/laying position. They are very intense and cause me have to walk very, very slowly or even lay back down till stabbing pain subsides. And yet another really confusing one is …..this very same stabbing pain can wake me out of a dead sleep???
Again I am really sorry for making this so long….just trying to give as much information in order to receive any additional help along this very frustrating journey.
Thanks again
Monica
My Pudendal Story -
Hello my name is Monica and I am very new to the pudendal ordeal. I guess I am still very confused on a lot of issues and ended up here looking for more information. I will try to sum up my road to here (sorry if my story is a bit long) and I would appreciate any feedback from anyone -
My journey started in April 2010, when I started having what I thought was bladder issues and went to my OBGYN. He thought I had a bladder infection, which was not the case. He gave me a couple of different medicines to try to help with bladder spasms. After about a month of this he then referred me to a Urologist. Well trying to make somewhat a shorter story of this - after two different Urologists and a multitude of different tests and procedures I was told that I had Interstitial Cystitis Syndrome. I was started on something called “Bladder injections” and told to follow a special diet very strictly, which I did. As I am going thru this process I keep trying to explain how much pain I am feeling and that I feel what is being done is not helping. The Urologist then tells me that she feels I am having “pelvic floor dysfunction” along with the ICS and refers me on to a PT. Ok, so now I feel by some strange luck that what helped me get to where I needed to be. After my first visit with the PT - she was great - very caring and informative. After discussing my concerns of not feeling like I was making any improvements she gave me a Dr’s name in Houston, Tx of a Gyno/Urologist - now we are still thinking that I have ICS. Now fast forward a little bit…..do not have ICS - he referred my on to Dr Charles Popeney, Neurologist in Tx …..
First please let me say that I have no problems with Dr Popeney. The things he has done has given me great
relief - but feel that all things are not quite explained in full detail….
1st visit - completed a questionnaire and explained how I ended up there. Told short life history. Have worked the same desk job for 30 years, no type of accident / surgery that could pin point injury to pudendal nerve - Scheduled a second visit with a EMG/NCS test planned along with my first CT guided nerve block - with the plan that if I got any relief from this nerve block a second one would be done in 30 days.
2nd visit - March 2011 EMG/NCS test completed - do not understand results -
Summary reads - normal study. The RT distal motor pudendal latency was 1.1 ms and the LT was
2.2ms (NL<4MS) The RT BCR was 29ms and the LT was 30ms (NL <45ms) EMG WAS NL.
Had first CT guided nerve block at Memorial Herman Hosp in Houston Tx -
(seemed to make my symptoms worse at first then some relief)
Called and let Dr Popeney’s know that yes there was definitely come relief from the nerve block …so he scheduled 2nd one for April 2011.
Well I can say that I was very excited after receiving the 2nd one - I had complete relief (after the initial period of worsening) …..yes complete ….I was not experiencing any pain and felt like my old self for the first time in a year. My relief lasted for almost 5 months…..which when I called the Dr’s office was told that seemed very good and they would schedule another CT guided nerve block - Sept 23, 2011. Well today is Sept 28th and yes the block has started to give me more relief. I guess I am confused….is this what I will have to do for the REST OF MY LIFE??? …..continue getting nerve blocks periodically ….. When I asked the nurse this question it was answered as yes more than likely without any further explanations. …
Well that is my story of how I got here……now sorry but still have more questions…..SYMPTOMS???
I have read plenty of stories here and there on the internet and understand that everyone may vary in /symptoms. Here is what I experience and was wondering if they seem to fit in ….I seem to have what I guess is the “normal” symptoms…all of my pains seem to be in my vaginal area - pelvic floor and / or bladder area ….stabbing pain while sitting, driving, the urgency in urinations -pain seems to come on somewhat strong when my bladder fills and right after urinating, constipation also seems to be a problem when I am in what I call a “flare up”. Now I guess my most confusing symptom (which I have not run across on here ) is sometime getting extreme stabbing pains while I am walking??? This pain can catch me mid stride or once I get up from a sitting/laying position. They are very intense and cause me have to walk very, very slowly or even lay back down till stabbing pain subsides. And yet another really confusing one is …..this very same stabbing pain can wake me out of a dead sleep???
Again I am really sorry for making this so long….just trying to give as much information in order to receive any additional help along this very frustrating journey.
Thanks again
Monica