Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Ok, I know there are thousands and thousands of messages to go through, but I am feeling quite overwhelmed right now and not sure where to start.. I guess I'd like to start by sharing my experience and story. I am a 28 year old who is not overweight and I live a pretty active lifestyle. My problems started when I was 21 when I began tearing during intercourse at the entrance of the vaginal canal. I didn't think much of it. I'd have sex, let it heal and repeated that vicious cycle for a long time until I quit having intercourse. I finally mentioned it at my yearly exam to my physician who thought I might need surgery to make my opening bigger and then referred me to a terrible OB/GYN. My initial treatment was Estrogen cream. However, being 21, I was not into following up. After insurance/physician changes, every now and then over the years I would ask for a prescription for Estrogen cream for the treatment and doctors would happily write for it. I'd use it temporarily and that's what the fix was.......temporary. When I was 26, I started addressing this issue full force. I went to another terrible doctor who took one look and said LS and gave me Clobetasol. I left that physician and switched to my current doctor who is wonderful. She decided to biopsy. The biopsy didn't indicate any LS but did show an over production of squamous cells. She told me to continue with the Clobetasol and I did (like I was supposed to!). I have always been instructed to use a " pea size " amount. It worked.........for a while. Now I am married and can tolerate having sex once a month at the most. I have incredible pain and am tearing all over my labia and rectal area. I'm also having fusion. At my yearly exam in August, my doctor told me to start up with the Clobetasol and Estrogen again.. I tried it for a month with no results. I made a follow up appointment and she decided that it's LS based on appearance. She instructed me to stop with the Estrogen and go full force with the Clob for 3 weeks. I've been doing so and it's not getting any better as the 3 weeks are up on Tuesday. I'm being careful with my administration as I don't want the Clob to thin my skin, but it looks as if a I was clawed by a cat right now! I requested a test for Celiacs Disease.. I recently had an aunt diagnosed with it , but of course it's negative. I've had an infertility work up and my hormone levels are all fine. I've also been diagnosed with IBS and suffered from horrible fatigue and night sweats for years. I have an appointment with an immunologist next week in hopes that maybe there's an underlying disorder of some sort (sounds awful) that will explain all of this. I read one post about " not getting caught up with names " and I feel that it's great advice! I'm trying not to, but if there's something I can eliminate in my life to get rid of this, I want to! I'm desperate at this point! I am so worried about my future and how this condition is going to effect me. I have some questions that I would like to post, if anyone can elaborate and answer some of them, that would be great! Thank you all for your time on posting this wonderful information! 1. What can I put on these tears to help them heal? A & D? 2. How do people fair during pregnancy with this? Natural childbirth? 3. I work out intensely. Does excessive sweating have anything to do with this tearing? 4. Anything I need to communicate to the doctor that I'm not already doing so? Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Wow...you have so much going on sweetie. Hang in there. First of all...my probs were slightly different than yours by I'm almost 100% now and pregnant and I will be doing a natural childbirth with a midwife. Some of the other gals might be able to give you more info, but have you looked into adding testosterone cream occasionally to your regime? It seems like most of us have our little topical over the counter creams we swear by. I've found Florasone, a homeopathic, works well for me. Coconut oil also seems to be helpful for me. Have you looked into acupuncture to maybe correct any underlying imbalance? I had good luck with acupuncture and yoga as a way to help address and re-set my system in a way Western Medicine is unable to address. Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi : How were you diagnosed with IBS? Did you see a GI doctor? Sherri -------------- Original message -------------- > Ok, I know there are thousands and thousands of messages to go > through, but I am feeling quite overwhelmed right now and not sure > where to start.. I guess I'd like to start by sharing my experience > and story. > > I am a 28 year old who is not overweight and I live a pretty active > lifestyle. My problems started when I was 21 when I began tearing > during intercourse at the entrance of the vaginal canal. I didn't > think much of it. I'd have sex, let it heal and repeated that vicious > cycle for a long time until I quit having intercourse. > > I finally mentioned it at my yearly exam to my physician who thought I > might need surgery to make my opening bigger and then referred me to a > terrible OB/GYN. My initial treatment was Estrogen cream. However, > being 21, I was not into following up. After insurance/physician > changes, every now and then over the years I would ask for a > prescription for Estrogen cream for the treatment and doctors would > happily write for it. I'd use it temporarily and that's what the fix > was.......temporary. > > When I was 26, I started addressing this issue full force. I went to > another terrible doctor who took one look and said LS and gave me > Clobetasol. I left that physician and switched to my current doctor > who is wonderful. She decided to biopsy. The biopsy didn't indicate > any LS but did show an over production of squamous cells. She told me > to continue with the Clobetasol and I did (like I was supposed to!). I > have always been instructed to use a "pea size" amount. It > worked.........for a while. > > Now I am ma rried and can tolerate having sex once a month at the most. > I have incredible pain and am tearing all over my labia and rectal > area. I'm also having fusion. At my yearly exam in August, my doctor > told me to start up with the Clobetasol and Estrogen again.. I tried > it for a month with no results. I made a follow up appointment and she > decided that it's LS based on appearance. She instructed me to stop > with the Estrogen and go full force with the Clob for 3 weeks. I've > been doing so and it's not getting any better as the 3 weeks are up on > Tuesday. I'm being careful with my administration as I don't want the > Clob to thin my skin, but it looks as if a I was clawed by a cat right > now! > > I requested a test for Celiacs Disease.. I recently had an aunt > diagnosed with it , but of course it's negative. I've had an > infertility work up and my hormone levels are all fine. I've also been > diagnosed with IBS and suffered from horrible fatigue and night sweats > for years. I have an appointment with an immunologist next week in > hopes that maybe there's an underlying disorder of some sort (sounds > awful) that will explain all of this. I read one post about "not > getting caught up with names" and I feel that it's great advice! I'm > trying not to, but if there's something I can eliminate in my life to > get rid of this, I want to! > > I'm desperate at this point! I am so worried about my future and how > this condition is going to effect me. I have some questions that I > would like to post, if anyone can elaborate and answer some of them, > that would be great! Thank you all for your time on posting this > wonderful information! > > 1. What can I put on these tears to help them heal? A & D? > > 2. How do people fair during preg nancy with this? Natural childbirth? > > 3. I work out intensely. Does excessive sweating have anything to do > with this tearing? > > 4. Anything I need to communicate to the doctor that I'm not already > doing so? > > Thanks again, > > > > ------------------------------------ > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > Thanks for your cooperation! ** > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Yes, I was diagnosed by a GI doctor... I suffered from "typical" symptoms of IBS for years. About two years ago I ended up having an infection of some sort that caused a lot of bloody diarrhea and ended up getting scoped (both ends). The only thing they found was that I had reflux. I also wonder if I may have endometriosis.. I'm a nurse, but I'm the worst advocate for myself. I hate going in there with self diagnosis , but it would be nice if someone would do a coposcopy. I've heard that a lot of my symptoms can be related to endo as well.. Especially with the GI stuff. I'm obviously scarring on the outside, why would the inside be any different? How does one go about getting accupuncture? How do I even start by finding one? Should I ask for suggestions from my physician or do this on my own? I am clueless about alternative medicine! (Pretty bad for a nurse, I know!) Subject: Re: HELP - Long post, Sorry!To: VulvarDisorders Date: Sunday, October 26, 2008, 3:49 PM Hi : How were you diagnosed with IBS? Did you see a GI doctor? Sherri ------------ -- Original message ------------ -- From: "" <twisted888 (AT) yahoo (DOT) com> > Ok, I know there are thousands and thousands of messages to go > through, but I am feeling quite overwhelmed right now and not sure > where to start.. I guess I'd like to start by sharing my experience > and story. > > I am a 28 year old who is not overweight and I live a pretty active > lifestyle. My problems started when I was 21 when I began tearing > during intercourse at the entrance of the vaginal canal. I didn't > think much of it. I'd have sex, let it heal and repeated that vicious > cycle for a long time until I quit having intercourse. > > I finally mentioned it at my yearly exam to my physician who thought I > might need surgery to make my opening bigger and then referred me to a > terrible OB/GYN. My initial treatment was Estrogen cream. However, > being 21, I was not into following up. After insurance/physician > changes, every now and then over the years I would ask for a > prescription for Estrogen cream for the treatment and doctors would > happily write for it. I'd use it temporarily and that's what the fix > was.......temporary . > > When I was 26, I started addressing this issue full force. I went to > another terrible doctor who took one look and said LS and gave me > Clobetasol. I left that physician and switched to my current doctor > who is wonderful. She decided to biopsy. The biopsy didn't indicate > any LS but did show an over production of squamous cells. She told me > to continue with the Clobetasol and I did (like I was supposed to!). I > have always been instructed to use a "pea size" amount. It > worked...... ...for a while. > > Now I am ma rried and can tolerate having sex once a month at the most. > I have incredible pain and am tearing all over my labia and rectal > area. I'm also having fusion. At my yearly exam in August, my doctor > told me to start up with the Clobetasol and Estrogen again.. I tried > it for a month with no results. I made a follow up appointment and she > decided that it's LS based on appearance. She instructed me to stop > with the Estrogen and go full force with the Clob for 3 weeks. I've > been doing so and it's not getting any better as the 3 weeks are up on > Tuesday. I'm being careful with my administration as I don't want the > Clob to thin my skin, but it looks as if a I was clawed by a cat right > now! > > I requested a test for Celiacs Disease.. I recently had an aunt > diagnosed with it , but of course it's negative. I've had an > infertility work up and my hormone levels are all fine. I've also been > diagnosed with IBS and suffered from horrible fatigue and night sweats > for years. I have an appointment with an immunologist next week in > hopes that maybe there's an underlying disorder of some sort (sounds > awful) that will explain all of this. I read one post about "not > getting caught up with names" and I feel that it's great advice! I'm > trying not to, but if there's something I can eliminate in my life to > get rid of this, I want to! > > I'm desperate at this point! I am so worried about my future and how > this condition is going to effect me. I have some questions that I > would like to post, if anyone can elaborate and answer some of them, > that would be great! Thank you all for your time on posting this > wonderful information! > > 1. What can I put on these tears to help them heal? A & D? > > 2. How do people fair during preg nancy with this? Natural childbirth? > > 3. I work out intensely. Does excessive sweating have anything to do > with this tearing? > > 4. Anything I need to communicate to the doctor that I'm not already > doing so? > > Thanks again, > > > > ------------ --------- --------- ------ > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > Thanks for your cooperation! ** > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Wow, you are one strong lady! I'm sorry you've been going through this so long without any real relief. Have you tried reading The V Book by ? There's lots of good advice and information in there from a doctor that specializes in vulvo-vaginal disorders and recurring infections, etc. Amazon link: http://www.amazon.com/Book-Doctors-Complete-Vulvovaginal-Health/dp/0553381148/ref=sr_1_1?ie=UTF8 & s=books & qid=1225058028 & sr=8-1 I don't think working out/sweating would really do anything to cause your problem except the are might get exacerbated if there's too much cloth rubbing up against it while you work out. I second Lindsey's suggestion of Acupuncture, as it's done wonders for my pain issues and helped balance my body out. You could also try looking for a dermatologist that specializes in vulvar skin disorders; the National Vulvodynia Association could probably recommend some names for you. NVA's website: http://nva.org/ Good luck and I hope this helps some. Ok, I know there are thousands and thousands of messages to go through, but I am feeling quite overwhelmed right now and not sure where to start.. I guess I'd like to start by sharing my experience and story. I am a 28 year old who is not overweight and I live a pretty active lifestyle. My problems started when I was 21 when I began tearing during intercourse at the entrance of the vaginal canal. I didn't think much of it. I'd have sex, let it heal and repeated that vicious cycle for a long time until I quit having intercourse. I finally mentioned it at my yearly exam to my physician who thought I might need surgery to make my opening bigger and then referred me to a terrible OB/GYN. My initial treatment was Estrogen cream. However, being 21, I was not into following up. After insurance/physician changes, every now and then over the years I would ask for a prescription for Estrogen cream for the treatment and doctors would happily write for it. I'd use it temporarily and that's what the fix was.......temporary. When I was 26, I started addressing this issue full force. I went to another terrible doctor who took one look and said LS and gave me Clobetasol. I left that physician and switched to my current doctor who is wonderful. She decided to biopsy. The biopsy didn't indicate any LS but did show an over production of squamous cells. She told me to continue with the Clobetasol and I did (like I was supposed to!). I have always been instructed to use a " pea size " amount. It worked.........for a while. Now I am married and can tolerate having sex once a month at the most. I have incredible pain and am tearing all over my labia and rectal area. I'm also having fusion. At my yearly exam in August, my doctor told me to start up with the Clobetasol and Estrogen again.. I tried it for a month with no results. I made a follow up appointment and she decided that it's LS based on appearance. She instructed me to stop with the Estrogen and go full force with the Clob for 3 weeks. I've been doing so and it's not getting any better as the 3 weeks are up on Tuesday. I'm being careful with my administration as I don't want the Clob to thin my skin, but it looks as if a I was clawed by a cat right now! I requested a test for Celiacs Disease.. I recently had an aunt diagnosed with it , but of course it's negative. I've had an infertility work up and my hormone levels are all fine. I've also been diagnosed with IBS and suffered from horrible fatigue and night sweats for years. I have an appointment with an immunologist next week in hopes that maybe there's an underlying disorder of some sort (sounds awful) that will explain all of this. I read one post about " not getting caught up with names " and I feel that it's great advice! I'm trying not to, but if there's something I can eliminate in my life to get rid of this, I want to! I'm desperate at this point! I am so worried about my future and how this condition is going to effect me. I have some questions that I would like to post, if anyone can elaborate and answer some of them, that would be great! Thank you all for your time on posting this wonderful information! 1. What can I put on these tears to help them heal? A & D? 2. How do people fair during pregnancy with this? Natural childbirth? 3. I work out intensely. Does excessive sweating have anything to do with this tearing? 4. Anything I need to communicate to the doctor that I'm not already doing so? Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Thank you everyone for your support and responses! I think I am going to give accupuncture I try. Should I have my doctor refer me to one? I'm thinking I will have to have a doctor refer me to get this covered by insurance. Also, is paying the $50 for the NVA worth it? I live in Michigan too. I hear there is a doctor named Hope.....? that works at the University of Michigan. Is it worth trying to go and see her? Apparently she is the vulva queen.. My current doctor is just very apologetic and said that clobetasol was the strongest thing she could do for me at this time. She also said that she has LS, so I know she's understanding to what's going on. > > Ok, I know there are thousands and thousands of messages to go > through, but I am feeling quite overwhelmed right now and not sure > where to start.. I guess I'd like to start by sharing my experience > and story. > > I am a 28 year old who is not overweight and I live a pretty active > lifestyle. My problems started when I was 21 when I began tearing > during intercourse at the entrance of the vaginal canal. I didn't > think much of it. I'd have sex, let it heal and repeated that vicious > cycle for a long time until I quit having intercourse. > > I finally mentioned it at my yearly exam to my physician who thought I > might need surgery to make my opening bigger and then referred me to a > terrible OB/GYN. My initial treatment was Estrogen cream. However, > being 21, I was not into following up. After insurance/physician > changes, every now and then over the years I would ask for a > prescription for Estrogen cream for the treatment and doctors would > happily write for it. I'd use it temporarily and that's what the fix > was.......temporary. > > When I was 26, I started addressing this issue full force. I went to > another terrible doctor who took one look and said LS and gave me > Clobetasol. I left that physician and switched to my current doctor > who is wonderful. She decided to biopsy. The biopsy didn't indicate > any LS but did show an over production of squamous cells. She told me > to continue with the Clobetasol and I did (like I was supposed to!). I > have always been instructed to use a " pea size " amount. It > worked.........for a while. > > Now I am married and can tolerate having sex once a month at the most. > I have incredible pain and am tearing all over my labia and rectal > area. I'm also having fusion. At my yearly exam in August, my doctor > told me to start up with the Clobetasol and Estrogen again.. I tried > it for a month with no results. I made a follow up appointment and she > decided that it's LS based on appearance. She instructed me to stop > with the Estrogen and go full force with the Clob for 3 weeks. I've > been doing so and it's not getting any better as the 3 weeks are up on > Tuesday. I'm being careful with my administration as I don't want the > Clob to thin my skin, but it looks as if a I was clawed by a cat right > now! > > I requested a test for Celiacs Disease.. I recently had an aunt > diagnosed with it , but of course it's negative. I've had an > infertility work up and my hormone levels are all fine. I've also been > diagnosed with IBS and suffered from horrible fatigue and night sweats > for years. I have an appointment with an immunologist next week in > hopes that maybe there's an underlying disorder of some sort (sounds > awful) that will explain all of this. I read one post about " not > getting caught up with names " and I feel that it's great advice! I'm > trying not to, but if there's something I can eliminate in my life to > get rid of this, I want to! > > I'm desperate at this point! I am so worried about my future and how > this condition is going to effect me. I have some questions that I > would like to post, if anyone can elaborate and answer some of them, > that would be great! Thank you all for your time on posting this > wonderful information! > > 1. What can I put on these tears to help them heal? A & D? > > 2. How do people fair during pregnancy with this? Natural childbirth? > > 3. I work out intensely. Does excessive sweating have anything to do > with this tearing? > > 4. Anything I need to communicate to the doctor that I'm not already > doing so? > > Thanks again, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi Alice, I just thought I would mention that I have endometriosis with GI symptoms (diagnosed and treated in the pelvic cavity, and suspected in the bowel--though I have rectal bleeding with each period, nothing was found by laparoscopy or colonoscopy/endoscopy...very frustrating). Just to support your " following up " (I know it's hard). I, for one, am getting acupuncture at a local, sliding scale clinic, but I live in the Bay Area where complementary health options are plentiful. I hope you find a practitioner that works for you! Best wishes, " Glomer " > From: Shopper56@... > Subject: Re: HELP - Long post, Sorry! > To: VulvarDisorders > Date: Sunday, October 26, 2008, 3:49 PM > > > > > > > > > > > > > Hi : >  > How were you diagnosed with IBS? Did you see a GI doctor? >  > Sherri >  > ------------ -- Original message ------------ -- > From: " " > > > Ok, I know there are thousands and thousands of messages to go > > through, but I am feeling quite overwhelmed right now and not sure > > where to start.. I guess I'd like to start by sharing my experience > > and story. > > > > I am a 28 year old who is not overweight and I live a pretty active > > lifestyle. My problems started when I was 21 when I began tearing > > during intercourse at the entrance of the vaginal canal. I didn't > > think much of it. I'd have sex, let it heal and repeated that vicious > > cycle for a long time until I quit having intercourse. > > > > I finally mentioned it at my yearly exam to my physician who thought I > > might need surgery to make my opening bigger and then referred me to a > > terrible > OB/GYN. My initial treatment was Estrogen cream. However, > > being 21, I was not into following up. After insurance/physician > > changes, every now and then over the years I would ask for a > > prescription for Estrogen cream for the treatment and doctors would > > happily write for it. I'd use it temporarily and that's what the fix > > was.......temporary . > > > > When I was 26, I started addressing this issue full force. I went to > > another terrible doctor who took one look and said LS and gave me > > Clobetasol. I left that physician and switched to my current doctor > > who is wonderful. She decided to biopsy. The biopsy didn't indicate > > any LS but did show an over production of squamous cells. She told me > > to continue with the Clobetasol and I did (like I was supposed to!). I > > have always been instructed to use a " pea size " amount. It > > worked...... ...for a while. > > > > Now I am ma > rried and can tolerate having sex once a month at the most. > > I have incredible pain and am tearing all over my labia and rectal > > area. I'm also having fusion. At my yearly exam in August, my doctor > > told me to start up with the Clobetasol and Estrogen again.. I tried > > it for a month with no results. I made a follow up appointment and she > > decided that it's LS based on appearance. She instructed me to stop > > with the Estrogen and go full force with the Clob for 3 weeks. I've > > been doing so and it's not getting any better as the 3 weeks are up on > > Tuesday. I'm being careful with my administration as I don't want the > > Clob to thin my skin, but it looks as if a I was clawed by a cat right > > now! > > > > I requested a test for Celiacs Disease.. I recently had an aunt > > diagnosed with it , but of course it's negative. I've had an > > infertility work up and my hormone levels are all fine. > I've also been > > diagnosed with IBS and suffered from horrible fatigue and night sweats > > for years. I have an appointment with an immunologist next week in > > hopes that maybe there's an underlying disorder of some sort (sounds > > awful) that will explain all of this. I read one post about " not > > getting caught up with names " and I feel that it's great advice! I'm > > trying not to, but if there's something I can eliminate in my life to > > get rid of this, I want to! > > > > I'm desperate at this point! I am so worried about my future and how > > this condition is going to effect me. I have some questions that I > > would like to post, if anyone can elaborate and answer some of them, > > that would be great! Thank you all for your time on posting this > > wonderful information! > > > > 1. What can I put on these tears to help them heal? A & D? > > > > 2. How do people fair during preg > nancy with this? Natural childbirth? > > > > 3. I work out intensely. Does excessive sweating have anything to do > > with this tearing? > > > > 4. Anything I need to communicate to the doctor that I'm not already > > doing so? > > > > Thanks again, > > > > > > > > ------------ --------- --------- ------ > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > > Thanks for your cooperation! ** > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi , Sorry for all your pain. You said: > " I requested a test for Celiacs Disease.. I recently had an aunt > diagnosed with it , but of course it's negative. " I am curious about why you said " of course it's negative " . Gluten sensitivity is really very hereditary. If you were tested by blood test you should know that the only positive tests are end stage Celiac. Anything up to that point isn't diagnosed and will be considered negative. Stool tests are the only accurate tests for this and the best are at Enterolab.com and can be done by mail. If you had another test I would suggest that you not accept that diagnosis of negative and test again. Hang in. You sound just like I was before my gluten sensitive diagnosis. Arline Arline > Ok, I know there are thousands and thousands of messages to > go > through, but I am feeling quite overwhelmed right now and > not sure > where to start.. I guess I'd like to start by sharing > my experience > and story. > > I am a 28 year old who is not overweight and I live a > pretty active > lifestyle. My problems started when I was 21 when I began > tearing > during intercourse at the entrance of the vaginal canal. I > didn't > think much of it. I'd have sex, let it heal and > repeated that vicious > cycle for a long time until I quit having intercourse. > > I finally mentioned it at my yearly exam to my physician > who thought I > might need surgery to make my opening bigger and then > referred me to a > terrible OB/GYN. My initial treatment was Estrogen cream. > However, > being 21, I was not into following up. After > insurance/physician > changes, every now and then over the years I would ask for > a > prescription for Estrogen cream for the treatment and > doctors would > happily write for it. I'd use it temporarily and > that's what the fix > was.......temporary. > > When I was 26, I started addressing this issue full force. > I went to > another terrible doctor who took one look and said LS and > gave me > Clobetasol. I left that physician and switched to my > current doctor > who is wonderful. She decided to biopsy. The biopsy > didn't indicate > any LS but did show an over production of squamous cells. > She told me > to continue with the Clobetasol and I did (like I was > supposed to!). I > have always been instructed to use a " pea size " > amount. It > worked.........for a while. > > Now I am married and can tolerate having sex once a month > at the most. > I have incredible pain and am tearing all over my labia and > rectal > area. I'm also having fusion. At my yearly exam in > August, my doctor > told me to start up with the Clobetasol and Estrogen > again.. I tried > it for a month with no results. I made a follow up > appointment and she > decided that it's LS based on appearance. She > instructed me to stop > with the Estrogen and go full force with the Clob for 3 > weeks. I've > been doing so and it's not getting any better as the 3 > weeks are up on > Tuesday. I'm being careful with my administration as I > don't want the > Clob to thin my skin, but it looks as if a I was clawed by > a cat right > now! > > I requested a test for Celiacs Disease.. I recently had an > aunt > diagnosed with it , but of course it's negative. > I've had an > infertility work up and my hormone levels are all fine. > I've also been > diagnosed with IBS and suffered from horrible fatigue and > night sweats > for years. I have an appointment with an immunologist next > week in > hopes that maybe there's an underlying disorder of some > sort (sounds > awful) that will explain all of this. I read one post about > " not > getting caught up with names " and I feel that it's > great advice! I'm > trying not to, but if there's something I can eliminate > in my life to > get rid of this, I want to! > > I'm desperate at this point! I am so worried about my > future and how > this condition is going to effect me. I have some questions > that I > would like to post, if anyone can elaborate and answer some > of them, > that would be great! Thank you all for your time on posting > this > wonderful information! > > 1. What can I put on these tears to help them heal? A & > D? > > 2. How do people fair during pregnancy with this? Natural > childbirth? > > 3. I work out intensely. Does excessive sweating have > anything to do > with this tearing? > > 4. Anything I need to communicate to the doctor that > I'm not already > doing so? > > Thanks again, > > > > ------------------------------------ > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > Thanks for your cooperation! ** > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 , Wow. I had to respond to you. I just feel for you so much, so many of us have been in that frustrating place, feeling like the doctors are no help and every lead feels like a dead end. Add to that the stress of having this at such a young age...I am 27 and have had lichen planus (closely related to Lichen schlerosis but more rare and difficult to treat) since I was 22, so I get that part of it. FIRST, get back on the estrogen. It is fine to use along with the clobetasol (although I would do at separate times - ie one in the AM, one in the PM). Clobetasol should be used daily only for a short time and then tapered back to a maintenance schedule (ie once a week or as needed). Estrogen is the only thing that will maintain the elasticity of the skin and preven tearing. You need both. And maybe more than that, but you've got a good start. If you are fusing, you may need testosterone and/or a different steroid, or other changes. Are you part of the lichen sclerosis group?? They have TONS of amazing information and that is the best recommendation I can give you! By the way, false negatives for LS biopsies are very common. IE - many who have the disease have a negative biopsy. Lots of vulvar specialists don't even do a biopsy for that reason and diagnose based on symptoms. And as far as the Celiac - you can be gluten intolerant and not have full blown celiac disease. It does run in families. I have gluten intolerance and my LP got much better going gluten-free - not all better, but an improvement for sure (and my overall health got much better too!). I HIGHLY recommend going gluten-free. If you want proof, order the home test from www.enterolab.com - very reliable and not too expensive. This would explain your IBS and fatigue as well. Even a trial of gluten free diet could help you feel better. It is the culprit behind ALOT of IBS and fatigue. So, as far as your specific questions (and again, join the LS group - they have tons of answers to this in their files): 1. You can use diaper ointment on tears - just depends on what feels comfy to you. I like to use Burt's Bees diaper cream, or emu oil - a natural anti-inflammatory oil that works wonders for these conditions (www.laidinmt.com is one good company). But estrogen is the best thing for long term healing (as opposed to short term relief from diaper ointment). 2. I just had a baby 6 weeks ago, natural childbirth. If you are prepared, it's fine - but depends on the person of course. I used a tiny bit of estrogen throughout pregnancy - perfectly safe. I prepared for the birth by doing perineal massage. I tore but not as badly as some other women do. I recommend hypnobirthing for learning relaxation and massage techniques to avoid tearing. Totally worth it! =) 3. Sweating can aggravate tearing you have already, but not cause it. Some people put on a barrier product (ie diaper ointment) before working out to keep the sweat out of the tears. If you are doing bike- type activities, that can be really bad for it. 4. You may need to find a different doctor - some of us have to go to so many before finding the right one. LS group has a great directory that would help with that. Email me if you have more questions. Melinda=) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 I don't think you need an MD referral for acupuncture unless your insurance mandate it. I would ask around for a referral from your friends/family or look online. Also make sure they're a true acupuncturist with a degree in Oriental medicine, not some foolio with the 40 hour class. You have to become your own best advocate and expert. Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 I said " of course it was negative " because I am so tired of having all these crazy symptoms checked out and it being nothing.. Not that I want something wrong with me, but any answer at this point would be a miracle. My brother and sister both suffer from severe food allergies. My brother was on a restricted diet for years and suffered from severe eczema. I had allergy testing 10 years ago (I would've been 18) and all I can remember is that milk was my highest food allergy.. Since I don't have any GI upset or problems that I can link directly to it, I've never avoided it. I meet with an immunologist/allergist next week. I hear he's excellent so hopefully he can link this with something. > > Hi , > > Sorry for all your pain. > > You said: > > > " I requested a test for Celiacs Disease.. I recently had an aunt > > diagnosed with it , but of course it's negative. " > > I am curious about why you said " of course it's negative " . > > Gluten sensitivity is really very hereditary. If you were tested by blood test you should know that the only positive tests are end stage Celiac. Anything up to that point isn't diagnosed and will be considered negative. Stool tests are the only accurate tests for this and the best are at Enterolab.com and can be done by mail. If you had another test I would suggest that you not accept that diagnosis of negative and test again. > > Hang in. You sound just like I was before my gluten sensitive diagnosis. > > Arline > > Arline > > > > > > Ok, I know there are thousands and thousands of messages to > > go > > through, but I am feeling quite overwhelmed right now and > > not sure > > where to start.. I guess I'd like to start by sharing > > my experience > > and story. > > > > I am a 28 year old who is not overweight and I live a > > pretty active > > lifestyle. My problems started when I was 21 when I began > > tearing > > during intercourse at the entrance of the vaginal canal. I > > didn't > > think much of it. I'd have sex, let it heal and > > repeated that vicious > > cycle for a long time until I quit having intercourse. > > > > I finally mentioned it at my yearly exam to my physician > > who thought I > > might need surgery to make my opening bigger and then > > referred me to a > > terrible OB/GYN. My initial treatment was Estrogen cream. > > However, > > being 21, I was not into following up. After > > insurance/physician > > changes, every now and then over the years I would ask for > > a > > prescription for Estrogen cream for the treatment and > > doctors would > > happily write for it. I'd use it temporarily and > > that's what the fix > > was.......temporary. > > > > When I was 26, I started addressing this issue full force. > > I went to > > another terrible doctor who took one look and said LS and > > gave me > > Clobetasol. I left that physician and switched to my > > current doctor > > who is wonderful. She decided to biopsy. The biopsy > > didn't indicate > > any LS but did show an over production of squamous cells. > > She told me > > to continue with the Clobetasol and I did (like I was > > supposed to!). I > > have always been instructed to use a " pea size " > > amount. It > > worked.........for a while. > > > > Now I am married and can tolerate having sex once a month > > at the most. > > I have incredible pain and am tearing all over my labia and > > rectal > > area. I'm also having fusion. At my yearly exam in > > August, my doctor > > told me to start up with the Clobetasol and Estrogen > > again.. I tried > > it for a month with no results. I made a follow up > > appointment and she > > decided that it's LS based on appearance. She > > instructed me to stop > > with the Estrogen and go full force with the Clob for 3 > > weeks. I've > > been doing so and it's not getting any better as the 3 > > weeks are up on > > Tuesday. I'm being careful with my administration as I > > don't want the > > Clob to thin my skin, but it looks as if a I was clawed by > > a cat right > > now! > > > > I requested a test for Celiacs Disease.. I recently had an > > aunt > > diagnosed with it , but of course it's negative. > > I've had an > > infertility work up and my hormone levels are all fine. > > I've also been > > diagnosed with IBS and suffered from horrible fatigue and > > night sweats > > for years. I have an appointment with an immunologist next > > week in > > hopes that maybe there's an underlying disorder of some > > sort (sounds > > awful) that will explain all of this. I read one post about > > " not > > getting caught up with names " and I feel that it's > > great advice! I'm > > trying not to, but if there's something I can eliminate > > in my life to > > get rid of this, I want to! > > > > I'm desperate at this point! I am so worried about my > > future and how > > this condition is going to effect me. I have some questions > > that I > > would like to post, if anyone can elaborate and answer some > > of them, > > that would be great! Thank you all for your time on posting > > this > > wonderful information! > > > > 1. What can I put on these tears to help them heal? A & > > D? > > > > 2. How do people fair during pregnancy with this? Natural > > childbirth? > > > > 3. I work out intensely. Does excessive sweating have > > anything to do > > with this tearing? > > > > 4. Anything I need to communicate to the doctor that > > I'm not already > > doing so? > > > > Thanks again, > > > > > > > > ------------------------------------ > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > > Thanks for your cooperation! ** > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Thanks for the word of encouragement. Would you reccommend starting back on the estrogen cream now? I called my physicians office today and informed that I was worse after the 3 weeks with Clobetasol. They told me to stop it completely and wait to see what the immunologist says. How much Estrogen should be used? I don't want to over do it at all. Thanks again, > > , > Wow. I had to respond to you. I just feel for you so much, so many of > us have been in that frustrating place, feeling like the doctors are > no help and every lead feels like a dead end. Add to that the stress > of having this at such a young age...I am 27 and have had lichen > planus (closely related to Lichen schlerosis but more rare and > difficult to treat) since I was 22, so I get that part of it. > > FIRST, get back on the estrogen. It is fine to use along with the > clobetasol (although I would do at separate times - ie one in the AM, > one in the PM). Clobetasol should be used daily only for a short time > and then tapered back to a maintenance schedule (ie once a week or as > needed). Estrogen is the only thing that will maintain the elasticity > of the skin and preven tearing. You need both. And maybe more than > that, but you've got a good start. If you are fusing, you may need > testosterone and/or a different steroid, or other changes. Are you > part of the lichen sclerosis group?? They have TONS of amazing > information and that is the best recommendation I can give you! > > By the way, false negatives for LS biopsies are very common. IE - > many who have the disease have a negative biopsy. Lots of vulvar > specialists don't even do a biopsy for that reason and diagnose based > on symptoms. > > And as far as the Celiac - you can be gluten intolerant and not have > full blown celiac disease. It does run in families. I have gluten > intolerance and my LP got much better going gluten-free - not all > better, but an improvement for sure (and my overall health got much > better too!). I HIGHLY recommend going gluten-free. If you want > proof, order the home test from www.enterolab.com - very reliable and > not too expensive. This would explain your IBS and fatigue as well. > Even a trial of gluten free diet could help you feel better. It is > the culprit behind ALOT of IBS and fatigue. > > So, as far as your specific questions (and again, join the LS group - > they have tons of answers to this in their files): > 1. You can use diaper ointment on tears - just depends on what feels > comfy to you. I like to use Burt's Bees diaper cream, or emu oil - a > natural anti-inflammatory oil that works wonders for these conditions > (www.laidinmt.com is one good company). But estrogen is the best > thing for long term healing (as opposed to short term relief from > diaper ointment). > > 2. I just had a baby 6 weeks ago, natural childbirth. If you are > prepared, it's fine - but depends on the person of course. I used a > tiny bit of estrogen throughout pregnancy - perfectly safe. I > prepared for the birth by doing perineal massage. I tore but not as > badly as some other women do. I recommend hypnobirthing for learning > relaxation and massage techniques to avoid tearing. Totally worth it! > =) > > 3. Sweating can aggravate tearing you have already, but not cause it. > Some people put on a barrier product (ie diaper ointment) before > working out to keep the sweat out of the tears. If you are doing bike- > type activities, that can be really bad for it. > > 4. You may need to find a different doctor - some of us have to go to > so many before finding the right one. LS group has a great directory > that would help with that. > > Email me if you have more questions. > Melinda=) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Well, my latest endometerosis symptom is having vaginal bleeding during bowel movements (mid-cycle) (sorry if that's too graphic!). This is all so crazy!! I'm started to worry that my physician is going to think I'm nuts.. All these random symptoms, and nothing ever points to a specific disorder. > > From: Shopper56@ > > Subject: Re: HELP - Long post, Sorry! > > To: VulvarDisorders > > Date: Sunday, October 26, 2008, 3:49 PM > > > > > > > > > > > > > > > > > > > > > > > > > > Hi : > >  > > How were you diagnosed with IBS? Did you see a GI doctor? > >  > > Sherri > >  > > ------------ -- Original message ------------ -- > > From: " " > > > > > Ok, I know there are thousands and thousands of messages to go > > > through, but I am feeling quite overwhelmed right now and not sure > > > where to start.. I guess I'd like to start by sharing my experience > > > and story. > > > > > > I am a 28 year old who is not overweight and I live a pretty active > > > lifestyle. My problems started when I was 21 when I began tearing > > > during intercourse at the entrance of the vaginal canal. I didn't > > > think much of it. I'd have sex, let it heal and repeated that vicious > > > cycle for a long time until I quit having intercourse. > > > > > > I finally mentioned it at my yearly exam to my physician who thought I > > > might need surgery to make my opening bigger and then referred me to a > > > terrible > > OB/GYN. My initial treatment was Estrogen cream. However, > > > being 21, I was not into following up. After insurance/physician > > > changes, every now and then over the years I would ask for a > > > prescription for Estrogen cream for the treatment and doctors would > > > happily write for it. I'd use it temporarily and that's what the fix > > > was.......temporary . > > > > > > When I was 26, I started addressing this issue full force. I went to > > > another terrible doctor who took one look and said LS and gave me > > > Clobetasol. I left that physician and switched to my current doctor > > > who is wonderful. She decided to biopsy. The biopsy didn't indicate > > > any LS but did show an over production of squamous cells. She told me > > > to continue with the Clobetasol and I did (like I was supposed to!). I > > > have always been instructed to use a " pea size " amount. It > > > worked...... ...for a while. > > > > > > Now I am ma > > rried and can tolerate having sex once a month at the most. > > > I have incredible pain and am tearing all over my labia and rectal > > > area. I'm also having fusion. At my yearly exam in August, my doctor > > > told me to start up with the Clobetasol and Estrogen again.. I tried > > > it for a month with no results. I made a follow up appointment and she > > > decided that it's LS based on appearance. She instructed me to stop > > > with the Estrogen and go full force with the Clob for 3 weeks. I've > > > been doing so and it's not getting any better as the 3 weeks are up on > > > Tuesday. I'm being careful with my administration as I don't want the > > > Clob to thin my skin, but it looks as if a I was clawed by a cat right > > > now! > > > > > > I requested a test for Celiacs Disease.. I recently had an aunt > > > diagnosed with it , but of course it's negative. I've had an > > > infertility work up and my hormone levels are all fine. > > I've also been > > > diagnosed with IBS and suffered from horrible fatigue and night sweats > > > for years. I have an appointment with an immunologist next week in > > > hopes that maybe there's an underlying disorder of some sort (sounds > > > awful) that will explain all of this. I read one post about " not > > > getting caught up with names " and I feel that it's great advice! I'm > > > trying not to, but if there's something I can eliminate in my life to > > > get rid of this, I want to! > > > > > > I'm desperate at this point! I am so worried about my future and how > > > this condition is going to effect me. I have some questions that I > > > would like to post, if anyone can elaborate and answer some of them, > > > that would be great! Thank you all for your time on posting this > > > wonderful information! > > > > > > 1. What can I put on these tears to help them heal? A & D? > > > > > > 2. How do people fair during preg > > nancy with this? Natural childbirth? > > > > > > 3. I work out intensely. Does excessive sweating have anything to do > > > with this tearing? > > > > > > 4. Anything I need to communicate to the doctor that I'm not already > > > doing so? > > > > > > Thanks again, > > > > > > > > > > > > ------------ --------- --------- ------ > > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > > > Thanks for your cooperation! ** > > > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 Hi (sorry, I think I called you Alice before!), If it's any help, many doctors and the Endometriosis Association are now regarding endometriosis as a multisystem disease with a whole constellation of symptoms (pelvic pain, menstrual irregularities, IBS/crohn's disease, vulvodynia, intersitital cystitis, candida, allergies, gluten intolerance, lyme disease...). My specialist treats all of these as related signs of systemic inflammation and immune dysfunction, and oftentimes, addressing one symptom helps to relieve another. You might want to try to find a naturopath or integrative physician, along with your gynecologist, for this kind of holistic approach. Good luck, Glomer > > > From: Shopper56@ > > > Subject: Re: HELP - Long post, Sorry! > > > To: VulvarDisorders > > > Date: Sunday, October 26, 2008, 3:49 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi : > > >  > > > How were you diagnosed with IBS? Did you see a GI doctor? > > >  > > > Sherri > > >  > > > ------------ -- Original message ------------ -- > > > From: " " > > > > > > > Ok, I know there are thousands and thousands of messages to go > > > > through, but I am feeling quite overwhelmed right now and not sure > > > > where to start.. I guess I'd like to start by sharing my experience > > > > and story. > > > > > > > > I am a 28 year old who is not overweight and I live a pretty active > > > > lifestyle. My problems started when I was 21 when I began tearing > > > > during intercourse at the entrance of the vaginal canal. I didn't > > > > think much of it. I'd have sex, let it heal and repeated that > vicious > > > > cycle for a long time until I quit having intercourse. > > > > > > > > I finally mentioned it at my yearly exam to my physician who > thought I > > > > might need surgery to make my opening bigger and then referred > me to a > > > > terrible > > > OB/GYN. My initial treatment was Estrogen cream. However, > > > > being 21, I was not into following up. After insurance/physician > > > > changes, every now and then over the years I would ask for a > > > > prescription for Estrogen cream for the treatment and doctors would > > > > happily write for it. I'd use it temporarily and that's what the > fix > > > > was.......temporary . > > > > > > > > When I was 26, I started addressing this issue full force. I > went to > > > > another terrible doctor who took one look and said LS and gave me > > > > Clobetasol. I left that physician and switched to my current doctor > > > > who is wonderful. She decided to biopsy. The biopsy didn't indicate > > > > any LS but did show an over production of squamous cells. She > told me > > > > to continue with the Clobetasol and I did (like I was supposed > to!). I > > > > have always been instructed to use a " pea size " amount. It > > > > worked...... ...for a while. > > > > > > > > Now I am ma > > > rried and can tolerate having sex once a month at the most. > > > > I have incredible pain and am tearing all over my labia and rectal > > > > area. I'm also having fusion. At my yearly exam in August, my > doctor > > > > told me to start up with the Clobetasol and Estrogen again.. I > tried > > > > it for a month with no results. I made a follow up appointment > and she > > > > decided that it's LS based on appearance. She instructed me to stop > > > > with the Estrogen and go full force with the Clob for 3 weeks. I've > > > > been doing so and it's not getting any better as the 3 weeks are > up on > > > > Tuesday. I'm being careful with my administration as I don't > want the > > > > Clob to thin my skin, but it looks as if a I was clawed by a cat > right > > > > now! > > > > > > > > I requested a test for Celiacs Disease.. I recently had an aunt > > > > diagnosed with it , but of course it's negative. I've had an > > > > infertility work up and my hormone levels are all fine. > > > I've also been > > > > diagnosed with IBS and suffered from horrible fatigue and night > sweats > > > > for years. I have an appointment with an immunologist next week in > > > > hopes that maybe there's an underlying disorder of some sort > (sounds > > > > awful) that will explain all of this. I read one post about " not > > > > getting caught up with names " and I feel that it's great advice! > I'm > > > > trying not to, but if there's something I can eliminate in my > life to > > > > get rid of this, I want to! > > > > > > > > I'm desperate at this point! I am so worried about my future and > how > > > > this condition is going to effect me. I have some questions that I > > > > would like to post, if anyone can elaborate and answer some of > them, > > > > that would be great! Thank you all for your time on posting this > > > > wonderful information! > > > > > > > > 1. What can I put on these tears to help them heal? A & D? > > > > > > > > 2. How do people fair during preg > > > nancy with this? Natural childbirth? > > > > > > > > 3. I work out intensely. Does excessive sweating have anything > to do > > > > with this tearing? > > > > > > > > 4. Anything I need to communicate to the doctor that I'm not > already > > > > doing so? > > > > > > > > Thanks again, > > > > > > > > > > > > > > > > ------------ --------- --------- ------ > > > > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > > > > Thanks for your cooperation! ** > > > > > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 , Gluten sensitivity is a serious autoimmune systemic disease that the medical system mostly is incapable of diagnosing properly. (my opinion along with millions of others based on experience and gaining credibility). All these " crazy symptoms " and the inability of the docs to diagnose it is another symptom of gluten sensitivity. The miracle you are looking for is likely at Enterolab for about a hundred and twenty bucks. It sounds impossible that gluten (and dairy products most often because they cross react with each other apparently) can be the cause of endometriosis, night sweats, eczema, (likely dermatitis herpetifornis), bleeding from the rectum and in the intestines, killer fatique, body aches and pains (fibromyalgia), and any number of autoimmune diseases-- but it is and does, it appears. Your appointment with whatever doc you choose is still at the mercy of inaccurate blood tests. Allergists are hopeless for this. They tests for allergies and not autoimmune reactions that really destroy the body--like IgA. The doc at Enterolab has spend a couple decades devoted to research on this. He is a gastroenterologist, and internist, a researcher, has published, suffers from this problem as does his daughter which as I understand it is what motivated him to find an accurate way to diagnose this. He has done so much more than anybody in this country for this problem. I spent most of my life trying to figure out what was wrong with me with many of your symptoms. I was only able to find out through Enterolab where they understand the problem and can diagnose it. They merely test for the same things as the blood tests do but they use the serum in the stool instead of the blood serum. It is the intestines where the autoimmune reaction originates and where they can find the antibodies more efficiently. Keep looking and I wish you well. Arline > > Subject: Re: HELP - Long post, Sorry! > To: VulvarDisorders > Date: Monday, October 27, 2008, 7:38 PM > I said " of course it was negative " because I am so > tired of having all > these crazy symptoms checked out and it being nothing.. Not > that I > want something wrong with me, but any answer at this point > would be a > miracle. > > My brother and sister both suffer from severe food > allergies. My > brother was on a restricted diet for years and suffered > from severe > eczema. I had allergy testing 10 years ago (I would've > been 18) and > all I can remember is that milk was my highest food > allergy.. Since I > don't have any GI upset or problems that I can link > directly to it, > I've never avoided it. > > I meet with an immunologist/allergist next week. I hear > he's excellent > so hopefully he can link this with something. > > > > > > Hi , > > > > Sorry for all your pain. > > > > You said: > > > > > " I requested a test for Celiacs Disease.. I > recently had an aunt > > > diagnosed with it , but of course it's > negative. " > > > > I am curious about why you said " of course > it's negative " . > > > > Gluten sensitivity is really very hereditary. If you > were tested by > blood test you should know that the only positive tests are > end stage > Celiac. Anything up to that point isn't diagnosed and > will be > considered negative. Stool tests are the only accurate > tests for this > and the best are at Enterolab.com and can be done by mail. > If you had > another test I would suggest that you not accept that > diagnosis of > negative and test again. > > > > Hang in. You sound just like I was before my gluten > sensitive diagnosis. > > > > Arline > > > > Arline > > > > > > > > > > > Ok, I know there are thousands and thousands of > messages to > > > go > > > through, but I am feeling quite overwhelmed right > now and > > > not sure > > > where to start.. I guess I'd like to start by > sharing > > > my experience > > > and story. > > > > > > I am a 28 year old who is not overweight and I > live a > > > pretty active > > > lifestyle. My problems started when I was 21 when > I began > > > tearing > > > during intercourse at the entrance of the vaginal > canal. I > > > didn't > > > think much of it. I'd have sex, let it heal > and > > > repeated that vicious > > > cycle for a long time until I quit having > intercourse. > > > > > > I finally mentioned it at my yearly exam to my > physician > > > who thought I > > > might need surgery to make my opening bigger and > then > > > referred me to a > > > terrible OB/GYN. My initial treatment was > Estrogen cream. > > > However, > > > being 21, I was not into following up. After > > > insurance/physician > > > changes, every now and then over the years I > would ask for > > > a > > > prescription for Estrogen cream for the treatment > and > > > doctors would > > > happily write for it. I'd use it temporarily > and > > > that's what the fix > > > was.......temporary. > > > > > > When I was 26, I started addressing this issue > full force. > > > I went to > > > another terrible doctor who took one look and > said LS and > > > gave me > > > Clobetasol. I left that physician and switched to > my > > > current doctor > > > who is wonderful. She decided to biopsy. The > biopsy > > > didn't indicate > > > any LS but did show an over production of > squamous cells. > > > She told me > > > to continue with the Clobetasol and I did (like I > was > > > supposed to!). I > > > have always been instructed to use a " pea > size " > > > amount. It > > > worked.........for a while. > > > > > > Now I am married and can tolerate having sex once > a month > > > at the most. > > > I have incredible pain and am tearing all over my > labia and > > > rectal > > > area. I'm also having fusion. At my yearly > exam in > > > August, my doctor > > > told me to start up with the Clobetasol and > Estrogen > > > again.. I tried > > > it for a month with no results. I made a follow > up > > > appointment and she > > > decided that it's LS based on appearance. She > > > instructed me to stop > > > with the Estrogen and go full force with the Clob > for 3 > > > weeks. I've > > > been doing so and it's not getting any better > as the 3 > > > weeks are up on > > > Tuesday. I'm being careful with my > administration as I > > > don't want the > > > Clob to thin my skin, but it looks as if a I was > clawed by > > > a cat right > > > now! > > > > > > I requested a test for Celiacs Disease.. I > recently had an > > > aunt > > > diagnosed with it , but of course it's > negative. > > > I've had an > > > infertility work up and my hormone levels are all > fine. > > > I've also been > > > diagnosed with IBS and suffered from horrible > fatigue and > > > night sweats > > > for years. I have an appointment with an > immunologist next > > > week in > > > hopes that maybe there's an underlying > disorder of some > > > sort (sounds > > > awful) that will explain all of this. I read one > post about > > > " not > > > getting caught up with names " and I feel > that it's > > > great advice! I'm > > > trying not to, but if there's something I can > eliminate > > > in my life to > > > get rid of this, I want to! > > > > > > I'm desperate at this point! I am so worried > about my > > > future and how > > > this condition is going to effect me. I have some > questions > > > that I > > > would like to post, if anyone can elaborate and > answer some > > > of them, > > > that would be great! Thank you all for your time > on posting > > > this > > > wonderful information! > > > > > > 1. What can I put on these tears to help them > heal? A & > > > D? > > > > > > 2. How do people fair during pregnancy with this? > Natural > > > childbirth? > > > > > > 3. I work out intensely. Does excessive sweating > have > > > anything to do > > > with this tearing? > > > > > > 4. Anything I need to communicate to the doctor > that > > > I'm not already > > > doing so? > > > > > > Thanks again, > > > > > > > > > > > > ------------------------------------ > > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE > ORIGINAL POST, > > > Thanks for your cooperation! ** > > > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Arline, Thanks for the load of information! The allergist/immunologist I'm seeing specializes more in the autoimmune side of things. I've heard he's diagnosed some amazing things.. I keep having nightmares that he won't be able to help me and he'll ask me what I'm doing there. If he's no additional help, I will definitely look into ordering a test from Enterolab. What are the next steps after taking one of their tests? Also, is it possible to get those tests covered by insurance? I'm sure I could submit it to my flex account. I'm so glad I started participating in this group. I joined months ago, but never really looked at anything. For the first time in a long time, I don't feel insane! > > > > > > Hi , > > > > > > Sorry for all your pain. > > > > > > You said: > > > > > > > " I requested a test for Celiacs Disease.. I > > recently had an aunt > > > > diagnosed with it , but of course it's > > negative. " > > > > > > I am curious about why you said " of course > > it's negative " . > > > > > > Gluten sensitivity is really very hereditary. If you > > were tested by > > blood test you should know that the only positive tests are > > end stage > > Celiac. Anything up to that point isn't diagnosed and > > will be > > considered negative. Stool tests are the only accurate > > tests for this > > and the best are at Enterolab.com and can be done by mail. > > If you had > > another test I would suggest that you not accept that > > diagnosis of > > negative and test again. > > > > > > Hang in. You sound just like I was before my gluten > > sensitive diagnosis. > > > > > > Arline > > > > > > Arline > > > > > > > > > > > > > > > > Ok, I know there are thousands and thousands of > > messages to > > > > go > > > > through, but I am feeling quite overwhelmed right > > now and > > > > not sure > > > > where to start.. I guess I'd like to start by > > sharing > > > > my experience > > > > and story. > > > > > > > > I am a 28 year old who is not overweight and I > > live a > > > > pretty active > > > > lifestyle. My problems started when I was 21 when > > I began > > > > tearing > > > > during intercourse at the entrance of the vaginal > > canal. I > > > > didn't > > > > think much of it. I'd have sex, let it heal > > and > > > > repeated that vicious > > > > cycle for a long time until I quit having > > intercourse. > > > > > > > > I finally mentioned it at my yearly exam to my > > physician > > > > who thought I > > > > might need surgery to make my opening bigger and > > then > > > > referred me to a > > > > terrible OB/GYN. My initial treatment was > > Estrogen cream. > > > > However, > > > > being 21, I was not into following up. After > > > > insurance/physician > > > > changes, every now and then over the years I > > would ask for > > > > a > > > > prescription for Estrogen cream for the treatment > > and > > > > doctors would > > > > happily write for it. I'd use it temporarily > > and > > > > that's what the fix > > > > was.......temporary. > > > > > > > > When I was 26, I started addressing this issue > > full force. > > > > I went to > > > > another terrible doctor who took one look and > > said LS and > > > > gave me > > > > Clobetasol. I left that physician and switched to > > my > > > > current doctor > > > > who is wonderful. She decided to biopsy. The > > biopsy > > > > didn't indicate > > > > any LS but did show an over production of > > squamous cells. > > > > She told me > > > > to continue with the Clobetasol and I did (like I > > was > > > > supposed to!). I > > > > have always been instructed to use a " pea > > size " > > > > amount. It > > > > worked.........for a while. > > > > > > > > Now I am married and can tolerate having sex once > > a month > > > > at the most. > > > > I have incredible pain and am tearing all over my > > labia and > > > > rectal > > > > area. I'm also having fusion. At my yearly > > exam in > > > > August, my doctor > > > > told me to start up with the Clobetasol and > > Estrogen > > > > again.. I tried > > > > it for a month with no results. I made a follow > > up > > > > appointment and she > > > > decided that it's LS based on appearance. She > > > > instructed me to stop > > > > with the Estrogen and go full force with the Clob > > for 3 > > > > weeks. I've > > > > been doing so and it's not getting any better > > as the 3 > > > > weeks are up on > > > > Tuesday. I'm being careful with my > > administration as I > > > > don't want the > > > > Clob to thin my skin, but it looks as if a I was > > clawed by > > > > a cat right > > > > now! > > > > > > > > I requested a test for Celiacs Disease.. I > > recently had an > > > > aunt > > > > diagnosed with it , but of course it's > > negative. > > > > I've had an > > > > infertility work up and my hormone levels are all > > fine. > > > > I've also been > > > > diagnosed with IBS and suffered from horrible > > fatigue and > > > > night sweats > > > > for years. I have an appointment with an > > immunologist next > > > > week in > > > > hopes that maybe there's an underlying > > disorder of some > > > > sort (sounds > > > > awful) that will explain all of this. I read one > > post about > > > > " not > > > > getting caught up with names " and I feel > > that it's > > > > great advice! I'm > > > > trying not to, but if there's something I can > > eliminate > > > > in my life to > > > > get rid of this, I want to! > > > > > > > > I'm desperate at this point! I am so worried > > about my > > > > future and how > > > > this condition is going to effect me. I have some > > questions > > > > that I > > > > would like to post, if anyone can elaborate and > > answer some > > > > of them, > > > > that would be great! Thank you all for your time > > on posting > > > > this > > > > wonderful information! > > > > > > > > 1. What can I put on these tears to help them > > heal? A & > > > > D? > > > > > > > > 2. How do people fair during pregnancy with this? > > Natural > > > > childbirth? > > > > > > > > 3. I work out intensely. Does excessive sweating > > have > > > > anything to do > > > > with this tearing? > > > > > > > > 4. Anything I need to communicate to the doctor > > that > > > > I'm not already > > > > doing so? > > > > > > > > Thanks again, > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE > > ORIGINAL POST, > > > > Thanks for your cooperation! ** > > > > > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hi , You DEFINITELY aren't insane--just sick and in pain and frustrated cuz you can't find answers. Whether you can get your insurance in the act depends upon your insurance. Often the insurance requires that you have a prescription for that particular lab from your doc but all too often they have already signed some sort of contract with local labs for certain common tests and since they consider the blood tests for celiac to be one of those, the docs can't ask for it I believe. If however you have a flex account, maybe your insurance is a notch better than others. If it would be positive for gluten sensitivity I would think that you would want to have the other tests. In fact if you had the money or insurance support having the first test which gives the whole Celiac Screen plus gene tests, plus milk protein sensitivity and can't remember for sure all of them, would be a really great idea. Also finding out which other foods you have sensitivities to--like bakers' and brewer's yeast, believed to be cause of Crohn's by many, tests for colitis gene, etc. might be something you would be interested in. It is really up to you. Also, if you are postive, you know the main problem and that is gluten. You must for the rest of your life do what you can never to eat it again because it is poison to you. It is that simple. It is poison to you. The gluten part is the one you most want to find the answer to. You can get well probably if it is positive and you stop eating it/and other immune reacting foods and often it doesn't take too long to feel better. It does depend upon how much damage has take place. Don't wait very long. I don't think there is any way under the stars that this is not your main problem from your symptoms. Arline Arline > > Subject: Re: HELP - Long post, Sorry! > To: VulvarDisorders > Date: Tuesday, October 28, 2008, 6:15 PM > Arline, > > Thanks for the load of information! The > allergist/immunologist I'm > seeing specializes more in the autoimmune side of things. > I've heard > he's diagnosed some amazing things.. I keep having > nightmares that he > won't be able to help me and he'll ask me what > I'm doing there. If > he's no additional help, I will definitely look into > ordering a test > from Enterolab. What are the next steps after taking one of > their tests? > > Also, is it possible to get those tests covered by > insurance? I'm sure > I could submit it to my flex account. > > I'm so glad I started participating in this group. I > joined months > ago, but never really looked at anything. For the first > time in a long > time, I don't feel insane! > > > > > > > > > > > Hi , > > > > > > > > Sorry for all your pain. > > > > > > > > You said: > > > > > > > > > " I requested a test for Celiacs > Disease.. I > > > recently had an aunt > > > > > diagnosed with it , but of course > it's > > > negative. " > > > > > > > > I am curious about why you said " of > course > > > it's negative " . > > > > > > > > Gluten sensitivity is really very > hereditary. If you > > > were tested by > > > blood test you should know that the only positive > tests are > > > end stage > > > Celiac. Anything up to that point isn't > diagnosed and > > > will be > > > considered negative. Stool tests are the only > accurate > > > tests for this > > > and the best are at Enterolab.com and can be done > by mail. > > > If you had > > > another test I would suggest that you not accept > that > > > diagnosis of > > > negative and test again. > > > > > > > > Hang in. You sound just like I was before my > gluten > > > sensitive diagnosis. > > > > > > > > Arline > > > > > > > > Arline > > > > > > > > > > > > > > > > > > > > > Ok, I know there are thousands and > thousands of > > > messages to > > > > > go > > > > > through, but I am feeling quite > overwhelmed right > > > now and > > > > > not sure > > > > > where to start.. I guess I'd like > to start by > > > sharing > > > > > my experience > > > > > and story. > > > > > > > > > > I am a 28 year old who is not > overweight and I > > > live a > > > > > pretty active > > > > > lifestyle. My problems started when I > was 21 when > > > I began > > > > > tearing > > > > > during intercourse at the entrance of > the vaginal > > > canal. I > > > > > didn't > > > > > think much of it. I'd have sex, let > it heal > > > and > > > > > repeated that vicious > > > > > cycle for a long time until I quit > having > > > intercourse. > > > > > > > > > > I finally mentioned it at my yearly > exam to my > > > physician > > > > > who thought I > > > > > might need surgery to make my opening > bigger and > > > then > > > > > referred me to a > > > > > terrible OB/GYN. My initial treatment > was > > > Estrogen cream. > > > > > However, > > > > > being 21, I was not into following up. > After > > > > > insurance/physician > > > > > changes, every now and then over the > years I > > > would ask for > > > > > a > > > > > prescription for Estrogen cream for the > treatment > > > and > > > > > doctors would > > > > > happily write for it. I'd use it > temporarily > > > and > > > > > that's what the fix > > > > > was.......temporary. > > > > > > > > > > When I was 26, I started addressing > this issue > > > full force. > > > > > I went to > > > > > another terrible doctor who took one > look and > > > said LS and > > > > > gave me > > > > > Clobetasol. I left that physician and > switched to > > > my > > > > > current doctor > > > > > who is wonderful. She decided to > biopsy. The > > > biopsy > > > > > didn't indicate > > > > > any LS but did show an over production > of > > > squamous cells. > > > > > She told me > > > > > to continue with the Clobetasol and I > did (like I > > > was > > > > > supposed to!). I > > > > > have always been instructed to use a > " pea > > > size " > > > > > amount. It > > > > > worked.........for a while. > > > > > > > > > > Now I am married and can tolerate > having sex once > > > a month > > > > > at the most. > > > > > I have incredible pain and am tearing > all over my > > > labia and > > > > > rectal > > > > > area. I'm also having fusion. At my > yearly > > > exam in > > > > > August, my doctor > > > > > told me to start up with the Clobetasol > and > > > Estrogen > > > > > again.. I tried > > > > > it for a month with no results. I made > a follow > > > up > > > > > appointment and she > > > > > decided that it's LS based on > appearance. She > > > > > instructed me to stop > > > > > with the Estrogen and go full force > with the Clob > > > for 3 > > > > > weeks. I've > > > > > been doing so and it's not getting > any better > > > as the 3 > > > > > weeks are up on > > > > > Tuesday. I'm being careful with my > > > administration as I > > > > > don't want the > > > > > Clob to thin my skin, but it looks as > if a I was > > > clawed by > > > > > a cat right > > > > > now! > > > > > > > > > > I requested a test for Celiacs > Disease.. I > > > recently had an > > > > > aunt > > > > > diagnosed with it , but of course > it's > > > negative. > > > > > I've had an > > > > > infertility work up and my hormone > levels are all > > > fine. > > > > > I've also been > > > > > diagnosed with IBS and suffered from > horrible > > > fatigue and > > > > > night sweats > > > > > for years. I have an appointment with > an > > > immunologist next > > > > > week in > > > > > hopes that maybe there's an > underlying > > > disorder of some > > > > > sort (sounds > > > > > awful) that will explain all of this. I > read one > > > post about > > > > > " not > > > > > getting caught up with names " and > I feel > > > that it's > > > > > great advice! I'm > > > > > trying not to, but if there's > something I can > > > eliminate > > > > > in my life to > > > > > get rid of this, I want to! > > > > > > > > > > I'm desperate at this point! I am > so worried > > > about my > > > > > future and how > > > > > this condition is going to effect me. I > have some > > > questions > > > > > that I > > > > > would like to post, if anyone can > elaborate and > > > answer some > > > > > of them, > > > > > that would be great! Thank you all for > your time > > > on posting > > > > > this > > > > > wonderful information! > > > > > > > > > > 1. What can I put on these tears to > help them > > > heal? A & > > > > > D? > > > > > > > > > > 2. How do people fair during pregnancy > with this? > > > Natural > > > > > childbirth? > > > > > > > > > > 3. I work out intensely. Does excessive > sweating > > > have > > > > > anything to do > > > > > with this tearing? > > > > > > > > > > 4. Anything I need to communicate to > the doctor > > > that > > > > > I'm not already > > > > > doing so? > > > > > > > > > > Thanks again, > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > **IF REPLYING TO THIS POST, PLEASE > REMOVE > > > ORIGINAL POST, > > > > > Thanks for your cooperation! ** > > > > > > > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I use a pea size amount of estrogen externally - have for over a year now. No ill effects. Some people taper back after they get better - I tried to taper back and got worse, so I learned my lesson! Melinda Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.