Discussions By Condition: Medical Stories

Lichen sclerosis?

Posted In: Medical Stories 14 Replies
  • Posted By: Anonymous
  • December 1, 2006
  • 06:25 AM

Today I visited the gynocologist for what i suspected to be a gential wort. it was in fact, that, but in addition to my HPV diagnosis, i was also informed that I almost undoubtedly have a rare condition called Lichen sclerosis.

Since I was about 15, I have noticed odd changes in and around my inner/outer labia. I did not suspect there was something wrong because i thought my genitals were just this way. I am now 24, and I have suffered from what I had been told as chronic yeast infections... too much sugar in my diet the clinic would tell me. Monthy, sometimes semi-monthly i would treat the "yeast infection" with an over the counter cream, and about a week later i would feel better, but sometimes i wouldn't. the cream would burn, and sometimes it was so bad i would have to call off work or refrain from daily activities.

upon doing the exam, i was asked if i ever have vaginal intching, i said yes. then i was asked if i sensation in my ***t. i said yes, but not a lot. i just thought i had a "small" ***t, or that it was not pronounced like others was. as it turns out i have scar tissue completely covering my entire clitoris, as well as the inner and outer labia, to where the skin has completely fused together. i also have dark almost purple spots around my inner labia. these are signs of severe lychens. since i had gone misdiagnosed for so many years, the scar tissue is irreversible.

i am going to get my biopsy in one month to confirm it is lychens, but it seems that it certainly must be, as these are the symptoms.

i am wondering if anyone has this, or can share some information with me about it. it is very rare, and the more i can learn the better. i am feeling very overwhelmed with a dual diagnosis of genital worts and this in just one day, esp. being that i am young, and just starting to really enjoy sex. i feel like my sex life has suddenly taken a serious turn. this is very hard. i am afraid my boyfriend may lose interest in me, because our sex life is for the most part pretty good. when i have lychens outbreaks (severe itching), we dont have sex of course, but i am afraid that i will have to do the cortisone treatments for the rest of my life. can this go away? i am happy to know that it is not chronic yeast infections, but this is quite sad.

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14 Replies:

  • i am male and find steriod creams very helpul - i have not had the diagnosos confirmed, but there is a good chance i have lichens...a lot of people think steroid creams should not be used long term but they are the only thing that i now of that helps and there are now studies (scandanavian) that suggest long term steroid use may be okall the best
    Anonymous 42,789 Replies
    • September 18, 2007
    • 02:59 PM
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  • I was diagnosed with lichen sclerosus et atrophicus about two weeks ago. I am in my mid fifties. I always had yeast infections and sensitive skin issues. I found out long ago before I was diagnosed use Drift when washing my clothes and not put dryer sheets in the dryer. I found out long ago to wear cotton panties, UGH, but best for yeast infections. I don't spray on perfume much and scented body lotions are out. Now that I have been diagnosed with litchen, I am, like you looking for information. I am looking for connections in ways we are all alike. I am discovering from some that they have had yeast infections. So from this I am going to eat lots of yogurt and maybe get some asodopholus(sp) like I took many, many years ago. Since the years have added up, the pounds have also. I am exerciting and have lost 18 pounds. I am also trying to watch what goes into my body, but not completely as strict as I need to be, but cutting back. I have read from others that my case of lichen is not near as bad as others. My litchen is on my stomach area and my legs for now. I went to my ob gyn again last week for another examination since the diagnosis and was told all looked normal for which I am thankful. I truly think more are walking around with this condition and just don't know what they have. Good Luck to you and know that others are living with it too.
    Anonymous 42,789 Replies
    • January 24, 2008
    • 02:00 PM
    • 0
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  • My mother has lichen planus and my daughter has lichen sclerosis (aka LSA). Fortunately we found a dermatologist who has made it her mission to research and treat those with this horrible stuff. Her name is Dr. Libby Edwards and she is located in Charlotte, NC. My daughter also was diagnosed with posterior hymen and vaginal septum which surgery was able to fix. The posterior hymen and septum was blocking the natural flow of discharge from her vagina and was making her flare-up more frequently. Since the surgery, she flares-up less (maybe once a month). Our OB/GYN doctor said that the symptoms are usually worse in premenstrual girls, and post-menopausal women. Also, I did find that the one thing that would always cause a flare-up was using fabric softener or dryer sheets (of any kind!) I wash her undergarments separately, and use only "All Free" then rinse twice. Oh, and only "Dove for sensitive skin soap" in the shower. Good luck and keep searching - I know I am!
    Hoopsmom 1 Replies
    • January 25, 2008
    • 03:54 PM
    • 0
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  • I have just been diagnosed with Lichen Sclerosis...My story:I'm 29 years old and have complained for 4 years about problems down there such as painful intercourse and itching.My family doc said I just had 'thin skin' and brushed it off every time - for 4 YEARS!!It wasn't until after I had a baby, and after not seeing 'down there' for months - my OB discovered that in a short time, my labia and parts have been absorbed and have disappeared...I seen a dermatologist and got steroid creme, which should help from now on.But - as you can guess I am outraged that this wasn't diagnosed years ago and my 'parts' could have been 'saved'...I am very outraged with my family doc!!!I now feel like my sexual enjoyment is in the past.My clitoris is almost completely covered and though I cannot have intercourse yet, again just had a baby - I really fear that I will never enjoy it again.
    Anonymous 42,789 Replies
    • September 22, 2008
    • 08:55 PM
    • 0
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  • Today I visited the gynocologist for what i suspected to be a gential wort. it was in fact, that, but in addition to my HPV diagnosis, i was also informed that I almost undoubtedly have a rare condition called Lichen sclerosis. Since I was about 15, I have noticed odd changes in and around my inner/outer labia. I did not suspect there was something wrong because i thought my genitals were just this way. I am now 24, and I have suffered from what I had been told as chronic yeast infections... too much sugar in my diet the clinic would tell me. Monthy, sometimes semi-monthly i would treat the "yeast infection" with an over the counter cream, and about a week later i would feel better, but sometimes i wouldn't. the cream would burn, and sometimes it was so bad i would have to call off work or refrain from daily activities. upon doing the exam, i was asked if i ever have vaginal intching, i said yes. then i was asked if i sensation in my ***t. i said yes, but not a lot. i just thought i had a "small" ***t, or that it was not pronounced like others was. as it turns out i have scar tissue completely covering my entire clitoris, as well as the inner and outer labia, to where the skin has completely fused together. i also have dark almost purple spots around my inner labia. these are signs of severe lychens. since i had gone misdiagnosed for so many years, the scar tissue is irreversible. i am going to get my biopsy in one month to confirm it is lychens, but it seems that it certainly must be, as these are the symptoms. i am wondering if anyone has this, or can share some information with me about it. it is very rare, and the more i can learn the better. i am feeling very overwhelmed with a dual diagnosis of genital worts and this in just one day, esp. being that i am young, and just starting to really enjoy sex. i feel like my sex life has suddenly taken a serious turn. this is very hard. i am afraid my boyfriend may lose interest in me, because our sex life is for the most part pretty good. when i have lychens outbreaks (severe itching), we dont have sex of course, but i am afraid that i will have to do the cortisone treatments for the rest of my life. can this go away? i am happy to know that it is not chronic yeast infections, but this is quite sad.***In response to the scar tissue being irreversible it IS reversible. I have had LS since I was 3 I am now 28. EMU OIL works miracles it will heal your scar tissue. Dr's will prescribe you cortizone cream which will thin the skin more causing further tearing. I have also thought that I have had chronic yeast infections as well and it is all linked to LS. I find using apple cider vinegar on a cotton pad soaked in water applied on the outside of the vagina and vulva really helps as well as taking a high quality probiotic and watching how much sugar you consume. Try the emu oil believe me it's amazing, I apply it everyday even though my scar tissue and blood blisters have healed it's a continuous battle. As for the sex...I feel your pain but you have to be careful and not push it when you're sore, torn or have blood blisters refrain from sex just apply that emu oil like crazy and try positive visualization I visualize light surrounding my ***t area and anywhere else that is torn, sore, etc and picture the light surrounding and healing. Good luck
    Anonymous 42,789 Replies
    • February 13, 2010
    • 03:24 AM
    • 0
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  • I have just been diagnosed with Lichen Sclerosis...My story:I'm 29 years old and have complained for 4 years about problems down there such as painful intercourse and itching.My family doc said I just had 'thin skin' and brushed it off every time - for 4 YEARS!!It wasn't until after I had a baby, and after not seeing 'down there' for months - my OB discovered that in a short time, my labia and parts have been absorbed and have disappeared...I seen a dermatologist and got steroid creme, which should help from now on.But - as you can guess I am outraged that this wasn't diagnosed years ago and my 'parts' could have been 'saved'...I am very outraged with my family doc!!!I now feel like my sexual enjoyment is in the past.My clitoris is almost completely covered and though I cannot have intercourse yet, again just had a baby - I really fear that I will never enjoy it again.Hi,i am very interested in your story. like you i have a yound baby (now 1 year old), yesterday i was told that i have Lichen Sclerosis. and that my clitoris is covered. i was devasted. i had thought since having the baby that i was just suffering from normal post baby stuff, dryness and some discomfort with intercourse - so i asked my doctor..in the time it has taken for someone to recognise what this actually is i feel it has proabably gotten much worse than it needed too, to the point now when yesterday this doctor has told me i have no clitoris..its gone...i like you fear that i will never enjoy intercourse again.what i want to know is can you ever get it back?? the doctor made it sound like once things are gone they are gone - like my body has eaten it up and its never to be found again..i can find no info on whether people who have this have manged to enjoy a good sex life after?? will i be able to have another baby?? will pregnancy make it worse??? I'm only 29 and i feel too young to give up on a good healthy sex life...
    Anonymous 42,789 Replies Flag this Response
  • Hi,i am very interested in your story. like you i have a yound baby (now 1 year old), yesterday i was told that i have Lichen Sclerosis. and that my clitoris is covered. i was devasted. i had thought since having the baby that i was just suffering from normal post baby stuff, dryness and some discomfort with intercourse - so i asked my doctor..in the time it has taken for someone to recognise what this actually is i feel it has proabably gotten much worse than it needed too, to the point now when yesterday this doctor has told me i have no clitoris..its gone...i like you fear that i will never enjoy intercourse again.what i want to know is can you ever get it back?? the doctor made it sound like once things are gone they are gone - like my body has eaten it up and its never to be found again..i can find no info on whether people who have this have manged to enjoy a good sex life after?? will i be able to have another baby?? will pregnancy make it worse??? I'm only 29 and i feel too young to give up on a good healthy sex life...I used baking soda... you have nothing to lose... just good ole Arm & Hammer Baking soda... but you must be patient... in the morning wash and apply a gentle coat... then watch the reaction... try it off and on... it will take some time and itch at first but be patient.
    Anonymous 42,789 Replies Flag this Response
  • Hi,i am very interested in your story. like you i have a yound baby (now 1 year old), yesterday i was told that i have Lichen Sclerosis. and that my clitoris is covered. i was devasted. i had thought since having the baby that i was just suffering from normal post baby stuff, dryness and some discomfort with intercourse - so i asked my doctor..in the time it has taken for someone to recognise what this actually is i feel it has proabably gotten much worse than it needed too, to the point now when yesterday this doctor has told me i have no clitoris..its gone...i like you fear that i will never enjoy intercourse again.what i want to know is can you ever get it back?? the doctor made it sound like once things are gone they are gone - like my body has eaten it up and its never to be found again..i can find no info on whether people who have this have manged to enjoy a good sex life after?? will i be able to have another baby?? will pregnancy make it worse??? I'm only 29 and i feel too young to give up on a good healthy sex life...In case no one has responded to yet about this problem, I wanted to offer you some hope. Lichen Sclerosis can be treated (though probably not cured). I have the same condition as you, which was never diagnosed by any of my OBGYNs, and I never realized my clitoris was completely obscured until I visited a sexual health clinic because of tight pelvic floor muscles causing pain with intercourse. At that time I was informed of two other conditions that I had not been aware of, vestibulitis and lichen sclerosis. I have been using a steroid cream called clobetasol on and off for a few years, and it helps thin the skin and combat the thickening and tightening that occurs over time. It has helped to some degree, but not completely since my case is rather severe. I recently had another evaluation to explore surgical options and was scheduled for a dorsal slit incision procedure which basically creates an opening in the skin for the clitoris to be able to emerge. Apparently this procedure is not too uncommon and is successful in about 90% of cases.My suggestion to you would be to locate a sexual health clinic or even a urology specialist since the two disciplines are related.
    Anonymous 42,789 Replies
    • October 1, 2010
    • 00:49 AM
    • 0
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  • [hi i too have LS and have severly suffered also , i actually thought it was an STD before was diagnosed but a smear confirmed LS i use aquaous cream instead of soap which helps and cortisone cream but my flare ups are agony , i too can't do normal day to day things and am esp bad when on my period my skin round vulva peels off , i rip on vagina and anus sex is a no go zone aswell at this time , actually if he(my husband) even tried it on when im like this i'd prob rip it off lol , but i get very regular water infections to the point i pass blood in my water and can even stand . So yes i do understand what your going through especially being young , im 28 and it definately holds me back a lot , i hope you dont now feel so alone in this now , its the worst thing ever .
    Anonymous 42,789 Replies
    • December 12, 2010
    • 06:30 PM
    • 0
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  • I just had to post about the miracle oil I have just recently found for LichenSclerosis...and I'll tell you right up front...it's Emu Oil.I was just reading natural healing testimonials on another website about 3 weeksago...and one just happened to be about Lichen Sclerosis. I was really surprisedbecause you just don't hear much about Lichen Sclerosis, period.But I was diagnosed with it in the mid 90's after a hysterectomy and was told atVanderbilt in Nashville...that it is usually the result of a hormonal imbalanceafter menopause...but 'can' occur at any time from teens on.All I know for sure is that it can be one of the most miserable and painful afflictions to affect a woman.When I went to Vanderbilt in the 90's..we went there on our own because we live only3 hours away & here I was told there was nothing that could be done, no hope of evenremission...and that I'd just have to learn to live with the pain. Not one to lookat things in a negative fashion...and being desperate for relief...we called andgot me in with the Gynecology Division of Vanderbilt. The doctor there told meI had one of the worst cases he had ever seen...but it was NOT impossible to turnit around. He prescribed a steriod cream...told me I would be in good shape within2 weeks...but I'd have to use the steriod cream for the rest of my life.Well...I 'was' totally cleared up within 2 weeks...but the doctor had also told methat the cream would eventually cause a thinning of the skin in that area and painmay come back from easy tears or whatever. I was about 50 at the time...so In thelast couple of years...I had begun to notice a thinning of the skin in that area...and a very slight burn that was there often...I thought "Oh my goodness...I justcan't even begin to imagine going through that pain again."About 3 weeks ago I was just reading those testimonials...just really piddling ona very rainy day...and noticed a testimonial about a Lichen Sclerosis 'cure'.I couldn't click on it fast enough. The poster was telling how she had used EmuOil to just completely cure her Lichen Sclerosis and do it within days.So I typed in Lichen Sclerosis + Emu Oil and found other testimonials stating thesame thing.I remembered having a tiny bottle of Emu Oil that we had had for about 10 years.Never even used the stuff. Just saw it and got it. So I dug it out...wondering ifafter 10 years it had lost it's potency. I used it every hour for the rest of theday. Within 24 hours...all burning was totally gone. Within 3 days...the 'toad type skin' that develops after years of Lichen Sclerosis began to peel away. Withinanother couple of days...all the toad skin was gone...and the area is as slick andnormal as a baby's bottom. Now those of you who have had Lichen Sclerosis long enough to develop that 'toad skin'...know...that that is a miracle in itself. Iwas just absolutely shocked beyond words when that toad skin started peeling awayafter just 3 days...and was gone in another couple.I had Purple Emu Oil...and I have since ordered a huge bottle of it. I never everwant to be without the stuff. I read other testimonials about it for wrinkles, etc...and started using it on the backs of my hands...(I'm 61 and a little wrinklyon my hands)...I couldn't believe what it did for my hands in just a couple of days.I have virtually no wrinkles on my face but used it there anyway...and the textureof my face is even smoother and healthier looking than it was before...and I wasalways getting compliments on my skin...but it is remarkably even better now.We have an elderly lady at our church that had been complaining of a diabetic soreon her ankle for a couple of years. She said the doctor has tried about 4 or 5'salves' :-) on it but nothing will heal it. I took her a little bit in one ofthose little white plastic pill boxes that are about the size of a quarter and askedher to use it every hour all day long. She has had me order more for 'her'...shesaid it started healing by the end of the first day...she was absolutely amazed and couldn't thank me enough.There are many Emu Oil products out there...and maybe they're all good...but I'msticking with the Purple Emu Oil...and it is 100% refined with nothing else in it.Hope all of you suffering from this dreaded and very dibilitating affliction willcall today and get your Emu Oil...on the way. (from any reliable company)At our little country church...I'm always in charge of Mother's Day gifts, etc forall occasions. So I've ordered enough to give each mother a little container ofthe Emu Oil....it really works that fast and that good...that just a little dab...used a few times within 24 hours...will show you a big difference.The web site I've ordered from ishttp://www.purpleemu.comI have no affiliation with this company at all...but I am stocking up on this stufflike there is no tomorrow. And all of you who suffer from Lichen Sclerosis willtotally understand why I say that.I haven't posted in months...just never even read on curezone any more...but I knewthere was a Lichen Sclerosis forum and I just had to tell you all about the Emu Oil.I'll watch for a few days to see if anyone else has already tried it.Miracles happen for those who believe....yahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhI KNEW there had to be a remedy out there that would turn this horrible conditiontotally around and there was!!!Love and Blessings to all,kathryn
    Anonymous 42,789 Replies Flag this Response
  • The Europeans are linking a form of lymes disease to lichen sclerosis. I was diagnosed 3 years ago before I was diagnosed with hypothyroidism and then finally fibromyalgia. A great doctor/rheumatologist is running tests now. He mentioned the connections these all have and that the Europeans are linking it all better than here I'm the US.Read the link below and lookup lymes disease and lichen sclerosis.http://www.canlyme.com/lichen_sclerosus.html
    Anonymous 42,789 Replies Flag this Response
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  • To both of you ladies I would like to say, I am so sorry and so sad that you have had this experience. I am angry that the medical profession has not invested time and resoursourses to education each other about this issue to increase accurate diagnosis, and to find a cure. Can you imagine what an uproar would be going on if men were losing their penises?!? With all the money that is spent on erectile disfunction it is shameful that we are not doing something to ensure that women can remain sexually active.I intend to bring this issue to the press and try to get our voices heard. If you feel the same way, please contact me at sacredsensual@yahoo and perhaps we can get something started.Please seek out, or create a Lichens Sclerosis support group in your area and get the help of a sex-positive therapist (you would be surprised how many of them do not think that sex is that important, products as they are of their culture and training). Your loss is real and will affect your life, your relationships, your self-esteem. I am a sex educator and relationship coach and I see the issues that sexual disability can on an almost daily basis.Although orgasm is 80% related to having a clitoris, it is still possible to enjoy sex, and I recommend that you and your partner seek out a reputable sex educator or coach - possibly still illegal in your state - Many times they will advertise as Tantra teachers or Sacred Sexual Healers.Good luck and God bless,Gabriella CordovaGood luck and Hi,i am very interested in your story. like you i have a yound baby (now 1 year old), yesterday i was told that i have Lichen Sclerosis. and that my clitoris is covered. i was devasted. i had thought since having the baby that i was just suffering from normal post baby stuff, dryness and some discomfort with intercourse - so i asked my doctor..in the time it has taken for someone to recognise what this actually is i feel it has proabably gotten much worse than it needed too, to the point now when yesterday this doctor has told me i have no clitoris..its gone...i like you fear that i will never enjoy intercourse again.what i want to know is can you ever get it back?? the doctor made it sound like once things are gone they are gone - like my body has eaten it up and its never to be found again..i can find no info on whether people who have this have manged to enjoy a good sex life after?? will i be able to have another baby?? will pregnancy make it worse??? I'm only 29 and i feel too young to give up on a good healthy sex life...
    Anonymous 42,789 Replies Flag this Response
  • hi i do not even remember when i started to realize that something was not right down there. but it was not that long ago i am a 18 year old girl,but it did bother me that i had skin that was whiter than the rest of my skin on my down there so i tried to tell my doctor but she ignored me so i have not mentioned it again and i pretty much researched and am 99.999999 percent sure that i have lichen sclerosus, i have been haveing very low self esteem and am just plane embarrassed i dont really want to go to my dr even though i need to. i do not have bruising or pain its just skin color difference. but eaither way it freaked me out when i realized and i even cried and am still pretty depressed about the situation, am i the only one that thinks its a big deal i mean i have even read that its a slight chance but possible that it could lead to skin cancer i had to cry some more tell me im not the only one whos confidence level went through the floor
    haleysabrina2012 1 Replies
    • December 22, 2012
    • 08:03 AM
    • 0
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  • Lichen sclerosus is not contagious so you really need not worry about your bf. Men can have surgery for it easily - get circumsized. Women are not so lucky. I don't think it's as rare as you think.Good luck!
    MyraMaines58 2 Replies
    • December 31, 2012
    • 09:36 AM
    • 0
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