Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 , I would recommend getting a second opinion to cover all bases and make sure nothing was missed. And if this dr is in a practice with someone else do not go to that someone else, go to someone else in town. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 , I would recommend getting a second opinion to cover all bases and make sure nothing was missed. And if this dr is in a practice with someone else do not go to that someone else, go to someone else in town. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 , I would recommend getting a second opinion to cover all bases and make sure nothing was missed. And if this dr is in a practice with someone else do not go to that someone else, go to someone else in town. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 HI ....... ! Hon I hope you get a 2nd and a 3rd opinion (maybe a 4th) before you'd consider surgery !!!! Please hon.. Just remember surgery can't be undone if it doesn't work out. And from what you mentioned you only have pain during sex or exercise? My goodness some have pain 24/7 and can't even sit or walk hon, so not to diminish yours hon, not at all.. but if it were 'me' I'd certainly be trying a LOT of things before I'd consider it. *sigh* Of course that's my opinion and I remember times when I was so bad I'd say to myself I wish they'd cut the dang thing off over the 10 yrs I suffered but TG I didn't. *sigh* Maybe you can tell us what you've tried so far & what results you've had and for how long this has been going on? Also as to the Topicort... hon honestly do NOT be afraid of it OR ask your doctor for a little milder one, there is a Topicort LP cream 0.05% that's even a class lower and I'm assuming you were given that by a physician right? So it's that he/she thought it might help (I'm also assuming you've not tried it right? ) It is often what would be the first suggested protocol for most dermatological pain, itch, inflammation etc (with no infections).....one would use a small peasize dab right before bedtime...(we heal when we sleep, plus there's less bathroom usage, or walking, sitting etc). You might try it for a week (maybe 2 if it's working) and see how it goes (just once a night) . It won't cause any damage in that short amt. of time. You could even dilute it a bit with some Emu oil or Olive oil etc. if you wanted to. Believe me I am no steroid lover *grin* and as much as I hate steroids because of what happened to me with extreme overuse and abuse (as told to by several physicians) and the horrible side effects I was left with, that was over 9 months of continuous use and I was told to 'slather it on' (How little I knew back then *sigh*) But you're only going to try a tiny peasize amt. hon (if you do) ... and then always gently massage that in. So believe me I really do dislike them, but I'm sensible enough to know of their benefits too when they are used ''correctly'' they can truly break that pain loop cycle as it slows down the immune systems reaction and let's the tissue start to heal itself in many cases. It may just be that you do have vestibulitis hon and there are other treatments and maybe even surgery down the road..... but I'd surely try everything I could before I got that far (and no idea if you have hon) so forgive me I don't mean to sound like I'm lecturing, *smile* it's only because I care. I've seen some good results and I've seen those who end up far worse with surgery and all I'm saying is the steroids might be worth a try and to please not be afraid of them. Just use them wisely. Just my two cents hon . Hugs Dee~ .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 HI ....... ! Hon I hope you get a 2nd and a 3rd opinion (maybe a 4th) before you'd consider surgery !!!! Please hon.. Just remember surgery can't be undone if it doesn't work out. And from what you mentioned you only have pain during sex or exercise? My goodness some have pain 24/7 and can't even sit or walk hon, so not to diminish yours hon, not at all.. but if it were 'me' I'd certainly be trying a LOT of things before I'd consider it. *sigh* Of course that's my opinion and I remember times when I was so bad I'd say to myself I wish they'd cut the dang thing off over the 10 yrs I suffered but TG I didn't. *sigh* Maybe you can tell us what you've tried so far & what results you've had and for how long this has been going on? Also as to the Topicort... hon honestly do NOT be afraid of it OR ask your doctor for a little milder one, there is a Topicort LP cream 0.05% that's even a class lower and I'm assuming you were given that by a physician right? So it's that he/she thought it might help (I'm also assuming you've not tried it right? ) It is often what would be the first suggested protocol for most dermatological pain, itch, inflammation etc (with no infections).....one would use a small peasize dab right before bedtime...(we heal when we sleep, plus there's less bathroom usage, or walking, sitting etc). You might try it for a week (maybe 2 if it's working) and see how it goes (just once a night) . It won't cause any damage in that short amt. of time. You could even dilute it a bit with some Emu oil or Olive oil etc. if you wanted to. Believe me I am no steroid lover *grin* and as much as I hate steroids because of what happened to me with extreme overuse and abuse (as told to by several physicians) and the horrible side effects I was left with, that was over 9 months of continuous use and I was told to 'slather it on' (How little I knew back then *sigh*) But you're only going to try a tiny peasize amt. hon (if you do) ... and then always gently massage that in. So believe me I really do dislike them, but I'm sensible enough to know of their benefits too when they are used ''correctly'' they can truly break that pain loop cycle as it slows down the immune systems reaction and let's the tissue start to heal itself in many cases. It may just be that you do have vestibulitis hon and there are other treatments and maybe even surgery down the road..... but I'd surely try everything I could before I got that far (and no idea if you have hon) so forgive me I don't mean to sound like I'm lecturing, *smile* it's only because I care. I've seen some good results and I've seen those who end up far worse with surgery and all I'm saying is the steroids might be worth a try and to please not be afraid of them. Just use them wisely. Just my two cents hon . Hugs Dee~ .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 HI ....... ! Hon I hope you get a 2nd and a 3rd opinion (maybe a 4th) before you'd consider surgery !!!! Please hon.. Just remember surgery can't be undone if it doesn't work out. And from what you mentioned you only have pain during sex or exercise? My goodness some have pain 24/7 and can't even sit or walk hon, so not to diminish yours hon, not at all.. but if it were 'me' I'd certainly be trying a LOT of things before I'd consider it. *sigh* Of course that's my opinion and I remember times when I was so bad I'd say to myself I wish they'd cut the dang thing off over the 10 yrs I suffered but TG I didn't. *sigh* Maybe you can tell us what you've tried so far & what results you've had and for how long this has been going on? Also as to the Topicort... hon honestly do NOT be afraid of it OR ask your doctor for a little milder one, there is a Topicort LP cream 0.05% that's even a class lower and I'm assuming you were given that by a physician right? So it's that he/she thought it might help (I'm also assuming you've not tried it right? ) It is often what would be the first suggested protocol for most dermatological pain, itch, inflammation etc (with no infections).....one would use a small peasize dab right before bedtime...(we heal when we sleep, plus there's less bathroom usage, or walking, sitting etc). You might try it for a week (maybe 2 if it's working) and see how it goes (just once a night) . It won't cause any damage in that short amt. of time. You could even dilute it a bit with some Emu oil or Olive oil etc. if you wanted to. Believe me I am no steroid lover *grin* and as much as I hate steroids because of what happened to me with extreme overuse and abuse (as told to by several physicians) and the horrible side effects I was left with, that was over 9 months of continuous use and I was told to 'slather it on' (How little I knew back then *sigh*) But you're only going to try a tiny peasize amt. hon (if you do) ... and then always gently massage that in. So believe me I really do dislike them, but I'm sensible enough to know of their benefits too when they are used ''correctly'' they can truly break that pain loop cycle as it slows down the immune systems reaction and let's the tissue start to heal itself in many cases. It may just be that you do have vestibulitis hon and there are other treatments and maybe even surgery down the road..... but I'd surely try everything I could before I got that far (and no idea if you have hon) so forgive me I don't mean to sound like I'm lecturing, *smile* it's only because I care. I've seen some good results and I've seen those who end up far worse with surgery and all I'm saying is the steroids might be worth a try and to please not be afraid of them. Just use them wisely. Just my two cents hon . Hugs Dee~ .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Dee/Kristy, Thank you both for confirming to me what I felt. No, I have not tired other things b/c this is the first time I have been diagnosed. I have suspected VVS but no dr would give me the time of day, only told me to use more lube and loosen up when we try to be intimate. I didn't know I had a problem until two years ago when I got married. But we've only been able to have sex maybe 3 or 4 times b/c the pain is so severe. I have used lidocaine before each time, but it is so painful to apply and then afterwards when it wears off the pain is extreme too, so I don't see that as a solution. I will try the Topicort in small doses and see if there is any improvement. And I will keep looking for another dr. I know you all know how it goes when you just go through the list of md's on the insurance list. I was just so excited to have someone recognize there was actually something wrong. Believe me, Dee, when you say that others have pain 24/7, I realize that and that is why I didn't want to use the cream if it could cause my pain to increase to that point. I don't want to do anything to make it worse and get to that point. But I also want to save my marriage. This is very hard on him. We waited until we were married and he was a virgin when we got married (I wasn't). I think he feels like he got jipped. The strange thing is when I was with previous partners I had no pain. But I did have surgery for endo before I got married and I believe there could have been some trauma involved with that. Anyway, I thank you for the advice, anyone out there from Arkansas who knows of a good Doc? Thanks again, erin > > HI ....... ! > > Hon I hope you get a 2nd and a 3rd opinion (maybe a 4th) before you'd consider surgery !!!! Please hon.. Just remember surgery can't be undone if it doesn't work out. And from what you mentioned you only have pain during sex or exercise? My goodness some have pain 24/7 and can't even sit or walk hon, so not to diminish yours hon, not at all.. but if it were 'me' I'd certainly be trying a LOT of things before I'd consider it. *sigh* > > Of course that's my opinion and I remember times when I was so bad I'd say to myself I wish they'd cut the dang thing off over the 10 yrs I suffered but TG I didn't. *sigh* > > Maybe you can tell us what you've tried so far & what results you've had and for how long this has been going on? > > Also as to the Topicort... hon honestly do NOT be afraid of it OR ask your doctor for a little milder one, there is a Topicort LP cream 0.05% that's even a class lower and I'm assuming you were given that by a physician right? So it's that he/she thought it might help (I'm also assuming you've not tried it right? ) > > It is often what would be the first suggested protocol for most dermatological pain, itch, inflammation etc (with no infections).....one would use a small peasize dab right before bedtime...(we heal when we sleep, plus there's less bathroom usage, or walking, sitting etc). > > You might try it for a week (maybe 2 if it's working) and see how it goes (just once a night) . It won't cause any damage in that short amt. of time. You could even dilute it a bit with some Emu oil or Olive oil etc. if you wanted to. > > Believe me I am no steroid lover *grin* and as much as I hate steroids because of what happened to me with extreme overuse and abuse (as told to by several physicians) and the horrible side effects I was left with, that was over 9 months of continuous use and I was told to 'slather it on' (How little I knew back then *sigh*) But you're only going to try a tiny peasize amt. hon (if you do) ... and then always gently massage that in. > > So believe me I really do dislike them, but I'm sensible enough to know of their benefits too when they are used ''correctly'' they can truly break that pain loop cycle as it slows down the immune systems reaction and let's the tissue start to heal itself in many cases. > > It may just be that you do have vestibulitis hon and there are other treatments and maybe even surgery down the road..... but I'd surely try everything I could before I got that far (and no idea if you have hon) so forgive me I don't mean to sound like I'm lecturing, *smile* it's only because I care. I've seen some good results and I've seen those who end up far worse with surgery and all I'm saying is the steroids might be worth a try and to please not be afraid of them. Just use them wisely. > > Just my two cents hon . > > Hugs > Dee~ > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Dee/Kristy, Thank you both for confirming to me what I felt. No, I have not tired other things b/c this is the first time I have been diagnosed. I have suspected VVS but no dr would give me the time of day, only told me to use more lube and loosen up when we try to be intimate. I didn't know I had a problem until two years ago when I got married. But we've only been able to have sex maybe 3 or 4 times b/c the pain is so severe. I have used lidocaine before each time, but it is so painful to apply and then afterwards when it wears off the pain is extreme too, so I don't see that as a solution. I will try the Topicort in small doses and see if there is any improvement. And I will keep looking for another dr. I know you all know how it goes when you just go through the list of md's on the insurance list. I was just so excited to have someone recognize there was actually something wrong. Believe me, Dee, when you say that others have pain 24/7, I realize that and that is why I didn't want to use the cream if it could cause my pain to increase to that point. I don't want to do anything to make it worse and get to that point. But I also want to save my marriage. This is very hard on him. We waited until we were married and he was a virgin when we got married (I wasn't). I think he feels like he got jipped. The strange thing is when I was with previous partners I had no pain. But I did have surgery for endo before I got married and I believe there could have been some trauma involved with that. Anyway, I thank you for the advice, anyone out there from Arkansas who knows of a good Doc? Thanks again, erin > > HI ....... ! > > Hon I hope you get a 2nd and a 3rd opinion (maybe a 4th) before you'd consider surgery !!!! Please hon.. Just remember surgery can't be undone if it doesn't work out. And from what you mentioned you only have pain during sex or exercise? My goodness some have pain 24/7 and can't even sit or walk hon, so not to diminish yours hon, not at all.. but if it were 'me' I'd certainly be trying a LOT of things before I'd consider it. *sigh* > > Of course that's my opinion and I remember times when I was so bad I'd say to myself I wish they'd cut the dang thing off over the 10 yrs I suffered but TG I didn't. *sigh* > > Maybe you can tell us what you've tried so far & what results you've had and for how long this has been going on? > > Also as to the Topicort... hon honestly do NOT be afraid of it OR ask your doctor for a little milder one, there is a Topicort LP cream 0.05% that's even a class lower and I'm assuming you were given that by a physician right? So it's that he/she thought it might help (I'm also assuming you've not tried it right? ) > > It is often what would be the first suggested protocol for most dermatological pain, itch, inflammation etc (with no infections).....one would use a small peasize dab right before bedtime...(we heal when we sleep, plus there's less bathroom usage, or walking, sitting etc). > > You might try it for a week (maybe 2 if it's working) and see how it goes (just once a night) . It won't cause any damage in that short amt. of time. You could even dilute it a bit with some Emu oil or Olive oil etc. if you wanted to. > > Believe me I am no steroid lover *grin* and as much as I hate steroids because of what happened to me with extreme overuse and abuse (as told to by several physicians) and the horrible side effects I was left with, that was over 9 months of continuous use and I was told to 'slather it on' (How little I knew back then *sigh*) But you're only going to try a tiny peasize amt. hon (if you do) ... and then always gently massage that in. > > So believe me I really do dislike them, but I'm sensible enough to know of their benefits too when they are used ''correctly'' they can truly break that pain loop cycle as it slows down the immune systems reaction and let's the tissue start to heal itself in many cases. > > It may just be that you do have vestibulitis hon and there are other treatments and maybe even surgery down the road..... but I'd surely try everything I could before I got that far (and no idea if you have hon) so forgive me I don't mean to sound like I'm lecturing, *smile* it's only because I care. I've seen some good results and I've seen those who end up far worse with surgery and all I'm saying is the steroids might be worth a try and to please not be afraid of them. Just use them wisely. > > Just my two cents hon . > > Hugs > Dee~ > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Dee/Kristy, Thank you both for confirming to me what I felt. No, I have not tired other things b/c this is the first time I have been diagnosed. I have suspected VVS but no dr would give me the time of day, only told me to use more lube and loosen up when we try to be intimate. I didn't know I had a problem until two years ago when I got married. But we've only been able to have sex maybe 3 or 4 times b/c the pain is so severe. I have used lidocaine before each time, but it is so painful to apply and then afterwards when it wears off the pain is extreme too, so I don't see that as a solution. I will try the Topicort in small doses and see if there is any improvement. And I will keep looking for another dr. I know you all know how it goes when you just go through the list of md's on the insurance list. I was just so excited to have someone recognize there was actually something wrong. Believe me, Dee, when you say that others have pain 24/7, I realize that and that is why I didn't want to use the cream if it could cause my pain to increase to that point. I don't want to do anything to make it worse and get to that point. But I also want to save my marriage. This is very hard on him. We waited until we were married and he was a virgin when we got married (I wasn't). I think he feels like he got jipped. The strange thing is when I was with previous partners I had no pain. But I did have surgery for endo before I got married and I believe there could have been some trauma involved with that. Anyway, I thank you for the advice, anyone out there from Arkansas who knows of a good Doc? Thanks again, erin > > HI ....... ! > > Hon I hope you get a 2nd and a 3rd opinion (maybe a 4th) before you'd consider surgery !!!! Please hon.. Just remember surgery can't be undone if it doesn't work out. And from what you mentioned you only have pain during sex or exercise? My goodness some have pain 24/7 and can't even sit or walk hon, so not to diminish yours hon, not at all.. but if it were 'me' I'd certainly be trying a LOT of things before I'd consider it. *sigh* > > Of course that's my opinion and I remember times when I was so bad I'd say to myself I wish they'd cut the dang thing off over the 10 yrs I suffered but TG I didn't. *sigh* > > Maybe you can tell us what you've tried so far & what results you've had and for how long this has been going on? > > Also as to the Topicort... hon honestly do NOT be afraid of it OR ask your doctor for a little milder one, there is a Topicort LP cream 0.05% that's even a class lower and I'm assuming you were given that by a physician right? So it's that he/she thought it might help (I'm also assuming you've not tried it right? ) > > It is often what would be the first suggested protocol for most dermatological pain, itch, inflammation etc (with no infections).....one would use a small peasize dab right before bedtime...(we heal when we sleep, plus there's less bathroom usage, or walking, sitting etc). > > You might try it for a week (maybe 2 if it's working) and see how it goes (just once a night) . It won't cause any damage in that short amt. of time. You could even dilute it a bit with some Emu oil or Olive oil etc. if you wanted to. > > Believe me I am no steroid lover *grin* and as much as I hate steroids because of what happened to me with extreme overuse and abuse (as told to by several physicians) and the horrible side effects I was left with, that was over 9 months of continuous use and I was told to 'slather it on' (How little I knew back then *sigh*) But you're only going to try a tiny peasize amt. hon (if you do) ... and then always gently massage that in. > > So believe me I really do dislike them, but I'm sensible enough to know of their benefits too when they are used ''correctly'' they can truly break that pain loop cycle as it slows down the immune systems reaction and let's the tissue start to heal itself in many cases. > > It may just be that you do have vestibulitis hon and there are other treatments and maybe even surgery down the road..... but I'd surely try everything I could before I got that far (and no idea if you have hon) so forgive me I don't mean to sound like I'm lecturing, *smile* it's only because I care. I've seen some good results and I've seen those who end up far worse with surgery and all I'm saying is the steroids might be worth a try and to please not be afraid of them. Just use them wisely. > > Just my two cents hon . > > Hugs > Dee~ > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 , You can have Lidocaine compounded with a less irritating base such as aloe as one example. I hope all goes well with the Topicort. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 , You can have Lidocaine compounded with a less irritating base such as aloe as one example. I hope all goes well with the Topicort. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Hey there, I had a complete vulvar vestibulectomy in May of 2001. It was a sucessful procedure, however before I even considered surgery, I tried many other things first. I also made sure that I had the procedure done by a specialist (someone who's special interest and focus is vulvar vestibuliteis). As far as I know a perineoplasty is just the removal of the first layer of tissue covering the vestibulary glands and around the perinium in a horseshoe shape. I personally prefer the vulvar vestibulectomy which actually removes the entire glands which can grow downward up to 4 inches long! The perinoplasty is less invasive, but it can block the rest of the gland and cause painful cysts. Also, just removing the tops of the glands and the first layer of tissue is often not enough. The entire gland may be hardend and causing pain. It sounds as if you have not tried anything else yet for your vvs. If you would like too and the doctor is not offering it. It may be that the person you have seen is primarily a surgeon and he or she may not be willing to try anything else first. If that is the case you could ask him if he would be willing to refer you to somenone that you could try other treatments with first before returning to him for surgery if all does not work out. Bunny _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Hey there, I had a complete vulvar vestibulectomy in May of 2001. It was a sucessful procedure, however before I even considered surgery, I tried many other things first. I also made sure that I had the procedure done by a specialist (someone who's special interest and focus is vulvar vestibuliteis). As far as I know a perineoplasty is just the removal of the first layer of tissue covering the vestibulary glands and around the perinium in a horseshoe shape. I personally prefer the vulvar vestibulectomy which actually removes the entire glands which can grow downward up to 4 inches long! The perinoplasty is less invasive, but it can block the rest of the gland and cause painful cysts. Also, just removing the tops of the glands and the first layer of tissue is often not enough. The entire gland may be hardend and causing pain. It sounds as if you have not tried anything else yet for your vvs. If you would like too and the doctor is not offering it. It may be that the person you have seen is primarily a surgeon and he or she may not be willing to try anything else first. If that is the case you could ask him if he would be willing to refer you to somenone that you could try other treatments with first before returning to him for surgery if all does not work out. Bunny _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2006 Report Share Posted July 22, 2006 , Who did your surgery? I had surgery many years ago which did not help much. Clearly removing the top layer of the glands did not work because they just surfaced again (some in different places) with much the same symptoms. My Skene's glands are involved. My urogynecologist says that removing these would entail removing much of the urethra, as the glands form a labyrinth there. D > > Hey there, > > I had a complete vulvar vestibulectomy in May of 2001. It was a sucessful > procedure, however before I even considered surgery, I tried many other > things first. I also made sure that I had the procedure done by a > specialist (someone who's special interest and focus is vulvar > vestibuliteis). > > As far as I know a perineoplasty is just the removal of the first layer of > tissue covering the vestibulary glands and around the perinium in a > horseshoe shape. I personally prefer the vulvar vestibulectomy which > actually removes the entire glands which can grow downward up to 4 inches > long! The perinoplasty is less invasive, but it can block the rest of the > gland and cause painful cysts. Also, just removing the tops of the glands > and the first layer of tissue is often not enough. The entire gland may be > hardend and causing pain. > > It sounds as if you have not tried anything else yet for your vvs. If you > would like too and the doctor is not offering it. It may be that the person > you have seen is primarily a surgeon and he or she may not be willing to try > anything else first. If that is the case you could ask him if he would be > willing to refer you to somenone that you could try other treatments with > first before returning to him for surgery if all does not work out. > > Bunny > > _________________________________________________________________ > Don't just search. Find. Check out the new MSN Search! > http://search.msn.click-url.com/go/onm00200636ave/direct/01/ > Quote Link to comment Share on other sites More sharing options...
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