Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 I hope to get some useful replies out of my email.. I usually don't. I have not posted or even read any of my groups mails in about a month, but had a few things on my mind and had hopes some of you could offer some opinions. Let me refresh you on my condition. I have had all the crazy test and seen all the specialist and so on. I was diagnosed with vulvodynia after almost a year of terrible burning. Went through a terrible bought of depression and thought of course I'm dying.. I have tried a ton of different meds and just CANNOT tolerate them. My pain started with what I said was a deep burn in my vaginal canal and right up my b-hole. No one could find out where exactly it was coming from. Upon contact I had no pain. After about 8 months my tailbone starting hurting and still kills me. It's been 1 year and 4 months now. I have been doing PT on and off during all this. I have also been seeing a chiropractor and doing neromuscular massage. Pain management suggested a gang liar impar injection, but I haven't gone that route yet. My reason for the mail is FINALLY my PT hit on a spot that recreated or spiked my burning. When she does internal work on the vagina and squeezes the inner muscles just inside the vagina I can feel the burn. So I cant remember now what these muscles are called but was wondering if any of you had the same pain source. Also when she puts pressure on these muscles, I feel it all the way in my tail bone. I would love to hear and and all info on anyone who has had problems with these same muscles and tail bone pain. Most of all hearing of what helped would be great!! I haven't had any rectal work, but have thought about it. I don't have the b-hole pain anymore THANK GOD! but I still have major flairs in my vagina and am rarely down lower than a 3 on pain.. Thanks Lee Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 How awful..have u thought it could be the pudendal nerve?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 no idea Subject: Re: PLEASE READTo: VulvarDisorders Date: Friday, October 24, 2008, 10:09 AM How awful..have u thought it could be the pudendal nerve?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 the girls from pelvicpainrehab will rule in or rule out the pudendal nerve. A visit with them will cost about 300.00 for the first visit. A visit to Dr. Weiss (I do think he's wonderful) will cost about 1200.00. Go to the PTs and then to the doctor if necessary. To: VulvarDisorders Sent: Friday, October 24, 2008 3:35:10 PMSubject: Re: Re: PLEASE READ no idea From: ciallf <ciallf (AT) yahoo (DOT) com>Subject: Re: PLEASE READTo: VulvarDisorders@ yahoogroups. comDate: Friday, October 24, 2008, 10:09 AM How awful..have u thought it could be the pudendal nerve?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 It sounds like it could be some sort of pudendal neuralgia (what I was diagnosed with). The pudenal nerve supplies feeling to your genital and butt area and can can sometimes become overstimulated or become pressed on by other parts of your body that out of alignment and cause nerve pain, burning, tingling, and other types of pain in those areas. I didn't have any infections or anything, but I still had persistant pain, so I went a GYN that specializes in pudendal neuralgia and recurring infections and he diagnosed me. It really helped knowing what the cause was and what I could do to make it better. I would look into finding a doctor that treats pudendal neuralgia (could be a GYN, PT, or Neurologist) so you can determine whether your pudendal nerve is acting up. Good luck!!!!!! no idea Subject: Re: PLEASE READTo: VulvarDisorders Date: Friday, October 24, 2008, 10:09 AM How awful..have u thought it could be the pudendal nerve?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 I did ART therapy and it really helped my pudendal pain.. > > From: ciallf > Subject: Re: PLEASE READ > To: VulvarDisorders@ yahoogroups. com > Date: Friday, October 24, 2008, 10:09 AM > > > How awful..have u thought it could be the pudendal nerve?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Lee Ann, Have any of the PT's you've seen checked you for proper alignment of your spine? Is your tailbone knocked over to one side...did you have a bad fall on it that you can remember? If the PT has finally found the spot that increases your pain...then give it a go for awhile. There are so many muscles back there...and if any are pulling harder to one side or they are tight and tense...it can definitely refer pain. You can do PT work on yourself. Either internal or external. I have done both...so has my hubby. I'm not sure who you are currently seeing for a PT....but (femifesto) has worked with a good one down in NC...you might want to ask her for the name. I wish so much I had answers for you...but unfortunately, this seems to be a process of each of us discovering what helps through trial and error. If PT is finally hitting the area, though, I say give a good shot. Hope you feel better soon... Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 That is what happened to me..it was my tail bone going to one side..when it was adjusted the first 2 times I was like flying high and almost pain free..then the last 2 sessions caused itching (nerve pain) in the perineal area. It is so touch and go!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 This is to all of you actually. I need to vent a line or two. It seems like I don't have much of a husband anymore through all of this. It seems as though that he is off in another world. I know this definetly takes a huge toll on him. I have about two or three other health options I can persue with a great doctor, yet at times I get in a stagnate mode. My husband is being promoted and the USMC ball is around the corner if you get the idea. PLEASE READ I hope to get some useful replies out of my email.. I usually don't. I have not posted or even read any of my groups mails in about a month, but had a few things on my mind and had hopes some of you could offer some opinions. Let me refresh you on my condition. I have had all the crazy test and seen all the specialist and so on. I was diagnosed with vulvodynia after almost a year of terrible burning. Went through a terrible bought of depression and thought of course I'm dying.. I have tried a ton of different meds and just CANNOT tolerate them. My pain started with what I said was a deep burn in my vaginal canal and right up my b-hole. No one could find out where exactly it was coming from. Upon contact I had no pain. After about 8 months my tailbone starting hurting and still kills me. It's been 1 year and 4 months now. I have been doing PT on and off during all this. I have also been seeing a chiropractor and doing neromuscular massage. Pain management suggested a gang liar impar injection, but I haven't gone that route yet. My reason for the mail is FINALLY my PT hit on a spot that recreated or spiked my burning. When she does internal work on the vagina and squeezes the inner muscles just inside the vagina I can feel the burn. So I cant remember now what these muscles are called but was wondering if any of you had the same pain source. Also when she puts pressure on these muscles, I feel it all the way in my tail bone. I would love to hear and and all info on anyone who has had problems with these same muscles and tail bone pain. Most of all hearing of what helped would be great!! I haven't had any rectal work, but have thought about it. I don't have the b-hole pain anymore THANK GOD! but I still have major flairs in my vagina and am rarely down lower than a 3 on pain.. Thanks Lee Ann Quote Link to comment Share on other sites More sharing options...
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