Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Pam, How are you doing? I am glad to see you found a good neurologist who has other options to try before the surgery. Let me know how things are doing. Bunny /| |\ . . ( ! ) _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 , I'm hanging in there and still keeping the hope that I will feel better soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi, Pam! Hope you don't mind me butting in here! My doctor diagnosed my dysesthetic vulvodynia both by my symptoms and by the thorough pelvic exam she gave me. She pressed on all kinds of muscles in my vagina (and later, my rectum), pressed on the tissue under my sit bones (OW!), had me sit up and bend forward and do other stuff so she could see if my pelvis was asymmetric, and did all kinds of that sort of stuff to see where I had asymmetry and high-tone pelvic muscles. (I don't think everyone who has high-tone pelvic muscles necessarily has to have pelvic asymmetry - Tom? - but I did.) Believe me, at some points during the exam I was yelling ouch! at the same time I was blown away by the fact that simply pressing on certain parts of my body could evoke such pain. After her incredibly thorough exam, she diagnosed me with pudendal nerve entrapment, pelvic floor dysfunction/high-tone pelvic muscles, and SI joint problems. Believe it or not, my MRI looked perfectly normal for a 43-year-old. I have heard of some women having an MRI that *did* show some abnormality, but mine didn't. I remember my doctor talking with me about the " slight bulging " of 2 discs, which she said she would expect to see in a person of my age. But she did warn me that I had to really take care of my back, because the discs that were bulging (I can't remember which two!) could press on the pudendal nerve if they bulged out more. So if you have bulging discs or some other abnormality, your MRI might enable your doctor to pin down the source of your pain. Regarding your rectal surgery, you may be on to something. Remember, the pudendal nerve has a branch that goes to the rectum. I wonder if it is possible the nerve got touched or compressed or something during your surgery(ies)? You really need a doctor who can put all the pieces of your puzzle together for you! I've been reading a lot about neuropathic pain lately, and it is incredibly complicated. There is just so much that medicine does not yet understand about these sorts of pain, and the pain can act in crazy ways that seem counter-intuitive to anyone who knows the " normal " ways our body signals pain. sigh. So, after all my yakking here... Even if your MRI looks perfectly normal, that doesn't necessarily mean you don't have some kind of neuropathic pain. You may ultimately need to consult with someone who specializes in neuropathic pain. If s/he had a deep understanding of vulvodynia, that would be even better, but at least s/he would understand the nature of the pain and could perhaps nail down a diagnosis of DV or not for you. Take care, Pam. Love, Suzy --- march301955 wrote: > Rose, > I also saw an neurologist who feels that my pain > and constant burning is nerve related. The > neurologist > is having me have an MRI on the beginning of April. > I am interested in how they were able to diagnose > you having pudendal neuralgia by doing a rectal > exam? > I have had three rectal surgeries in the past and > after > the last surgery is when my burning and pain began, > first rectally then moved on to the vulva and > vaginal > area. I have never had anyone in the medical field > do a rectal exam on me since this all began and am > now wondering if this is how pudendal neuralgia is > confirmed? Sorry for all the questions, but I really > think this could be part of my problem. > Pam > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Pam, nope you don't sound desperate. You just sound like someone who needs to connect with the right doctor/healer, and you're going about getting the information you need! Here's 's phone number: . When she is seeing patients in the office, she usually cannot take phone calls because she is so preoccupied. So you may have to leave your number and have her call you back. She also always responds to my faxes (fax # ). attends all kinds of conferences, so she probably knows a goodly number of the doctors who are treating vulvar pain. There is also a woman in the office named Marie who seems to know a lot of what's going on. She's not one of the receptionists, and she's not one of the medical professionals; she may be the office manager. She is very nice, and perhaps she would know of a doctor you can see. Good luck, and LMK how you make out. You are in my thoughts every day. Love, Suzy --- march301955 wrote: > > > Hi Suzy, > No you are not butting in, I really appreciate > all and any information that could lead to my > geeting better. Sounds like you have such a > great doctor you are seeing and very thorough. > Well, here is my question, could you possibly > give me 's number? I asked Rose also for > her doctors number even though she lives in > Ontario. I thought maybe just maybe one of > them would possible know of someone here that > could help me. I know I probably sound somewhat > desperate but I am not giving up until I find > some sort of relief, even if I have to search > and search until I find help. I still have a lot > living left to do in this middle age body! > > Hugs, Pam __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Suzy and Pam, You are correct...not everyone has asymmetry even they have high tone pelvic muscles. If they are high toned equally on both sides..it is a tug of war and a draw at that. TKOPT suzy fromage wrote: > Hi, Pam! Hope you don't mind me butting in here! > My doctor diagnosed my dysesthetic vulvodynia both by > my symptoms and by the thorough pelvic exam she gave > me. She pressed on all kinds of muscles in my vagina > (and later, my rectum), pressed on the tissue under my > sit bones (OW!), had me sit up and bend forward and do > other stuff so she could see if my pelvis was > asymmetric, and did all kinds of that sort of stuff to > see where I had asymmetry and high-tone pelvic > muscles. (I don't think everyone who has high-tone > pelvic muscles necessarily has to have pelvic > asymmetry - Tom? - but I did.) Believe me, at some > points during the exam I was yelling ouch! at the same > time I was blown away by the fact that simply pressing > on certain parts of my body could evoke such pain. > After her incredibly thorough exam, she diagnosed me > with pudendal nerve entrapment, pelvic floor > dysfunction/high-tone pelvic muscles, and SI joint > problems. Believe it or not, my MRI looked perfectly > normal for a 43-year-old. I have heard of some women > having an MRI that *did* show some abnormality, but > mine didn't. I remember my doctor talking with me > about the " slight bulging " of 2 discs, which she said > she would expect to see in a person of my age. But > she did warn me that I had to really take care of my > back, because the discs that were bulging (I can't > remember which two!) could press on the pudendal nerve > if they bulged out more. So if you have bulging discs > or some other abnormality, your MRI might enable your > doctor to pin down the source of your pain. > > Regarding your rectal surgery, you may be on to > something. Remember, the pudendal nerve has a branch > that goes to the rectum. I wonder if it is possible > the nerve got touched or compressed or something > during your surgery(ies)? You really need a doctor > who can put all the pieces of your puzzle together for > you! I've been reading a lot about neuropathic pain > lately, and it is incredibly complicated. There is > just so much that medicine does not yet understand > about these sorts of pain, and the pain can act in > crazy ways that seem counter-intuitive to anyone who > knows the " normal " ways our body signals pain. sigh. > > So, after all my yakking here... Even if your MRI > looks perfectly normal, that doesn't necessarily mean > you don't have some kind of neuropathic pain. You may > ultimately need to consult with someone who > specializes in neuropathic pain. If s/he had a deep > understanding of vulvodynia, that would be even > better, but at least s/he would understand the nature > of the pain and could perhaps nail down a diagnosis of > DV or not for you. > > Take care, Pam. > > Love, > > Suzy > > --- march301955 wrote: > > Rose, > > I also saw an neurologist who feels that my pain > > and constant burning is nerve related. The > > neurologist > > is having me have an MRI on the beginning of April. > > I am interested in how they were able to diagnose > > you having pudendal neuralgia by doing a rectal > > exam? > > I have had three rectal surgeries in the past and > > after > > the last surgery is when my burning and pain began, > > first rectally then moved on to the vulva and > > vaginal > > area. I have never had anyone in the medical field > > do a rectal exam on me since this all began and am > > now wondering if this is how pudendal neuralgia is > > confirmed? Sorry for all the questions, but I really > > think this could be part of my problem. > > Pam > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Pam, don't feel stupid! You never know, maybe that guy will remember what he overheard someday when he meets a woman with vulvodynia, and he'll be sympathetic. He's probably *still* wondering about what he heard, though. I accidentally sent an email to my hubby at work the other day, and mentioned my vulvodynia in it - well, I *thought* it went to my hubby. Instead, I sent it to his father's email address (they have the same email name, just different ISPs). hee, hee! My f-i-l has no idea that I have vulvodynia. Good thing I didn't go into any details! Hah! Anyway, he just silently forwarded the stray message to my husband. I wonder if he's been busy surfing the net trying to figure out what vulvodynia is??? Have you had an MRI before? I had one in November, and can clue you in as to what to expect if you've never had one. Take care. Suzy --- march301955 wrote: > Hi Rose, > When do you have your MRI? I was told that mine > would > last about an hour. I am having mine April 7th (on a > Sunday, which is different but the nice part is that > I don't have to take off work. > I plan on calling the Wasser pain center on Thursday > on > my day off. I hate calling from work because I don't > always > have privacy when on the phone. I remember not to > long a go > being on the phone with the nurse, I was describing > how the > cream the doctor had prescribed had burned my inner > thighs > and I was going into detail how irritated and red my > vulva > was, I turned around and standing right behind me > was the > auditor from the bank. Poor young guy, his face was > beat > red not to mention how stupid I felt. Since then I > try to > be more discreet. > > Take care and let me know how your MRI goes. > > Hugs, Pam > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 I'll concur with that - my pelvic floor muscles are in high tone, but according to my osteopath I don't have any pelvic or sacral assymetry. Unless my osteopath is wrong about that, but he seems very clued-up and thorough so i doubt it. Makes sense for me because my problems were triggered very suddenly by an incredibly itchy yeast infection - not slowly, or by a back injury or anything. I think the yeast infection was just so severe that it threw my muscles into spasm - all my neuromuscular connections went completely haywire down there ... The good news is that the biofeedback does seem to be helping - after 5 months of it I am finally getting some improvement, though I still have a way to go so no celebrations yet. andrea > Suzy and Pam, > You are correct...not everyone has asymmetry even they have high tone pelvic muscles. If they are high toned equally on both sides..it is a tug of war and a draw at that. > TKOPT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 pam, What is neruopathic pain? Is this like pain with the nerves, and not just associated with the skin? march301955 wrote: Seema,I forgot to add that yes it was Dr. onthat I was seeing in Milwaukee. I still feelshe is a good doctor, and she did help meget my skin tissue looking healthy, it's just so frustrating when you feel that adoctor is giving because they can't makeyou better. I am realizing that neuropathicpain is hard to treat.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Tracey, My skin tissue is healthy now with no skin irritation but the burning is still there plus I experience inner thigh burning. Sometimes I wake up in the middle of the night and feel like I am being electricuted through my whole pelvic area and into my thighs, it's awful. I only experience burning no itching. I have been told by three physicians that my pain is neuropathic pain, probably involving the pudendal nerve. I hope this helps. Hugs, Pam PS I am not sure what the itching in the pubic area could be caused from. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Pam, Have any of them tried a block on that nerve ? Not only woulfdthat give you a dx but also would be treatment if it works! The Helena womens clinic in san did this kind of nerve block if you live close to there? What suggestion did they give you when they told you thats what they thought it was? Daphne Re: Pam Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Hi Pam, Did you contact the Wasser Pain Clinic in Toronto yet? Just curious. Rose ---------- > > To: VulvarDisorders > Subject: Re: Pam > Date: Wednesday, April 03, 2002 8:46 PM > > Tracey, My skin tissue is healthy now with no > skin irritation but the burning is still there > plus I experience inner thigh burning. Sometimes > I wake up in the middle of the night and feel > like I am being electricuted through my whole > pelvic area and into my thighs, it's awful. > I only experience burning no itching. I have > been told by three physicians that my pain > is neuropathic pain, probably involving the > pudendal nerve. I hope this helps. > > Hugs, Pam > > PS I am not sure what the itching in the pubic > area could be caused from. > > > > *****END OF MESSAGE***** > ------------------------------------------------- > To post message: VulvarDisorders > To Subscribe: VulvarDisorders-subscribe > Unsubscribe: VulvarDisorders-unsubscribe > List owner: VulvarDisorders-owner > > ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Daphne, I have an appoinment with the pain clinic on the 11th and will talk to them about a block right to the nerve. I wonder if that would be the same as the epidural into the pudendel nerve? The pt at the pain clinic said that may be an option for me. I also am having an MRI this weekend so hopefully that may shed some light into the situation. Take care, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Hi Rose, I was planning on calling them but after talking to the neurologist and my vv specialists they both said that the pain clinic I went to last week is one of the best for pelvic floor problems, so I ended up not calling them last week, but I will probably still call them today or tomorrow just get there opinion, sure can't hurt. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Hi Rose, I was planning on calling them but after talking to the neurologist and my vv specialists they both said that the pain clinic I went to last week is one of the best for pelvic floor problems, so I ended up not calling them last week, but I will probably still call them today or tomorrow just get there opinion, sure can't hurt. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Pam and anyone else with neuropathic pain, You might just want to check this page out. The group is a really nice bunch and it is possible it could be helpful. Leah Re: Pam Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Pam and anyone else with neuropathic pain, You might just want to check this page out. The group is a really nice bunch and it is possible it could be helpful. Leah Re: Pam Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Pam and anyone else with neuropathic pain, You might just want to check this page out. The group is a really nice bunch and it is possible it could be helpful. Leah Re: Pam Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Pam, thats great that they are giving you that option, I hope it is the answer for you. If they do it and it works you have an answer if not no harm is really done. Its worth the try. from what I was told they do the injection right into the nerve but you want to make sure you go somewhere that they have done alot of them , I guess it is a difficult nerve to hit?? keep us posted , Daphne Re: Pam Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Pam, thats great that they are giving you that option, I hope it is the answer for you. If they do it and it works you have an answer if not no harm is really done. Its worth the try. from what I was told they do the injection right into the nerve but you want to make sure you go somewhere that they have done alot of them , I guess it is a difficult nerve to hit?? keep us posted , Daphne Re: Pam Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 now be careful please, I have been told and read in alot of places that you should never get that p nerve cut, so please don't let them talk you into doing anything like that, Traci Re: Pam Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 now be careful please, I have been told and read in alot of places that you should never get that p nerve cut, so please don't let them talk you into doing anything like that, Traci Re: Pam Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 Traci, I think you miss understood what I meant, I was talking about possibly having a epideral to the pudendel nerve not having the nerve cut. Do doctors actually do that? It sounds kind of scary to me. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 Dear Pam, I posted the sites again...let me know if it doesn't work. Leah Leah ? Hi Leah,I didn't see the page that you mentionedfor neuropathic pain on your post. Couldyou post it again. Thanks a bunch.Hugs, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Hi Pam, I was wondering - when you had the steroid injection, was it injected into the nerve? I just read a site that talked about pudendal neuralgia and it basically stated that the steroid must be injected straight to the nerve. What kind of dye did they give you - I had iodine when they did my CAT scan. It gave me a warm sensation, almost like you feel the urge to urinate. But after the scan was done, that feeling was gone. I hope you are doing better. I'm doing miserable today. I just don't feel like I have the strength to deal with this anymore. I very much feel like I don't want to live anymore - I don't feel there is any hope in my condition. What other doctors can I go to? I remember when I went to the naturopath - I was hoping she would say it's yeast!! But then, she told me this is definitely not yeast. That's wonderful news - they kept telling me it's an autoimmune disease. Well, why isn't anything working then? Why do I still have so much pain? I am so tired of this that I just can't do it anymore. I want to feel like a young woman again - instead, I feel like I'm 70. I just don't know what to do anymore - but I can't keep on going on like this, without any hope. Thanks for listening to my rant. Love, Seema > Hi Seema, > I still have yet to had a chance to research the neuro > stim implant, I have been busy planning a bridal > shower for my niece, but I plan on spending some > quality time on the computer by the end of this > week. Today I han my MRI, it was painless but I > still didn't like it. I did get a bit anxious being > in that tube for 2 1/2 hours. I'm hoping that > it shows something that will shed some light on my > situation. I should here back from the neurologist > by the end of next week. I have noticed that I am > having more then my usual urethra burning today and > I am wondering if it could be from the dye that I had > injected into my vein for the MRI? > > Take care, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Yes Pam I would really like that. does really well out of all her sessions for about 45 minutes and then needs a break. I'm hoping they will accommodate her at school. I am trying not to focus on this until the IU gives me more information. It's still there though. G Quote Link to comment Share on other sites More sharing options...
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