Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 In a message dated 12/1/00 5:56:02 AM Eastern Standard Time, lindag@... writes: > how are the - hummmmmm - bowels working??? > > lets just say twice now i had to run to make it ha ha `````````````````````````````````````````````````````````````````````````````` ```` http://www.epaybar.com/signup.asp?referal=recsecrets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 In a message dated 12/1/00 5:56:02 AM Eastern Standard Time, lindag@... writes: > how are the - hummmmmm - bowels working??? > > lets just say twice now i had to run to make it ha ha `````````````````````````````````````````````````````````````````````````````` ```` http://www.epaybar.com/signup.asp?referal=recsecrets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 In a message dated 12/1/00 7:38:29 PM Eastern Standard Time, RobinPurtee@... writes: > well today i found out i didn't feel as bloated as i thought i was sigh..... i cheated hanging head in shame. But it was for a good cause. my neice needed some one to have lunch with her at school cuz her mom couldn't go so i went and there was nothing on the menu carb friendly. Starting back tomorrow. wahhhhhhh i was doing so good `````````````````````````````````````````````````````````````````````````````` ```` http://www.epaybar.com/signup.asp?referal=recsecrets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 In a message dated 12/1/00 7:38:29 PM Eastern Standard Time, RobinPurtee@... writes: > well today i found out i didn't feel as bloated as i thought i was sigh..... i cheated hanging head in shame. But it was for a good cause. my neice needed some one to have lunch with her at school cuz her mom couldn't go so i went and there was nothing on the menu carb friendly. Starting back tomorrow. wahhhhhhh i was doing so good `````````````````````````````````````````````````````````````````````````````` ```` http://www.epaybar.com/signup.asp?referal=recsecrets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 About that bloated feeling.............flavored water instead of plain - maybe? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 Well, sometimes a girl's gotta do what a girl's gotta do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 Well, sometimes a girl's gotta do what a girl's gotta do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 > lets just say twice now i had to run to make it ha ha OK - at least we know that isn't a problem :-) Take Care G. 230/206/130 Sept/2000 ICQ #349692 Home Page - http://www.brunnet.net/k & l You can't change the direction of the wind, But you can adjust your sails. Owner of Atkins Challengers mailing list - to join go to - http://www.onelist.com/subscribe/AtkinsChallengers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 > lets just say twice now i had to run to make it ha ha OK - at least we know that isn't a problem :-) Take Care G. 230/206/130 Sept/2000 ICQ #349692 Home Page - http://www.brunnet.net/k & l You can't change the direction of the wind, But you can adjust your sails. Owner of Atkins Challengers mailing list - to join go to - http://www.onelist.com/subscribe/AtkinsChallengers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2002 Report Share Posted March 10, 2002 Hi Pam, I am going to ask my boyfriend about Paxil, he told me something about prevention of being addicted to it. I'll ask him today - maybe it was a different drug. Have you tried Neurontin? I tried it with no success, but for a friend of mine - cured her vv in 3 months. She was bad too - couldn't sit, couldn't walk, hated life so much. She had it for 2 years. What is the implant - maybe I should ask my doctor about it? Have you tried acupuncture? Also, my friend's sister is a cranio-sacral therapist and she says she has helped a lot of people. I would go to her but she lives in Colorado. My luck! I hope the Paxil works along with the testosterone cream. Take care!! Love, Seema > Seema, > Thank you for your kind words. The specialists I am seeing is actually a > very good doctor and so is the doctor I am seeing here, it is just soooo > frustrating that after almost three years of the constant burning I have yet > to find any relief. I have tried almost everything under the sun except > surgery. I tried impar block injections, injections of ladocaine and a > steroid > to the v glands, pt, low oxalate diet, yeast free diet, every cream I could > think > of. One of the reasons I felt so discouraged after my doctor appointment was > that she confirmed what I already suspected for the last year that I have > nerve damage and that removing the glands would not be the answer for me. She > is > having me try paxil for the neuropathic pain and she also added testosterone > cream (compounded), to use with my estrace, after three months if I still > have > no improvement she will be referring me to an anesthesiologist who will prob- > ably do a neuro stimulation implant. She is not the first doctor to suggest > the > implant, but I still want to research it and educate myself as much as > possible > on it. I hope you are having a good weekend and also a painfree as possible > one. Take care and I am keeping you in my prayers that you also start to > feel better. > > Love, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Seema, Yes I did try Neurontin, it didn't help me at all but I know it has helped other women with our problem. I also tried acupuncture but only once because my insurance wouldn't cover it. What is a cranio-sacral therapist? I have never heard of one before. The implant is something that is implanted in the lower part of the spine I believe, I would periodically push a button that would zap or shock the nerves. I think the point of it is to interupt the nerves that are miss firing. I still don't know everything about it, but I plan on doing some research on it latter this week. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Pam, I heard of something like this for Parkinson's disease - they showed the person touching a button and his shaking went away. I hope this works for you. I am so sorry - it sounds like you have tried so much. How did your symptoms start? I'll tell you more about cranio-scacral - I've just started to read a book about it. I guess they feel there are areas of the skull that control different parts of the body. They also feel that there is almost like a rhythmic movement from the brain through the spinal cord and they try to manipulate this movement. It has been used for neuralgia, immune disorders, lots of stuff. I want to try it after I have exhausted everything else. The things I have yet to try are PT/biofeedback, Elavil (don't really want to try this), and I am waiting for the Multi-Gyn gel. My friend tried hers out - her discharge is gone now in a week after having it for 2 years. They never found a bacteria/yeast in her either. They did say she had LS. Hope everything works out, Pam. Were you the one who also used to have fissures - if so do they believe this implant will help with rectal pain as well? Love, Seema Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Hi Seema, The book sounds interesting, whats the name of it? Right now I am reading Spontaneous Healing by Weil. Suzy recommended it, it's really intersting. Yes, I have had my share of rectal fissures in the past. Right now I only have flare ups of the rectal burning, I wish it was like that for the vulva burning. So do you have a discharge with your vulva burning? I have never had a discharge with mine. I hope the gel works for you. Take care. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Hi Seema, The book sounds interesting, whats the name of it? Right now I am reading Spontaneous Healing by Weil. Suzy recommended it, it's really intersting. Yes, I have had my share of rectal fissures in the past. Right now I only have flare ups of the rectal burning, I wish it was like that for the vulva burning. So do you have a discharge with your vulva burning? I have never had a discharge with mine. I hope the gel works for you. Take care. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Dr. Weil has a website as well with an extensive Q and A archive. I got that book for Betty as well along with " 8 Weeks to Optimum Health. " Re: Pam > Hi Seema, > > The book sounds interesting, whats the name of it? > Right now I am reading Spontaneous Healing by > Weil. Suzy recommended it, it's really intersting. > Yes, I have had my share of rectal fissures in the > past. Right now I only have flare ups of the rectal > burning, I wish it was like that for the vulva > burning. So do you have a discharge with your vulva > burning? I have never had a discharge with mine. > I hope the gel works for you. Take care. > > Hugs, Pam > > > > > > > > *****END OF MESSAGE***** > ------------------------------------------------- > To post message: VulvarDisorders > To Subscribe: VulvarDisorders-subscribe > Unsubscribe: VulvarDisorders-unsubscribe > List owner: VulvarDisorders-owner > > ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Hi Pam, The book is called Wisdom In The Body - The Craniosacral Approach To Essential Health. I should read Spontaneous Healing. I also have been reading the Pain Cure by Dharma Singh. It's interesting, but it seems like things are easier to battle when you know what is the cause. May I ask, how did your rectal burning go down? I have it every time I have a bowel movement - it burns, but it lasts only for a couple of minutes. I've been checked for fissures and each time, she says, everything looks fine. Maybe it's neuromuscular - I wish someone knew. I have tons of discharge with my vulva burning, which is why the intravaginal steroids worked well with me. But I don't want to do that anymore - I'm still waiting for this gel to come in the mail. I'm excited to try it after my friend's discharge went away - 2 years of discharge, she tried everything. At least you don't have any discharge, so you don't have to be dripping out all the time! I'm hoping you find relief soon - I know it is hard when nothing seems to work. Love, Seema > Hi Seema, > > The book sounds interesting, whats the name of it? > Right now I am reading Spontaneous Healing by > Weil. Suzy recommended it, it's really intersting. > Yes, I have had my share of rectal fissures in the > past. Right now I only have flare ups of the rectal > burning, I wish it was like that for the vulva > burning. So do you have a discharge with your vulva > burning? I have never had a discharge with mine. > I hope the gel works for you. Take care. > > Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Hi Seema, You are right it would be much easier to battle this if we knew the cause. I think I will read Widom In The Body next, it makes me feel like I am at least trying to find answers even if the medical field can't. I do sometimes have the rectal burning after a bowel movement but not always. My burning in the past was like the burning I am experiencing now with the vulva and vagina, 24/7. It was horrible almost worse then what I am experiencing now. I am not sure why It calmed down, it was about the time it decided to travel to the other areas. I do use a & d everyday after a bowel movement to keep the skin tissue from tearing. I am glad I'm not experiencing vaginal discharge but sometimes I think if I did have the discharge then at least I could blame my burning on that! Well, better go, I am heading out of town and the weather is terrible here, snowing and icy. Take care & hope you have a good week. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Hi Daphne, The discharge is white and lotion-like. They do all these cultures and it keeps on coming negative for yeast/bacteria. So, my naturopath said she is going to send the culture in to Great Smokies Diagnostic - apparently, they also have a vaginosis test where they will give specific counts to bacteria/yeast they find. She did tell me she saw one woman who complained of discharge for 3 years - tests came back negative - she then did the Great Smokies test and it turned out positive. I have been using lactobacillus inserts in there but no such luck. Reason why I'm so excited and waiting for that Multi-Gyn gel is because the lady who recommended it got discharge as well with no infection - 1 week later it is almost gone. In your case, I heard that you can get too much discharge from excess lactobacillus. Does the discharge decrease after the baking soda? The Great Smokies test also reports excess lactobacillus. Hope you feel better! Love, Seema > > Hi Seema, > > > > The book sounds interesting, whats the name of it? > > Right now I am reading Spontaneous Healing by > > Weil. Suzy recommended it, it's really intersting. > > Yes, I have had my share of rectal fissures in the > > past. Right now I only have flare ups of the rectal > > burning, I wish it was like that for the vulva > > burning. So do you have a discharge with your vulva > > burning? I have never had a discharge with mine. > > I hope the gel works for you. Take care. > > > > Hugs, Pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Seema, is the discharge you have white and look like yeast or clear or?? I ask because I have had horrible discharge since mine started also. I went in today and asked my DO to look at it because I can tell it is burning my skin and causeing me to swell again, she saw no yeast.....said she sees bacteria but couldn't tell if it is lacto or something else she sent it out to see what they find, and told me to continue doucheing with water to keep it down and keep trying to keep it off my skin. I still think when I find out what is causing the discharge and get it back to normal that at least most of my problem will be resolved. I just hope this lab knows what to look for or I will have to wait til I see the vulvar dr. in may. Daphne Re: Pam Hi Pam, The book is called Wisdom In The Body - The Craniosacral Approach To Essential Health. I should read Spontaneous Healing. I also have been reading the Pain Cure by Dharma Singh. It's interesting, but it seems like things are easier to battle when you know what is the cause. May I ask, how did your rectal burning go down? I have it every time I have a bowel movement - it burns, but it lasts only for a couple of minutes. I've been checked for fissures and each time, she says, everything looks fine. Maybe it's neuromuscular - I wish someone knew. I have tons of discharge with my vulva burning, which is why the intravaginal steroids worked well with me. But I don't want to do that anymore - I'm still waiting for this gel to come in the mail. I'm excited to try it after my friend's discharge went away - 2 years of discharge, she tried everything. At least you don't have any discharge, so you don't have to be dripping out all the time! I'm hoping you find relief soon - I know it is hard when nothing seems to work.Love,Seema> Hi Seema,> > The book sounds interesting, whats the name of it?> Right now I am reading Spontaneous Healing by > Weil. Suzy recommended it, it's really intersting.> Yes, I have had my share of rectal fissures in the> past. Right now I only have flare ups of the rectal> burning, I wish it was like that for the vulva> burning. So do you have a discharge with your vulva> burning? I have never had a discharge with mine. > I hope the gel works for you. Take care.> > Hugs, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 yep, the soda helps I may have to have my Dr. send my cultures to them if this comes back negitive, I am curious to see how the multi-gyn works for you and to hear what Great smokies says. Daphne Re: Pam Hi Daphne, The discharge is white and lotion-like. They do all these cultures and it keeps on coming negative for yeast/bacteria. So, my naturopath said she is going to send the culture in to Great Smokies Diagnostic - apparently, they also have a vaginosis test where they will give specific counts to bacteria/yeast they find. She did tell me she saw one woman who complained of discharge for 3 years - tests came back negative - she then did the Great Smokies test and it turned out positive. I have been using lactobacillus inserts in there but no such luck. Reason why I'm so excited and waiting for that Multi-Gyn gel is because the lady who recommended it got discharge as well with no infection - 1 week later it is almost gone. In your case, I heard that you can get too much discharge from excess lactobacillus. Does the discharge decrease after the baking soda? The Great Smokies test also reports excess lactobacillus. Hope you feel better!Love,Seema> > Hi Seema,> > > > The book sounds interesting, whats the name of it?> > Right now I am reading Spontaneous Healing by > > Weil. Suzy recommended it, it's really intersting.> > Yes, I have had my share of rectal fissures in the> > past. Right now I only have flare ups of the rectal> > burning, I wish it was like that for the vulva> > burning. So do you have a discharge with your vulva> > burning? I have never had a discharge with mine. > > I hope the gel works for you. Take care.> > > > Hugs, Pam> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hi Pam, I'm sorry for all that you are going through - I too feel like that when nothing works for me - Estrace, food allergy diet, Neurontin, antifungals, etc,etc!! I just wanted to say is it possible to get a second opinion on the biopsy (can they have the results confirmed elsewhere). Only reason I say this is because of that friend of mine I told you about who had nerve damage and the biopsy showed LS. She, too, found testosterone really irritating and stopped it. Now, she has no problems. Also, the lichen part can happen just because the area has been inflamed for so long. But I sometimes am real wary about these biopsy results. I read how one woman - it kept saying lots of eosinophils so this doc put her on antihistamines. It turns out she had a weird bacterial infection and needed IV antibiotics. This is frustrating and sometimes feels like finding a needle in a haystack! Take care and feel free to complain. Love, Seema > Hi Tracey, > How long have you been seeing Dr. on? I saw her for the first time last > August. I have had burning not itching of the vulva, vagina and rectal area > for > 2 1/2 years, 24/7. By evening my burning has spread to my inner thighs. Dr. > on said I have atrophic vaginitis, vestubulitis and early stages of > Lichen > Sclerosis. I had three biopsies done in November that confirmed the LS and > atrophic vaginitis. I was probably on the clob for about three weeks before I > started having the burns on my inner thighs. Since I have burning constantly > and said the burning would be worse at the beginning of using the clob > I > didn't realize it was actually burning my skin right away. I remember crying > but > didn't know why and my legs were hurting and throbbing so I got out the > mirror > and that is when I realized the clob had burned my skin. My burning is always > so intense that I can't even tell when I have an added pain to that area > until I > have a couple of days of where I can't stop crying. The steroid cream I am on > now has not helped with my pain at all. Dr. on has now added Testost- > erone cream which even seems irritating. The estring and estrace have > improved > my skin tissue but I still have the same symptoms that I have had from the > beginning. Maybe I will try the emu oil. I have suspected all along that my > problems are related to my previous rectal surgeries. I saw a neurologist yes- > terday and she told me that she felt my problem is nerve related and that the > nerve > or nerves probably got stretched during surgery. She ordered an MRI of my > pelvic > and back area, which I will be having done April 7th. I have always wondered > why other women on this list have found things that have helped them but > everything I have tried makes me even feel worse, it is so frustrating, > especially when there > is not break from the pain. What are your symptoms and what have you all > tried? > I guess right now I am at the point where I am becoming tired of the medical > field > and how every doctor has her or his diagnosis and say they can make me > better, > but it just has not happened. I am going to give PT a try again since I was > not > able to finish it because of my skin tissue was so fragile, but now that it > looks > better I thought I would start up again. Tracey feel free to e-mail me > privately > anytime, I do understand what you are going through. I promise I will not > complain next time (maybe a little). Take care and keep me posted. > > Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hi Pam, I'm sorry for all that you are going through - I too feel like that when nothing works for me - Estrace, food allergy diet, Neurontin, antifungals, etc,etc!! I just wanted to say is it possible to get a second opinion on the biopsy (can they have the results confirmed elsewhere). Only reason I say this is because of that friend of mine I told you about who had nerve damage and the biopsy showed LS. She, too, found testosterone really irritating and stopped it. Now, she has no problems. Also, the lichen part can happen just because the area has been inflamed for so long. But I sometimes am real wary about these biopsy results. I read how one woman - it kept saying lots of eosinophils so this doc put her on antihistamines. It turns out she had a weird bacterial infection and needed IV antibiotics. This is frustrating and sometimes feels like finding a needle in a haystack! Take care and feel free to complain. Love, Seema > Hi Tracey, > How long have you been seeing Dr. on? I saw her for the first time last > August. I have had burning not itching of the vulva, vagina and rectal area > for > 2 1/2 years, 24/7. By evening my burning has spread to my inner thighs. Dr. > on said I have atrophic vaginitis, vestubulitis and early stages of > Lichen > Sclerosis. I had three biopsies done in November that confirmed the LS and > atrophic vaginitis. I was probably on the clob for about three weeks before I > started having the burns on my inner thighs. Since I have burning constantly > and said the burning would be worse at the beginning of using the clob > I > didn't realize it was actually burning my skin right away. I remember crying > but > didn't know why and my legs were hurting and throbbing so I got out the > mirror > and that is when I realized the clob had burned my skin. My burning is always > so intense that I can't even tell when I have an added pain to that area > until I > have a couple of days of where I can't stop crying. The steroid cream I am on > now has not helped with my pain at all. Dr. on has now added Testost- > erone cream which even seems irritating. The estring and estrace have > improved > my skin tissue but I still have the same symptoms that I have had from the > beginning. Maybe I will try the emu oil. I have suspected all along that my > problems are related to my previous rectal surgeries. I saw a neurologist yes- > terday and she told me that she felt my problem is nerve related and that the > nerve > or nerves probably got stretched during surgery. She ordered an MRI of my > pelvic > and back area, which I will be having done April 7th. I have always wondered > why other women on this list have found things that have helped them but > everything I have tried makes me even feel worse, it is so frustrating, > especially when there > is not break from the pain. What are your symptoms and what have you all > tried? > I guess right now I am at the point where I am becoming tired of the medical > field > and how every doctor has her or his diagnosis and say they can make me > better, > but it just has not happened. I am going to give PT a try again since I was > not > able to finish it because of my skin tissue was so fragile, but now that it > looks > better I thought I would start up again. Tracey feel free to e-mail me > privately > anytime, I do understand what you are going through. I promise I will not > complain next time (maybe a little). Take care and keep me posted. > > Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hi Pam, I'm sorry for all that you are going through - I too feel like that when nothing works for me - Estrace, food allergy diet, Neurontin, antifungals, etc,etc!! I just wanted to say is it possible to get a second opinion on the biopsy (can they have the results confirmed elsewhere). Only reason I say this is because of that friend of mine I told you about who had nerve damage and the biopsy showed LS. She, too, found testosterone really irritating and stopped it. Now, she has no problems. Also, the lichen part can happen just because the area has been inflamed for so long. But I sometimes am real wary about these biopsy results. I read how one woman - it kept saying lots of eosinophils so this doc put her on antihistamines. It turns out she had a weird bacterial infection and needed IV antibiotics. This is frustrating and sometimes feels like finding a needle in a haystack! Take care and feel free to complain. Love, Seema > Hi Tracey, > How long have you been seeing Dr. on? I saw her for the first time last > August. I have had burning not itching of the vulva, vagina and rectal area > for > 2 1/2 years, 24/7. By evening my burning has spread to my inner thighs. Dr. > on said I have atrophic vaginitis, vestubulitis and early stages of > Lichen > Sclerosis. I had three biopsies done in November that confirmed the LS and > atrophic vaginitis. I was probably on the clob for about three weeks before I > started having the burns on my inner thighs. Since I have burning constantly > and said the burning would be worse at the beginning of using the clob > I > didn't realize it was actually burning my skin right away. I remember crying > but > didn't know why and my legs were hurting and throbbing so I got out the > mirror > and that is when I realized the clob had burned my skin. My burning is always > so intense that I can't even tell when I have an added pain to that area > until I > have a couple of days of where I can't stop crying. The steroid cream I am on > now has not helped with my pain at all. Dr. on has now added Testost- > erone cream which even seems irritating. The estring and estrace have > improved > my skin tissue but I still have the same symptoms that I have had from the > beginning. Maybe I will try the emu oil. I have suspected all along that my > problems are related to my previous rectal surgeries. I saw a neurologist yes- > terday and she told me that she felt my problem is nerve related and that the > nerve > or nerves probably got stretched during surgery. She ordered an MRI of my > pelvic > and back area, which I will be having done April 7th. I have always wondered > why other women on this list have found things that have helped them but > everything I have tried makes me even feel worse, it is so frustrating, > especially when there > is not break from the pain. What are your symptoms and what have you all > tried? > I guess right now I am at the point where I am becoming tired of the medical > field > and how every doctor has her or his diagnosis and say they can make me > better, > but it just has not happened. I am going to give PT a try again since I was > not > able to finish it because of my skin tissue was so fragile, but now that it > looks > better I thought I would start up again. Tracey feel free to e-mail me > privately > anytime, I do understand what you are going through. I promise I will not > complain next time (maybe a little). Take care and keep me posted. > > Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hi Pam, I'm sorry for all that you are going through - I too feel like that when nothing works for me - Estrace, food allergy diet, Neurontin, antifungals, etc,etc!! I just wanted to say is it possible to get a second opinion on the biopsy (can they have the results confirmed elsewhere). Only reason I say this is because of that friend of mine I told you about who had nerve damage and the biopsy showed LS. She, too, found testosterone really irritating and stopped it. Now, she has no problems. Also, the lichen part can happen just because the area has been inflamed for so long. But I sometimes am real wary about these biopsy results. I read how one woman - it kept saying lots of eosinophils so this doc put her on antihistamines. It turns out she had a weird bacterial infection and needed IV antibiotics. This is frustrating and sometimes feels like finding a needle in a haystack! Take care and feel free to complain. Love, Seema > Hi Tracey, > How long have you been seeing Dr. on? I saw her for the first time last > August. I have had burning not itching of the vulva, vagina and rectal area > for > 2 1/2 years, 24/7. By evening my burning has spread to my inner thighs. Dr. > on said I have atrophic vaginitis, vestubulitis and early stages of > Lichen > Sclerosis. I had three biopsies done in November that confirmed the LS and > atrophic vaginitis. I was probably on the clob for about three weeks before I > started having the burns on my inner thighs. Since I have burning constantly > and said the burning would be worse at the beginning of using the clob > I > didn't realize it was actually burning my skin right away. I remember crying > but > didn't know why and my legs were hurting and throbbing so I got out the > mirror > and that is when I realized the clob had burned my skin. My burning is always > so intense that I can't even tell when I have an added pain to that area > until I > have a couple of days of where I can't stop crying. The steroid cream I am on > now has not helped with my pain at all. Dr. on has now added Testost- > erone cream which even seems irritating. The estring and estrace have > improved > my skin tissue but I still have the same symptoms that I have had from the > beginning. Maybe I will try the emu oil. I have suspected all along that my > problems are related to my previous rectal surgeries. I saw a neurologist yes- > terday and she told me that she felt my problem is nerve related and that the > nerve > or nerves probably got stretched during surgery. She ordered an MRI of my > pelvic > and back area, which I will be having done April 7th. I have always wondered > why other women on this list have found things that have helped them but > everything I have tried makes me even feel worse, it is so frustrating, > especially when there > is not break from the pain. What are your symptoms and what have you all > tried? > I guess right now I am at the point where I am becoming tired of the medical > field > and how every doctor has her or his diagnosis and say they can make me > better, > but it just has not happened. I am going to give PT a try again since I was > not > able to finish it because of my skin tissue was so fragile, but now that it > looks > better I thought I would start up again. Tracey feel free to e-mail me > privately > anytime, I do understand what you are going through. I promise I will not > complain next time (maybe a little). Take care and keep me posted. > > Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hi Seema, Thanks for your support. It's funny you should mention about getting another opinion on the biopsy results because I actually thought of doing that but would not if I had to have more biopsies done. My VV specialists here where I live feels that some doctors will go to extremes to get a diagnosis of early LS. I have always felt that my pain and burning was caused from some sort of nerve damage and now after seeing a neurologist this last week she confirmed what I have always suspected. I will be having an MRI done the beginnnig of April of the pelvic and low back area. The neurologist said I should leave the neuor stimulation surgery as a last resort since it is an invasive surgery. She recommended trying a couple of new medications similar to neurontine and also starting up PT again before considering surgery. I guess this is the route I will go for now but if I knew that the surgery would take away my burning and pain I would do it in a heart beat. Take care and thanks for your concern. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
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