Guest guest Posted May 27, 2008 Report Share Posted May 27, 2008 Jen, I go to a pain clinic and the type of pain we have is very difficult to treat with pain medications. You may have to try several before you find something that works. I take some pretty hard core medications, and they still don’t work. My pain clinic is in Manchester NH. I know of one in RI, but not one in Maine. I go to two vulvar specialists also, and they are still confused on what to do. That is why I am continually asking on this forum to see if anyone has tried anything new. nne From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of jen Sent: Monday, May 26, 2008 8:47 AM To: VulvarDisorders Subject: Re: Jen/ LS and Clobetasol Hi Dee, I have lichen simplex which I believe I got from a reations to topicals I used for yeast and bv, I got that under control with the clob,, but that was well over a year now, and the licen simplex was in my vestibule area, now my pain is mostly on my labia majora, so I was diagnosed with vulvodynia, which I thought might be caused by overuse of clob.,, I tried neuronin and elaivil and either one seems to touch the pain, my doc did prescrbe premarin but it burns me as does most topicals I use on it. My vestibule does look like it has improved alot, but my labia majora is always red and sometimes swollen, and of course it burns...one time it swelled up so bad my boyfriend said it looked like a big tomato, so basically now I am living on darvocets just to live which still does not help that much. I have an appointment on the 28th this month AGAIN and I am hoping she will have some answers or at least send me to a pian clinic.....but living in the state of Maine the docs here have no clue on how to treat this, but I am hoping for relief soon... Well thanks for reading my ranting, I just needed to vent... Thanks so much Jen Dee Troll wrote: About the clob & LS?.... There are some physicians (and articles I've seen) who feel it should be continued as a maintenance and others who believe it should be used only on an 'as needed' basis. (For instance if in a flare up) so it's a matter of opinion. The as needed one I think would be as long as one is doing a minimal maintenance of both the E & T to keep the tissue good & healthy there isn't a continuous need for the steroids IF the symptoms don't return. Just like those with herpes... some believe a continuous medication is good... others only use it 'as needed' if a flare up is coming on. Some may go for years without an outbreak and to me it doesnt make sense to take a medication like that without any symptoms. (but that's me) One gal just said she keeps her Clob around like her fire extinguisher.. just in case... but hopes she never has to use it and hasn't in a long time. I personally feel the same way. Since steroids are to reverse inflammation, itch, swelling, etc. and if there are none (as long as the tissue is kept healthy and fed & nourished and that's where the E & T comes in).. it doesn't make logical sense 'to me' for a need for a steroid with no symptoms to revert. Even as Dr. J Willems and his women who vestibulitis...(some cancelled their scheduled surgery after they got so well using the E) he too said that using the E had to be continued to keep the symtoms away. So you do have a minimal maintenance of something but at least it's for food & nourishment and that makes sense to me, like brushing our teeth to prevent cavities, etc., But with the clob that's to reverse symptoms but if kept healthy healthy enough you hopefully won't have symptoms. *chuckle* (YOY what a ramble.. ha ha) For our new members who might not know, clob stands for clobetasol.. a generic very potent (class one) topical steroid that is usually used with LS (lichen sclerosis) or LP (lichen Planus) and if overused can result in some dire effects and even go systemic. Dee ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2008 Report Share Posted May 27, 2008 nne, I have an appointment tomorrow but my obgyn is on call, so my luck she will get called in , I waited 2 months for this appointment, I tried differnent pain meds but I can not have anything with codiene makes me very ill, so the only thing I take is darvocet whih does not help much, I also tried neuronin and elavil did not help, I went to a vulvar specialist in Mass wrote the V book, my insurance did not cover it so it cost me big bucks to be dx with vestiblitis, vulvodynia and lichen simplex, she told me to use the neurontin and the pain would go away that was the beginning of January and I am still in great pain....this is so frustrating I just can not imagine spending the rest of my life like this... Thanks Jern millburytimes wrote: Jen, I go to a pain clinic and the type of pain we have is very difficult to treat with pain medications. You may have to try several before you find something that works. I take some pretty hard core medications, and they still don’t work. My pain clinic is in Manchester NH. I know of one in RI, but not one in Maine. I go to two vulvar specialists also, and they are still confused on what to do. That is why I am continually asking on this forum to see if anyone has tried anything new. nne From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of jenSent: Monday, May 26, 2008 8:47 AMTo: VulvarDisorders Subject: Re: Jen/ LS and Clobetasol Hi Dee, I have lichen simplex which I believe I got from a reations to topicals I used for yeast and bv, I got that under control with the clob,, but that was well over a year now, and the licen simplex was in my vestibule area, now my pain is mostly on my labia majora, so I was diagnosed with vulvodynia, which I thought might be caused by overuse of clob.,, I tried neuronin and elaivil and either one seems to touch the pain, my doc did prescrbe premarin but it burns me as does most topicals I use on it. My vestibule does look like it has improved alot, but my labia majora is always red and sometimes swollen, and of course it burns...one time it swelled up so bad my boyfriend said it looked like a big tomato, so basically now I am living on darvocets just to live which still does not help that much. I have an appointment on the 28th this month AGAIN and I am hoping she will have some answers or at least send me to a pian clinic.....but living in the state of Maine the docs here have no clue on how to treat this, but I am hoping for relief soon... Well thanks for reading my ranting, I just needed to vent... Thanks so much JenDee Troll <dtroll (AT) cboss (DOT) com> wrote: About the clob & LS?.... There are some physicians (and articles I've seen) who feel it should be continued as a maintenance and others who believe it should be used only on an 'as needed' basis. (For instance if in a flare up) so it's a matter of opinion. The as needed one I think would be as long as one is doing a minimal maintenance of both the E & T to keep the tissue good & healthy there isn't a continuous need for the steroids IF the symptoms don't return. Just like those with herpes... some believe a continuous medication is good... others only use it 'as needed' if a flare up is coming on. Some may go for years without an outbreak and to me it doesnt make sense to take a medication like that without any symptoms. (but that's me) One gal just said she keeps her Clob around like her fire extinguisher.. just in case... but hopes she never has to use it and hasn't in a long time. I personally feel the same way. Since steroids are to reverse inflammation, itch, swelling, etc. and if there are none (as long as the tissue is kept healthy and fed & nourished and that's where the E & T comes in).. it doesn't make logical sense 'to me' for a need for a steroid with no symptoms to revert. Even as Dr. J Willems and his women who vestibulitis...(some cancelled their scheduled surgery after they got so well using the E) he too said that using the E had to be continued to keep the symtoms away. So you do have a minimal maintenance of something but at least it's for food & nourishment and that makes sense to me, like brushing our teeth to prevent cavities, etc., But with the clob that's to reverse symptoms but if kept healthy healthy enough you hopefully won't have symptoms. *chuckle* (YOY what a ramble.. ha ha) For our new members who might not know, clob stands for clobetasol.. a generic very potent (class one) topical steroid that is usually used with LS (lichen sclerosis) or LP (lichen Planus) and if overused can result in some dire effects and even go systemic. Dee ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2008 Report Share Posted May 27, 2008 Jen – I totally know what you are saying – I feel exactly the same way. I went to Dr. also. I am surprised she didn’t explain to you about LS needing continuing treatment. She tells everyone the same thing about VV and Vestibulitis, and I did not like her. That is why I am going to Dr. Lori Boardman in RI. I see her again in two weeks for more trigger point injections around the vagina and maybe she will give me something else. I also just ordered from Canada (it hasn’t come yet) the Elma cream that is suppose to completely deaden the area. Could you use something like that? nne From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of jen Sent: Tuesday, May 27, 2008 12:42 PM To: VulvarDisorders Subject: Re: Jen/ pain medications nne, I have an appointment tomorrow but my obgyn is on call, so my luck she will get called in , I waited 2 months for this appointment, I tried differnent pain meds but I can not have anything with codiene makes me very ill, so the only thing I take is darvocet whih does not help much, I also tried neuronin and elavil did not help, I went to a vulvar specialist in Mass wrote the V book, my insurance did not cover it so it cost me big bucks to be dx with vestiblitis, vulvodynia and lichen simplex, she told me to use the neurontin and the pain would go away that was the beginning of January and I am still in great pain....this is so frustrating I just can not imagine spending the rest of my life like this... Thanks Jern millburytimes wrote: Jen, I go to a pain clinic and the type of pain we have is very difficult to treat with pain medications. You may have to try several before you find something that works. I take some pretty hard core medications, and they still don’t work. My pain clinic is in Manchester NH. I know of one in RI, but not one in Maine. I go to two vulvar specialists also, and they are still confused on what to do. That is why I am continually asking on this forum to see if anyone has tried anything new. nne From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of jen Sent: Monday, May 26, 2008 8:47 AM To: VulvarDisorders Subject: Re: Jen/ LS and Clobetasol Hi Dee, I have lichen simplex which I believe I got from a reations to topicals I used for yeast and bv, I got that under control with the clob,, but that was well over a year now, and the licen simplex was in my vestibule area, now my pain is mostly on my labia majora, so I was diagnosed with vulvodynia, which I thought might be caused by overuse of clob.,, I tried neuronin and elaivil and either one seems to touch the pain, my doc did prescrbe premarin but it burns me as does most topicals I use on it. My vestibule does look like it has improved alot, but my labia majora is always red and sometimes swollen, and of course it burns...one time it swelled up so bad my boyfriend said it looked like a big tomato, so basically now I am living on darvocets just to live which still does not help that much. I have an appointment on the 28th this month AGAIN and I am hoping she will have some answers or at least send me to a pian clinic.....but living in the state of Maine the docs here have no clue on how to treat this, but I am hoping for relief soon... Well thanks for reading my ranting, I just needed to vent... Thanks so much Jen Dee Troll wrote: About the clob & LS?.... There are some physicians (and articles I've seen) who feel it should be continued as a maintenance and others who believe it should be used only on an 'as needed' basis. (For instance if in a flare up) so it's a matter of opinion. The as needed one I think would be as long as one is doing a minimal maintenance of both the E & T to keep the tissue good & healthy there isn't a continuous need for the steroids IF the symptoms don't return. Just like those with herpes... some believe a continuous medication is good... others only use it 'as needed' if a flare up is coming on. Some may go for years without an outbreak and to me it doesnt make sense to take a medication like that without any symptoms. (but that's me) One gal just said she keeps her Clob around like her fire extinguisher.. just in case... but hopes she never has to use it and hasn't in a long time. I personally feel the same way. Since steroids are to reverse inflammation, itch, swelling, etc. and if there are none (as long as the tissue is kept healthy and fed & nourished and that's where the E & T comes in).. it doesn't make logical sense 'to me' for a need for a steroid with no symptoms to revert. Even as Dr. J Willems and his women who vestibulitis...(some cancelled their scheduled surgery after they got so well using the E) he too said that using the E had to be continued to keep the symtoms away. So you do have a minimal maintenance of something but at least it's for food & nourishment and that makes sense to me, like brushing our teeth to prevent cavities, etc., But with the clob that's to reverse symptoms but if kept healthy healthy enough you hopefully won't have symptoms. *chuckle* (YOY what a ramble.. ha ha) For our new members who might not know, clob stands for clobetasol.. a generic very potent (class one) topical steroid that is usually used with LS (lichen sclerosis) or LP (lichen Planus) and if overused can result in some dire effects and even go systemic. Dee ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2008 Report Share Posted May 27, 2008 Jen,I have a hard time with pain meds, too. I plan to go back to the local Pain Doc 'sometime' and see if he can help me figure out what to take. Lortab, Vicodin -- anything with Oxycodone or Hydrocodone make me so sick and I itch all over my body. Very annoying. Tramadol works on pain for me, but it initially makes me very sleepy, then I get wired about 3 -4 hrs. later. Will wake me up from a sound sleep and I can't get back to sleep. My body is so sensitive to meds in general. Stinks! Take Care,Chelle Quote Link to comment Share on other sites More sharing options...
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