Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Dear Sheila, Glad to have you with us and I am sure you will get alot of support from this group. Vulvodynia is inflamtion of the vulvar area with no known cause. Many times there is no inflammation either. I hope someone in our group can identify with your problem. I have had a chronic yeast infecton for 3 months now and am on Diflucan twice a week. I am feeling better. I see you are on the east coast. Where are you from? I live here in Phila and am seeing Velma Weitz a vulvar specialist at Temple University Hospital in Phila. She is an excellent nurse practioner who works along side Dr Nyirjesy. Again welcome and girls let's help Sheila out. Michele D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Dear Sheila, Glad to have you with us and I am sure you will get alot of support from this group. Vulvodynia is inflamtion of the vulvar area with no known cause. Many times there is no inflammation either. I hope someone in our group can identify with your problem. I have had a chronic yeast infecton for 3 months now and am on Diflucan twice a week. I am feeling better. I see you are on the east coast. Where are you from? I live here in Phila and am seeing Velma Weitz a vulvar specialist at Temple University Hospital in Phila. She is an excellent nurse practioner who works along side Dr Nyirjesy. Again welcome and girls let's help Sheila out. Michele D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Sheila, Welcome to our list! This may be way off, but the lactobacillus-rich discharge I have burns my skin wherever it touches. If it gets on my thigh, for example, it burns there just like on my vulva. My gyn says that it actually IS an acid. Most docs do not consider it an infection, however, because it is part of your normal vaginal flora *in smaller amounts*. The difference is just that there is too much of it, which makes your discharge acidic and burns/itches. Anyway, just something to think about. BTW, my discharge when I have the lactobacillus problem is stringy-white, and sometimes even smells like soured milk. (And you thought your message was gross !). At 07:31 PM 3/27/1999 -0500, you wrote: > > >Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >myself right away because I'm not sure this is where I belong. I've been >reading your posts. I relate to most of them but I'm still not sure that I >have vulvadynia. > I've been experiencing a burning feeling in (on?) the vulvar, on and >off for years. I usually run to a gyno right away (I've been to many) to >check if I have another yeast infection or what. For many years, I had >continuous infections and I lived on those treatments, one week taking the >cure, the next week developing a new infection. I finally learned which >foods to avoid like sugar, fruits, plus I wear only cotton panties, no >pantyhose, no alcohol, no fun. I also broke up with the man I was going with >for those years. Perhaps we were ping ponging the infection back and forth. >I was infection free for a while. Lately, the gyno tells me I do not have a >yeast infection but I still have the burning. They find no reason for the >burning, and they prescribe numbing creams like hydrocortisone cream. > I've been researching this problem since I got my computer this year. >For a while, I thought I had interstitial cystitis and joined that list >because I have many of the I C symptoms. I feel an urgent need to urinate >often, like every hour. I had to take an early retirement because I couldn't >leave my students alone to run to the toilet. I was afraid I'd have an >accident in class. > I noticed that many of the people in the I C list also have >vulvadynia. I finally decided that I C was probably not my problem because I >don't have pain in the bladder. Mine is in the vulva so I quit them and >joined you. > The reason I feel I may NOT have vulvadynia is that it seems to me I >have an acid discharge. I can almost feel a flow. I know this sounds like an >infection but the gyno says it isn't. Also, (I'm sorry. This is embarrassing >but I have to mention this because it seems significant. The anonymity of >the list makes this a little easier) but I cause a burn on my sex partner. >I'm not married but I do have a boyfriend and an active sex life (for an old >broad). > This already too long. I'l write about some of the " cures " I've tried >in the past on another post. I'm afraid if I make this too long, no one will >read it. Thanks for llistening. >Sheila > > > >------------------------------------------------------------------------ >Have you visited our new web site? >http://www.onelist.com >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Sheila, Welcome to our list! This may be way off, but the lactobacillus-rich discharge I have burns my skin wherever it touches. If it gets on my thigh, for example, it burns there just like on my vulva. My gyn says that it actually IS an acid. Most docs do not consider it an infection, however, because it is part of your normal vaginal flora *in smaller amounts*. The difference is just that there is too much of it, which makes your discharge acidic and burns/itches. Anyway, just something to think about. BTW, my discharge when I have the lactobacillus problem is stringy-white, and sometimes even smells like soured milk. (And you thought your message was gross !). At 07:31 PM 3/27/1999 -0500, you wrote: > > >Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >myself right away because I'm not sure this is where I belong. I've been >reading your posts. I relate to most of them but I'm still not sure that I >have vulvadynia. > I've been experiencing a burning feeling in (on?) the vulvar, on and >off for years. I usually run to a gyno right away (I've been to many) to >check if I have another yeast infection or what. For many years, I had >continuous infections and I lived on those treatments, one week taking the >cure, the next week developing a new infection. I finally learned which >foods to avoid like sugar, fruits, plus I wear only cotton panties, no >pantyhose, no alcohol, no fun. I also broke up with the man I was going with >for those years. Perhaps we were ping ponging the infection back and forth. >I was infection free for a while. Lately, the gyno tells me I do not have a >yeast infection but I still have the burning. They find no reason for the >burning, and they prescribe numbing creams like hydrocortisone cream. > I've been researching this problem since I got my computer this year. >For a while, I thought I had interstitial cystitis and joined that list >because I have many of the I C symptoms. I feel an urgent need to urinate >often, like every hour. I had to take an early retirement because I couldn't >leave my students alone to run to the toilet. I was afraid I'd have an >accident in class. > I noticed that many of the people in the I C list also have >vulvadynia. I finally decided that I C was probably not my problem because I >don't have pain in the bladder. Mine is in the vulva so I quit them and >joined you. > The reason I feel I may NOT have vulvadynia is that it seems to me I >have an acid discharge. I can almost feel a flow. I know this sounds like an >infection but the gyno says it isn't. Also, (I'm sorry. This is embarrassing >but I have to mention this because it seems significant. The anonymity of >the list makes this a little easier) but I cause a burn on my sex partner. >I'm not married but I do have a boyfriend and an active sex life (for an old >broad). > This already too long. I'l write about some of the " cures " I've tried >in the past on another post. I'm afraid if I make this too long, no one will >read it. Thanks for llistening. >Sheila > > > >------------------------------------------------------------------------ >Have you visited our new web site? >http://www.onelist.com >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 > The reason I feel I may NOT have vulvadynia is that it seems to me I >have an acid discharge. I can almost feel a flow. I know this sounds like an >infection but the gyno says it isn't. Sheila, My doctor says Vulvadynia is " vulva " and " dynia " which means " pain " . All of us may have different causes, but we all have vulvar pain of some sort. Please stick with the list, if nothing else you may learn some coping strategies. -Kitty kittyelder@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 > The reason I feel I may NOT have vulvadynia is that it seems to me I >have an acid discharge. I can almost feel a flow. I know this sounds like an >infection but the gyno says it isn't. Sheila, My doctor says Vulvadynia is " vulva " and " dynia " which means " pain " . All of us may have different causes, but we all have vulvar pain of some sort. Please stick with the list, if nothing else you may learn some coping strategies. -Kitty kittyelder@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Sheila, Welcome to the list, although we are sorry you have symptoms that led you to us. Many of us have IC and vulvodynia. Medical literature successes about 30% of vulvar disorder sufferer have IC. IC like vulvo dynia can present in a variety of ways. I do not have frequency as much as intense urgency that is like I'm fine one minute and I'm in double over pain needing to go the next. Or, you may just have incontinence. It is probably worth discussing with your doctor and getting a referral to a urologist because both IC and incontinence can be treated. Also, your " acid " feeling may be something to have checked out my a vulvovaginal specialist as it may be rarer form of either yeast or lactobaccillus or ... If you feel comfortable posting your city someone may be able to give you names of good doctors in your area. Deb at DLitzfletc@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Sheila, Welcome to the list, although we are sorry you have symptoms that led you to us. Many of us have IC and vulvodynia. Medical literature successes about 30% of vulvar disorder sufferer have IC. IC like vulvo dynia can present in a variety of ways. I do not have frequency as much as intense urgency that is like I'm fine one minute and I'm in double over pain needing to go the next. Or, you may just have incontinence. It is probably worth discussing with your doctor and getting a referral to a urologist because both IC and incontinence can be treated. Also, your " acid " feeling may be something to have checked out my a vulvovaginal specialist as it may be rarer form of either yeast or lactobaccillus or ... If you feel comfortable posting your city someone may be able to give you names of good doctors in your area. Deb at DLitzfletc@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Yes, when I have excess lactobacillus it burns the exact same way. Betadine douches help a little, but can irritate the skin even more if used too much. I also have a vaginal antiobotic cream that helps a lot. Donna P. Re: New member > > >Sheila, > >Welcome to our list! > >This may be way off, but the lactobacillus-rich discharge I have burns my >skin wherever it touches. If it gets on my thigh, for example, it burns >there just like on my vulva. My gyn says that it actually IS an acid. >Most docs do not consider it an infection, however, because it is part of >your normal vaginal flora *in smaller amounts*. The difference is just >that there is too much of it, which makes your discharge acidic and >burns/itches. Anyway, just something to think about. BTW, my discharge >when I have the lactobacillus problem is stringy-white, and sometimes even >smells like soured milk. (And you thought your message was gross !). > > > > > >At 07:31 PM 3/27/1999 -0500, you wrote: >> >> >>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>myself right away because I'm not sure this is where I belong. I've been >>reading your posts. I relate to most of them but I'm still not sure that I >>have vulvadynia. >> I've been experiencing a burning feeling in (on?) the vulvar, on and >>off for years. I usually run to a gyno right away (I've been to many) to >>check if I have another yeast infection or what. For many years, I had >>continuous infections and I lived on those treatments, one week taking the >>cure, the next week developing a new infection. I finally learned which >>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>pantyhose, no alcohol, no fun. I also broke up with the man I was going with >>for those years. Perhaps we were ping ponging the infection back and forth. >>I was infection free for a while. Lately, the gyno tells me I do not have a >>yeast infection but I still have the burning. They find no reason for the >>burning, and they prescribe numbing creams like hydrocortisone cream. >> I've been researching this problem since I got my computer this year. >>For a while, I thought I had interstitial cystitis and joined that list >>because I have many of the I C symptoms. I feel an urgent need to urinate >>often, like every hour. I had to take an early retirement because I couldn't >>leave my students alone to run to the toilet. I was afraid I'd have an >>accident in class. >> I noticed that many of the people in the I C list also have >>vulvadynia. I finally decided that I C was probably not my problem because I >>don't have pain in the bladder. Mine is in the vulva so I quit them and >>joined you. >> The reason I feel I may NOT have vulvadynia is that it seems to me I >>have an acid discharge. I can almost feel a flow. I know this sounds like an >>infection but the gyno says it isn't. Also, (I'm sorry. This is embarrassing >>but I have to mention this because it seems significant. The anonymity of >>the list makes this a little easier) but I cause a burn on my sex partner. >>I'm not married but I do have a boyfriend and an active sex life (for an old >>broad). >> This already too long. I'l write about some of the " cures " I've tried >>in the past on another post. I'm afraid if I make this too long, no one will >>read it. Thanks for llistening. >>Sheila >> >> >> >>------------------------------------------------------------------------ >>Have you visited our new web site? >>http://www.onelist.com >>Onelist: Helping to create Internet communities >>------------------------------------------------------------------------ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Yes, when I have excess lactobacillus it burns the exact same way. Betadine douches help a little, but can irritate the skin even more if used too much. I also have a vaginal antiobotic cream that helps a lot. Donna P. Re: New member > > >Sheila, > >Welcome to our list! > >This may be way off, but the lactobacillus-rich discharge I have burns my >skin wherever it touches. If it gets on my thigh, for example, it burns >there just like on my vulva. My gyn says that it actually IS an acid. >Most docs do not consider it an infection, however, because it is part of >your normal vaginal flora *in smaller amounts*. The difference is just >that there is too much of it, which makes your discharge acidic and >burns/itches. Anyway, just something to think about. BTW, my discharge >when I have the lactobacillus problem is stringy-white, and sometimes even >smells like soured milk. (And you thought your message was gross !). > > > > > >At 07:31 PM 3/27/1999 -0500, you wrote: >> >> >>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>myself right away because I'm not sure this is where I belong. I've been >>reading your posts. I relate to most of them but I'm still not sure that I >>have vulvadynia. >> I've been experiencing a burning feeling in (on?) the vulvar, on and >>off for years. I usually run to a gyno right away (I've been to many) to >>check if I have another yeast infection or what. For many years, I had >>continuous infections and I lived on those treatments, one week taking the >>cure, the next week developing a new infection. I finally learned which >>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>pantyhose, no alcohol, no fun. I also broke up with the man I was going with >>for those years. Perhaps we were ping ponging the infection back and forth. >>I was infection free for a while. Lately, the gyno tells me I do not have a >>yeast infection but I still have the burning. They find no reason for the >>burning, and they prescribe numbing creams like hydrocortisone cream. >> I've been researching this problem since I got my computer this year. >>For a while, I thought I had interstitial cystitis and joined that list >>because I have many of the I C symptoms. I feel an urgent need to urinate >>often, like every hour. I had to take an early retirement because I couldn't >>leave my students alone to run to the toilet. I was afraid I'd have an >>accident in class. >> I noticed that many of the people in the I C list also have >>vulvadynia. I finally decided that I C was probably not my problem because I >>don't have pain in the bladder. Mine is in the vulva so I quit them and >>joined you. >> The reason I feel I may NOT have vulvadynia is that it seems to me I >>have an acid discharge. I can almost feel a flow. I know this sounds like an >>infection but the gyno says it isn't. Also, (I'm sorry. This is embarrassing >>but I have to mention this because it seems significant. The anonymity of >>the list makes this a little easier) but I cause a burn on my sex partner. >>I'm not married but I do have a boyfriend and an active sex life (for an old >>broad). >> This already too long. I'l write about some of the " cures " I've tried >>in the past on another post. I'm afraid if I make this too long, no one will >>read it. Thanks for llistening. >>Sheila >> >> >> >>------------------------------------------------------------------------ >>Have you visited our new web site? >>http://www.onelist.com >>Onelist: Helping to create Internet communities >>------------------------------------------------------------------------ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Yes, when I have excess lactobacillus it burns the exact same way. Betadine douches help a little, but can irritate the skin even more if used too much. I also have a vaginal antiobotic cream that helps a lot. Donna P. Re: New member > > >Sheila, > >Welcome to our list! > >This may be way off, but the lactobacillus-rich discharge I have burns my >skin wherever it touches. If it gets on my thigh, for example, it burns >there just like on my vulva. My gyn says that it actually IS an acid. >Most docs do not consider it an infection, however, because it is part of >your normal vaginal flora *in smaller amounts*. The difference is just >that there is too much of it, which makes your discharge acidic and >burns/itches. Anyway, just something to think about. BTW, my discharge >when I have the lactobacillus problem is stringy-white, and sometimes even >smells like soured milk. (And you thought your message was gross !). > > > > > >At 07:31 PM 3/27/1999 -0500, you wrote: >> >> >>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>myself right away because I'm not sure this is where I belong. I've been >>reading your posts. I relate to most of them but I'm still not sure that I >>have vulvadynia. >> I've been experiencing a burning feeling in (on?) the vulvar, on and >>off for years. I usually run to a gyno right away (I've been to many) to >>check if I have another yeast infection or what. For many years, I had >>continuous infections and I lived on those treatments, one week taking the >>cure, the next week developing a new infection. I finally learned which >>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>pantyhose, no alcohol, no fun. I also broke up with the man I was going with >>for those years. Perhaps we were ping ponging the infection back and forth. >>I was infection free for a while. Lately, the gyno tells me I do not have a >>yeast infection but I still have the burning. They find no reason for the >>burning, and they prescribe numbing creams like hydrocortisone cream. >> I've been researching this problem since I got my computer this year. >>For a while, I thought I had interstitial cystitis and joined that list >>because I have many of the I C symptoms. I feel an urgent need to urinate >>often, like every hour. I had to take an early retirement because I couldn't >>leave my students alone to run to the toilet. I was afraid I'd have an >>accident in class. >> I noticed that many of the people in the I C list also have >>vulvadynia. I finally decided that I C was probably not my problem because I >>don't have pain in the bladder. Mine is in the vulva so I quit them and >>joined you. >> The reason I feel I may NOT have vulvadynia is that it seems to me I >>have an acid discharge. I can almost feel a flow. I know this sounds like an >>infection but the gyno says it isn't. Also, (I'm sorry. This is embarrassing >>but I have to mention this because it seems significant. The anonymity of >>the list makes this a little easier) but I cause a burn on my sex partner. >>I'm not married but I do have a boyfriend and an active sex life (for an old >>broad). >> This already too long. I'l write about some of the " cures " I've tried >>in the past on another post. I'm afraid if I make this too long, no one will >>read it. Thanks for llistening. >>Sheila >> >> >> >>------------------------------------------------------------------------ >>Have you visited our new web site? >>http://www.onelist.com >>Onelist: Helping to create Internet communities >>------------------------------------------------------------------------ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Hi, I hope you don't mind me asking but is the antibotic vaginal cream you are using OTC? If so can you tell me the name as I have several OTC books and I've wanted to order a cream but could never choose which one. Thank you, Carole Re: New member > > >> >> >>Sheila, >> >>Welcome to our list! >> >>This may be way off, but the lactobacillus-rich discharge I have burns my >>skin wherever it touches. If it gets on my thigh, for example, it burns >>there just like on my vulva. My gyn says that it actually IS an acid. >>Most docs do not consider it an infection, however, because it is part of >>your normal vaginal flora *in smaller amounts*. The difference is just >>that there is too much of it, which makes your discharge acidic and >>burns/itches. Anyway, just something to think about. BTW, my discharge >>when I have the lactobacillus problem is stringy-white, and sometimes even >>smells like soured milk. (And you thought your message was gross !). >> >> >> >> >> >>At 07:31 PM 3/27/1999 -0500, you wrote: >>> >>> >>>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>>myself right away because I'm not sure this is where I belong. I've been >>>reading your posts. I relate to most of them but I'm still not sure that I >>>have vulvadynia. >>> I've been experiencing a burning feeling in (on?) the vulvar, on and >>>off for years. I usually run to a gyno right away (I've been to many) to >>>check if I have another yeast infection or what. For many years, I had >>>continuous infections and I lived on those treatments, one week taking the >>>cure, the next week developing a new infection. I finally learned which >>>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>>pantyhose, no alcohol, no fun. I also broke up with the man I was going >with >>>for those years. Perhaps we were ping ponging the infection back and >forth. >>>I was infection free for a while. Lately, the gyno tells me I do not have >a >>>yeast infection but I still have the burning. They find no reason for the >>>burning, and they prescribe numbing creams like hydrocortisone cream. >>> I've been researching this problem since I got my computer this year. >>>For a while, I thought I had interstitial cystitis and joined that list >>>because I have many of the I C symptoms. I feel an urgent need to urinate >>>often, like every hour. I had to take an early retirement because I >couldn't >>>leave my students alone to run to the toilet. I was afraid I'd have an >>>accident in class. >>> I noticed that many of the people in the I C list also have >>>vulvadynia. I finally decided that I C was probably not my problem because >I >>>don't have pain in the bladder. Mine is in the vulva so I quit them and >>>joined you. >>> The reason I feel I may NOT have vulvadynia is that it seems to me I >>>have an acid discharge. I can almost feel a flow. I know this sounds like >an >>>infection but the gyno says it isn't. Also, (I'm sorry. This is >embarrassing >>>but I have to mention this because it seems significant. The anonymity of >>>the list makes this a little easier) but I cause a burn on my sex partner. >>>I'm not married but I do have a boyfriend and an active sex life (for an >old >>>broad). >>> This already too long. I'l write about some of the " cures " I've tried >>>in the past on another post. I'm afraid if I make this too long, no one >will >>>read it. Thanks for llistening. >>>Sheila >>> >>> >>> >>>------------------------------------------------------------------------ >>>Have you visited our new web site? >>>http://www.onelist.com >>>Onelist: Helping to create Internet communities >>>------------------------------------------------------------------------ >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Hi, I hope you don't mind me asking but is the antibotic vaginal cream you are using OTC? If so can you tell me the name as I have several OTC books and I've wanted to order a cream but could never choose which one. Thank you, Carole Re: New member > > >> >> >>Sheila, >> >>Welcome to our list! >> >>This may be way off, but the lactobacillus-rich discharge I have burns my >>skin wherever it touches. If it gets on my thigh, for example, it burns >>there just like on my vulva. My gyn says that it actually IS an acid. >>Most docs do not consider it an infection, however, because it is part of >>your normal vaginal flora *in smaller amounts*. The difference is just >>that there is too much of it, which makes your discharge acidic and >>burns/itches. Anyway, just something to think about. BTW, my discharge >>when I have the lactobacillus problem is stringy-white, and sometimes even >>smells like soured milk. (And you thought your message was gross !). >> >> >> >> >> >>At 07:31 PM 3/27/1999 -0500, you wrote: >>> >>> >>>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>>myself right away because I'm not sure this is where I belong. I've been >>>reading your posts. I relate to most of them but I'm still not sure that I >>>have vulvadynia. >>> I've been experiencing a burning feeling in (on?) the vulvar, on and >>>off for years. I usually run to a gyno right away (I've been to many) to >>>check if I have another yeast infection or what. For many years, I had >>>continuous infections and I lived on those treatments, one week taking the >>>cure, the next week developing a new infection. I finally learned which >>>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>>pantyhose, no alcohol, no fun. I also broke up with the man I was going >with >>>for those years. Perhaps we were ping ponging the infection back and >forth. >>>I was infection free for a while. Lately, the gyno tells me I do not have >a >>>yeast infection but I still have the burning. They find no reason for the >>>burning, and they prescribe numbing creams like hydrocortisone cream. >>> I've been researching this problem since I got my computer this year. >>>For a while, I thought I had interstitial cystitis and joined that list >>>because I have many of the I C symptoms. I feel an urgent need to urinate >>>often, like every hour. I had to take an early retirement because I >couldn't >>>leave my students alone to run to the toilet. I was afraid I'd have an >>>accident in class. >>> I noticed that many of the people in the I C list also have >>>vulvadynia. I finally decided that I C was probably not my problem because >I >>>don't have pain in the bladder. Mine is in the vulva so I quit them and >>>joined you. >>> The reason I feel I may NOT have vulvadynia is that it seems to me I >>>have an acid discharge. I can almost feel a flow. I know this sounds like >an >>>infection but the gyno says it isn't. Also, (I'm sorry. This is >embarrassing >>>but I have to mention this because it seems significant. The anonymity of >>>the list makes this a little easier) but I cause a burn on my sex partner. >>>I'm not married but I do have a boyfriend and an active sex life (for an >old >>>broad). >>> This already too long. I'l write about some of the " cures " I've tried >>>in the past on another post. I'm afraid if I make this too long, no one >will >>>read it. Thanks for llistening. >>>Sheila >>> >>> >>> >>>------------------------------------------------------------------------ >>>Have you visited our new web site? >>>http://www.onelist.com >>>Onelist: Helping to create Internet communities >>>------------------------------------------------------------------------ >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 No, I believe the name is Cleocin, and it is prescription. My doc believed that this antiobotic cream was less harmful than giving me oral antiobotics, with my history of yeast infections. I agree Donna P. Re: New member >> >> >>> >>> >>>Sheila, >>> >>>Welcome to our list! >>> >>>This may be way off, but the lactobacillus-rich discharge I have burns my >>>skin wherever it touches. If it gets on my thigh, for example, it burns >>>there just like on my vulva. My gyn says that it actually IS an acid. >>>Most docs do not consider it an infection, however, because it is part of >>>your normal vaginal flora *in smaller amounts*. The difference is just >>>that there is too much of it, which makes your discharge acidic and >>>burns/itches. Anyway, just something to think about. BTW, my discharge >>>when I have the lactobacillus problem is stringy-white, and sometimes even >>>smells like soured milk. (And you thought your message was gross !). >>> >>> >>> >>> >>> >>>At 07:31 PM 3/27/1999 -0500, you wrote: >>>> >>>> >>>>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>>>myself right away because I'm not sure this is where I belong. I've been >>>>reading your posts. I relate to most of them but I'm still not sure that >I >>>>have vulvadynia. >>>> I've been experiencing a burning feeling in (on?) the vulvar, on and >>>>off for years. I usually run to a gyno right away (I've been to many) to >>>>check if I have another yeast infection or what. For many years, I had >>>>continuous infections and I lived on those treatments, one week taking >the >>>>cure, the next week developing a new infection. I finally learned which >>>>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>>>pantyhose, no alcohol, no fun. I also broke up with the man I was going >>with >>>>for those years. Perhaps we were ping ponging the infection back and >>forth. >>>>I was infection free for a while. Lately, the gyno tells me I do not have >>a >>>>yeast infection but I still have the burning. They find no reason for the >>>>burning, and they prescribe numbing creams like hydrocortisone cream. >>>> I've been researching this problem since I got my computer this >year. >>>>For a while, I thought I had interstitial cystitis and joined that list >>>>because I have many of the I C symptoms. I feel an urgent need to urinate >>>>often, like every hour. I had to take an early retirement because I >>couldn't >>>>leave my students alone to run to the toilet. I was afraid I'd have an >>>>accident in class. >>>> I noticed that many of the people in the I C list also have >>>>vulvadynia. I finally decided that I C was probably not my problem >because >>I >>>>don't have pain in the bladder. Mine is in the vulva so I quit them and >>>>joined you. >>>> The reason I feel I may NOT have vulvadynia is that it seems to me I >>>>have an acid discharge. I can almost feel a flow. I know this sounds like >>an >>>>infection but the gyno says it isn't. Also, (I'm sorry. This is >>embarrassing >>>>but I have to mention this because it seems significant. The anonymity of >>>>the list makes this a little easier) but I cause a burn on my sex >partner. >>>>I'm not married but I do have a boyfriend and an active sex life (for an >>old >>>>broad). >>>> This already too long. I'l write about some of the " cures " I've >tried >>>>in the past on another post. I'm afraid if I make this too long, no one >>will >>>>read it. Thanks for llistening. >>>>Sheila >>>> >>>> >>>> >>>>------------------------------------------------------------------------ >>>>Have you visited our new web site? >>>>http://www.onelist.com >>>>Onelist: Helping to create Internet communities >>>>------------------------------------------------------------------------ >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 No, I believe the name is Cleocin, and it is prescription. My doc believed that this antiobotic cream was less harmful than giving me oral antiobotics, with my history of yeast infections. I agree Donna P. Re: New member >> >> >>> >>> >>>Sheila, >>> >>>Welcome to our list! >>> >>>This may be way off, but the lactobacillus-rich discharge I have burns my >>>skin wherever it touches. If it gets on my thigh, for example, it burns >>>there just like on my vulva. My gyn says that it actually IS an acid. >>>Most docs do not consider it an infection, however, because it is part of >>>your normal vaginal flora *in smaller amounts*. The difference is just >>>that there is too much of it, which makes your discharge acidic and >>>burns/itches. Anyway, just something to think about. BTW, my discharge >>>when I have the lactobacillus problem is stringy-white, and sometimes even >>>smells like soured milk. (And you thought your message was gross !). >>> >>> >>> >>> >>> >>>At 07:31 PM 3/27/1999 -0500, you wrote: >>>> >>>> >>>>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>>>myself right away because I'm not sure this is where I belong. I've been >>>>reading your posts. I relate to most of them but I'm still not sure that >I >>>>have vulvadynia. >>>> I've been experiencing a burning feeling in (on?) the vulvar, on and >>>>off for years. I usually run to a gyno right away (I've been to many) to >>>>check if I have another yeast infection or what. For many years, I had >>>>continuous infections and I lived on those treatments, one week taking >the >>>>cure, the next week developing a new infection. I finally learned which >>>>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>>>pantyhose, no alcohol, no fun. I also broke up with the man I was going >>with >>>>for those years. Perhaps we were ping ponging the infection back and >>forth. >>>>I was infection free for a while. Lately, the gyno tells me I do not have >>a >>>>yeast infection but I still have the burning. They find no reason for the >>>>burning, and they prescribe numbing creams like hydrocortisone cream. >>>> I've been researching this problem since I got my computer this >year. >>>>For a while, I thought I had interstitial cystitis and joined that list >>>>because I have many of the I C symptoms. I feel an urgent need to urinate >>>>often, like every hour. I had to take an early retirement because I >>couldn't >>>>leave my students alone to run to the toilet. I was afraid I'd have an >>>>accident in class. >>>> I noticed that many of the people in the I C list also have >>>>vulvadynia. I finally decided that I C was probably not my problem >because >>I >>>>don't have pain in the bladder. Mine is in the vulva so I quit them and >>>>joined you. >>>> The reason I feel I may NOT have vulvadynia is that it seems to me I >>>>have an acid discharge. I can almost feel a flow. I know this sounds like >>an >>>>infection but the gyno says it isn't. Also, (I'm sorry. This is >>embarrassing >>>>but I have to mention this because it seems significant. The anonymity of >>>>the list makes this a little easier) but I cause a burn on my sex >partner. >>>>I'm not married but I do have a boyfriend and an active sex life (for an >>old >>>>broad). >>>> This already too long. I'l write about some of the " cures " I've >tried >>>>in the past on another post. I'm afraid if I make this too long, no one >>will >>>>read it. Thanks for llistening. >>>>Sheila >>>> >>>> >>>> >>>>------------------------------------------------------------------------ >>>>Have you visited our new web site? >>>>http://www.onelist.com >>>>Onelist: Helping to create Internet communities >>>>------------------------------------------------------------------------ >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 No, I believe the name is Cleocin, and it is prescription. My doc believed that this antiobotic cream was less harmful than giving me oral antiobotics, with my history of yeast infections. I agree Donna P. Re: New member >> >> >>> >>> >>>Sheila, >>> >>>Welcome to our list! >>> >>>This may be way off, but the lactobacillus-rich discharge I have burns my >>>skin wherever it touches. If it gets on my thigh, for example, it burns >>>there just like on my vulva. My gyn says that it actually IS an acid. >>>Most docs do not consider it an infection, however, because it is part of >>>your normal vaginal flora *in smaller amounts*. The difference is just >>>that there is too much of it, which makes your discharge acidic and >>>burns/itches. Anyway, just something to think about. BTW, my discharge >>>when I have the lactobacillus problem is stringy-white, and sometimes even >>>smells like soured milk. (And you thought your message was gross !). >>> >>> >>> >>> >>> >>>At 07:31 PM 3/27/1999 -0500, you wrote: >>>> >>>> >>>>Hi, I'm Sheila. I joined the list a few weeks ago but I didn't introduce >>>>myself right away because I'm not sure this is where I belong. I've been >>>>reading your posts. I relate to most of them but I'm still not sure that >I >>>>have vulvadynia. >>>> I've been experiencing a burning feeling in (on?) the vulvar, on and >>>>off for years. I usually run to a gyno right away (I've been to many) to >>>>check if I have another yeast infection or what. For many years, I had >>>>continuous infections and I lived on those treatments, one week taking >the >>>>cure, the next week developing a new infection. I finally learned which >>>>foods to avoid like sugar, fruits, plus I wear only cotton panties, no >>>>pantyhose, no alcohol, no fun. I also broke up with the man I was going >>with >>>>for those years. Perhaps we were ping ponging the infection back and >>forth. >>>>I was infection free for a while. Lately, the gyno tells me I do not have >>a >>>>yeast infection but I still have the burning. They find no reason for the >>>>burning, and they prescribe numbing creams like hydrocortisone cream. >>>> I've been researching this problem since I got my computer this >year. >>>>For a while, I thought I had interstitial cystitis and joined that list >>>>because I have many of the I C symptoms. I feel an urgent need to urinate >>>>often, like every hour. I had to take an early retirement because I >>couldn't >>>>leave my students alone to run to the toilet. I was afraid I'd have an >>>>accident in class. >>>> I noticed that many of the people in the I C list also have >>>>vulvadynia. I finally decided that I C was probably not my problem >because >>I >>>>don't have pain in the bladder. Mine is in the vulva so I quit them and >>>>joined you. >>>> The reason I feel I may NOT have vulvadynia is that it seems to me I >>>>have an acid discharge. I can almost feel a flow. I know this sounds like >>an >>>>infection but the gyno says it isn't. Also, (I'm sorry. This is >>embarrassing >>>>but I have to mention this because it seems significant. The anonymity of >>>>the list makes this a little easier) but I cause a burn on my sex >partner. >>>>I'm not married but I do have a boyfriend and an active sex life (for an >>old >>>>broad). >>>> This already too long. I'l write about some of the " cures " I've >tried >>>>in the past on another post. I'm afraid if I make this too long, no one >>will >>>>read it. Thanks for llistening. >>>>Sheila >>>> >>>> >>>> >>>>------------------------------------------------------------------------ >>>>Have you visited our new web site? >>>>http://www.onelist.com >>>>Onelist: Helping to create Internet communities >>>>------------------------------------------------------------------------ >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Sheila, Sorry about the incontinence! I did see a new add for " Compose " today, which might be a protection against the embarrassment if you " leak " so to speak. In relation to your vulvodynia, are you now using any sort of disposable pad or undergarment. Many of those have chemicals in them that can irritate vulvodynia patients. Is physical therapy an option? There is a pelvic floor biofeedback specialist in NYC that might be able to help in relation to the vulvar pain and the vulvodynia burning and itching and I understand pt is also sometimes useful for stress incontinence. Maybe a second opinion on the incontinence might come up with a management strategy that your current doctor has not suggested? Ladies in the NYC area -- any suggestions for good gynecological urologists and/or vulvovaginal specialists for Sheila? You could also try the National Vulvodynia Association, The Vulvar Pain Forum, etc., for names of recommended practitioners. There are links to many of these group on Heidi's web page and that address/link can be found in the VulvarDisorders archives or ask on list and Heidi can post it again. Unfortunately, vulvodynia is a complex disease and there is no clear way to determine who will respond best to which treatment. Even with caring, supportive, knowledgeable doctors it can be somewhat trial and error until you find the best treatment plan for your body. Don't be discouraged by your own or other people's failures. I try to remember that the treatment doesn't match my body or theirs at that point in time. In general I ask what, what for, how should the course of treatment go, what are signs that it is or is not working, what are red flags that mean I should call or come back in, when do you want to talk to me on the phone or see me again to monitor the treatment and what information do I need in order to judge if this is working or not. I see a nationally recognized vulvovaginal specialist and have a regular gyn who is knowledgeable, supportive, and monitors me very closely and I have had the most success with antidepressants. Now I need to find the right one at the right dosage so that I can tolerate long term treatment. I hope the list will help you in your quest for answers, better management, and the elusive painfree days and life! Deb at DLitzfletc@... PS You also came on to the list at a time when we are all venting about how this mess effects our families, relationships, and emotional endurance. It is a good strand of discussion but can be pretty " heavy. " It can also lead to some sharing of good coping strategies and support that will strengthen us as we seek care for a difficult condition. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 1999 Report Share Posted March 29, 1999 Deb, You wrote:. Also, your " acid " feeling may be >something to have checked out by a vulvovaginal specialist as it may be a rarer >form of either yeast or lactobaccillus or ... If you feel comfortable posting >your city someone may be able to give you names of good doctors in your area. I live on Long Island, in Nassau County. I'm about one hour from New York City and could get there if that is where a good vulvovaginal specialist is. My fear in going to one is that I keep reading about some of the treatments some of you have gone through and they sound worse than the problem. Also, in regard to the incontinence problem, I've already had surgery for it. It helped for about 5 years and is now back. I recently saw a urologist about it again and he tells me he can " cure " the problem but I may not be able to urinate the usual way anymore. I may have to catherize myself to pee. It doesn't sound worth it to me. If anyone knows of a good vulvovaginal specialist in my area, please let me know. Thanks Sheila Re: New member >From: DLitzfletc@... > >Sheila, > Welcome to the list, although we are sorry you have symptoms that led >you to us. Many of us have IC and vulvodynia. Medical literature successes >about 30% of vulvar disorder sufferer have IC. IC like vulvo dynia can >present in a variety of ways. I do not have frequency as much as intense >urgency that is like I'm fine one minute and I'm in double over pain needing >to go the next. Or, you may just have incontinence. It is probably worth >discussing with your doctor and getting a referral to a urologist because both >IC and incontinence can be treated >Deb at DLitzfletc@... > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.onelist.com >Sign up for a new email list today >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Dear Deb: I am 44 years old and was working it the retail world as a display manager. One of the stupid kids that worked for me, left a cardborad box where it shouldn't be and I broke my right ankle (Sept. 98'). In the er the braced it and put me on cruthes and told me to see a doctor in 24 hrs.. Five days later comp. found a doctor for me, all he did was case it and give me pain meds. After three weeks he told me to walk on the cast with a cane. I asked for a new doctor. The next one changed the cast 3 or 4 more times (every time it swelled and turned blue) and then put on an air cast and ordered pt..(All he could in pt was ice it , it was always to swollen and blue to touch). It was now 4 and a half months since I broke it. He told me to walk on it and to go back to work---it is swelling and blue because of lack of use !!!! My husband called comp and blew a fit... Two days after the 2nd doctor told me to go back to work they sent me to a third doctor. After 7 x-ray studies he said the fracture never healed and I had to have surgery. That was on a thursday, the next monday comp calls me and tells me the surgery is off, they want another opinion. Wednesday, I am in another doctors office ( my forth), he says he wants to but a stimulator under the skin on the bone and cast it for 6 to 8 more weeks. If that didn't work then he would do the surgery. Well I was in another doctors office on thursday (psychiatrist)!!!! Friday I had my surgery....A 6 inch plate and 5 screws later and 4 more months of casts. The third doctor again orders pt. It would have been nice if they did what the doctor ordered --- heat , ultersound ,etc. But 45 degree ice baths and streching of a cold limb did not help. Now my foot swells up to the hip and turns blue for no reason. The pain does not stop and the third doctor discharged me because the bone is healed. That is where I'm at today----waiting for a neurologist and another ortho. I now have a lawyer --- I hope I don't have to wait much longer, I'm out of pain meds and all the psychiatrist can give me is xanax. I can't take other meds for my depression, they all react on my in the wrong way. I'm a chatter box and love to talk, can you tell. I am now in a knot just putting it on paper. It makes me so upset, I can't see through the tears right now. Doesn't it stink that they are getting away with this !!!! Another Comp Victim Thanks for listining Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2000 Report Share Posted April 17, 2000 Hi , Welcome to the group, I am sure you will love it here as its a great bunch. Say Hi to Tony for me, am looking forward to chating with you again as I lost every thing a while back, so now I have your e-mail address and this is my new one. Welcome again. Bye for now Hugs Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2000 Report Share Posted May 13, 2000 Hi " mpoletsky " ! I wanted to take a moment and welcome you to our list. I hope that you'll find that everyone here is caring and supportive, and here when you need them, for whatever it is. We want you to feel that there isn't anything you can't say to us, we've all had our times where we needed to vent, scream, yell, etc. We're also full of info, so feel free to ask whatever questions you may have as well. Please let us know a little bit about yourself when you have a couple of moments. We've all told our stories, and you can find them within the loads of posts at the website. (I've been slowly trying to delete some of the stuff so it isn't nearly as difficult to find posts you'd like to read). Again, welcome. We're definitely glad that you've joined us! Hugs! Jo Listowner CRPSegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Hi Ward, I am Marsha and was dx 2 yrs. ago with PSC. I live in Orange County I would be glad to talk to you. You can email me separately. Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Ward-- Welcome to the group. Unfortunately, to be a member a person has to have or know someone with this horrible disease--so in that respect, you have my sympathy. You will find this group very informative and ready to be leaned on for support. I believe we have somewhere around 160 members at various stages of PSC. Laurie, UC dx (diagnosed) 8/78; PSC dx 4/87; Colectomy surgery 6/87, 8/87; liver duct surgery 12/89 & finally, tx (transplant) 5/5/00 (to give you a bit of my background) new member > > Greetings to all! > > I am a 29 year old male living in Los Angeles. I was diagnosed with > PSC earlier this year. I was diagnosed with Crohn's last year. My > original doctors mentioned me as a possible transplant candidate. I > have since switched to Cedars Sinai and will begin treatment there > this month. I am ironically in very good health since I have > eliminated alcohol and greasy food completely from my diet. A close > friend of mine alerted me to this site and thought it might help. > > I look forward to corresponding with you soon. Take care. > > A votre sante, > > Ward > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 >I look forward to corresponding with you soon. welcome (but sorry you need to be here).. you will soon learn that I am the nicest guy in the group.. :-) DenverD: husband of Mette (44), UC '73, dx PSC 6/2000 alive in Denmark <www.Texan.dk> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Welcome Ward. I hate to hear of people so young having this disease hopefully you will have a number of years before having symptoms and needing a transplant. My husband Phil (57) was diagnosed with PSC 12/98 and listed at UCLA 1/2000. They think he had it for a number of years before being diagnosed. Where abouts do you live in Los Angeles. Phil and I live in Newhall, in the Santa Clarita Valley. If you are looking for answers you will find them here, if you are looking for comfort, you will find it here. This is a very compassionate knowledgeable group. Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA Quote Link to comment Share on other sites More sharing options...
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